Today is

I just had a tumor removed from inside the pituitary at cleveland clinic (which I highly recommend).

My drs locally had poo-pooed any endocrine problem until i insisted on further testing - not just thyroid.

Within 6 months i had gained 40 lbs, had other symptoms and was diagnosed. I feel lucky that it wasn't the years that some people have gone through, although

I am sure my steady weight gain over the past few years could be attributed to cushings. It was only this year though that other symptoms were full blown.

Be your own advocate.

Labels: bios, lmn1220, pituitary

I am 38 and had three transphenoidal surgeries for Cushing's.

I had a CSF leak with the 2nd and when they went in to repair it and look for more tumor my remaining pituitary gland was necrotic and I lost the whole gland.

That did not cure my Cushing's so I went on to have a laproscopic adrenalectomy followed quickly by galbladderproblems and appendicitis. Dr. Ludlan, Deleshaw and Sheppard at OHSU worked with me. I had my pituitary surgeries in 03 and my adrenals and other 2 surgeries in 04.

I have not been able to return to work as a nurse and feel thie surgeries have greatly reduced my quality of life. I would love tro talk with other people.

I have two adopted kids from China as a single mom who are 12 and 13.

I know have problems with fibromyalgia and arthritis.

Email Mary

Labels: bios, fibromyalgia, Mary, pituitary, steroids

Diagnosed with Cushing's last March (at 39) after years of illness, weight gain, depression, etc.

Had surgery August 2008 to removed pituitary tumour. Off all meds but still tired and sore.

Still seeing consultant.

Email Shirley

Labels: bios, pituitary, Shirley2

I was diagnosed with cushings in november 2008 and just had my pituitary tumor removed on June 3rd 2009.

I am on steriods right now and doing okay. Im trying to lower the dose and it is causes me to feel so sick. My endo is great and basically knew what I had on ,y first visit to see him.

After testing he confirmed cushings and has been great the whole process...

i hope things go back to normal soon

Email Dina

Labels: bios, Dina2, pituitary

I've fought weight since I got out of high school but was pretty healthy otherwise. BP was normal and I had no problems keeping up with my friends even when I hit 350 lbs.

After years of failing at diets, and months of research, I decided to have gastric bypass surgery. I had the GBP in Dec 2006, lost 125 pounds in the first 8 months and then plateaued and 225. I admit, I had gotten lazy and wasn't really trying to lose or following the GBP "rules".

A little over a year later (Mar 2008), I developed insomnia. I just woke up between 4 and 4:30 am and I was going to bed around 12:30-1am. If I went to bed earlier, I just woke up earlier. Over the past year, 4 hours of sleep is about the norm. Next came crazy sugar cravings. Those are bad because too much sugar makes me horribly ill (GBP). I developed hand tremors and was sent to neurology who evaluated me for Parkinsons or something similar. They ruled out anything like that and said it was an "essential tremor" that some people get so I just deal with that. My edema was horrible some days. My ankles would be 3 inches larger around than normal. My hair started falling out. This was the second round. The first was about 5 months post surgery when I lost about 1/4 of my hair (common after GBP surgery). I just attributed this second round to some recent nutritional issue related to the surgery. I started bruising easier, my periods (which had been infrequent) went away totally, and my memory, concentration, and coordination went into the toilet.

My symptoms popped up one at a time so my PCP treated them individually. At this point, I was taking metformin for hyperinsulinemia (3 years+), lasix, prilosec (from the GBP), and wellbutrin. I had asked for something to help with the agitation I felt constantly, which was manifesting itself in road rage and it essentially blunts all emotions for me. He attributed most of the symptoms to the insomnia (memory, concentration, coordination, tremors), which wasn't unrealistic because they were worse on days where I only got 2.5-3.5 hours of sleep. He couldn't find a medical reason (at the time) for the insomnia, so he sent me to a shrink. All he asked was if I was under a lot of stress and if I had thoughts of killing myself. He had such a horrible "bedside manor" that I wanted to after 10 minutes with him.

In November, my thyroid tested low and I was put on Armour thyroid hormone. It didn't do anything for me. I suddenly lost almost all strength in my left thigh. If I was carrying anything at all, I had to take stairs by going up with my right leg and bringing my left up to meet it. It would give out if I put weight on it while bending at the knee. This was hard to deal with because I had been able to carry at least 50 pounds up the stairs when I was at my heaviest. My weight was still steady at 225, even over the holidays when I ate too much junk. I started having double vision and had an MRI to look for a brain tumor. It was clean. I started having high bp readings. Typical was 130/85 but it was 160/110 one day at the doctors. My T3, T4, and TSH were all low. The PCP said that they all should be normal (from the Armour thyroid med), but if T3 and T4 were low, then the TSH should have been high, which it wasn't. I had started eating healthy and following my GBP rules. My caloric intake was about 800-900 calories per day, max. After a couple of months, I started gaining weight. From Mar to mid May, I had gained 45 pounds. I went to my varicose vein doctor and my edema was so bad she wouldn't do the treatment. She made me promise to see a doctor immediately. Mine was booked but I got in to see his wife and I had gained 15 pounds in the past 2 weeks! I can't eat enough food to explain that and it alarmed her. I had been keeping a record of my symptoms and I showed it to her so she would have some context for evaluating the edema instead of just giving me a pill. She saw I wasn't menstruating and saw that my hormones were normal indicating I wasn't menopausal (I'm not quite yet 40 yrs old). She immediately said that needed to be addressed. Maybe it was a red flag to her being female but my PCP had never brought it up with me. She read over the list and said that I probably had a pituitary problem.

She scheduled for another MRI and an appointment with an endo following that. The endo said the MRI showed a small tumor. She had tested me 3 years earlier for hypocortisolism and it had been negative but she had me do another. I saw a neurosurgeon who got my results and said the cortisol level was "quite high". He ordered a second 24 hour urine test for verification and a dexamethasone suppression test. The dexamethasone test showed that the morning level was very high which indicates (I believe) that the cortisol overproduction is caused by a tumor and not the adrenals. The other results should be in today (June 29) and he will decide to operate based on that.

I guess I'm lucky if you want to call it that. If the cortisol test 3 years ago was really normal, I've had Cushing's for between about 2-3 years. I've had some problems longer than that, but I've read a lot of posts where people had symptoms but tested negative. In any case, I haven't had to fight anyone about this. Sure my PCP was slow and ultimately wasn't the one who diagnosed it, but he was trying. He said he had never had a patient with Cushing's so it had never even crossed his mind. I think that if he had seen everything at once with fresh eyes, he might at least thought pituitary since it controls so many things.

I am so eager to get this taken care of. I am sure this all sounds familiar. I constantly feel on edge, I can't relax, my double vision (which may be unrelated) is very bad. It causes vertigo and horrible headaches. I don't know how common the bone weakening is but I am already at risk because of poor calcium absorption from the GBP. I am afraid that between being clutzy, the double vision and the leg weakness, I'll fall and break something. My bp is borderline high. My blood sugar has dropped below 20 a few times and I thought I was going to pass out. I read that cushings can cause susceptibility to fungal infections, "unusual" infections, and "opportunistic" infections, such as pneumonia. My boss had pneumonia so I avoided him as much as I could. A small dark patch on my shoulder had been diagnosed as a fungus related to ringworm before I had heard of cushings. Then last week, I developed painful knots in my arm and it all turned red. It was cellulitis. The doctor said if the antibiotics didn't make it better by the next day that I needed to go to the ER and get on IV antibiotics. Luckily, it got better. I had an EMG, which showed some nerve damage in my left leg but not enough to cause the weakness. That doctor said Cushing's could cause it but it was unusual for it to occur only on one side. We'll see if it goes away after surgery.

I've been pushing through all of this as best as I can and have been carrying on like normal, albeit slower, weaker, in constant pain, and with poor memory. It hasn't gotten debilitating like with some people so I consider myself lucky. It seems like a lot of the symptoms are just seen by people as "annoyances" or worse, in my head. At least the edema and bp of 160/110 were serious enough to get attention. I have a great job in a research lab with extreme flexibility but I was still concerned that my coworkers and boss might think that I've been a whiny baby and was just making stuff up. You can't prove you have double vision or how fatigued and horrible you feel. Then again, I had a friend/coworker say that I must be feeling better one day because "the dark circles under my eyes weren't quite as dark as usual". HaHa!! Now I feel vindicated because you can't fake brain surgery :-) After reading so many stories, I am thankful that I got doctors that are very open to considering all possible causes of the symptoms. Even though it took a while, at least I wasn't getting the runaround and my PCP was addressing things to the best of his ability. My neurosurgeon is at the University of Michigan and only does pituitary operations (2000+). The endo he is consulting with (not the original), has a special interest in Cushing's. I guess I am also lucky to be in good hands. The neurosurgeon has been emailing me to keep me up to date on test results. I just hope everything goes as planned and I get this removed in the next couple of weeks.

Email Angela

Labels: Angela, bios, gastric bypass, pituitary

Hi, my name is Aly and I am a 26 year old from NY.

I have been dealing with cushing's for the past 4 years. Like most suffering from cushing's, I went to a handful of different doctors who ordered test after test to try and get a definitive diagnosis.

I would hear the same line over and over again from the doctors I would see “I think you have Cushing’s but I would like you to see another doctor to confirm findings.” I have seen at least 10 different doctors during this nightmare. Might I add that during my treatment/diagnosis process, 3 of the doctors left & moved away from the practices where I was seeing them. So I was forced to start over with new doctors and go back to square one.

Within the past month I have found amazing doctor’s at Mt. Sinai Medical Center in NYC and within a few weeks of my initial consult I was scheduled (and completed) Petrosal Sinus Sampling. Those results just came back and showed to have positive findings so the doctor now feels we are good to go for surgery. When I heard the words that the doctor was ready to do surgery

I felt like the weight of the world was lifted off my shoulders. A glimmer of hope is now in my future. We are hoping to plan the surgery as soon as possible.

For anyone who feels like there is no hope or that the road is never ending, keep going and fighting and you will make it to the end of the rainbow.

Email Aly

Labels: Aly2, bios, pituitary

I had a tumor spotted on my MRI by Dr. Ludlam after a year of doctors telling me I had every other kind of problem you can think of.

After a year and a half of testing, Dr. Mayberg removed the tumor. I was getting better, but progress stalled at about a year after surgery. 18 months after surgery all of my pre-surgery symptoms suddenly re-appeared and are rapidly getting worse.

A new MRI doesn't show anything. More testing ahead.

I am not happy about any of it.

Email Robert

Labels: bios, pituitary, Robert

Hi, I've been trying for 2 1/2 years to get a good diagnosis so that I may start treatment for what my Dr's are currently calling probable cyclical cushing's disease.

I actually think my symptoms started about two years after I had my son (he was born in 2000). I first started gaining weight, had several stress fractures in my feet, and had severe headaches. Up until 2007, I had gained about 30 lbs ( I had lost all my "baby weight"). I had hypertension really since before I was pregnant with my son, but it was mild and was not treated until I was pregnant. It was controlled for years after with one medicine and I had been able to get off the medicine with diet and exercise.

Then starting in early 2007, I developed severe edema, uncontrolled hypertension up to 198/111, and I was feeling anxious and felt like I was going to die. I was treated with a combination of different medications all for my blood pressure.

Initially, they did a 24 h cortisol test for and it was normal, so it was dismissed as a cause. They tested me many times for a pheo, renal artery stenosis, etc. All the wile my symptoms kept getting worse. I had flushing, sweating, osteopenia, rib fractures with no trauma.

Then starting last summer 6/08 I started rapidly gaining weight and have gained 100 pounds since last summer. I eat a very healthy diet, and did exercise all the time. I was on a cycling team with my work and was riding about 70 miles a week. I had to stop that last spring because I was so short of breath and gould not keep up with my team. I now have stretch marks on my abdomen, hips and under my arms. I have gained most of my weight in the abdomen and neck and chest. I have the "buffalo hump" and still have edema despite being on 3 different diuretics 2x per day along with other blood pressure medications. My muscles feel so weak, it's hard to get up and down the stairs I have double vision and do have a pituitary microadenoma documented on dynamic MRI.

I went to the Mayo clinic last fall and was seen by one Endocrinologist who was sure I had Cushing's. He felt that since my cortisol levels were not high enough that I may have Cyclical Cushing's. He recently has spoken to my Family Dr who is trying to help me. The two local endocrinologists have been a disappointment to me. They seem to know much more about Diabetes and Thyroid.

According to the new Guidelines for Diagnosing Cushing's(NIH), my Dex Supp test is positive, but the endo Dr does not want to go by the new guideline since it is only 1 1/2 years old. She wants to retest me in August and also repeat my MRI to see if the pituitary adenoma has grown.

Until then, I have to keep waiting and trying to deal with the increasing symptoms. My Fam Dr may help me do some mpre testing in between to be more aggressive. I am trying to learn all I can so that I can help my Dr's so they can help get me well!

Labels: Anita, bios, pituitary

30 yof who was dx in April of 2009 with Congestive Heart Failure (CHF), one week later Diabetes, and one week later Cushings.

Doc says CHF and diabetes are secondary to Cushings and should go away after sx. Had numerous tests done to locate the tumor with no avail.

Took going to NIH to locate the tumor which is 7 mm and on my pituitary.

Surgery is scheduled for 7-29-09. Suggested to my doctor a few years ago that I had cushings...the weight gain, lack of a monthly cycle, infertility ( they told me I had PCOS after already having a child), etc.

They told me I had been reading too many books and that I did not have Cushings, it was too rare. I would love to see that doctor again after sx with all my records and tell her what a big mistake!!

Never assume anything just because it is "rare". Can't wait to get my life back. The last few years have been awful!

Email Michelle

Labels: bios, diabetes, Michelle4, NIH, PCOS, pituitary

9-07 SURGERY: 1’ colon removed (pre-cancerous tumor removed)
10-07 SYMPTOMS STARTED: hundreds of daily: “pops” in neck, stabbing pains in base of skull, throat, shoulder, with hundreds of random screams daily for months
1-08 BODY JOLTS START: myoclonic jerks and involuntary movements - mostly when relaxed. These come with or without loud screams, gasps or other vocal noises. They movements and screams are ongoing and continue to get stronger.
2-08 MOUTH/JAW/TONGUE: randomly the tongue tingles, the jaw & cheek have pain, the mouth, tongue or teeth get ice cold, the mouth waters for hours. This is ongoing.
4-08 MUSCLE TWITCHES: randomly, different muscles twitch, hundreds of times daily (like body is making popcorn). This is ongoing.
8-08 KNEE POPS: just like neck, initially, it pops and has pain hundred of times daily. This is ongoing.
9-08 FATIGUE: have less strength and stamina after a few hours of work. This is ongoing.
5-09 DIAGNOSED: small tumor on pituitary and high cortisol level. Scheduled for surgery at Mayo in July.

My symptoms all started after a major surgery, so I thought something, like a pinched nerved happened during surgery or something to do with surgery, but doctors kept saying not possible. (I have since found out that surgery can trigger a dormant disease.)

Since my symptoms initially seemed like nerve or muscle problems, I spent several months trying the chiropractor, physical therapy, ibuprofen, hot packs, MRI’s EMG, steroid shots, alpha-stim treatments, and different pain killers. Nothing helped. The different neurologists couldn’t find anything wrong and thought maybe it was stress/anxiety/depression even though I told them it wasn’t. I even went on relaxing vacations and tried depression pills with no improvement. We continued with different blood test throughout 2008-09.

One day when I put on a necklace and it was too small, I knew I had gained too much weight (25lb in 1.5 yrs). I started a diet, but found that my pulse rate would get way too high. I mentioned the weight gain and suggested checking the endocrine system to my doctor. So I did a urine test and the cortisol level came back high and we pursued that direction and Cushing’s was diagnosed.

The above symptoms were the most severe ones. There were alot of strange symptoms that came and went but the ones listed above were the main complaints. Most of my symptoms do not seem to be typical of Cushing’s, so I hope that is the only problem I have and that surgery will take care of it.

I would be very curious to hear if anyone else has had these types of symptoms. Now that I look at Cushing’s symptoms, there are several that apply and most were never mentioned to the doctor as we tried to find a diagnosis, such as:

Weight gain, Fatigue, Muscle weakness, Rounding face, Easily bruised, Slow healing of cuts, insect bites and infections, Acne

Labels: bios, Lory, pituitary

Well, I was first diagnosed in 1990 after a year of tests and years of symptoms which I put down to my age (early 20s!!). I had a TSA to remove the pituitary tumour and was put on replacement therapy with steroids.

I lost LOADS of weight and felt better within days of the op. I felt I carried on improving for about 4 or 5 years post-surgery then felt 'normal'.

But about 3 or 4 years ago now I started getting symptoms again. I didn't know it then, but looking back now I know I did. I had cut down my steroids a little but my consultant's team didn't think it was anything important. I cut down again 2 years ago and again they didn't think it mattered. At Christmas I cut down to 5mg of hydrocortisone a day in the morning. My GP wrote to my consultant to say I thought I wasn't getting enough steroid and they were going to admit me for a day curve, but the paperwork never got done.

I chased this all up 2 weeks ago and have now been off all steroids for 2 weeks, have had a short synacthen with levels of steroid showing prior to the synacthen, 3 24 hour cortisols results awaited and a midnight Dexamethasone suppression results awaited.

It seems that my Cushing's has recurred after 18 years.

Update June 3, 2009

3 June 2009 - I have now had short Synacthen. My basal cortisol was in excess of 700 and after the synacthen went to over 1000. I have also had 3 high 24 hour urinary cortisols and an overnight dexamethasone suppression which didn't suppress and I had a level of in excess of 600. I have been booked for a MRI which I have been told will be in 4-6 weeks. I will also be called for 5 days of dexamethasone suppression at some point. I am getting depressed because all the symptoms I had first time round are coming back.

I can't walk more than a couple of 100 yards without being out of breath and aching, I can't climb stairs without a handrail, etc, etc, etc,...... It looks like my Cushings has come back but I so wish they would get on and sort it.

Labels: bios, Fiona, pituitary, surgery

2000 left adrenalectomy...post op electrolyte crash ...bad day!
2001 Broke right ankle 10 screws and a plate
2002 Pneumonia staph and strep
2003...Went ack to work
2004 Thyroidectomy : due to tumor; malignant on biopsy ...benign @ surgery...YAHOOO!!
2005 Better still working
2006 Still here!
2007 Quit work @ 46
2008 1st grand baby born
May 2009 Saw Dr. Friedman and waiting for results
May 2009 got results 3mm pit tumor anterior...WHY???
May 2009 SOOOOOO CONFUSED: But gonna get over that too!!!
DR. Friedman did not seem shocked and for once I wasn't the most difficult diagnosis in te room


Lynn was a guest in a Live Interview in the Cushings Help Voice Chat / Podcast series. Listen here, through our podcast page or on iTunes (search for "Cushie Chats").

Email Lynn

Labels: adrenal, bios, Lynn, pituitary

I was first diagnosed with Cushing's disease in January 2002. I suffered from this disease for approximately 4 years, all the while seeing doctors who had no idea what was wrong with me.

I finally connected with a wonderful doctor in January 2002 and he took one look at me and knew what was wrong he had me do a battery of tests and found that I was in the last stages of Cushing's and in fact he could not believe I was still alive with the acth and cotisol levels in my body. I was so severe that it damaged my heart and I have an implanted defibulator.

I underwent the transphanodial procedure in May of 2002 and could not believe the difference in my quality of life. Unfortunately I came out of remmission in the end of 2005 and underwent the same procedure again in February 2006. It took 1 & 1/2 years for anything to show up in my labwork due to it being cylical.

I am now again struck down with this disease. I am constantly feeling bad and again playing the waiting game for my labs to show proof. My family feels helpless due to the fact nothing can be done at this point and I know that I will only go downhill further before anything shows up.

The doctors talk about the next step is to remove my adrenal glands. This is also scary however I am to the point that I am really ready to do this if it means my quality of life will improve.

I would really love to talk to people who have been in my situation and maybe who have undergone adrenal surgery.

Email Cindy

Labels: bios, Cindy, pituitary, surgery

My daughter is 19 years old.

about 4 years ago her periods stopped...looking for a possible cause blood work was taken and she had significant rise in prolactin levels.

An MRI was taken and a prolactinoma of 2mm was found on her pituritary gland.

A few months later she fell pregnant and had a beautiful healthy baby boy.....After the pregnancy prolactin levels were still high but an MRI showed that the tumor had gone ???

Since then (about 15 months) my daughter has gained about 30 kilos, tired all the time hump on her back (neck) a much more rounded face, and her periods have returned but they are never on time. She has also been treated for what they believe was postpartum depression.

Does anyone know if a tumor can just disappear? And what test would you ask for now?

After reading this web site I cant believve that her endo hasnt checked her for cushings.

Thankyou Dee

(MaryO note: Although Dee asks several questions, she didn't give permission for a link to her email address to be added to her bio)

Labels: bios, Dee, pituitary, prolactinoma

Hi, I am a newly diagnosed cushy. I also have fibromyalgia.

I am 40yrs old. Live in Limerick city in Ireland.

I hope to give and receive support on my journy to recovery.

Email Dara

Labels: bios, Dara, fibromyalgia, pituitary

After 6 years my Dr finally got me a MRI and found a pituitary tumor. That was one month ago.

I am driving over 60 miles to see my Endo, who is currently running all the tests. She found my cortisol high and my growth hormone also high. I am currently half way through a five day dexamethasone test. And Nervous!!!

I have all the Cushing's symptoms from the Buffalo Hump to uncontrolled Blood Pressure. This website has helped me a lot in understanding what I am facing. So far the Dr have been real cut and dry just reading off test results and failing to explain much. I can not stand waiting for the outcome. I really want to get healthy.

I am 29 years old, will be married for 10 years in Sept. to the most amazing man in the world!!! 10 years ago I weighed 105lbs and was petite cute and adorable. I now look more like Pheonia off Shrek.

I have an 8 year old genius for a son and a very high energy 7 year old daughter. I'm starting to feel like I'm failing my kids because I can no longer keep up with them. From the baseball games, school activities, cheerleading, to just getting them dinner every night.

I also work a very stressful but supportive part time job at the local DMV. My Bosses have shown me the upmost respect and support.

I am scared but releived and excited to finally be diagnosised. Maybe I wasn't crazy.


Email Shirley

Labels: bios, pituitary, Shirley

I am 37 and had surgery to remove half of my pituitary after finding out I had cushings.

I have had many health issues that started about 8 years ago after the birth of my son. I have a daughter and after her birth my symptoms escalated about 3 years ago. They both have neurological issues which the doctors can't tell me if they are related to my having possible untreated cushings.

After my surgery now I am having adrenal insufficincy which I take replacement cortisol for. I am supposed to decrease my dose; however, when I try my body starts to have symptoms of adrneal crisis.

It has been frustrating to be sick for so long and have doctors and friends treat you like a hypochondriac when you are having real symptoms. Now I have a diagnosis it is a relief. However, I am still very frustrated because I want to feel better and it has been going very slowly.

Email Jodi

Labels: bios, Jodi, pituitary

My bio - I don't realy know where to start... I've been diagnosed for 6 months now after years of symptoms (the hump, belly, very thin hair, straie all over, bruising, confusion, exhaustion, weakness) to name but a few, but things seem to have gotten worse since my first pituitary surgery in January this year, that failed to cure me, i became ill with staphicoccal septisemia and was hospitalised for 3 weeks.

My second pituitary surgery in March, again failed to cure me, aparantly they can't get all the tumor.

I'm having an adrenalectomy in a month or so and then I must have radiotherapy to get rid of the rest of my pituitary tumor.

I feel like my life is over, I feel so old, all my joints hurt alot and it's difficult to move around - is there ever an end to all of this?

Email angelp

Labels: adrenal, angelp, bios, PCOS, pituitary

Hi, my name is Vanessa, I live in Phoenx, AZ.

I have recently been diagnosed with a piluitary tumor. This nighmare started about two years ago, I started gaining a lot of weight and feeling very tired. I went to my doctor who tested my thyroid and said I was hypo, the medicine helped with the fatigue but not the weight. I was constantly complaining to my doctor about my weight since I worked out daily.

Three weeks ago I went back to my doctor and she thought I had PCOS, a blood test was run and my cortisol levels came back high, a 24 hour urine test and an MRI revealed a putulitary tumor. I'm very scared and feel like this whole sitution is sureal.

I am currently seeking in endo in the area. Any recommendations would be greatly appreciated.

Email Vanessa

Labels: bios, PCOS, pituitary, Vanessa

23 yr old married woman who was recently diagnosed with Cushing Syndrome.

I have a tumor the size of my pituitary gland. Very scared. I am having the tumor removed in August and I dont really know what to expect?

Labels: bios, pituitary, Rachael

I was diagnosed with Cushing's disease September 2007. I've had transnasal surgery 10/2007 and stereotactic surgery 8/2008. Both surgeries have failed.

I feel worse every day that passes by. I have all the typical symptoms. I've gained 80 lbs, moon face, central obesity, high blood pressure, migraines, blurred vision, prominent buffalo hump, osteoporosis, very fatigued, weak muscles, muscle pain, fast palpitations, I just feel terrible.

I'm afraid to go to sleep every night not knowing if im going to wake up. I just keep wondering how will I know when the time is near for me to go. What am I going to start feeling? Will my organs start to shut down?

I know im at a high risk for a stroke because im so overweight. My current cortisol is in the 200's. I took ketaconozole for a month and ended up in the hospital because the medication was affecting my liver.

So im currently not doing anything about Cushing's. I just feel the light at the end of my tunnel keeps getting dimmer. I just feel sooooo tired all the time, I feel like my life is being sucked out of me. My eyes are so tired it's hard to keep them focused.... Im so tired of Cushing's I don't know what to do anymore.

Email Lulu

Labels: bios, Ketoconazole, Lulu, pituitary

Hey everyone in cushieland! Very happy to have found this website!

My name is Patty and I am a single mom of 4 kids, 3 are grown and my daughter is 13 and the last one here at home with me. I am a real estate agent (so basically unemployed!) and I am starting nursing school in July.

I have a pituitary tumor that has been called many things,but most recently they are calling it a rathke cleft cyst...frankly I don't think they know what the heck it is! Like most of you, I have been sick for many years and diagnosed with many different things, but no doc has called it Cushings yet, just treated me for all the symptoms over the years..hypothyroid, sleep-apnea, depression, migraines, ibs,...the list goes on and on.

The only thing I can't figure out is why I have nearly every symptom of Cushings and my docs look at me like I have three heads when I want to put everything together for a diagnosis of Cushings! I have poor health insurance (medicaid) so I mostly see residents and that is part of the problem.

I have a feeling if I could just get to see a Cushing's expert they could help me. Not much oppurtunity for that here in cincinnati,Ohio, especially one who will accept my insurance.

So I am here looking for support from my frustration and ideas on how to help myself. Meantime it is good to know I've found a group of people who will take me seriously (unlike the docs I'm dealing with!).

Email Patty

Labels: bios, Patty, pituitary, Rathke Cleft

I'm a 31 year old female. 5'6, 220lbs. I posted last year but can't find my original posting! Recently dx'ed with central adrenal insufficiency after an ITT (Insulin Tolerance Test).

Many of the symptoms fit: chronic fatigue, muscle weakness and aches & pains, total loss of libido, orthostatic hypotension, hypoglycemia, extreme sensitivity to touch and smell, inability to exercise, headaches, etc.

The problem is in my pituitary/hypothalmus gland, according to my endo. After a full year of tests, hospitals, labs, and moronic doctors, I found a good doc...after hearing my symptoms and sending me for a TTT (Tilt Table Test)...I was diagnosed with NMH (Neurally Mediated Hypotension) which explained my wooziness upon standing and regular fainting spells.

They started me on Midodrine for my heart, and then the blood cortisol test came back as low...so suddenly, my heart problem was actually caused by an adrenal problem that was actually stemming from the wrong signal that my pituitary was sending! Complicated, eh?

But I have many symptoms of Cushings and/or adrenal excess as well. Late menstruation, peripheral vision loss, large weight gain instead of loss. It seems to go through cycles-sometime I am wide awake at midnight. I also bruise easily and bleed profusely, and then clot other times. Despite my organic diet, my skin is now acne prone and flushed a reddish tint. My hair is gray, and won't absorb hair dye well. My gallbladder was removed last year even though I don't eat fatty foods. I constantly retain water.

They've tested my growth hormones and everything else looks fine.

I also have a big Vitamin D deficiency. I am taking 100,000 IU a week for that.

I am now taking 15mg of Hydrocortisone a day for the ACTH replacement therapy. It has definitely improved my fatigue, and helped with my aches & pains, and I haven't fainted once in a week.

But...the other issues are valid. I have worked with nutritionists...no one has helped my weight. I wasn't even chubby until my onset of symptoms at 18 (menstruation, weight gain, massive headaches, vision loss.)...I currently eat 800-1000 calories a day, and still gain weight. I know that the hydrocortisone isn't helping, but the problem was there before I started on it and at least I feel better.

I have a great husband and family & friends and am very lucky. I just want to be well. I really want kids, and I worry that if I don't get this straightened out, I won't be able to. And vainly, I want to be slim. Not model thin, but 150 lbs at my height of 5'6 isn't a lot to ask for, in my opinion.

Any advice? Has anyone heard of it being possible to have adrenal insufficiency AND Cushing's? My doctors are frustrated with me, and no one seems to have more answers. Thanks!

Email McCall

Labels: adrenal, bios, hypothalmus, McCall, pituitary

I was diagnosed July 15, 2008 and had my surgery August 29, 2008. Its been hell ever since.

Email Jeff

Labels: bios, Jeff, pituitary

My daughter has been in the diagnostic process of Cushings for several months. It was also suggested that she might have "cyclic" Cushings.

She was initially lactating and her OB/GYN sent her for an MRI of the brain where they confirmed a 4 mm tumor on the pituitary gland. She has had numerous blood tests and hos done 3 - 24 hour urines. She finally switched to a second endocrinologist as the first seemed to be dragging his feet and he wasn't communicating very well. Whichever of the two tests have the normal range of 0 - 50, hers was 1,200+.

At this time, I believe the blood tests are coming back better than initially so that is why the repeat urines as this new doctor stated that on the blood tests, it appears she has almost no hormones although she is having regular menses.

After 3 additional urines, this physician is going to refer her to a surgeon at Barnes Hospital for removal of the tumor. My daughter was not considering removal of the tumor before as she was hoping to have one more child. The new doctor said she needs to eliminate the problem, which is the tumor, and that according to the hormone level, she will probably not even be able to conceive.

She is also going to be getting a Dexa Scan due to the great deal of pain that she experiences. The 1st endocrinologist also mentioned a probably adrenal or lung tumor and when later questioned replied with he doesn't want to talk about this right now but to just be patient and give him time. (I attended with her at this particular visit.)

Any input would be greatly appreciated. Any infomation about Cushings, it's long term effect, removal, etc.

Thanks and God Bless to all of you!

Betty

Labels: Betty, bios, pituitary

My name is Jada, I have been married to a wonderful man for 10 years and we have 4 beautiful children, a daughter who is 17 and three sons ages 12, 7, and 5. I have been an ER / ICU RN for 16 years and loved my job. Since childhood I was always healthy and active, I was never overweight and there was no obesity anywhere in our family. I maintained an average weight of about 98-102 pounds until my last child was born (I weighed in at 112 pounds at my first pregnancy checkup with my fourth child). I had always gained more than the reccommended weight in each of my pregnancies, but bounced right back into shape within 5-7 months. I maintained a healthy diet and was always active, but I never had to work at maintianing my weight.

Shortly before I became pregnant with my fourth child, I developed severe anxiety and panic attacks. I was put on benzodiazpines which relieved most of my anxiety symptoms. After I gave birth in February 2004, the weight quickly began to fall off but I noticed I was fatigued most of the time, I associated this with being a new mom again and having 4 children to look after. I also had no libido, and when I mentioned these problems to my doctor he said it was normal hormonal chages after having a baby.

In September of 2005, we were moving into a new house and I noticed that I was having a difficult time carrying even the lightest boxes and I had also developed very large supraclavicular fat pads. I had also gained 45 pounds over a four month period even though my eating patterns and activity had not changed. My fatigue was getting worse and my libido had still not returned. I was having hot flashes and night sweats,my face shape was beginning to change, my anxiety became worse and I was feeling depressed. I made an appointment with my primary care physician and was told that I need to go on strict atkins diet and to excercise regularly, then I was handed a prescription for Lexapro.

By 2006 I was excercising religioulsy, counting every calorie and resorted to diet pills. Then I began experiencing joint stiffness, pain, nausea, and recurrent yeast infectons. I made another appointment with my OB / GYN and was told I was getting older and my metabolism was slowing down - I was only 33. My other symptoms were dismissed and never addressed. By mid 2006, I had ramped up my exercise regimen and developed shin splints. I also almost overnight devloped a severe case of heartburn, it became so bad I had to sleep sitting up. After another visit to my doctor I was given Nexium, which did little to help. By this time, despite dieting and intense exercise I had only lost 25 pounds. My abdomen was so round and flabby, I decided to have a tummy tuck with full muscle repair. I was able to maintain this weight loss for about 7 months, then it all quiclky piled back on. By January 2007, I was no longer sleeping at night, however I was sleeping almost all day, I developed edema in my legs and hands, I sweated profusely and spontaneously, and my libido was nonexistent. I went back to my OB / GYN and was given diutetics, more antidepressants, and birth control pills, even though my tubes were tied. I was told, at the age of 36 and no previous reproductive health issues, and 4 healthy pregnancies, that I had PCOS. It seemed like an odd diagnosis for someone with my history, normal laboratory findings and no cysts found on my ovaries via ultrasound, but I trusted my doctor and continued to follow his plan.

Over the year, new symptoms began arising; I developed persistant diarrhea, a severe skin rash accompanied by urticaria, migraines, menstrual irregularities, breast enlargement with constant tenderness, plantar fascitis, recurrent upper respiratory infections, low back pain, dry itchy thin skin and new stretch marks. I was having memory lapses, forgetfulness, irritability, flushed face and neck, excercise intolerance, abdominal pain, throbbing flank pain, extreme sudden crashing fatigue, difficulty concentrating, trouble finding words to express myself, acne, chronic sinus infections, a hump on the back of my neck, kidney infections, high blood pressure, periods of rage followed by inconsolable crying, and frequent burning headaches. I went back again to see my OB / GYN and was told there was nothing wrong with me, except that I had PCOS. I decided to get another opinion. After spending about an hour with my new doctor and going over each of my symptoms, she said , "I think you may have Cushing's Syndrome". I immediately went home to begin research and identified with each and every characteristic of this disease. It was a relief to finally feel validated and to have someone believe that, in fact, I was not well. She ordered a 24 hour UFC, which came back at 44 (upper limit 50), but we both were not ready to give up on this diagnosis.

I was sent to a local endocrinoligist for further evaluation. I had made a binder with my medical history, symptoms, before and after pictures, and lab results I had done over the last year. He came into the room, and before examining me or seeing any labs, told me "You don't have Cushing's Disease, you have psuedo- Cushing's caused by insulin resistance." I asked how he knew this and he replied, "Because it's too rare and too hard to diagnose." I asked him to take a look at my before and after pictures, my stretch marks, my fat pads and my humps, he then conceded it could be a possibility but highly doubtful and to not waste my time researching Cushing's. He gave me a presciption for Byetta injections and I was able to talk him into giving me a lab requesition for a midnight serum cortisol. The Byetta injections did nothing for me, but my midnight serum cortisol came back at 9.3 (range <0 -3). He declined to see me again and I promptly made a phone appointment with Dr. Ludlam in Seattle after reading some of his articles on Cushing's Disease.

During this time, my life became almost unbearable. I could no longer do the things I used to do. Each and everyone of my symptoms worsened. I would sweat so profulsely that I could not put make-up on (which is pretty important to us southern women). Climbing stairs became a daunting task, my muscles became so weak that I could not lift laundry baskets, or lift loads of clothes to the washer or dryer, I couldn't open jars, climb on a step stool, my legs would become fatigued when I tried grocery shopping I couldn't push the cart, I couldn't hold the hair dryer long enough to dry my hair, standing for even short periods of time made my lower back ache terribly. I couldn't push the vacuum cleaner or mop, using the bathroom was difficult because my legs were too weak to stand up (and using a public restroom was impossible since I no longer had the strength to "hover"). Climbing into my bed or getting up from a chair required help from my husband, even lifting my binder I had made for my medical information took the effort of both arms. Most sadly though, I couldn't pick up and carry my children to bed or to give them a hug. I couldn't sit on the floor to play with them because getting back up required more strength than I had.

More symptoms began to appear such as hair growth on my face, I developed infections with high fevers, my scalp, neck, and face were extremely oily while the skin on the rest of my body flaked off with ease. I had excruciating joint and muscle pain that left me bed bound for days, muscle twitching and tremors became severe, I was gaining more weight although I had persistent nausea and no apppetite. I became socially isolated, depressed and apathetic. My quality of life was failing quickly and my marraige and home life was under so much strain. I couldn't attend school functions with my children, cook meals, or just enjoy spending time with my family. Many days, I felt as if I just couldn't go on feeling so sick all of the time. I even had to suspend testing for Cushing's for 8 months because I was so ill with infection after infection and unbearable pain.

Once I was finally feeling as if I could test, I began getting some high numbers on my ACTH, serum cortisol, salivary cortisol, and most importantly 24 hour urinary free cortisol collections. I had some that were low, and I had some that were extremely high. I realize that some doctors do not believe in cyclical Cushing's, or that you can have high 24 hour UFC's interspersed with lows. I firmly beleive that one can have some lows along with some high results and still have Cushing's Disease. I believe this is a direct indication that pituitary tumors can cycle, or turn on and off, just as every other endocrine system in the body does.

I am grateful to finally have a firm diagnosis and am preparing for surgical treatment to remove my tumor. I am ready to recalim my life and return to being the mother and the wife I once was. This disease has the ability to destroy so many aspects of one'e life. The fight to prove your diagnosis and recieve the treatment is long and arduous, but in the end it's worth every ounce of energy you can invest to prove, it is, afterall, "all in your head".

Labels: bios, Jada, pituitary

I am in the middle of being diagnosed with pituitary cushing's.

Up until today all of the test results had come back very definitively pituitary but today I just received word that the sinus cavity one came back ambiguous - very non-definitive. So my specialist is going to send me to another specialist who is considered to be the expert in this area.

I am 45 years old, turning 46. I have 2 children (9 and 11) and am married. I am a lawyer and my partner is a professor at our local Universary. We live on 5 acres in the country and have 5 dogs, 1 bird, 3 fish, and 1 lizard.

I have been off work since June 30, 2008 and am finding it very difficult to be patient with this illness.

Update March 24, 2009

this is an update to my previous bio.

I was ultimately diagnosed with pituitary cushings and was operated on by Dr. Akagami at Vancouver Regional General Hosptial on March 3, 2009.

I am now in recovery.

Email Elisabeth

Labels: bios, Elisabeth, pituitary

Health History

October 1960 Born 1-month prematurely, little pre-natal care (I'm adopted)

Early Childhood - German measles, mumps, whooping cough, croup, ringworm of scalp

7th – 8th year Pneumonia several times, developed asthma, hay fever

10 years - Onset of menses

14 years - Chicken Pox

17 years - Pneumonia, onset of depression (not diagnosed)

19 years - Started getting migraine headaches

21 years - First child born, son, toxemia

23 years - Birth of daughter, mastitis, endometritis

26 years - Miscarriage; notice bruise easily

27 years - Pregnancy, gall bladder disease, removed during 7th month of pregnancy due to pancreatitis; second daughter born in October

28 years - Severe asthma attack, hospitalized

29 years - Birth of third daughter; onset of anxiety and panic attacks. Skin tags appear, severe fatigue and body aches begin

33 years - Hysterectomy due to excessive periods, enlarged uterus

38 years - Severe depressive episode due to divorce

43 years - Bunionectomy; broken toe; wounds heal slowly

44 years - Increase in fatigue, memory / concentration loss, muscle weakness, night sweats

46 years - Right lateral epicondylitis release, major weight gain, severe water retention

46 -48 years- Onset of hypothyroidism, Hasihmotos disease, sleep apnea
Type II diabetes, hypercholesterolemia, gastric reflux, insomnia, Cushing’s disease

March 2009 - age 48 - Diagnosis of Cushings disease, pitutitary source by Dr. F. I have plenty of high salivary cortisols, need one high in urine or blood and then Dr. F. will clear me for surgery

Email Christina

Labels: bios, Christina2, diabetes, pituitary

Diagnosed after more than 20 years of trying to find out what's wrong.

Hashimoto's Thyroiditis - diagnosed 2000.
Unstable Hypothyroidism - diagnosed in 1994, but changed in 2006.
Hyperparathyroidism - diagnosed in 2006 although blood work showed problems in 2000.
Hypocalcemia - diagnosed in 2006 although blood work showed problem in 2000.
Severe D deficiency - D is a hormone, not a vitamin. Diagnosed in 2006.
Adult GH Deficiency - diagnosed in 2006 although blood work showed problem in 2000.
Cortisol levels always just under the cut off for Cushings Disease.
Pituitary Tumor in MRI 2009.

bones in my feet were fracturing when I walked by 2006. Standing, sitting, lying down is quite painful. Now there's severe pain in my vertebrae -- same as my feet 3 years ago.

Chin whiskers, loss of more than 2/3 of scalp hair, and pubic like hair growing on legs. Severe migraines which produced nausea and vomiting stopped with treatment.

Email cris

Labels: bios, cris, pituitary

52 yr old woman from Sidney, BC, Canada (Vancouver Island) -

I had a kidney stone attack in Sep 09 and was sent for a CAT scan. This showed tumours, one on each adrenal gland. When my GP saw these results, the lights came on, because of my previous symptoms, he was able to determine that I had Cushings and set me for tests to confirm. My cortisol was very high, confirming Cushings, and he referred me to an endo.

An ACTH suppression test came back as low/normal which indicated that there was possibly another tumour. I was sent for an MRI that showed a 2 mm tumour on my pituatary. After further consultation with his peers, my endo feels that I may have a rare case of Cushings where the adrenal glands have decided to ignore the pituitary gland and are independently producing cortisol. They all agree that the first step to a cure would be to have the tumour removed from the pituitary.

I saw the surgeon on 2nd March and will probably have the surgery in two months time. In the meantime, I have been taking Novo Ketoconazole for the past month and already my cortisol levels have dropped dramatically.

This is great news, since one of my Cushing's symptoms is the inability to heal and another is the susceptibility to infections. Hopefully my immune system will be recharged by the time surgery rolls around.

My endo thinks there is a possibility that the adrenals may not have tumours but merely enlarged from being overworked. If this is the case, the removal of the pituatary tumour could cause them to shrink on their own.


Email Maryanne

Labels: adrenal, bios, Ketoconazole, Maryanne, pituitary

My bio, my name is Gail Jacka, and my nickname is Dolly.

I was originally diagnosed with Cushings in 1988. At that time I had a pituitary tumor removed. I was okay for about 10 years, and it occured again. My tumor was removed, as well, as my pituitary glands.

In 2003, it reoccured, and I had adrenal glands removed. I am now experiencing all symptoms again, last lab work performed, on 2/17/09. Results showed ACTH level at 482. Endo MD is puzzed as I have no glands, and have undergone radiation.

I am scheduled next week, to have MRI and imaging done. He thinks maybe I now have Nelsons Syndrome. My question is, if I do have Nelsons syndrome, and there are tumors on the lung, are they cancerous, or benign as in other tumor history?

If so, what is the treatment for this? It has been a long battle because of the Cushings, over 21 years, and it has effected my life dramatically.

Email Gail

Labels: adrenal, bios, Gail, Nelson's Sundrome, pituitary

It all started when I got my first period in grade 8. Ever since, my menstrual cycles were very irregular, coming every 4-5 months (Once I skipped 9 months). Despite this, I was happy and felt healthy, exercising on my tredmill everyday and eating a healthy diet.

In 2005, my parents were concerned about my irregular periods so I went to see a GP who then got me a referal to see a gyno. The gyno told me that it's perfectly normal to have irregular periods (then WHY she prescribed me birth control pills, I'll never know). THIS is where the symptoms started popping up- right after I took Yasmin birth control pills for about a month. I was moody and gaining weight so I stopped taking Yasmin.

I then tried to take the weight off by exercising, but something was different. The more I exercised, the more I gained weight. I was constantly bloated and my cheeks were getting bigger. I drank more water, thinking I was dehydrated, but that wasn't it. If anything, drinking water made my edema WORSE.

I started getting significant changes to my bowel movements where I went back and forth from severe constipation to severe diharrea. A gasto. told me that I have a MILD form of IBS?! He did nothing but a routine checkup and told me to eat more fiber. Even though I never changed my healthy diet regime, I ate more fiber (which made no difference in my bowel movements).

I went to countless GPs who got me to do countless blood and urine tests which all turned out normal. I was gaining weight like crazy and my face was getting bigger. I was CONSTANTLY bloated and my body started to change shape. My legs and arms were noticeably getting thinner, and my torso looked like it was getting shorter and fatter. I was slowly forming a "double chin", and my skin got ALOT darker and dry. Now, my face is always oily and my hands are constantly sweating. I still have irregular periods and "mild IBS".

I'm noticing that I'm falling deeper into depression as I am getting more desperate to find a diagnosis. Hairs are starting to grow on my face, and my hair is very dry and coarse. My jaw seems like it's growing wider (probably my jaw bone). I'm starting to get shooting pains in my head area which gets worse when I lie down. I can't concentrate in school, and I feel like dying is better than living like this.

In my three years of researching my symptoms online, I am certain that I have pituitary Cushings Disease.

If there's anyone in Calgary or anywhere in Alberta that can help or want to share your thoughts, please e-mail me.

Email Jenny

Labels: bios, Jenny, not yet diagnosed, pituitary

ARGH!!!

The weird symptoms had been going on for years. I can't complain about most of my doctors...they did, for the most part, take my compaints seriously. But, the "red herring", a serious accident that caused permanent spinal damage, allowed everyone (even me) to explain away symptoms that probably should have been more carefully explored. Trouble walking? Nerve damage. Weakness? Same thing. Diabetes? Surgical trauma. Round face, loss of scalp and body hair, excessive facial hair? Beats me! Fatigue? Diabetes. Stress fractures? Caused by uneven gait due to nerve damage. The list goes on and on. Another problem was that I never gained enough weight to attract attention, although that was the issue that originally brought me to the doctor. Her reply? You are still within a healthy BMI. Just try not to gain any more. My teen daughter's response to this was that if she ate like I had started to, she would be anorexic and I would have her in an eating disorder clinic! When I complained to friends about mental lapses, they said they were the same and attributed it to perimenopause. When I said my periods had stopped years ago, their reply was, "lucky you."

Finally, a young doctor who was substituting for my usual GP saw me to renew one of my ever-growing list of prescriptions. She asked a lot of questions, and finally asked if I had been tested for Cushings. I had never heard of it. She wrote to my usual doctor, who started the diagnostic process. And there it was. First, they attempted to remove my pituitary. Got most of it, but couldn't safely remove it all. Things improved for awhile, but it seems the remaining portion has a tumour in it too. My neurosurgeon considers additional pituitary surgery too risky. So, it seems my adrenals are next to go. This will happen next month. Quite frankly, I am terrified. I am well known among my family and friends as a cheerful and optimistic person, but I must admit I'm finding it difficult to keep up the act this time, especially around my adolescent children. Teens with access to Google are a dangerous thing!

Does anyone have any advice? Thanks.

Labels: adrenal, bios, Brenda, pituitary, surgery

I started to have symptoms that were bad enough for me to see a doctor in Janurary 2008.

The diagnosis of Cushing's due to a pituitary adenoma was made after MRI in June of 2007.

My first surgery was in September of 2007. At that time, the suspect area of the pituitary gland was removed leaving me with 80% of the gland. My cortisol levels never dropped and I was scheduled for a second operation in October.

That surgery was aborted after finding a staph infection in my sinus. After a long course of antibiotics, another operation was scheduled for November. On that day, the surgey was aborted again and I was kept in the hospital overnight on IV antibiotics then went back to surgery the next morning. My pituitary was disected and an adenoma was found in the OR leaving me with the stalk, about 15%. My cortisol levels dropped some, to that of a "normal" person, but did not go low enough to be considered "crashed."

After much discussion with my primary neurosurgeon, (he's wonderful), I decided to go home and see what happened. My husband and I would like to have a child and shortly after surgery my period came back, so we took it as a sign to go home and see what happens.

Unfortunately, my remission was short lived. My cortisol levels are back up and the rest of my hormones have fallen off to0 the point of needing replacement.

I am now seeking the advice of a specialist to help us get pregnant and have a baby before going back for my fifth surgery!

Labels: Amber, bios, pituitary

Hi, I am newly diagnosed Cushing's patient. I am still in the process of determining the origin of my cushings. I just had an MRI of the pituitary and am awaiting my resluts.

Ive had significant weight gain, high blood pressure, easy bruising, excessive sweating, anxiety, and purple striae on my stomach and legs.

Im a 24 year old very active female. I am a registered nurse and love to play soccer in my spare time.

Email Melody

Labels: bios, Melody, pituitary

Greetings! This is Heather from KY. I finally am sitting down to type out my bio to try to help others should they recognize their own symptoms in my story.

I am 33 years old and I was never someone who was overly sick. I had my occasional bouts with the flu and at least one sinus infection a year, but overall was extremely healthy. I am a former semi-professional dancer and maintained a weight of around 120 lbs. I was blessed with super metabolism and never had to diet, but all that changed around 2002.

In 2002, I developed a case of Bell’s Palsy. It came on over the course of about 5 days affecting the right side of my face. My PCP placed me on a 70 mg daily dose of prednisone to be tapered after 1 week. I felt the effects of the steroid immediately, both good and bad. I was wired every night, up at 2 to 3 o’clock for hours. And the intense hunger about drove me over the edge. Additionally, I experienced a weakness in my jaws and neck that was quite disturbing. Eventually though, after tapering off the prednisone, those symptoms went away and I began to lose weight. I joined Weight Watchers and lost around 23 pounds, even becoming a lifetime member.

Life went along well for a while, I’d lost weight, had a good job and a great boyfriend. But then things started to change. I underwent a personality change that caused me to be moody and upset and pick fights with my boyfriend for no reason. My arms started going numb and I developed a fierce neck and shoulder pain. Even though I was still following my WW eating habits and going to the gym, the weight started to creep back on.

Along about this point in time the panic attacks began. I would go to bed, sleep for 2 or three hours and then suddenly wake up with a racing heart and feeling like I might die if I didn’t release some pent up energy. I literally would jump out of the bed with this horrific feeling that could best be described as “impending doom”. It was such a miserable feeling that I made an appointment with my PCP who thought it odd that I would have panic attacks in the middle of the night, so he began treating me for asthma.

I began to withdraw socially. I didn’t want to be around other people when I was feeling so poorly. My boyfriend decided to move on to a more sociable person, and I slipped into a deep depression. I felt like I was losing my mind and completely losing control. I finally began to consider that I was truly mentally ill. I researched mental illness and found that I had characteristics, but nothing truly fit the bill. I identified with some of the symptoms of bipolar disorder as I experienced wild swings in mood. But I also realized that my problems were not just psychological. I started to gain even more weight. Working out became extremely uncomfortable because of the crushing fatigue and feeling of not being able to breathe.

Trips to my primary care doc were not giving me the answers I needed. No one was looking at the aggregate of my symptoms, only the individual instances. I emerged from each visit a little more depressed than when I went in. I was given anti-depressants and a variety of herbs and natural combinations to try. Literally nothing helped. A small dose of thyroid alleviated a portion of the fatigue, but I still felt I was not getting to where I needed to be.

Oddly, the thought that kept popping into my head during this time was that I felt as if I was on steroids again. But that did not make sense as I had not taken a dose of steroid in several years.

Ultimately, my grandmother gave me an article about a woman whose story was eerily similar to mine. She was diagnosed with Cushing’s Disease. I’ve been involved with companion animals and animal rescues for a number of years and was familiar with Cushing’s in dogs…but had no earthly idea that a human could get it! I remember having such a strange mixture of emotions. On the one hand, I was scared for what may lie ahead, but at the same time I was excited and hopeful to be able to put a name to what had caused me to lose so much of the life I knew. An appointment with my primary care doc and superstar nurse practitioner brought excited concurrence from both.

I was referred to an endocrinologist who then literally laughed in my face when I mentioned Cushing’s. He then proceeded to tell me I was taking too much thyroid hormone and lowered my dosage. Yikes!! Never one to blindly accept the established order, I decided to do my very own research and seek a second opinion. And then a third opinion. All were in agreement on one point: I look “cushingoid”. But some of my tests came back with normal and even low(!) results. Hence I was sent on my way with the proverbial pat-on-the-head…and a recommendation for Weight Watchers.

Fast forward several frustrating months, and I entered into an intensive testing phase for a version of Cushing’s called “cyclical” or “episodic” Cushing’s after seeking the help of an expert in the disease. With cyclical Cushing’s, your cortisol levels fluctuate from high to low and then back to high, producing erratic results and further complicating an already complex disease.

My list of symptoms is fairly typical of Cushing’s:
• A 90 lb weight gain, concentrated around my stomach, that does not respond to diet and exercise
• A round, red face (moon face, facial plethora)
• Acne, much of it on not just my face, but also my neck, shoulders and chest
• Muscle weakness, making it difficult to squat or climb stairs
• Cuts and insect bites are slower to heal and my skin easily bruises
• Severe hair loss

In December 2008, after many years of feeling hopeless and alone, I was diagnosed with Cushing’s Disease caused by a pituitary tumor. Transphenoidal pituitary surgery has been scheduled for February 2009.

If you are just starting your journey, please listen to what your body is telling you. If you are unsatisfied with the answers you are receiving from your doctors, take matters into your own hands. Research and learn as much as possible and do not be afraid to fire a doctor that is not helping. And, most importantly, never give up hope. I’m so glad I didn’t.

Labels: bios, cyclical, Heather, pituitary, steroids

Diagnosed with Cushings Disease when I was 21 (was in hospital having the tests on my first wedding anniversary!) - so 1999. Then got it again 3 years later in 2002.

Been clear for nearly 7 years but have just had word that my ACTH levels are high. Will be seeing specialist next week.

Labels: bios, Michelle2, pituitary

Hi. I am new to this.

Not sure yet if I have Cushing's but I've had most of the symptoms for a couple of years. The only thing keeping me from seeing an endocrinologist was a tumor which was finally found in my pituitary very recently.

I just had bloodwork and she is testing for like 9 diffferent things & I'm doing the 24 hour test today. I'm hoping to find out soon what is going on. I am on this site to see other people's stories to see if they mirror mine.

All I know is that I've been miserable for over 2 years now & now I'm starting to look like Santa! My face is always swollen & red, I'm gaining weight, losing hair where I shouldn't be & gaining it where I least want it! I'm also exhausted all the time & have a hard time climbing even a small set of stair.

Anyway, that is my story so far......

Email Gina

Labels: bios, Gina2, pituitary

my names sarah i am 26 i live in biggar saskatchewan in canada..2 years ago i was diagnosed with pcos, there were treating it and i was getting worse..

I started getting headaches and blurred vision almost everyday..So my gyno ordered a cat scan, when the results came in from that they said that they see a tumor but u need to get a mri done so they can have a better look, in the meantime i had blood test fro thyroid , prolactin ect..

Results from the mri showed i had a macroademia.. MY bllod test came back i had slightly high levels of prolactin, so they said u had a prolactinoma and put me on a surgery list to remove it, i got a phone call from my endo saying i didnt need surgery u just need to take dostinex and the tumor should shrink..

Well i was getting sicker i had to take sick leave because of work still no menstrul cycle headaches everyday, nausea, gaining weight like mad but hardly eating,seemed that the dostinex was making me feel worse i was getting upset because
the docs were looking at me like i was making things up, but really i wasent..

About three month later i was feeling terrible i ended up noticing a hump growing on my back and facial and back hair i never had today.. i also had tons of red strech marks on my stomach and my armpits and breasts,one day my mom calls me and says you need to go onto google type in cushing disease and read the syptoms, so i did, and i had every single symptom except for high blood pressure..

So i made a apt for my endo and asked her if it could be cushings , she said yes that sounds about right, i took a 24 hour urine and a dexomethane blood test and results came out that i had very high cortisol..Next i did the 3 day dex test, and yup sure enough it is cushings disease..

My endo booked me a apt with the nuero surg, who put me on a urgent list, twelve days later i had surgery..well my surgery was on nov 12th 2008..

I am still sick, still have bleeding in my nose and my nuero cant see me until feb 24th cause he is on vaca, i mean really tho i still havent even had a post op apt with him..

As for the cushings i am off of the steroids and feeling like crsap, some days i cant even get outta bed... I just had a triple bolus test done and i have high tsh and prolactin level, my apt is tues to discuss the prognosis yay what next, still have lost any weight well 5 pounds, still have a moon face, i will prob have the facial hair forever, but the sore muscles and headaches and nausea has got to go i am tired of being tired, but i am a insomniac so i cant even sleeo in the day..thanks for listening ..Sarah..


Email Sarah

Labels: bios, PCOS, pituitary, prolactinoma, Sarah2, surgery

My bio for the Cushings and Addisons web site.

Hi my name is Harley I'm a 56 year old male. In 1985 I broke my back which reqiured several surgeries over a period of 10 years, which caused a severe amount of pain. Then about 10 years ago I was diagnosed with addisons disease. I did'nt have all the symptoms of the disease but I've been diagnosed by my family physician plus other physians have confirmed the diagnosis also. As we all know this disease is very hard to detect. I've been on prednison and high doses of hydrocordison over the past 5 years. I've been hospitalised numerous times with adrenal crisis.

I was also diagnosed with a pituitary malinoma and have been treated that over the past 10 years. I have MRI's every so often to see if it has enlarged.

I started seeing a massage therapist for the past 4 years.Starting with my back which has really been helping. She also treats me with oils which I was very hesitant at first but have grown to believe in them in many ways. My doctor has also discovered that my testoterone levels were extremely low so he has been giving me shots for that every 2 weeks I have recently been diagnosed with Cushings do to the high doses of steroids I've had during this time. In the past I've seen three endroconligists to avail.

Needless to say my wife and I have been very discouraged after all they are supposed to specialists. My last hospitalition my family doctor talked us into seeing another endo as my doctor said he was afraid of the shape I was in he was afraid of me not making it. I thank God for the faith that my wife and I have or I'm afraid this would have been more than we could handle but He has given us the strength to keep moving on.

God directed my wife to a gal that is a Certified Holistic Practioner that also has Cushings and Addisons herself. She has been living with this for the past 7 year. This is what prompted her to start her practice of healing. She started treatin herself first using oils and changing her diet and it worked for her she is stable now and doing much better. This is a real blessing because she has studied this disease indepth plus can relate to what I'm going through. It's been great because before this I had know other contacts as we all know these are very hard diseases to detect. The new endo has set up a series of tests for me which I started a week ago and have another series this next Monday, after he gets the results of these he will decide where to go from there.

I'm so glad that God has finally set up a support group for me but they are also very strong in faith which continues to feed my wife and I.

Labels: adrenal, bios, Harley, pituitary, steroids

I have had Cushing's for about 15 years but I was only diagnosed 6 years ago.

I have had pit surgery and gamma knife without success. I have been taking Ketoconazole for about 3 years now. It has helped alot but still my levels are a bit high.

Some adrenal adenomas have been recenly discovered and so I need to have my adrenals out. I am an artist.

I have two beautiful daughters and I love to read. I am married and I hold a part time visual merchadising job. I also paint murals.

Oh-and I think Cushing's stinks!!!! Don't you?

Labels: adrenal, bios, Kristen, pituitary

I have a tumot in both the pitutiary gland as well as the adrenal gland and doctors dont know which is secreting very high levels of of cortisol.

Labels: adrenal, bios, Elaine2, pituitary

I am 40 years old and have FINALLY been diagnosed with Cushing's disease after having symptoms for at least 7 years.

I have a pit. tumor (we call it "Earl" :) ) that is 9X8.6X6mm.

I am an RN, which means I have just enough knowledge to scare myself silly with all this. To top it off, I used to work in the OR, so I know what the surgery for this entails. I say "used to" because I was asked to "resign" from my last job secondary to what I now know are symptoms of my CD (memory lapses, short attention span, emotional instability). As if those of us don't have enough mental/emotional issues, losing my job really hit hard.

I have gotten so much info and validation from the "cushie" websites I have found. Now I know it's NOT all in my mind-just in my head :)!

I am married and have 2 wonderful girls, so much to be thankful for, just wish this journey were over (actually, I wish I wouldn't have had to start it, as I am sure all "cushies" do).

I am looking forward to actively participating on this board. Thanks for allowing me to type in!

Labels: bios, Lori, pituitary

I am 39 yrs old-and for 35 yrs I have been battling life threatening asthma-i have been in respiratory failure/cardiac arrest 5 times in the past 17 yrs. I had been diagnosed with COPD in the summer- I was never a smoker but because of recurrent bronchial and pneumonia infections, my body has had enough.

I was just diagnosed with Cushings after 10 months of thinking i was nuts-i have gained over 50 lbs- I can no longer work because of the asthma and cushings-I look in the mirror and try to figure out who the person is I am looking at- because it is not me.

I have been hospitalized this year because of heart failure issues, repeated asthma issues etc-finally my nurse ractitioner sent me to the endo as an emergency-he saw the bloodwork and examined me and said I am in an acute stage of cushings-Thank God! Finally an answer.

I feel worthless and my medical bills keep piling up-How does anyone deal with this all at once? I am so tired and just would like some relief...I am unable to stop the steroids and the endo thinks the damage has been done to my pituitary because of sinus surgery I had a few months back-I used to be strong- but lately I am just so overwhelmed-any suggestions-

I have a therapist and she is wonderful- but does anyone have advice as to how to just keep going when you feel like such crap???

I am glad to find a site where people can relate- I hope to hear from some of you!

Email Joanne

Labels: bios, Joanne, pituitary, steroids

Im 25 and was just diagnosed with Cushings..I like you had gone to the doctor over and over to have my thyroid tested among other things. I also have the symptoms of having facial flushing whicj I never knew was a symptom of anything.

I had gone to the dermotologist who just told me it was from the sun and tanning...It wasnt untiol a freind told me to go to a Endo also...after I filled out the symptom list the nurse took one look at me and said I think you may have Cushings SYndrome.. SHe was the first person ever to think I actually had a problem.

I have these horrible strech marks on my stomach that seemed to just come over night..That was her biggest clue. I also Have High blood pressure that developed around the same time. After an MRI, they found a tumor on my Putitaty gland and it over procuded cortisol production. After about a hundred blood test and a 24 hour urine collection..they confirmed the Cushings.

In summer I will have the tumor removed and hopefully my energy and weigth will go backt o normal.

Email Dina

Labels: bios, Dina, pituitary

I have recently been diagnosised with Cushing disease.

I began having problems about 5 years ago with high blood pressure and weight gain medication brought blood pressure under control and diet pills helped me to lose a little weight.

Then just in 2008 started having stress fxs of feet for no reason bone densitiy test revealed osteopenia but with fxs osteoporsis. Blood pressure kept going higher but would not respond to more medicine. Started having kidney stones. Diagnosised with migraines/cluster headaches but mediciations not working very well, pain mainly on left side behide eye always. Had shingles. All this before I was 40. I always said "I am too young to be so old" now I know why. When blood pressure wouldn't respond to meds I started investigating and asked PCP to do 24 free urine. I read her notes she put in there "patient thinks she has cushings" Well when first 24 free urine came back 141 range 3-50 She wouldn't even talk to me just sent me straight to endocrinologist. He did cortisol total am (did it later than should cause of lab problem 10:30 am) it was still high 42.8 Second 24 free urine was 339 this time 1 mg dex suppression was 25.7 saliva was high too but hasn't gotten numbers yet.

Waiting for MRI with contrast reults but 8 mg dex supp did suppress so we know it is pituitary.

It kinda has been a whirlwind cause first test was done in October 2008.

Oh did I mention the 60 lbs I put on in like 7 months!!!!!! I look 7 months pregnant!!! ANd fatigue I get sooo tired just cleaning house. I went to my GYN a few months ago and was told in a round about way that I was overweight and of course overweight people have less energy and excessive sweating. So she said eat less exercise more.

I am in touch with Dr Jane at UVA in Charlottesville VA and as soon as he reads reports, sees films etc he will schedule me for IPSS if needed and surgery.

I am scared and excited. Scared about what lies ahead the next year Excited that one day I may be "normal" again. Looking back at pictures from a few years ago makes me cry (something else I do more of lately) There are 2 different people then and now.
I am 41 years old now, married, mother to 3 girls (ages 14,9,and 8). I have a great job as a surgical tech doing just cataract surgery with 3 great doctors.
I am very scared and excited.

Email Margaret

Labels: bios, Margaret, pituitary

My name is Bobbie and I was diagnosed with Cushings in 1995.

During this time I have been very blessed with an awesome endocrinologist that has been with me through it all.

I have had two pituitary tumors and a final removal of the pituitary with the last surgey.

I have had to undergo adrenalectomies of both adrenals. I also had a third surgery on the first adrenal removal...it had grow n back. Yes, three adrenalectomies.

With the very high cortisol levels at work destroying muscle tissue...I had my eighth hernia operation this last May. My gall bladder was also damaged and had to be removed. My last major surgery was in 2001 (adrenalectomy). For the last 5 months my body has begun to feel as if something was majorly wrong again.

After having cushings for so long...you begin to notice when something is just not right. My tests came back last week with ACTH levels over 450 and extremely low TSH.

I had another MRI this morning of the pituitary. Possibly another tumor. Any prayers would be greatly appreciated. I am so tired. I know I have to keep persevering! One more hill.

Email Bobbie

Labels: adrenal, bios, Bobbie, pituitary

After being told for ten years that all of my "problems" would just go away if I "lost a little weight, I fell and hit my head on my fireplace hearth requiring several stitches.

When it was time for them to be removed, I went to my new Internal med Dr. to have that done and ask if I was having a reaction to one of my meds as my face seemed swollen.

She had seen one case of Cushings in it's recovery phase, but had studied to help that patient. She suspect, tested and diagnosed with me with Cushings in December of 2001.

I spent the next few months searching the net, reading this site and going through testing to determine the origin of my disease, and ended up at MD Anderson with Dr. McCutcheon who removed the pituitary tumor transphenoidally.

Miraculously, over the next 9 months, I lost 100 pounds. I am no longer diabetic and did not have high blood pressure until 2008. I continued to lose until my Internal med doc actually told me I needed to put weight back on. By 2008, my pituitary function had pretty much ceased, and I am now on replacement hydrocortison, synthroid and human growth hormone. I turned 50 this year, and I feel very reborn.

Email Barbara

Labels: Barbara, bios, pituitary, post-op

We moved back to Las Vegas after a 5 year absence in the midwest in early November 2006. I was pregnant at the time.

In late December 2006, the night before New Years' Eve I started feeling different. I can't really describe it other than I felt like maybe I was going to have a stroke.

I went to the ER at Mountain View hospital because we were staying with my husband's Mom in North Las Vegas at the time. The ER did an EKG and CT scan and Ultrasound. My EKG was fine. The CT scan showed "Some sort of remnant on (my) right frontal lobe". The ultrasound showed that at 4 months my baby had not been growing for a few weeks and had no movement and no heartbeat.

The ER Dr. said he was going to call in a OB/GYN surgeon to remove the baby by D&C (Dilation and Curettage) which is a medical term for abortion. He was also going to refer me for an MRI to find out what appeared on the CT scan. I was transfered to the Maternity floor.

We were shocked and devastated and surrounded by pregnant women and women who had just given birth to their live babies while ours is being referred as medical waste. I never saw the ER Dr. again and was never given a referral for that MRI. I even called them after the surgery and asked about the MRI and they refused to look into they also did not give me any contact information for the Dr. who did the surgery, I had no one to follow up with.

Mid-late January of 2007 I went to the bathroom cramping one morning but I only had to pee and when I wiped it was scratchy like an eggshell. I looked at the toilet paper to find a bloody mass of boney tissue and I freaked out. I had to wake my husband up embarrassed and show him, their was no way at that moment I could describe it, it was a horrible feeling!

I put the stuff in a baggie and John (my husband) took me to ER at St. Rose Sienna and we explained what happened. The Dr. at Mtn. View didn't do a very thorough job with the D&C procedure and I was miscarrying what was left of my chopped up baby. It still makes me cry and angers me!

So St. Rose referred me to an OB/GYN contracted with their hospital and tested the "specimen" I brought them. They confirmed it pieces of our baby as I had thought. They referred us to make an appointment with Sara Stephenson in Green Valley. At first, she refused to see me because I didn't know the Dr. who did the D&C, she didn't want to deal with someone else's patient.

St. Rose threatened her that if she didn't see me she was breaking her contract with them and so she did another D&C in late January 2007 at Boulder City Hospital. In May 2007 I tested positive with a home pregnancy test!

I kept trying to get Sara Stephenson to take me as a patient but I didn't have cash or insurance at the time (we were waiting for Medicaid approval) and she refused to see me. I didn't get to see a Dr. until October when we finally had coverage. The only Dr. that would accept me as a patient that far into the pregnancy was Rebecca Tyre in Green Valley (Great OB/GYN!).

At my second appointment I had gained too much weight, I had too much Protein in my urine and my urine was showing sugar too. This meant I likely had Diabetes, possibly only Gestational Diabetes, and was developing Toxemia (the new term for pre-eclampsia).

She referred me to a group called Desert Perinatal Associates who deal with high-risk pregnancies. After only a few appointments (every 3 days) they admitted me into Summerlin Hospital November 4th, 2007 (I think) with the diagnosis of Toxemia and Gestational Diabetes. I was on bed-rest and monitors for my baby.

No one had any idea about Cushing's Disease taking over me and the bedrest destroyed me! My body was getting larger while my muscles were getting weaker.

On December 7th, 2007 my baby was delivered via Cesarean Section by Dr. Paul Wilkes and Dr. Alan Bolnick of Desert Perinatal Associates. They were great! Johnny was premature, his due date wasn't until January 27th, 2008 but he was the healthiest preemie they had ever seen in the level III NICU, especially for being a white male (they normally have the weakest prognosis'). We were SO lucky! He did very well in Level III NICU and was moved to Level II NICU within 2 weeks, I think. He did so well there that when they ran out of space he was the only baby they felt could live through a transfer to another hospital so they could make room at Summerlin.

Johnny was transfered to Spring Valley Hospital under our consent which was better for us because it was so much closer! They let us take him home on Christmas Day 2007!

On New Years Eve (one year from the loss of our previous baby), Johnny turned blue in the face. We called 911 but John had aroused him to breathe again before the paramedics came. By the time the ambulance arrived he was fine, but it was still necessary for them to take him to the hospital (that's what they explained to us). Johnny was taken by ambulance to Sunrise Children's Hospital. By this time we felt like we've been to every hospital there is between Johnny and I.

John rode along in the ambulance and I stayed behind with the girls. He was released the next day, John and I stayed with him overnight while they kept him for observation.

Meanwhile, I was not recovering well from the Cesarean surgery. Desert Perinatal Association disagreed with me, they felt I was recovering normally. I knew something wasn't right, so I found a Primary Care Dr.

I went to UMC Primary and met Dr. Lisa Hohl in January of 2008. I told her everything I could think of that was wrong with me, every last symptom; I wanted a diagnosis so badly. She thought I was a nutcase and told me I just have anxiety and probably some depression. She prescribed me Xanax and Prozac and said to come back in two weeks for a follow up. I was devastated again.

I wasn't taken seriously. I must have sounded like a nut rambling off every symptom in the book, if I were a DR I would have thought the same, I guess. I didn't know what to do. I went back to see her in two weeks like she asked hoping for different results. I had gained 14 lbs. (like 1 lb a day!), she was shocked. "How is that possible?" she thought out loud. Me too. We both looked at each other confused, and wondering if someone messed up at the last appointment when weighing me.

Although I had told her at the last appointment that I was experiencing rapid weight gain. I again reminded her about how I never got an MRI after that interesting CT scan and was begging for an MRI referral, but Mtn. View didn't send her any records about the CT scan as requested.

She asked me if I had bad stretch marks during my pregnancy and I said "Yes, really really bad every where!" She asked me to show her and I did. She said "I am going to send you for an MRI, I don't need Mtn. View's records that bad, I think you have Cushing's Disease and that's why you're gaining weight so fast."

I had just read an article about it that same morning in a Valley Health Systems newsletter so I knew what she was talking about and I had even secretly thought the same thing, but didn't want to say it, it's such a rare disease, and I thought I was probably being a hypochondriac and only assuming that because it was the most recent thing I read.

She sent me off with more specific tests and a referral for an MRI. Imaging places won't give you an MRI without a DR's referral, that's why I couldn't get one on my own. The MRI showed that "remnant on my right frontal lobe" too. It was a tumor on my pituitary gland. It was an ACTH producing macroadenoma it was causing all my problems!

I was referred to an Endocrinologist, Dr. Serena Klugh. She referred me to UCLA. I was scheduled to meet a Neurosurgeon at UCLA on April 30, 2008. The tumor had to be removed, it's the only cure for Cushing's Disease. I had to have brain surgery. It was done through my right nostril instead of a craniotomy. It's called an endoscopic intranasal transsphenoidal surgery to remove the pituitary tumor. Cool stuff, not so cool side affects.

In March before my brain surgery, I went to St. Rose Delima ER because I had a bad stomach ache and way too much rectal bleeding. The ER DR there diagnosed me with Pancreatitis on top of Cushing's Disease. He gave me some pain killers and sent me on my way.

April 30 I went to UCLA and met with Dr. Marvin Bergsneider, a Neurosurgeon. He called 911 because I was short of breath and had an ambulance take me across the street to the UCLA ER and I was admitted to the hospital. They did ultrasounds on my legs thinking I had a blood clot, but none were found. My legs were very red and swollen and they later thought I had bilateral (something, I forgot, but it's really rare and more DRs disagree that was a correct diagnosis than do agree with it). They kept me there and prepared my body to withstand the brain surgery.

I was alone, John was working in Lake Havasu City, AZ at the time and we needed the money too bad for him to take time off to be with me. My surgery was on May 2, 2008. I was released May 9th, 2008 (I think).

I never made it to any of my follow up appointments, I don't feel like I could withstand the drive or the ride that far again. It was a miserable ride home. For months after the surgery I could barely move and everyone thought I was dying. I had no energy and tremendous memory lapses.

I've followed up with my Endocrinologist here. I've found a Ear, Nose, Throat DR here to follow up with, Dr. Stephen Seldon. I haven't seen a Neurologist here since, however DR. Bergsneider at UCLA did give me a referral for an MRI back in May, 2008 and his results and my lab-work according to the DRs looks like the tumor is all gone.

I'm on steroids to replace the hormone, but my body is suffering the affects of the disease still. I'm seeing a Cariologist now, Dr. Pero Kumar Kittusamy at Nevada Heart and Vascular Center and he's trying to get a referral to a local Neurologist for me. I've just had problem after problem since we moved back here.

My ENT (ear, nose, throat) DR said if I lived in the midwest again I'd be doing better with my breathing because of the humidity. It's so dry here (Nevada), it's hard to keep my nostrils moist and I get dry mouth really bad which will eventually rot my teeth which I have worked hard all my life to take great care of aside of smoking for a few years of my life (I quit May 14 of 2007).

I've seen a lot of DRs during the last two years, I've also been diagnosed with severe Apnea, Sinus Diseas, Diabetes Type II, Anxiety... With more to come more than likely. This disease is so cripling and my biggest hurdle is that my pain is being completely ignored and unmanaged so I suffer the affects this Cushing's Disease has played on my body every day.

I am attempting to seek pain management, but with so few DRs understanding this, they just don't help. They want to know what hurts. What doesn't hurt? Everything hurts and if something does stop hurting, there's always something else. I can get relief. When you tell a DR everything hurts they think you're joking or exaggerating, I am not!? I can't go in complaining about something different to get a pain prescription and run out and go in and complain about something else and go on for the rest of my life like that. I need something that can continue to provide relief without having to explain what hurts that minute, because it's easier to name the few things that don't hurt at that moment but probably will hurt before the conversation is over.

My normal weight before this came about me was 140-150 lbs. I was 301 lbs. before my surgery. I am almost down to about 250 lbs. almost 8 months later. I am not comfortable with my "recovery" right now.

My cortisol levels seem good and last MRI looked good, but I'm having many other serious problems now: Heart palpitations, Apnea, PAIN, vision problems (legally blind without glasses), dental problems, chemical imbalances, etc. I really could go on and on.

They can remove the tumor, they can replace the hormones, but they don't care to stop the suffering and pain. The effects aren't always reversib le. I wish DRs understood this disease better. I look at so many overweight diabetics and wonder if they have Cushing's, but they/their DRs have no clue. I bet Cushing's is more widely spread than it's given credit for.

I wish it Cortisol levels were checked during pregnancy or at least during pregnancy with diabetes or any other high risk. The Toxemia and Cushing's in combination almost killed me and my son both! I'm still not confident I've beaten it. I believe the tumor is gone, I believe the blood tests for Cortisol are improved, but

I know my body is not right, not even close. No one should be in this much pain every day!

Email Darla

Labels: bios, Darla, diabetes, pituitary

My bio- I dont know what a bio actually means. I havnt been diagnosed with Cushings, but I have so many of the symptoms. I asked a docto 8 years ago to test for it but he said I wshouldnt worry about it.

I discovered an article in my A & P text and started searching.

Now I'm really detirmined to push for testing. I know I had a Ct 10 years ago that showed a slight irregulairty of the pituatory gland. The doctor said is was insignificant.

Any way I think this forum is great and I'm sure I will learn a lot.

Email Che

Labels: bios, Che, not yet diagnosed, pituitary

Dear Cushie Companions,

"Without exaggeration, I've always been an incredibly energetic, exceptionally healthy woman with tremendous stamina and drive well into my 50's. Since 2003, despite tenatious attention to diet and excersise, I've gained 45 lbs, now nearing 160 (I'm 61 years old and 5'5"). I know many large women with beautifully proportioned bodies. Mine, however, exactly replicates a Cushing's patient. I know I'm seen as a pitiable "fat-so" who should learn to leave the table sooner and get off the couch more often. How ironic!! If I weren't doing exactly that I'd easily weigh more than 200 by now. Equally disturbing are the other symptoms I'm experiencing, most of them attrituable to a pituitary adenoma. I'm utterly physically disabled when compared to my "abilities" of just two years ago!! More frightening is how quickly they're accelerating! My symptoms aren't caused by steroids, alcoholism or drugs."

The above is a portion of a cover letter I sent to a neurosurgeon last week, along with copies of the films and results of my MRI (on a 3.0 Tesla, W/WO contrast) that showed a 5x5x6 mm adenoma on my right pituitary gland. I've been cortisol testing for nine months with mostly elevated, but not outrageous results. The neurosurgeon personally called me within 3 hours of receiving my package and agreed I do have an ACTH secreting tumor that needs to be surgically removed. He's tentatively scheduled surgery for Nov 26th, the day before Thanksgiving!! Pinch me, I'm dreaming!!

It's incredible this happened so quickly when so many of my Cushie comrads are still waiting for a diagnosis years into their disease. I must give credit for my success to sites like yours that provide education and incredible information, stress the importance of being your own advocate by taking matters into your own hands, being totally prepared for your doctor's visits; speaking their language (in medical terms); immediately dumping those who aren't effective, believing or productive; seeking out the most qualified and preparing your presentaion as if you were an actress auditioning for the lead in a movie!! It should include your "resume", before-and after-photographs, all test results to date, a brief out line of symptoms and when they occured. I hope you'll be as fortunate as I was!!! I promise to keep you posted. Thanks for your encouragement and prayers. I'll be in recovery one week from today!! Happy Thanksgiving, everyone....

XXXOOO Bethnaz

Email Elisabeth

Labels: bios, Elisabeth2, pituitary

Hi, my name is Kathleen. I'm 24 years old and live in southern pa.

I had my two pituitary tumors removed 8/22/08 and I'm still not feeling any better really.

Over the last decade I have been diagnosed with cushings, Lyme, lupus, endometriosis, sinus
tachycardia, fibromyalgia, arthritis, asthma, the list seems to go on and on.

And I guess I had it in my head that once I had this surgery that I would magically get better and move on with my life - go to college, get an apartment, get my license, and hopefully lose all the weight so maybe one day I could be confident enough to start dating again.

Its been nearly 3 months and I seem to be losing hope. My neurosurgeon says that the pathology reports showed "essentially" nothing (still not sure what that means) and that he doesn't need to see me again.

The ENT who did the surgery was wonderful but can't really help with anything but making my
nose/sinuses/gums ok. :) And endocrinologists - I have been seeing them for ten years, and never met one whom I liked or who was helpful. Right now I'm getting a full cardio workup to try to fix my weird rhythm.

All of this is being done at Georgetown in D.C, but I've been all over the east coast. I don't know, I guess I hoped maybe you'd have some insight or hopefulness to latch on - cause I put all my eggs in this basket and I feel like I'm about to drop the basket.

Thanks for listening,
Kathleen

Email Kathleen

Labels: bios, Kathleen, pituitary

I can still go for walks everyday, bike in moderation, I boogie boarded over the summer even skied last winter. It seems that recovery time is long and cure rate is low.

I really need suggestions from the Cushing's network.I have diagnosed with a pituitary 7mm tumor, and cyclical Cushings. I have had two episodes in the past 18 months that were more intense (moon face, bloating, humps, fallen hair, high blood pressure and pulse. I have always had a problem with facial hair and removed it with laser, but it came back. ).

Right now most of the symptoms are gone, except for the palpitations (my pulse ranges from 76-90, I drink lots of water to control it...) and sleeping between 5-6.5 hours. I am really thin, I eat only healthy, antiinflamatory foods as a way to control my reumathoid arthritis and it has worked!

An MRI found waht it seems to be a "7" adenoma on my pitutary gland I had two suppresal venous samples, the second one supposedly confirmed it, but only the radiologist who performed has interpreted it. Eventhough my endocrinologist was good regarding diagnosis after a year and half, he has not provided with opportunities to discuss the disease and the long terms effects of a possible surgery .

Both my primary doctor and the endocrinologist are sending me to see a neurosurgeon in the group. I went to a pituitary specialist but she is going out of town and also needed better access to lab results.

I am very discouraged and as I hear about my peers' experiences after surgery I am not sure if I will better off. I am cosider going to a Cushing' disease specialist, I am running out of time with my medical leave from work, but I don't want to rush to make a decision that will have such an impact on my quality of life.

Please help!

Email Viv

Labels: bios, cyclical, pituitary, Viv

I was dignosed with Cushings after a long time of feeling many symptoms with no connection. I got the dx instantly once I was sent to an Endocrinologist. Then many tests to support the dx. Some were not very pleasant.

Within a matter of a month I was in surgery for a Pituitary tumor. I also had a mass on each adrenal gland. I had been very ill prior to the surgery. My family doctor had not listened to me. I was gaining weight rapidly.

I enrolled in Curves Gym to get inshape, kept a food journal, and yet was packing on aprox 30 lbs a month. He must have thought my food journal was not accurate. I have had a history of illnesses so he must have thought I was an attention seeker. As an infant I had double pheumonia, chronic bronchitis in my childhood. Ringworm at age 6. Planters warts from age 8-10. Many anibiotic treatments.

I was twenty and hospitilized for two weeks with an irritable colon. I was in abdominal pain and unable to hold food down. It was determined I had an irritable colon. At mid twenties I developed asthma and early thirties had two daughters.

After the birth of my daughers my body changed somehow. I started with high blood pressure at age 31. I had put weight on drastically then. The doctor ran tests wtih no explination for weight gain. (I had lost the baby weight after birth) They couldnt control the blood pressure and kept giving me more medication. I was weak. I was miserable. With the weight gain came increased asthma and I coughed myself into a hernia. Surgery.

I kept breaking bones in my foot with no appearant cause. I had casts every couple of years with no real injury. I would snap a bone walking to the mailbox. My skin went goofy and rashes appeared. They sent me to an allergist. I had the skin tests. Got weekly injections for years. Walked twice a day two miles faithfully when not in a cast. Still gained weight.

I was told I had Candidias. I stopped eating many foods for long time with no change in my health. I started to get a red rounded face. I had been very thin all my life. I looked in the mirror and didnt know the person in the reflection. I left Curves Gym one day and my face embarrassingly red and decided to talk to my family doctor about it the summer prior to dx of Cushings and he said well you are irish thats all. Come on..... are you serious?

I broke my heal bone in May when I was walking to the track at the high school May prior to DX of cushings. That break wouldnt heal. I had four casts for that break alone. I worked everyday but was exhausted. My primary doctor was not able to control my blood pressure. I developed Sugar. I was a mess. I told him I was starting to really be bothered by the fact I looked 7 months pregnant but was not. I had red face all the time. I was weak. I couldnt kneel down and get back up. I was HOT all the time. I mean really hot. I was so miserable and my kids cold from air conditioning in the winter.

Then he and I argued about my condition so he sent me to Center for Diabetes and Endocrinology. The doctor looked at me and gave me Cushings DX immediately. I was so stunned that somebody knew what was wrong. I didnt know what Cushings was but glad to have a name.

Then the tests. The urine tests, blood work. stimulation testing, ct tests, mri tests, a test from the groin to my brain that was horrible.

Few weeks later I had surgery for my Puitatary Tumor and they took more than half of my Puitatary gland also. I still have a mass on each adrenal gland fairly large in size but not yet removed. I had very high levels of cortisol and ACTH hormones that steriods were given to replace that and then to wean off of those. I am not weaning well. This Nov will be three years since surgery.

I have had reoccurance of Cushings. I have had remaining pressure, sugar, thyroid and asthma problems. I eat only 1,0000 calories a day now. I keep a food journal daily. I have lost 60lbs on this diet with the supervision of my Endo doctor. I am told to be patient.

I cant seem to wean off of Cortef. I am in pain daily. My joints and muscles hurt so much. Headaches and memory trouble. Weak even with weight loss. I should have more energy. I dont. I have been tested for HGH and it is low but not the problem I was told. Its not from lack of pushing myself because I do force myself to do things but then so exhaused. I cant walk anymore any distance because my legs give out and I begin to trip over my own feet. I had a great surgeon. He did what was necessary.

I have not been the same and have had lost some symptoms and have gained other issues. I am very grateful to be alive. My life is limited but I am here. Grateful to be alive. Cushings has changed me more and more......

Email aspcabonnie

Labels: adrenal, aspcabonnie, bios, pituitary

39 yr old - Diagnosed 20 Oct 08. Surgery 28 Nov 08.

Email Sarah

Labels: bios, pituitary, Sarah

Hi my name is Tia.

I am 43 and was diagnosed with Cushings three years ago. Funny how such a comforting word can be such a Bugger Bear in disguise.

My family has been a great support system but I think talking and hearing from others who truly understand what I am going through will be an added Blessing.

Email Tia

Labels: adrenal, bios, pituitary, Tia

Hello,

I am in the recovery process of my Cushings, but it is going oh so slowly and it is a hard route. I am not sure what to expect and am writing to try
and get some feedback.

I was just diagnosed in April 2008 while in the hospital due to almost having a heart attack due to my high blood pressure. The doctors thought I had a hole in my heart, but fortunately this turned out to be false. The doctor that was assigned to me in the hospital saw my purple stretchmarks and said under his breath that I might have Cushings. He also had heard my whole list of symptons that I had and put it all together finally!

I had heard the term Cushings before since I am a dog trainer and one of my client's dogs had it! I was just glad to have a possible diagnosis since for 4 years I had been having symptons and going to specialist after specialist. I had gained a ton of weight in my face and belly, had high
blood pressure, had blood bruises on my forearms, really weak, acne, trouble walking, purple stretch marks (which I think is called stria?), staph infection, insomnia, and on and on. Things just got worse and I eventually became disabled and still am.

My husband, who has been so supportive and great through it all, has had to run our own dog training business and take care of me for a long while now. The diagnosis was such good news, but things really haven't gotten much better.

I had the surgery on July 8, 2008 at Univ. of VA by Dr. Oldfield, who is supposed to be one of the best Cushings surgeons. I was lucky to be referred to him and have the insurance to cover it.

Dr. Oldfield removed a small tumor from my pituitary and feels he got all of it.

After the surgery, I felt terrible as you know happens and am still trying to recover. It has been almost 4 months since the surgery and am not doing very well. I am still disabled. I can barely walk or get out of bed. Every joint in my body aches. I have had nausea which has
finally gotten better due to being on protonix Is the nausea caused by the hydrocortisone? Even after 4 months of surgery I am still on 25 mg of hydrocortisone in the am. and 10 mg in pm My system is very sensitive to my decreasing the hydrocortisone, even by 2.5 mg.

My pituitary has not started back up either. My endocrinologist here in WV says I might have arthritis now. Not sure about that since the other endocrinologist, Dr. Vance, at Univ of VA said I would have aches and pains after the surgery.

It hurts just sitting here at the computer! I am exhausted and so fed up with it all! I have had a great attitude about it and have not gotten depressed through it all even though I am bipolar. My faith has helped a lot too.

Getting the diagnosis finally was amazing. I thought the surgery would be even better. I am not losing much weight, have diabetes now and am testing my sugar every few hours, high cholesterol, diabetes insipudus from the surgery, my high blood pressure is getting better thankfully (I think that was one of the scariest symptons since the meds couldn't even control it), but still on meds, am taking protonix for nausea, have arthritis or severe joint aches, really weak and tired, it is hard to walk, sleep a lot, but try and get up and stay as active as possible.
When I am overly active I end up paying for it over the next few days, by feeling more weak, tired and just lousy and end up in bed.

I don't mean to be negative and don't want to discourage anyone that is waiting on the surgery, but I am just t rying to see what the recovery processs is and whether I am feeling the way I am feeling and it is ok and true to recovery. I have been told that it will take at least a year to
recover and understand this, but don't know what to expect. each month I would have thought by now that I would be feeling a little better.

I just got out of the hospital in mid October due to dehydration and diabetes. I was in for a week. I have almost died twice due to this illness and am not sure if that is common... I haven't done much research and am not sure why. I think I just didn't want to know. It is also hard to concentrate and get the energy to do it.

Thanks for listening. I feel for all of you with Cushings. It is a long process and a really hard one at that. I am just now starting to drive a little bit.

I had 4 fender benders in a couple of months before being diagnosed and had to stop driving. It was due to the Cushings and me not being able to focus and I got confused easily. My memory has also been affected horribly and that has been really difficult.

Susanna

Email Susanna

Labels: bios, pituitary, Susanna

Hi,

I'v been on the long and bumpy road to diagnosis! Seems not so rare after all.

I just got my cushing's diagnosis on October 28. It took one year to convence them I had it, now I find out I'm one of the lucky ones.

I lost everything in my life before a great doctor that works for Hill County Heath insurance (Dr. Hardiman) looked and listened to me for 45 mins and said you have Cushing's.

That started everything rolling. Blood tests CT"S and a MRI. Then there was the fight with the Eno to make him test, at one point I layed myself down on the floor at the clinic and said I will not get up till you do something like now. Again I see I'm one of the lucy ones to have only had to go though one! As it played out I have an tumor on my Adrenal glad, but hay that one turn out not to be the problem.

After the MRI they found the oh so tiny little tumor on the pituitary gland. Small yes but a ACTH of 86, Cortisol pulsing though me like a frieght train. I have most all the symptoms of the cortisol overload. At this point I am so happy to find out I didn't go crazy and lose everything on my own! All along maybe 10 years I have been hormonaly insane. I thought I was a nut. Maybe I am a bit but I belive it was the Cushing's. I will see the Brain doc on Monday at 4:00. (three days to go) I'm am hoping for surgery and a cure.

But I know from this website it may be an even longer road from here. Thanks for giving me so much information!!!!!!

I am on County insurance so I have no say on what doctor I get, I guess I am luck to be getting medical treatment at all. So I will try and keep my tumor quiet and be good so I can get the best treatment possible!

Thanks for the ear,
Donna

Email Donna

Labels: adrenal, bios, Donna, pituitary

I started back in Jan 08 with a heart arrythmia that ultimately put me through weeks of cardio testing. All cardio came up negative, including passing the stress test at 110% for my age. I went back to my PCP and she was deadended with answers.

I started to advocate for myself asking if it could be endocrine since I had been diagnosed with Hashimoto's Disease(a type of Hypothroidism) in 2002. In particular I asked her if she thought my adrenal system was the culprit. My doc said well let's check cortisol levels. I did a salivary cortisol test that, according to the endocrinologist my doc spoke with said, was the highest he had seen.

They ordered up an MRI and confirmed a Pituitary Tumor on June 27th. My doc reacted quickly and had me go for an emergency eye exam that day to check visual fields...they were fine. Then my doc had me do urine and dexamethasone testing to see if cortisol levels could be duplicated.

Early July I had a phone call from my doc stating that since the other tests for cortisol came back normal they felt I had a non-functioning tumor but still wanted me to meet with a neurosurgeon. Finally on Aug 5th I met with the surgeon.

In the meantime I had been reading whatever I could get my hands on. I was prepared with many questions to the surgeon. Before I was in the room talking with him for 15 min. he mentioned Cyclic Cushing's as a possibility. He had me repeat the salivary testing for 5 days...all came back normal. So the opinion remained that I may have Cyclic Cushings or can watch the tumor and symtoms or I could have the tumor removed for peace of mind.

I opted to have the surgery. to remove the tumor. Last Mon. Sept 29th I had Transsphenoidal surgery to remove the tumor. On Fri. Oct 3rd the neurosurgeon called with the pathology report results being that it was an ACTH(aka Cortisol) and Prolactin Tumor. He was vague to make a formal statement to agree that it was Cyclic Cushings.

So I am home on the mend 1 week post op...glad I made the decision to go forward with tumor removal. The medical system is curious though how they appeared almost afraid to make any formal opinions. Although the surgeon did state that Cyclic Cushings is difficult to diagnose. In my opinion, the evidence is in the pathology report!

Maybe it is my imagination, but I already feel like my "old self" back 10 yrs. ago. The other bit of history for me is that after my hypothroidism was diagnosed and I was stabilized on Synthroid and Cytomel I could never get weight off and in less than 6 months in 2005 I gained 40+lbs. No matter what I tried to do for weight loss I could not budge more than 5 lbs. I am now anxiouis to see how I do. I meet with the neurosurgeon in 5 weeks. He and possibly an endocrinologist will be following my health. Time will tell but I do feel I am on the right track.

Thanks for listening!

Email Sheara

Labels: bios, pituitary, Sheara

HI!! I am new and just wanted to say hello!!

I was diagnosed with Cushing's 10 years ago in August!! I underwent 2 surgeries to remove my pituitary tumor!

It has been a long haul but I am glad to say that I made it through and keep making it every day!! I am required to take Prednisone every day for the rest of my life, due to losing half of my pituitary gland with the 2nd surgery. It is a small price to pay, I guess!! But sometimes, I really hate having to take it!!

I hope everyone is doing well and please feel free to contact me, would love to chat!!

Talk to you soon!
Nikki

Email Nikki

Labels: bios, Nikki, pituitary

This is actually the bio for my mother Kath.

Since my dad died 7 years ago my mothers health has been quite poor. She suffered heart failure a year after she lost her husband and a year later was diagnosed with type 2 diabetes, high blood pressure and then oesophagal cancer. She is 65 years old and within the past year she has become someone who looks about 90 with every symptom of cushings you can imagine.

Since approximately March this year she also became wheelchair bound. Through all of this we have tried to care for her at home meaning both my sister and i have given up work to care for her and during this time we have called her GP out numerous times, every time we called him he tried to get out of coming out then eventually after being pushed he would come out, see her, tell us she probably had one infection or another then would prescribe antibiotics and never followed up.

At our insistence he eventually sent her for a couple of tests (take into account that her symptoms were not walking, intensely vicious moods and all round general deterioration we felt it odd that the only tests he would send her for were a chest x-ray and an abdominal scan plus a couple of blood tests...after having the tests done no follow ups were arranged, not even to tell us what had been found! It honestly felt like they had decided that as she has had cancer care that her "nhs" allowance has been spent.

Mum, during this time was refusing point blank for us to send her to hospital as she said they would give her a superbug and she would die. At no time during all this did we ever consider Cushing's as none of us had ever heard of it before.

We were eventually told by her GP that he had not sent her for more tests as it would have been hard for us to get her there!!! We were carrying her to the toilet a million times a day so one hospital visit was not that hard. She had times where everything got so much worse then she would seem to start recovering for a little while before falling back again.

Every time i touched her she bled because of how bad her skin was and the way she spoke to us was disgusting- telling us to do jobs for her then immediately calling us stupid idiots because in her eyes we had not done the job fast or good enough! it was hell.

But luckily for us we knew that something must be wrong, mum has always been such a calm, gentle person that this monster she had become had to have some reason. During a follow up visit with her radiologist he looked at her and asked if she was being tested for cushings and that's when we realised what was wrong.

We arranged for her to go to hospital and honestly thought the nightmare would be over...wrong!
She has now been in hospital since the end of July 08 (it's now October 08) and in that time they told us that they would do all the tests but if they didn't find a "frightening" mass that they would send her home until it became "dangerous"- i don't think so!

Then they diagnosed her but refused to treat her until her blood sugar came down (now if i know that the sugar in a cushing's patient can't be normalised. i wonder why a so called expert doesn't know that) Well they got her sugar down, then told us to take her home as they didn't see the point in waiting for the results from all her tests to find out if it was dangerous after all.....her sugar went to less than one and she spent two weeks almost slipping into comas.

Then she got the superbug MRSA!!! Through a cut on her elbow from where the nurses had dropped mum refusing to believe she is too weak to hold her own weight. A couple of days after this and very heavy antibiotics the hospital refused to mention the bug again saying they had got it wrong! huh?

So on we go... Half way through September she was put on Ketanacazole which caused an almost immediate reaction. Each day my mum began to come back but at the same time the low cortisol started to knock her out! Her dr rang my sister (next of kin) and told her that she and i needed to make mum mobile so they could operate and needed to try to get her to wake up!?!? we visit for an hour each, each day....the physio's at the hospital must have had some other things they wanted to do-shopping maybe?

This is when both my sister and i got flu and for a week we couldn't visit. So last week we both started visiting again, and as mum had fallen into such a deep sleep they had stopped her ketonazole (they couldn't rouse her enough for taking tablets) raising her cortisol again! But at least she had started waking again and me and my sis started taking her wheelchair and taking her to the hospital restaurant whilst we were there trying to stimulate her and hopefully help with her mobility (so am i right in thinking that if someone is crippled they can't be operated on? as her dr is refusing to do anything till she can walk! they have done no bone density testing so every time they make her stand up she risks breaking more bones.)

Yesterday my neice visited and during her visit the path lab rang mums ward to tell them to get my mum off the ward as she now has C-DIFF!!!!!! All the antibiotics the dr's keep giving her have seriously damaged her gut and now we are responsible for sending my mother to somewhere she begged us not to because of superbugs and she is on her second! Before my dad died i don't remember my mum ever even having a headache but boy is she paying for that now! She has now been put on a specialist ward where both myself and my daughter can't visit because we have cold symptoms and my sister shouldn't visit because she suffers collitis! There is only 7 of us in our family so mum is now going to suffer visitorless visits on top of everything else!

Mum has a mass on her pituitary and also on her adrenal gland (the dr thinks that is because of overuse) but the plan is to remove both adrenal glands for the best chance of cure.

Every single day is a new nightmare. Since losing a few relatives to cancer i really thought that was my biggest fear but watching what my mum has had to suffer has changed my mind-Cushing's is just about the worst thing i've ever suffered and i'm not even the sufferer!
Please pray for my mum and thanks for reading.

Email Tanya

Labels: adrenal, bios, pituitary, Tanya

I'm 22 years old.

I've been sick since I was about 14 and my mother has been the one taking care of me and everything medical ever since. She's used this site for a long time and sometimes I've looked when I was down but never made an account of my own before. Needless to say, she's pretty stressed, from other things as well as this.

I don't really know what else to say, I'm terrible at bio's.

Email Meghan

Labels: bios, Meghan, pituitary