Today is

Hi I am new here, but have a few questions.

I had cushings for about 4 years before they found out what was wrong with me, I actually was the one that found out, my hubby and I were watching Mystery Diagonis on TLC a woman with the same symptoms...

I told my dr and they did all the tests..long story short, they found out I had a tumor on my Right Adrenal gland, and had to have major surgery with a very long recovery, It will be a year this August 8th...

I was about 205 at surgery and now am 116 so I did pretty well. I am going to be 35 this august....

I have just found out I am pregnant and am very nervous. I have 4 children already am am worried about this pregency..I was wondering if anyone has gone through this and am looking for any advice..

thank you
leah


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

Labels: adrenal, bios, diabetes, Leah

My story starts about 7 years ago.

I had moved back to Kansas City from San Diego. I was 5'3 and about 145-150 lbs a little overweight but I still looked good. I remember I had a very small waist and carried my weight in my butt and thighs. One day I woke up and realized I had gained about 50 lbs that was about 6 months after I returned to KC. I also found it hard to get up everyday and function. I started getting depressed. I had no idea what was happening. Luckily I was in the health care field.

I had approached my friend who was an ER doctor and asked her to help me. She was happy to try and help so after a little research she told me she thought I had cushing disease. I had central obesity and developed the round face.

So we did a CT scan and had one of the residents read it who said my left Adrenal Gland was enlarged that was 4 years ago. Well when the report was dictated by the staff radiologist he didnt mention a thing about my adrenal gland. I tried to tell this to many doctors but no one would listen. Everyone had the same advice stop eating unhealthy and start excercising.

Well I am now 42 and 2 years ago I was diagnosed with severe heart disease I have 2 stents and I ended up in January with Congestive Heart Failure. There is no heart disease in my family so it doesnt make much sense.

Well I had abdominal pain the other day and went to the ER at work. Had a CT done and what do you know this time it read that my left adrenal gland was nodular it said that it was unchanged from the last CT. Well it was never even reported on the last CT.

So I am now trying to find a new ENDO that will listen and run test on me. I have the CT scan so enough of the run around. I hope something good comes out of this.

Labels: adrenal, bios, KimK

There is a Program on the Discovery Health Network called “Mystery Diagnosis”.

Of the many Conditions featured one thing stands out to me - diagnosis of the various mystery ailments and diseases is often lengthy [ years pass by] – complicated by many variables and extremely frustrating to the patients and their families. What a relief it is for a patient to finally get an accurate diagnosis especially when the patient has been told for years that their complaints may be all in their heads or of their own making. So it has been for me – so many of my symptoms have mimicked other conditions each of them being addressed individually and not really considered to be a result of a bigger or larger problem.

After my right Thyroid gland and the mass on it was removed in the 1980’s I developed weight, cholesterol, blood pressure and energy issues. I found that exercise and diet would not and could not control my weight gain. I was active and watched what I ate but I packed on the pounds and the inches. I considered myself fit but fat. In 1998 when I quit smoking I developed type II Diabetes and put on an additional 50 pounds catapulting me into the morbidly obese category. By the turn of the Century I weighed 209 pounds on a 5’ tall frame [I am now a grand 4’10” tall], My Diabetes was poorly controlled and my body was deformed by the fat. I was a candidate for a heart attack or a stroke and I battled with depression and frustration.

I joined an internet Diabetes support group to learn about how to deal with the Diabetes and purposed to focus on improving my health. One day a group member bid the group fairwell because she had had Gastric Bypass surgery and she was no longer a diabetic. This surprised me as I had been told there was no cure for Diabetes and here she was claiming a cure. Being a natural research nut I immediately began to research the surgery and found that not only does it CURE DM II it also cures a host of other medical issues such as Asthma [to which I was prone], fatty liver, high cholesterol, and high blood pressure. All things I was living with. I found an excellent Bariatric surgeon and on October 1st 2002 he performed a form of gastric bypass surgery called a Biliary Pancreatic Diversion with Duodenal Diversion or BPD/ DS for short that allowed me to retain a functioning but smaller stomach and I was soon on the road to a smaller healthier me. My Diabetes disappeared, and I no longer had any of my former problems with the exception of the high blood pressure that remained an issue. All the medications I had been on were now discontinued but the blood pressure meds were still needed.

By 2006 I reached a weight level that was perfect for me. I went from a size 26 or 3X to a slim 8/10 and I felt and looked better than I had for many years. Life was good and God had given me a second chance to live a healthy life and enjoy His creation. In 2006 I had an incisional hernia repair and in the aftermath of that surgery I entered into a period of unusual symptoms of bloating and weight gain. Unusual because I never changed my eating habits and I seemed to be returning to that fit but fat condition. My surgeon who monitored my post op condition every 6 months ran a battery of tests and sent me for a CT scan. That test revealed that I had a mass on my right adrenal gland. He sent me to see an Endocrinologist who initially decided to watch and see what developed. Over the past year we watched and discovered that the mass, aka an adrenal adenoma had grown, and my symptoms were increasing as was my weight and size.

On Tuesday June 16th 2009 I was officially diagnosed as having CUSHINGS SYNDROME. A rare condition with less than 5 people out of a million being diagnosed with it. Cushings caused by Adrenal Adenomas are ever rarer since the majority of Cushings Patients suffer from Pituitary tumors. I am now scheduled to see an excellent Laprascopic Surgeon at the Lehigh Valley Hospital and God willing he will be able to remove the damaged adrenal gland with tumor and I should be well on the road to a reversal of symptoms and a return to good health by the time our expected grand baby arrives in late August.

The Endocrinologist explained to Hank and I that this tumor has caused my right adrenal gland to pump high levels of cortisol into my system effectively shutting down the pituitary gland and wreaking havoc on my body. Once the tumor and gland are removed the Pituitary needs to “wake up” and resume control of my hormone output and encourage my remaining adrenal gland to take over the cortisol regulation. In the meantime I will be on artificial hormones or steroids. It can take from 6 months to a year for things to return to normal.

That is my story so far but I am extremely happy to know what has been happening to me and to know that this is reversible.

Email Patricia

Labels: adrenal, bios, diabetes, Patricia

If anyone has knowledge of how long it takes to feel better after BLA, please advise. I've had unusually difficult setbacks since surgery. This web site has helped a lot so far..

I have had high blood pressure that has become harder to control for 11 years. Ultra sound did not show anything. Many other symptoms increased over the years, including diabetes, body shape, hump etc.

In feb. Of '09 a ct showed a tumor in both adrenals. I was able to get into the mayo clinic and was diagnosed with cushings and had surgery on 4/10/09.

One week later, my bp dropped, to 30 on the diastolic . My face hit the floor when I fainted. I had to be air lifted out. I received a concussion and broken nose. On 6/12/09 I had my nose operated on and a cyst taken out of my lip.

I'm on my maintenance dose of hydro (20/10). How long before I feel better? Diabetes improving. Blood pressure still high.

Labels: adrenal, bios, GailN

I'm 25 years old and was diagnosed last week with cushings syndrome.

I'm one of the lucky 1% and I do mean lucky since it's curable, to have a a tumor on my adrenal. I never thought I'd be so happy to hear "you have a tumor"

I have surgery schgeduled for 7/6. I'm quite scared but excited.

She will be interviewed in the Cushings Help Voice Chat / Podcast series after her surgery.

Labels: adrenal, bios, Joslyn

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 am a 47-year-old female, and have not felt well for 3 years now.

Two years ago I went to a local endocrinologist who looked at my ACTH and Cortisol numbers and told me to lose weight and go home and relax. She said to eat several small meals a day and to get stress free. Two weeks ago I saw a rheumatologist who looked at my lab results and said, "I think you have Cushing's. I think it might be from an adrenal gland tumor. Your ACTH is low and your Cortisol is high. I want you to go see this endocrinologist; she will love you." I had never heard of this, and I sat there stunned because I thought it would be yet another appointment with a doctor advising me to go home with some antidepressents. I cried the two-hour drive home reliving the number of times a doctor said, "I don't have time for this [when presented with my list of symptoms]" or another doctor who looked at my list of symptoms and said it was proof I was just anxious. She then told me to "stay off the internet."

My symptoms: gall bladder surgery, weight loss, weight gains, hairs on my chinny chin chin, morning blood sugar around 100. lots of dizziness, heart palpitations, ringing in my ears, thick skin on my arms, losing patches of hair on arms and legs, head hair in bad shape--way brittle, and very bad memory. The littlest of things can get my engine running--paying bills, answering the phone. I'm wondering if this is cortisol related.

Self Help--Monthy healing massage, beta blocker, acupuncture, chiropractor, naturopath with procaine treatments and vitamins, minerals, and fish oil.

I am beginning my journey.

Namaste ~Evin

Email Evin

Labels: adrenal, bios, Evin, not yet diagnosed

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

I am newly diagnosed as having Cushings synndrome. They found a 3 cm tumor on my adrenal gland. I am 28 years old Type 1 diabetic of 18 years (extrememly controlled) and a brand new mom!!

I had a beautiful baby girl in January which I feel forever blessed. Other than being diabetic I have never been sick and have always been the picture of health.

I think this may have started about 2 years ago when I noticed I was getting acne for the first time and my hair was starting to curl and change texture. Did not think much of it but in hind site I feel this was the beginning of my journey.

As of right now I have the lovely moon face, swollen back and collar bone, horrible stretch marks on my belly, and back and knee pain. Not to mention the light peach fuzz that has grown on my face and upper arms:) Lovely:) I have not gained weight for some reason but my belly does look swollen.

The depression is really effecting me because I really want to focus on my baby right now not all of this.

I meet with my surgeon on Friday to schedule the adrenal removal and wonder if once this is done I will go back to normal? I know adrenal tumors are rare and would love to hear success stories. How long do the physical and mental symptoms take to go away? Also do most people end up on hormone replacement the rest of their lives or does your other adrenal gland kick in?

Unfortunately my endo is busy and I will not even be speaking with her until after my consultation with the the surgeon any answers you have would be greatly appreciated!!!

I would love to hear success stories but it seems all of the stories I have read have been really negative. Has anyone felt truly cured after an adrenal surgery?

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

Labels: adrenal, Aly, bios, diabetes

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 don’t really remember when it first started. It was probably about a year ago when I think about it.

I found myself becoming easily tired all the time. I went from being a social butterfly and life of the party to an ‘old nana’ who stayed home all the time and went to bed early. At the time, I didn’t think anything of it; I just put it down to working hard and not sleeping well. I often had disturbed sleeps because I regularly (3 or 4 times a night) got up during the night to go to the bathroom and once I was awake, it sometimes took up to 2 hours to get back to sleep.

As the year progressed, I rapidly began to gain weight. Putting it down to ‘eating to many chocolate biscuits’ and not enough exercise, I began going to the gym 4-5 times per week and basically eating ‘rabbit food’.

The obsessive cleaning habit probably began around the same time as the weight gain; it got to the point where I couldn’t possibly think about doing anything else until I had cleaned every nook and cranny.

Throughout all of this, I was having very sporadic periods, which were very painful. I never imagined they could possibly be linked. I decided to visit my GP, who sent me off for numerous tests including an ultrasound, which resulted in a diagnosis of polycystic ovaries.

My GP referred me to an endocrinologist who then requested more tests, including a 24 hour urine collection (something I became very accustomed to during the course of my illness, eventually having to do them weekly). I heard nothing as a result of the tests, so I assumed all was fine.

As the months passed, my weight continued to raise, as it did, my self esteem fell. I also began to notice bright red stretch marks appearing on my stomach.

I reached the stage where my self esteem was so low that I decided to return to my GP. The first thing she said to me when I walked into her practice was “your face looks very cushingoid.” Having no idea what she meant, I sat down as she looked through my file. As she came across my test results that had been requested by the endocrinologist, her face dropped. The level of cortisol (stress hormone) in my urine was over 2000mg (the average person needs around 30mg per day). She instantly picked up the phone in a desperate bid to contact the endocrinologist, but was unable to get hold of him. Having left a number of messages, she told me she would be in touch once she had heard back, and so I left. I wasn’t really too concerned as at this stage, I had no idea just how important cortisol really was.

The next day at work, a phone call came through for me. It was the endocrinologist. He said I desperately needed to come in to see him. I left work straight away. When I arrived, he advised me I had Cushing’s syndrome. He spent the next few minutes telling me what this was, although it all went in one ear and out the other once he told me that it is 99% of the time caused by a pituitary tumor; all I could think of once he said tumor was ‘cancer’.

The following Monday, I was admitted to hospital for 10 days of tests (including 4 hourly blood tests)during which time my food obsession began (this obsession progressed to be the worst of them and became all I could think about). These tests concluded that I did indeed have Cushing’s.

The months that followed proved to be the hardest that I have ever faced. MRI scans, CT scans, numerous X rays. The hardest of all these was what they call a petrusal vein sampling (this is where they insert a catheter into the groin through the femoral vein which goes up to the base of the brain to look at the pituitary, they do this while awake – I could actually feel them moving around in my head.)

This test concluded that my Cushing’s was being caused by a tumor somewhere other than the pituitary (this only happens in 1% of cases, and there is about a 1 in 10 million chance of getting it). The question now was “where is the tumor?” I happened to be at one of my regular appointments at the same time as the Endocrinologist was to attend a meeting with the head of CT.

Together they looked at a CT scan I had previously had of my lungs, on which they spotted a small nodule which they believed could be the cause. Numerous more tests were to follow, including one where radioactive liquid (which I had to wait for over a month for to arrive from Australia) was injected into a vein in my arm, with the purpose of highlighting any tumors on a CT scan.

After such a long wait, this test proved a waste of time as it showed nothing (it turns out it only works 50% of the time anyway). Around the same time, I started having severe anxiety attacks, brought on by several major stresses. I decided the only way to ease the anxiety was to remove all the stresses possible; I did this by moving home to my parents.

The next week, another CT scan was required to see if the nodule had grown, it hadn’t. Feeling completely stumped, the endocrinologist decided to take a risk and remove the part of my lung that the nodule was on. Because it was so small, the surgeon required a hook wire to be placed in it in order to see where it was. This procedure was incredibly painful and one of the worst things during the whole illness that I’ve faced.

Disappointingly, this surgery was a failure, leaving me in the high dependency unit for 6 days and in immense pain.

The next step which was seen as a definite cure was to remove the adrenal glands (this really was a last resort, as once these are removed; hydrocortisone replacement is required for life in order to stay alive).

After this surgery, I spent another 6 days in the hospital, during which time, I experienced mood swings, dizziness, nausea and much more while my body adjusted to lower cortisol levels. I was sent home on morphine as I was still in so much pain from the surgery, however when I went in for a checkup 5 days after being discharged, the endocrinologist couldn’t believe I was still on it. In total I had been on it for 6 weeks, resulting in severe withdrawals when I stopped taking it (why anyone would voluntarily take drugs I will never know after going through this).

I am now 5 weeks down the track. I am not going back to normal as quickly as I had expected, physically; I am constantly tired and am still in pain from the lung operation which was 2 months ago, I’m told this could last up to year.

However, on a positive note, I have lost around 5 of the 15 kgs gained during the illness. I am also mostly back to normal mentally.

My Cushing’s disease is cured now, however I am now labeled as being a sufferer of Addison’s disease (where there are no adrenals, or the adrenals don’t work).

There is a long road ahead still, including reconstructive surgery of my legs, arms and torso, but I sure am glad to be out the other side of the worst of it.

Email Kirsty

Labels: adrenal, bios, ectopic, Kirsty, PCOS

I had Cushing's in 2002 and I was very sick and I believe I am still affected by the high cortisol level I had and that it realyy ruined my body.

I had surgery to remove an adreno cortical carcinoma which was producing the high levels that were making me so sick.

I am 59 years old and would like to be a part of this group again to talk with others who were so affected.

sandra b.

Email Sandra

Labels: adrenal, bios, Sandra

In May of 2008, I was diagnosed with 2 tumors on my left adrenal gland. I'm on my 4th endo who just recently diganosed me with Cushings.

I suffer from low potassium, stage 3 kidney failure, several muscle aches, extreme tiredness, and various of other systoms of this awful diagnoses. Why don't they just remove the tumors????

I have went to doctor after doctor for almost 2 years before even being diagnosed. I gained 80 lbs, have now lost 50 of those just from being so sick.

Email Tami

Labels: adrenal, bios, Tami

Lisa-Lee Dark is related to two of the most famous women from the last 200 years. Adelina Patti (1843-1919) who was the most famous and wealthy opera singer of the nineteenth century. She was a mega-star before the term was ever invented by media tycoons a century or so later. Even today, it is still no exaggeration to regard her, still, as a phenomenon. Adelina was probably the first female singer to ever record her singing voice onto a record, back in 1904. Bette Davis (1908-1989) wasn’t only related to Lisa-Lee, she was also her God-mother. Bette was known as ‘The Fourth Warner Brother’, & was one of the most successful & greatest actresses of the twentieth century.

lsa-Lee has had an extremely difficult life. Growing up there were problems at home due to drink, violence & money troubles. Lisa-Lee would walk the streets to get away from the troubles, but this only brought more problems, because she was badly abused by a paedophile ring / group, although she says that the majority of the abuse was physical. Lisa-Lee also got very badly bullied in school, she would get kicked, punched, spat at (in the face), have bricks thrown at her, get hit with sticks & have obscene things screamed at her on a daily basis.

These weren’t Lisa-Lee’s only problems, as she was brought up a boy because of a rare medical condition called ‘congenital adrenal hyperplasia’ (CAH). This happens because the foetus is over exposed to the male hormone, testosterone, & in some severe cases, like Lisa-Lee’s, the over exposure to the male hormone leads to fusion of the female genitalia.

The female organ is then enlarged, so it looks like a male organ & it is then easy to mistake new born girls for boys. As a youngster Lisa-Lee was told that if she took more of the male hormone, testosterone, she would be able to stay male ( as she believed herself to be), but that was untrue & all it did was make her wider, have more than half her hair fall out, & make her gain an extra 6 stone (84 pounds) in weight, but Lisa-Lee is now trying to lose the weight & accept herself.

Lisa-Lee’s only refuge was her music, acting & writing. Her career began very young, she first got spotted singing in her local park aged only 6, but due to shyness it would take her 3 years to build up enough courage to go into the recording studio. Lisa-Lee began singing classical songs & by accident got into singing dance music. Lisa-Lee has sung on dance records that have gone on to sell over 10 million copies world wide, & has sung lead vocals for the new age, Christian, classical cross over group New Era, who have sold over 6 million albums, making Lisa-Lee one of the most successful Christian singers in the world. Lisa-Lee is also regarded as one of the most successful session singers of the 1990’s. Lisa-Lee has also had some acting success, but only as a voice over artist.

All this work never brought Lisa-Lee any great wealth, but she earned enough to put herself through college & study her main love, music. Lisa-Lee has a 7 octave range, she used to have a 9 octave range, but since beginning her opera career in 2007 she has lost 2 octaves from her range. Lisa-Lee was a self taught singer until quite recently. Lisa-Lee began releasing records as a solo artist in 1999 & has had moderate success, but it’s all been to get her ready for her opera career. To date Lisa-Lee has starred in 5 opera performances. Three Puccini operas, 'Turandot', 'Sr. Angelica' and 'Madama Butterfly'; Lisa Lee has also starred in 2 Verdi operas 'Rigoletto' and 'Nabucco'.

The opera critics have been saying that Lisa Lee has one of the most beautiful voices in the world. The opera company that Lisa-Lee is signed to were so impressed with her vocal talent, they signed her straight away to their opera house and record label. Lisa Lee signed a £2.5 million deal with them.

Lisa-Lee has been busy promoting her debut opera recital album, titled, 'Sola, perduta, abbandonata', which means 'alone, lost, abandoned'. This album got released early in 2008 and to date it has charted on the opera / classical charts in the EU,also released a special limited edition album, titled, 'The screen behind the mirror'. This album contains Lisa Lee's debut opera recordings and her audition for the opera company. This album has also been successful in Europe having charted in 8 countries. Lisa Lee will release a new album titled 'Almost nothing', in April 13, 2009. This will also be released in the states and the rest of the world through out 2009.

Labels: adrenal, bios, CAH, LisaLee

I am a 59 year old female.

I was diagnosed with an adrenal tumour 15 months ago, then eventually diagnosed with Cushings and the adrenal gland and tumour were removed in July 2008.

At the time of surgery it was found that the other adrenal gland was not functioning and I am now therefore hydrocortisone dependant and classified (I think) with secondary addisons.

I suffer from various cushings problems such as high blood pressure and osteoporosis. I am just beginning to manage my medication but am finding the problem of firstly suffering from Cushings to suffering from Addisons very difficult to cope with - one extreme to the other.

I would really appreciate any advice anyone can give me who is suffering from a similar problem.

Email Leslie

Labels: adrenal, bios, Leslie

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

In 2002 I was an Air Traffic Controller in the United States Navy. I had graduated top of my class as the honor graduate and I was the only female in my class. I had also been one of 4 people and the only female, to win an award upon completion of boot camp and it was presented to me by the Master Chief Petty Officer of the Navy. According to all my evaluations I was "a rising star" and "expected to do great things". I was stationed at Naval Air Station North Island which is a base located on Coronado Island across the bridge from San Diego in southern California. Things were going well for me and then all of a sudden it all fell apart. I started to get very ill, I gained an obscene amount of weight in a short period of time, suffered from insomnia, anxiety, uncontrollable bowels, constantly irritable, excess facial and body hair growth, stopped menstruating, paper-thin skin that bruised to the touch, brain fog, a round face, sunken in eyes with bags under them, and though I went repeatedly to medical, they told me and I quote, "Quit smoking, quit drinking, dump your boyfriend, and go to the gym" and that would resolve my problems... Well it didn't, I got worse. It affected my work and every aspect of my life. I was constantly being told that I was not sick, it was all in my head and that I needed to be seen by psych and be put on anti-depressant medication. Being in a career that was mostly men I suffered constant comments and criticisms and even ate my lunches in the women's locker room because I was embarrassed and ashamed of my appearance. I was treated even more poorly by the women I worked with and my superior officers who were cruel and didn't take my symptoms seriously. When I really started to get worried about my health was when one day I was in the shower and looked down at my stomach and noticed these horrible purple marks all over my body. They had just appeared over night. I went immediately to medical and asked to see a doctor. I showed her the marks and she looked at me like I had a screw loose and said, "Um, those are from being pregnant. Have you ever had children?" To which I answered, "Not that I am aware of! You have my medical records, you know I have no children! What is going on!" My mum, who was worried about me, came down to visit me from Seattle and when I picked her up at the airport she didn't even recognize me I had changed in appearance so much.

Finally, a doctor by the name of Lt. Graves showed up at North Island right out of medical school and took one look at me and was certain I had what was called Cushing's. She had remembered reading about it in med school.

She saved my life.

All it took was one blood test and I was diagnosed. I had a tumor on my left adrenal gland that was causing my left adrenal gland to over produce the hormone cortisol.
I was diagnosed but they waited 2 months to get me in for surgery and during that time my weight jumped dramatically from 180Lbs to 239Lbs and I was sicker than ever. I was now so large my uniforms no longer fit and when I filled out a request signed by my doctors to wear civilian clothing it was denied by my chain of command. I finally had to submit a request for maternity uniforms and had to wear them to work and everywhere on base even though I was not pregnant. I smoke cigarettes so every day I had to suffer the glares and threats of other members of the military who didn't know my situation saying that I was a child abuser and a horrible person. I It was so hard and really took a toll on me. It didn't help when I told people it wasn't a baby it was a tumor. They thought I was a bad person. I didn't want to get up in the mornings anymore. I wanted to hide under a rock and disappear.

Finally in August 2003 I had an adrenalectomy at Naval Medical Center San Diego and they took out the left adrenal gland and the tumor. The surgery was supposed to take 4 hours but ended up being over 9 and there were complications. Another team had to be called in due to the trouble my surgeon was having and the fact that I was so filled with this hard lard-like fat they had difficulty getting at my adrenal gland. I was treated horribly in recovery, and unless my mother was there I was ignored by the staff and luckily I was sharing a room with an officer's wife who was able to summon the nurses for me because they didn't respond to my call button when I needed help to get to the bathroom. It was horrible. Two days after coming home from the hospital I had what I thought was a heart attack and I actually was in so much pain I told my mother I was dying. She called 911 and the paramedics came. They dropped me twice getting me on the gurney and were rude and made comments about my weight. I was rushed back to the hospital to find that I was almost septic from all the pain medication I was taking.

I also had hernia repair surgery in February 2004 and now I have titanium mesh secured by titanium screws covering the entire inside of my abdomen. It really freaks out x-ray technologists if I don't tell them beforehand.

I started to get better and the weight was just falling off but then I stopped recovering and began to decline in health. The Navy doctors still found nothing wrong and told me I was "malingering" but my mother knew there was something else going on with me. I was seen by psych again and placed on anti-depressants again. They tried all of them but nothing helped. The Navy at this time was now trying to get me discharged because according to them I was no longer fit for service. So I was not only fighting to get treated I was fighting to prove my medical situation to a board of officers who had no clue what I was actually going through.

We went to see Dr. James Webber in San Diego and he diagnosed me with Hashimoto's Auto Immune Thyroiditis. He also found that my right adrenal never started pulling it's weight and diagnosed me with Adrenal Insufficiency as well. He started me on Armour Thyroid and Hydrocortisone. I started to slowly feel better.

So after years of trial and error of medications and going to a ridiculous amount of different doctors, I was finally starting to feel better, but the damage caused by the rapid weight gain and weight loss turned my skin into a stretched out mess! I was promised, and its written, in my medical record that I would receive re-constructive plastic surgery to repair the damage caused. But after I had an abdominoplasty and umbilical hernia repair surgery in 2005 the Navy decided that I was unfit to continue my contract and tried to discharge me without any disability.

I fought them tooth and nail with the help of my new division officer, Lt. Candace James (my hero), but still ended up with a pathetic 30%. I took my records and ailments to the VA and they gave me 70% which is better than 30% but they still didn't include all of my issues... I will continue to pursue all avenues to rectify this situation. I did not go to war in the traditional sense over in Iraq, but I feel that I fought my own war and my enemy was not only Cushings but those very people who were supposed to be keeping me healthy and safe. It is a war for my health and my life that I am still fighting.

When I moved back home to Seattle in late 2005 I had to find a new doctor and I looked all over. I went to many who actually had the nerve to tell me, "Wow, you sure have a lot of issues, are you sure you actually have all these things?" Having retired military insurance is affordable but most doctors, don't accept it, as they don't get enough money from the insurance company. So it took me years to find doctors that would see me with this insurance. Seeing a traditional Endo now instead of Doctor Webber I was taken off the Armour Thyroid because my new doctor doesn't agree with that method of treatment and placed on Levothyroxine and Cytomel. As well as adding Fludrocortisone and changing my dose of Hydrocortisone. I take Lonox and Hyoscyamine for my IBS. I had gone to the ER when I had an IBS episode which they misdiagnosed as shingles of all things, even though I had no symptoms of it, and when I gave my Medic Alert Card to the woman who checks you in, she said to me, "I'm not writing all this down! This is too much! You can't have all these things!" I explained to her that she had a copy machine and didn't have to write it all down. She could just make a copy. But the bad treatment continues everywhere I go it seems. Even with a diagnosis and surgeries completed, they still doubt my illnesses. It makes me sick.

I am now retired, and when I tried to get my plastic surgery through the Naval Hospital they told me I had to "pay out of my pocket" because I was no longer active duty... how convenient... So I submitted it to my insurance time and time again and they kept denying it, saying "it was cosmetic and I could live without the repairs..." well yes, but not comfortably, and if they had paid attention to my symptoms and not ignored my health conditions I wouldn't have gained 100lbs and needed re-constructive work done in the first place!

So thankfully my grandmother and parents made it possible for me to begin the repairs November 2007 and I had part two July 31 2008. I was finally back down to size 29 in jeans and I was feeling great! Although its not all fixed. I have had every possible treatment for my stretch marks that are up to 1/2 inch deep in places, making me look like I gave birth to a litter. I look like I have been mauled. Nothing has helped from laser treatments, to supplements. I wish that they had payed attention to my symptoms and they never would have happened.

In November of 2008 I started working for UPS as a seasonal driver helper for the Christmas rush and I was on my feet 14 hours a day hauling packages up and down driveways and stairs and it was really strenuous and active work. Everyone I worked with lost anywhere from 10-25 pounds this peak season because we were so busy and when I went to put on my new jeans my mum had bought in October for my birthday I found I couldn't pull them over my hips. Thinking this strange since I was so active and had just had a ton of reconstructive surgery done, I went to my primary care physician who weighed me and I found I was up to 171lbs. Now I know that that is not acceptable for me. I was weighing between 155-160lbs after surgery and swelling and to jump up like that was not okay. It should have gone down to 145-150lbs after the swelling decreased and since I was so active. She told me I was being silly and even knowing my history with Cushings said to me that all women gain weight as we get older... the same stuff I heard back in the Navy when no one was listening to me! I am 28 years old! I hardly call that "getting older". I was finally able to get in for an appointment with my Endo here in seattle in February 2009 and when I got on the scale I was 176lbs. I had gained 16lbs since I saw him pre reconstructive surgery, which included liposculpture so I shouldn't weigh more after the surgery than I did before it. My face has started puffing out and I have dark circles under my eyes. My skin is dry and cracked on my hands and feet and no matter what kind of shampoo I use, I have flaky dandruff that wont go away. I am irritable and anxious. I am lethargic and exhausted all the time. I never feel good and I wanted him to tell me what was going on. He ordered blood work and a 24 hour urine test which I completed and I am now waiting for the results to come back.

When I was in the Navy I asked about a possible reccurence and they told me again and again that I couldn't get Cushings again but the more I research it and talk to people the more I feel that they didn't have a clue what they were talking about. My two scenarios are possibly a reccurrence of Cushings or my right adrenal gland is finally starting to work and I and I am having Cuhings-like symptoms due to too much steroids. Right now I am so frustrated and worried. I don't remember being 23 or 24 due to all my medication and the fact that Cushings ruins your memory. I know Cushings took my 20s and I don't want it to take my 30s as well. I have recently applied to be an Air Traffic Controller for the FAA and I don't want a relapse to ruin my chances of this wonderful career again like it did back in 2002.

Since it didn't have my other diagnoses listed above I thought I would include them here. Maybe others have had the same issues I have? Maybe I can help someone?

History of Cushing's Syndrome, Adrenal Insufficiency, Hypotension, Hypoglycemia, Hypothyroidism (Hashimotos Disease), Hiatal Hernia (GERD), Abdominal Hernia Repair, Umbilical Hernia Repair, Urinary Tract Infections, Irritable Bowel Syndrome (IBS), Kidney Stones, Hematuria, Insomnia, Chronic Back Pain, Neuropathy, Motion Sickness, Tinnitus, Mycoplasma Pneumonia, Sacroilitis. I was a very healthy person before I got sick... I don't know why this happened to me. I want it to go away. I want my life back.

Thank you for letting me tell my story. It has been a long hard journey and a very lonely one. I am glad that I am now able to share with others who actually get it and know what I have gone through. I will keep you updated as I get my results.

Mahalo.


Email Jen

Labels: adrenal, bios, Jenny, steroids

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

I am a 54 old wife, mother and grandmother.

I have been terribly ill for 17 months with adrenal insufficiency and a prolactinoma. I do not know yet if it is a nonfunctioning tumor or not, but I suspect so since I do not have any of the Prolactin symptoms. I will be evalutated soon for that.

I have gone the whole nine yards at Vanderbilt University Medical Ctr in Nashville recently. This is after 17 months of hell and seeing doctor after doctor. No one would listen to me.

Last July I think I was actually dying and was probably in adrenal crisis. I had hypertension and hypotension epsisodes with two ER visits with extremely high blood pressure and stroke symptoms. I was seen by many doctors who were all headed in the wrong direction. I was basically told it was female problems, stress, menopausal, etc. etc....you know the routine..many have the same story.

However..mine has a twist. I was so desperate for help I went to see a Mennonite Naturopathic healer in Kentucky. His name was well known of helping so many people. He not only seen his Mennonite Clan but also saw many "English" as we are called. He does Iris Iridology. This is a very old time practice that is about faded away. It takes years to learn and I suggest if you go to one make sure they have done it for years.

He looked into my iris with a small eye magnifying glass. He told me all the problems that I have been diagnosed for years, Fibromyalgia, IBS, Sleep Apnea, Insomnia, hypertension, hypotension, digestive disorders, and early pancreatitis. Now this was different than the doctors as my sister told me NOT to tell him any symptoms at all, much unlike the conventional doctors who heard all my symptoms. Then he really shocked me when he told me I had adrenal problems and something wrong with my pituitiary!!!!! He gave me natural medicines that helped some but I knew it was not the final ending to this problem.

I went back to my FP at the time and told him my horrible symptoms of flushing, anxiousness, nausea, dizziness, digestive problems, inflammatory pain etc, etc. He finally checked my norepenephrine levels were 624! He then did a MRI of my adrenal glands.....negative.

But then he went back into the service and left me holding the bag...no referral no recommendations. I was ticked. I had to search for a new FP on my own. Finally I found a FP in my own county that everyone said loved a challenge. He thought I had a carcinoid tumor or an adrenal tumor.

After blood tests showed several things he sent me to Vanderbilt. After my first appt. they tought the same thing. However tests revealed that my cortisol was lower than a 1. Barely registering. No wonder I was so ill. They did a MRI of my pituitary and found a 6 mm tumor..suspected to be a Prolactinoma.

So the Mennonite man was batting100%, conventional doctors 0%. Well, I know I still need conventional doctors so I can't beat them up too much.

However...why is it so hard to get doctors to listen...even my regular Endo missed all this last fall even though he suspected orthostatic hypotention? Men doctors are horrible, particularly for not listening to women and labeling them hysterical depressive menopausal ninnies!

Would love to hear from others please about their experiences too? Meds or surgery for Prolactinoma...what worked for you?

Email LaDawn

Labels: adrenal, bios, LaDawn, prolactinoma

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

My name is Christina, and I am 28 years old.

As long as I can remember I have ground and clenched my teeth. I was always a little chubby and was suspected of having a growth hormone deficiency when I was a child. I had some growth hormone so my parents chose not to give me the injections.

I spent my teens and twenties drastically cutting calories, eating low carb, taking diet pills, and exercising to lose weight. Taking drastic measures I was able to lose weight until I was 26. All of the sudden I was depressed, developed a lipoma, and gaining weight.

I knew I needed to make some changes. I quit smoking, drinking, and ate a diabetic diet. I worked out everyday for no less than 60 minutes. With no weightloss, I went to the doctor and he diagnosed me with depression. Went on cymbalta and felt happy, but it made me gain more weight. I also made my already horrible insomnia worse.

However, I knew something was wrong. I thought I was hypothyroid. I read all these boards on subclinicial hypothyroidism and was convinced that's what was wrong. I had an endo test my growth hormone and the stim test showed that I had more growth hormone than he has ever seen. I am only 4'9". I guess I never received the benefits of all that GH.

In march I went of the antidepressent and I hired a personal trainer. I thought maybe these docs are right. Its all in my head. My therapist and my boyfriend told me to stop going on the internet to figure out what was wrong. I weight trained 2 days a week from March to Oct. I did cardio on the off days for no less than 45 minutes. Between this period I went from 139 poinds to 156 pounds. I was so frusterated!

My therapist recommended a doctor who combined holistic and conventional medicine. Right away the saliva tests said my adrenals were all screwed up. She put me on Bio-identical hormone therapy, vitamin D, iodine and adrenal support. I also started using light therapy for the depression. I felt 100% better with my moods. The only thing missing was the weight loss.

I have stopped the BHRT because of my cortisol levels, and all my symptoms are coming back. More weight gain, stretch marks, hair loss, acne, slight lip hair, depression, anxiety, and panic attacks! I am going to a new endo on March 20.

I feel this is genetic. My mom has the body type, the cholesterol, inability to lose weight, vertigo, hypertension, and the hump. I don't have all these symptoms, but I know its genetic.

Even if its not cushings, I know it has to do with my adrenals and cortisol levels. I cried when I read this website. I'm scared that I'm doing the same thing I did when I thought it was hypothyroidism and GH. I just know there is something wrong. Its not normal to gain 30 lbs in a year, especially with the amount of diet and exericise efforts I put in. I just pray the endo listens to me.


Email Christina

Labels: adrenal, bios, Christina, genetic, not yet diagnosed

I'm a 62 year old male diagnosis with Cushing Syndrome in Jan. 2005.

My doctor keep telling me I needed to lose weight because that was the reason I was so tired all the time, I tried but nothing worked,I just kept getting bigger but in a different way,moon face buffalo hump large purple stretch marks.

My wife kept going on the computer and put in somethings in the search and she came up with pictures of people that look like me and had Cushing Syndrome,made me called my doctor to have me tested for Cushings and sure enough I had it.

Went for CT scan and that is when they found the tumour. Before I was scheuled to have it removed I ended up in the hospital with blood clots in my leg and lung had to take care of that first then have surgury.

My surgury was on June 5,2005,and I'm still doctoring for it. I have been taking the cotisone pills up until 4week ago,the doctor would start weening me off of them and then I would crash and would have to start all over again.

On Friday Feb.19th,I had to go to the hospital for 3 blood test to see if my adrenal finally kicked in,I sure hope it has. The cortisone has done my body some damage. I have osteoporosis very bad.

Needless to said in 2005 I had to leave work on disibility retirement, and have,nt felt good since. I'll let you know my test results.

My Best To All,Joe

Email Joe

Labels: adrenal, bios, Joe, surgery

I am 49 years old.

For years and years, I had high blood pressure, extreme excess belly fat, excessive weight gain. I am 5 ft 3 inches, and kept gaining weight up to over 220 lbs. . . and I ate healthy and exerised.

I changed doctors and even though tests came back normal, she sent me to a cardiologist. He did a cat scan and by accident found a tumor on my adrenal gland.

I was diagnosed with cushings syndrome and type2 diabetes.The tumor was pushing on the adrenal gland and pushing out too much cortesol into my system.

July 19, 2007 I had Robotic surgery to remove my adrenal gland. I lost 80 lbs in 5 months.

There is hope and I am one of the lucky ones who came out of it pretty good!

Email Shawna

Labels: adrenal, bios, diabetes, Shawna

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

Naturalpath believes I have severe adrenal fatigue, and thyroid problems. I have an cyst 1.38 cm on my adrenal gland, non cancerous.

I have all symtoms of Cushing. My blood pressure only low in morning. I take blood pressure medication. I have been diagnosed with 44 illness and list keeps growing. I am extremely tired all the time, even when I get out of bed. Diabetic, and have a number of autoimmune diseases, and severe allergies. I am 55 this year, and I have been going down hill for many years. Had to go to naturalpath for help.

Email Gerri

Labels: adrenal, bios, Gerri

Hear my Cry for Help!

I was a happily married, 37 year old mother of 5, successful music teacher until this "thing" overtook my body. I went from being an active, healthy, popular child, teenager, and young adult who had easy pregnancies/deliveries/recoveries to what I am now: a FREAK of nature.

Symptoms I've noticed since the birth of my 5th son, a year ago: huge hump on my upper back that appeared out of nowhere and only gets bigger; rounded face, fat, red cheeks, and double/triple chin; stretch marks that are wider than 2 inches and longer than 6; abdominal boils and other skin infections that have to be lanced and won't heal; vision problems; SEVERE fatigue and weakness (yesterday I couldn't get the toothpaste out of the tube); sudden and intense headaches that come out of nowhere; skin that bruises so easily that I can no longer wear a bra, carry a diaper bag, or get my blood pressure checked without scrapes and bruising; thick and coarse hair sprouting of my cheeks, chin, breast, and toes; hair disappearing on my pubic area and head; dizziness; vertigo; EXTREME weight gain (I am 5'4" and now weigh 264.5--more than I've ever weighed); cracked lips and mouth ulcers and cracks on the sides of lips that won't heal; constant yeast and bacterial infections; heightened sensitivity to light, smells, and sounds; cloudy urine; varicose veins that are widening and throbbing; loss of memory and ability (I have double master's degrees in English and Music but had to ask my husband if America was a country the other day, and couldn't remember that my Mother took me shopping for black jeans a week ago); diarrhea; anxiety; depression; back ache; water retention so bad that jeans will fit one day and not the very next; arrhythmia and tachycardia; craving salty; bones popping and grinding; 4 root canals in past year; backache; neckache; numbness and tingling in extremities from time to time (or always being cold there); irregular and shortened periods; blemishes and sores inside my nose; insomnia; decreased libido and inability to orgasm; skin tags (near 50 the past year); and weird hyper-pigmentations on my face, under my eyes, and on my belly and elbows.

I was treated by my PCP who asked me to go to Vanderbilt and "be checked for Cushings". I went to Vanderbilt and was welcomed by a wonderful endocrinologist who instantly believed that I had Cushings and even commented that I "was like a walking textbook description of Cushings". My bp was 166/100 that day, and because my headaches and vision issues were so bad, she ordered an MRI thinking it was pituitary. MRI results didn't prove anything abnormal. She ordered 2 48-hour cortisol tests which also came back with "very normal levels" which means that she no longer wants to run the catscan on my abdomen to find the presence of adrenal tumors. My bloodtests came back with high chloride blood and love creatinine blood. Basically proves my muscles are wasting. No further comment.

This morning I spoke with her on the phone and it sounded as though she were finished treating me--she would "pass it by some colleagues...but with the cortisol levels being normal, there's really not Cushings afterall...". She asked me to "follow-up" with my PCP and "get a CBC to rule out the big things" such as AIDS and cancer. Geez. She also said I may be anemic. Um, ya. I've been anemic--even severely--for 3-5 years now.

I am frustrated, deeply depressed, in tears, very weak, tired, and not wanting to be another statistic that seems so common on this site--going through 18-30 physicians before someone finally notices that something is wrong with me. I know in my heart I have Cushings--what else could it be. But attempts to prove it seem futile, and I'm only getting worse. It seems easier to give up than to spend hundreds of thousands of dollars and turn into a guinea pig and pin cushion for someone to finally say, "oh ya--just because your urines were off doesn't matter--there's still clearly something wrong". I feel like I'm a candidate for "Mystery Diagnosis". Unfortunately, I don't have the patience or perseverence to sit around (or lie in bed all day, rather) and wait.

Any thoughts? Prayers don't seem to be working, even though I'm married to a preacher.

Rebecca

Email Rebecca

Labels: adrenal, bios, not yet diagnosed, Rebecca3

I am 57 years old, and have had a hump on my back since childhood. Even my surgeon doesn't know what it is. I had gastric bypass surgery in May 2007 and have lots 55 pounds. Unfortunately, I have only gone down two sizes in pants because of my large abdomen. I have hirsutism on my face, neck, tummy, upper thighs, and even on the edges of my ears. My doctor just laughs when I say that. I have had depression for many, many years, and my concentration is sorely lacking. I sleep very poorly due to restless legs and inability to relax.

My lab tests in 2005 showed an elevated cortisol, but a negative dexamethasone test. I have a 1.1 cm adrenal adenoma. My latest 24-hour cortisol test last week was 53.7, highest in that lab being 50. At my doctor's suggestion, I emailed an endocrinologist for whom I do transcription, and he commented that it is possible, although not definitive that I have Cushing syndrome. My regular doctor seems reluctant to order the tests advised, probably because he thinks I'm grasping at straws to find out why my weight loss has stopped and my abdomen remains large. He is reluctant, although willing, to order the tests, I think, but time will tell.

I am very frustrated by this issue. I have questioned it for YEARS, but no one has paid attention. I am tired and fed up with the lack of answers. I hope this new testing will shed some light on the issue and either prove or disprove Cushing syndrome.

Email Susan

Labels: adrenal, bios, SusanW

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

My name is April...I am 34 years old and recently started having some issues that led my family Dr. to do some bloodwork. My cortisol levels came back very "very high" according to him, with regular female hormones "slightly out of whack."

I am so condufused at have no idea where to turn. I found this board and in reading the bio's it was like reading "my story". I have felt like I am going crazy and no one understands...including my unsupportive husband.

My history...
2 children...premature (they re 15 & 16 now)
2 miscarriages in past 5 years
hemmoraghed 3 times, hospitalized -D&C
Heavy abnormal periods w/severe back pain
Diagnosed with PCOS 2 years ago after trip to emergency room with what i thought was appendicitis
anemia
Underwieght (5'2...100 lbs) but have "spare tire" around mid section
Have very large Lipoma on shoulder blade near neck
Adult onset acne and boils
RLS
Severe shoulder neck pain
Went to family Dr. recently because I had a 9 day crying jag over something trivial, to the point i couldn't work!
Dr. prescribed Zoloft and Xanax,for depression,which stopped the crying, but i feel like i may be abusing the xanax.
I feel sad and alone. I just want to stay in my house and hide!
I also have always had anxiety.
My blood pressure has always been low, but Doc has always said that's normal for person my size.
No sex drive.
Don't like people touching me.
I smoke, like a frieght train.
I CANNOT SLEEP more than three hours! I can take 15 mg of melatonin and 2 mg xanax and still be up after 3 hours sleep.
I only urinate about 3 times a day which is dark and cloudy and funny smelling. (sorry if TMI)
I am always thirsty!
i could go on and on...

I just want to know if I am crazy or if something is really wrong with me. this is affecting my realtinship with my husband and friends.

my insurance company shanges after January 1st , so i will be making an appt with the surgeon to have the lipoma removed.

Should I see an endocronolgist?
when i talked to my Dr. about my bloodwork, I was so overwhelmed, i didn't ask any of the right questions.
all I remember him saying is that a norml cortisol range would be 200-300, high 500-600, mine 823.

Does this make sense to anyone?
Thanks for listening!

Any advice would be a god send...
April

Email April

Labels: adrenal, April, bios, not yet diagnosed, PCOS

I'm Leann, a 40-year-old single mom of three from Pittsburgh. My son was recently diagnosed with Congenital Adrenal Hyperplasia. Because of this, it caused me to suspect possible adrenal problems with my oldest daughter (age 19) and myself. I am unsure of my daughters exact lab results (she sees an endo on 12/22), but mine seem to be indicitive that further testing is needed to rule out Cushing's Syndrome. That's why I am here (well, that - plus my friend told me to join).

My initial bloodwork shows high blood pressure, high BAD cholesterol, low GOOD cholesterol, and high cortisol levels. I initially went to my PCP due to extreme fatigue! I am soooooooo tired ALL THE TIME! My muscles are always sore and my bones hurt. I am prone to miagraines. I have been clinically depressed, I believe my entire life, but was diagnosed about 20 years ago. The weirdest thing (possibly unrelated) is my diagnosis of Retinitis Pigmentosa, a degenerative retinal disease characterized by loss of peripheral vision and night blindness. My mom read somewhere that loss of peripheral vision is a symptom of Cushing's, but she can't find the website.

I also have gained a significant amount of weight in the last few years, all in my mid-section. I look like I am either 7 months pregnant or that I drink a case a beer a day.

My PCP seems to think that I do NOT have Cushing's because my ACTH levels are fine, but he didn't do any special ACTH testing, only the basic bloodwork, all drawn at the same time. I argued with the nurse about it and asked that my PCP call me back (on Thursday) but he hasn't yet.

I am just so tired of feeling like crap all the time. I am hoping to find some answers here. Thanks for reading.

Labels: adrenal, bios, CAH, Leann, not yet diagnosed

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

Today (12/2/08) I had to go get my yearly gynocological exam. Its usualy an in an out thing, step on the scale, go into the room, get examinied and then you are done.

Well this time was a little different. The MA took my blood pressure, it was 130/100, she told me that was way to high for someone my age. They continued with the exam and before I went to leave the dr said she wanted me to go have some blood test done to check my thyroid, which she said would explain my weight gain and fatigue. She also wanted to recheck my blood pressure one more time before I left, that time it was 150/92.

I went to leave and as I was standing at the desk to check out, the dr came back out and asked if she could speak to me one more time. After I paid my bill I went back with her and she told me that after I had my blood test done that she would want me to goto my primary care dr and have them do some test for Cushing's. I was shocked, where had all this come from, she said that I had some symptoms of Cushing's and she would like to rule it out. She said that could be the reason for my "moon face" and why I have very lean arms an legs but a fat upper body mostly in the shoulders and back area and around the neck.

Well of course I got concerned and as soon as I got back to work I began to do some research on ths subject. I read a lot of the symptoms some fit some didnt, the excess body and face hair fit, the moon face fit, the acne fit, the redness in the face fit, the buffalo hump fit, the fatigue fit. But the thin skin, muscle weakness, and bone weakness didnt fit. So im really unsure at this point, I dont know if you have to have all the symptoms to be diagnosid or not.

I am a little nervous after reading some of the stories on here, but then again it does explain alot. I scheduled my blood test for the thyroid for next tuesday and the dr wants me to do the other test if the thyroid test comes back negative. So we will see.

Email Karissa

Labels: adrenal, bios, Karissa, not yet diagnosed

Hi. I am an African American female, 45 years old. I don’t have Cushings syndrome, but I do have high cortisol, and I think some kind of adrenal disorder, even though many doctors have told me this is not the case. I think my problems stem from high cortisol.

I started going down hill in April of 06. My problem is that I’m stuck in this horrible limbo place. I don’t have full blown Cushings, but have high cortisol and have the severe symptoms of it. My various levels are only slightly elevated, according to doctors, but I’m having horrible symptoms, and they’re getting worse daily. I can barely function most days. Most of the doctors I’ve seen in the past 2 years totally dismiss my high cortisol levels as well as my test results.

In April 2006 I started getting strange symptoms. Very dizzy and unsteady for no apparent reason. I am hypothyroid after having RAI ten years ago for an overactive thyroid and goiter. I was having trouble regulating my medicine, Synthroid. The first endo of many that I saw at the time said my thyroid was fine, but that I had low iron and was anemic. She sent me to a hematologist, who told me to take over the counter iron, but otherwise I was fine. My iron kept getting lower, so I had an iron transfusion and was told I was cured of anemia. Meanwhile, my symptoms started getting stranger and worse. My symptoms are described below. Here I am, two years later in December 2008. No doctor has helped me and almost all of them dismissed my symptoms and pain. There was one doctor I saw around January of this year. She thought my symptoms might have been adrenal related. She gave me the saliva test and was concerned by the high cortisol levels. She pointed me in the right direction, but she couldn’t help me further and suggested I see an endo for further treatment.

I am considering seeing a Naturopath doctor, because I heard they are more helpful in treating adrenal disorders, but I’m afraid they won’t be much help, like all the other doctors I’ve seen. I can’t count the number of endos I’ve gone through, though I think I’ve seen at least 4. The last one was a top specialist in his field at John’s Hopkins. That left me very depressed and feeling worse. He totally dismissed my symptoms and lab results, saying they are not adrenal related at all. I’m really running out of options for treatment. I’ve been to the ER about 20 times over the past two years, and everything comes out ‘normal’, except for my blood pressure. My GP thinks something is amiss with my labs, but she says she can’t put her finger on it. She recommended the endo in her office, but this doctor was totally useless. My GP is the only doctor who seems concerned about my urine tests. I’m hoping to get my saliva and urine checked regularly. I also hope to get another cat scan, this time with contrast so maybe it will be more accurate. I also have an appointment with a rheumatologist, to rule out any of those problems, though I don’t think my muscle pain is coming from that. Meanwhile, I know I’ll end up in the ER again soon, which I dread because they’re going to tell me nothing’s wrong, even though I’m in agony daily.

Any advice I can get as to what I should do next would be greatly appreciated. Has anyone been actually treated for just high cortisol, but not full blown Cushings? I’ve had several blood cortisol tests, but they’ve all come back within range, which is why doctors say I don’t have Cushings.

Does anybody have horrible symptoms with just high cortisol? I’ve heard and read that the long term effects of high cortisol can be very damaging, but none of the doctors I’ve seen seem to think it’s a problem. I really need help bad, and I’m running out of options fast.

Also, where on the website do you find doctors in your area that can help? I would see another endo if they would actually take my symptoms seriously and treat me for them. Right now I’m sticking with my GP and I’m going to make an appointment with a naturopath clinic in my area. Sorry this post is so long, but I’m so frustrated and need to talk to people who are going through something similar. Like I said, I don’t think I have Cushings but have some of the symptoms of people who do.

Labels: adrenal, bios, Fatima

First off, I don't believe I have Cushings, although I have more testing to be done.

I was diagnosed this past May with an adrenal tumor/hyperaldosteronism. It has not definitively been called Conn's yet because I still have to undergo the an adrenal vein sampling.

I have been searching high and low for a support group for what I am going through. Many sites including yours! discount the full range of symptoms that can be associated with this condition (if it is listed as Conn's). Hypertension is NOT the only symptom, I can tell you all about the chronic fatigue I have experienced as well as migraines, arrythmia, severe dehydration, loss of sex appetite and frequent urination at night that often precludes getting a good sleep.

I would like to see this condition get more exposure and offer patients more support for the long series of tests that are necessary to make an exact prognosis. It has been hell! The endocrinlogists have been sometimes nubulous, but most often not as informative as you'd think. Much of my knowledge about my condition has come from the web.


Email Carol

Labels: adrenal, bios, Carole, Conn's

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

I am currently in diagnosis - Finally got fed up and met with an endo. who is wonderful - she let it slip that she thinks that my problems are not only associated with my thyroid (hypo) but that I have an adrenal problem. She set up a myriad of tests which I have subsequently completed (in a record two days) and have done what one should NEVER do - go look up symptoms on line.

I have ALL of the sympoms for a Cushie - from the over emotional bit to the hump - Just Lovely! I just wanted to drop a note as I am feeling very overwhelmed by all of this. I realize that I have not been diagnosed, am only at the testing phase and should just calm down and be rational but it is harder than it appears.

I am alone with this and it is freaking me out. My family is in another state, and, when I talk to them I feel I need to put on a brave face, I always have when major issues occur, don't know why I do, I just do. I know that if I asked a family member to come to me they would, no questions asked but then I know they would just be watching me like a hawk the whole time for G-d knows what to happen.

All of your posts have been extremely helpful to me and are helping me to bolster my spirits. It is heartening to know that I am not a crazy person and that there are support systems out there for us. I will write again when I get a diagnosis - Hoping for the best!!

Email Ryley

Labels: adrenal, bios, not yet diagnosed, Ryley

First off, I don't believe I have Cushings, although I have more testing to be done.

I was diagnosed this past May with an adrenal tumor/hyperaldosteronism. It has not definitively been called Conn's yet because I still have to undergo the an adrenal vein sampling.

I have been searching high and low for a support group for what I am going through. Many sites including yours! discount the full range of symptoms that can be associated with this condition (if it is listed as Conn's).

Hypertension is NOT the only symptom, I can tell you all about the chronic fatigue I have experienced as well as migraines, arrythmia, severe dehydration, loss of sex appetite and frequent urination at night that often precludes getting a good sleep.

I would like to see this condition get more exposure and offer patients more support for the long series of tests that are necessary to make an exact prognosis. It has been hell! The endocrinlogists have been sometimes nubulous, but most often not as informative as you'd think.

Much of my knowledge about my condition has come from the web.

Email Carole

Carol maintains a blog at http://hyperaldosteronism.blogspot.com/.

Labels: adrenal, bios, Carole, Conn's, hyperaldosteronism

I am 31 yrs old and had a adrenalectomy in April of 2008.

I started about 6 yrs ago with high blood pressure and then I developed a fast heart rate. I was put on medication to control this.

As the years went on I started to become depressed all the time had no interest in anything anymore had very bad mood swings.

The last 2 yrs I had gained 80lbs , I had hot flashes all the time,mood swings,muscle weakness, then the moon shaped face started, no sexual interest, missed menstrual cycles and so on. I kept telling my doctor that I was gaining weight for no reason and he told me I had to be eating to much. I even took my husband to the doctor with me so he could tell them that I hardly ever eat. I was also exercising regularly.

My life was so miserable that I didn't care about anything anymore. I almost lost my family because of the depression. By February of 2008 I was on 3 different blood pressure pills and my blood pressure was still high.

So in March of 2008 I was very sick I could not even get out of bed where I was so dehydrated. I went to the doctor and he admitted me to the hospital. He done a cat scan on my stomach to see if it was my intestines. When the cat scan come back it showed I had a tumor on my left adrenal galnd. I was sent to a surgeon who ran all the test to check for cushions syndrome and in April of 2008 he removed my left adrenal gland. I ask the surgeon why I had not been tested for this earlier he said because it is so rare that doctors very rarely think of it. I also ask him how long he thougth I had had cushing's and he said he couldn't be sure but probably from the time my high blood pressure started 6 yrs ago.

It has been 6 months since my surgery. I am taking the steroid dexamethasone until my right adrenal takes over. I have lost 36lbs and feel great. I am not back 100% but I believe that I will eventually get there.

I am so glad they found out what was wrong with me because now I have my life and family back.

Email Belinda

Labels: adrenal, Belinda, bios

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

I am the mother of a 31 year old who had gastric bypass surgery one year ago. Following this her blood pressure escalated constantly.

A new primary care Doctor discovered she had an adrenal gland tumor. She had it removed in October of this year, it was benign. She was diagnosed with Cushings in Oct as well.

She has had many complications, adrenal insufficiency and volume depletion since the surgery. They now claim it is from the gastric bypass. She resists steroids by mouth, has constant diarrhea etc. She is weak, barely walks and can barely get out of bed.

Labels: adrenal, bios, gastric bypass, Jewell

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

Hi! I've been to this site a lot and it's helped me tremedously! Actually, I try to stay off the internet as much as possible because it scares the crap out of me ! However, since my doctors don't seem to know a whole lot about this disease this is the only way I've been able to find out any information on it. Believe me, I don't know much at all since I'm such a baby when it comes to learning about Cushings! I really think this website saved my live though!

Because my endocrinologist never contacted the hospital about any meds aftger surgery. If it weren't for this site, I won't have even know I needed the meds.

Anyways...I was diagnosed with Cushings. The tumor was on my adrenal gland. I had surgery to remove the tumor and my right adrenal gland August 28, 2008. I felt great right after surgery!

I was tapering down on my hydrocortisone bit by bit. It wasn't even until I tappered to 20 mgs a day that the withdrawals hit. I've been feeling awful ever since, haven't even returned to work yet! The only thing left from the withdrawals are horrible headaches and my muscles hurt so bad I can't stand it! I'm just starting to get very frustrated and needed to vent!

Thanks for listening!

email Natasha

Labels: adrenal, bios, Natasha

I'm a 39 year-old mother of 2 and have been recently (FINALLY) diagnosed with Cushing's due to a left adrenal adenoma.

I will update my bio soon.

Email SusanKate

Labels: adrenal, bios, SusanKate

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

My story is the same as everyone else's but with too many years and a handful of doctors who ignored my symptoms.

Around 1997 or so, when I was in my mid-20s, I started to gain an enormous amount of weight. I had been lean and active, measuring 5'5" and about 120-125 pounds. I cycled and exercised. I was a strict vegetarian.

Within six months I had gained 100 pounds. I was depressed. I felt awful. I was trying everything to counteract this eight gain. My energy became very uncontrollable and manic. This went on for nearly a decade. My face was red and ruddy. I was covered in bruises. I had high blood pressure. My skin was papery thin and I was constantly in the emergency room - either for horrible torn flesh or broken bones. I mean, this was over and over: broken leg, broken toes. My doctor in Florida saw all of this and never put it together. She prescribed medications for the depression and told me I had better lose weight. I even brought friends in with me to my doctor and they confirmed I had a healthy diet and was not overeating. I could not have been more down in the dumps. I was so embarassed about the way I looked. I went from a size 6 to a 22. People I hadn't seen in a while would stare me in the face and not know who I was. My hair also changed texture and was now wiry and frzzy.

One time a friend and I met an old pal in New York The two of them chit chatted as I sat quietly waiting for him to acknowledge me. Finally he asked her, "IS gina coming to meet us?" I was sitting across from him. He didn't recognize me.

I was also new to the work force and trying to navigate my career as a bright young journalist at the same time I felt physically terrible and looked, frankly, unkempt.

Finally in late 2005 we found a small mass on my adrenal gland during a cat scan I was given on yet another trip to the emergency room. My doctor STILL did not diagnose Cushings. She thought I had a rare tumor (phenochromocytoma). At any rate, we brought in a surgeon to remove the tumor - unfortunately he nicked my pancreas and gave me a nasty infection that required two more surgeries. However, oncce the tumor was out, the weight melted off and I began t feel like "my old self."

I lost about 65 pounds in the first month or so and my blood pressure and all other vitals returned to normal.

The road back to health has been long but now I am in tip top shape again. I take no medications and I am not depressed.

I will say this: Cushings wreaked havoc on both my body and my mind. I have the scars all over me from torn skin and broken bones. I have depostis of extra skin hanging on my frame from ballooning up so rapidly. I wish doctors knew more. about Cushings/ I wish I did not go undiagnosed for a decade. I'm glad its over, yes,but everytime I think about it - which is every day, still - I get sad. I lost a third of my life to that disease.

Labels: adrenal, bios, Gina, pheochromocytoma, surgery, tumor

Hello, my name is Margie, I am 35 years of age and I have 3 wonderful kids.

Recently I was diagnosed with cushings disease. I had surgery in May and now they are telling me that I may have to have surgery again. This was a very painful surgery and I dont understand this disease at all.

What causes you to get this disease.

I am very depressed because I feel like my life is being torn apart. I just keep asking myself why me?

Can someone talk me throug this

Email Margie

Labels: adrenal, bios, Margie