Today is

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

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

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

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

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

Update June 3, 2009

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

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

Labels: bios, Fiona, pituitary, surgery

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

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

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

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

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

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

Email Cindy

Labels: bios, Cindy, pituitary, surgery

ARGH!!!

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

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

Does anyone have any advice? Thanks.

Labels: adrenal, bios, Brenda, pituitary, surgery

I'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

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

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

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

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

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

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

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

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

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


Email Sarah

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

My 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