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Turtledove (turtledove), Undiagnosed Bio

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golden-oldie
Monday, December 29, 2008

just found this sight looking for answers to a long list of problems and diagnosis.

I have battled years long of severe stress and well am trying to find out what happenned and how to get well again. I have menapausal estrogen issues not answered shoulder impingement problems and one dr suggested I had phase 3 exhaustion which led me to study on adrenials.

blood work has been done whichis showing elivated red blood cell counts my thyroid levels appear within the normal range but 30 yearrs ago i was treated for hyperthyroidism which even then i suspected was not the right gland. Im wondering if this elivated red blood count is yet another indicaation of this adrenial issue as dr after dr finds this that and the other and treats each as such.

im just learning about this condition an dwhere it appears i am fitting into it but what test will show if it is or isnt? its all very confusing.

i am 51 now and as i have said the last 5 years of my life have had supreme stress and conditions that have just led to exhaustion mental and memory failures pysical problems that obviously didnt happen overnight and now the red blood count in the picture……does that fit in here somewhere?

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Andrea (AndreaM), Pituitary Bio

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I suffered from Cushings when I was 9 years old. I had pituitary surgery, bilateral adrenalectomy (back in 1988 when it was not laparoscopic), then 2 more pituitary surgeries as my tumor grew and regrew too close to the optic nerve. My last pituitary surgery was followed by Gamma Knife Radiation. That was when I was 19. Thankfully, since then, my ACTH levels have been normal, so there is no evidence of regrowth of pituitary tumor. I just turned 36.

The good news is that despite needing repeated pituitary surgery, I recovered well from the Cushings once my adrenals were removed and I was on daily replacement steroids. I have gone on to have a fairly normal life, including 4 children with no help needed in conceiving. I guess the doctors consider this basically a miracle considering my irregular cycles and all the pituitary surgery. I did end up with diabetes insipidus from the last pituitary surgery, which is probably the most uncomfortable (and expensive) lingering problem. It can be very uncomfortable at times, particularly when pregnant is is difficult to get the right dose of DDAVP.

Not sure what prompted me to look online for others with Cushings Disease/post adrenalectomy, but I have never in my life met anyone else with my condition and my endocrinologist says she has only one other patient with adrenal problems, but that person still at least has 1. Of course doctors can’t tell you who their other patients are anyway. Obviously when I was actually suffering from Cushings there was no Internet. I guess it would just be interesting to compare notes about living without adrenal glands. Since I was so young when it happened it is all I’ve known and I’m thankful for how basically normal my life is. I see too that I can encourage people that although I do take 3 medications multiple times daily, I basically have a normal life, including 4 normal, healthy children ages 9, 7, 5, and 2.

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Michelle (Michelle), Undiagnosed Bio

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Hi, I am a Mother of 3 boys, 20, 18 and 13.  My youngest has been steadily gaining weight, has a large round face with red cheecks and large torso.

I’ve been to 3 endocrinologists so far and have not been given a diagnosis of Cushing’s.  All of his cortisol levels were considered normal.  He also had an MRI of his pituitary and adrenals which were also negative.

The last endo diagnosed him with insulin resistance and he was put on Metformin. He has suffered from depression, anxiety, insomnia, nausea, buffalo hump, add gastrointestinal issues etc.  He has all of the symptoms except for the obvious stretch marks.

I believe he has cyclical cushing’s, which my sister found out she has after many years of testing.  A lot of the drs. I spoke to about this said they don’t believe in cyclical cushing’s.

It has been so difficult watching my son suffer and be ridiculed by other children. The doctors tell me to make him exercise and eat healthy (really? No kidding!)

Has anyone else had cushing’s WITHOUT the deep red stretch marks.  He does have stretch marks, but not the typical type you see in cushing’s.

Thanks so much

Michelle

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Susan W, Pituitary Bio

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A Golden Oldie

After 2.5 yrs of testing, I was diagnosed with Cushing’s (which was un-diagnosed for over 20 yrs).  My Pituitary Tumor was removed on 10/20/11.

My surgeon has recommended Radiation/Gamma Knife treatment which will be discussed at my post srgery checkup 1/10/12.  I also have noduals on both my adrenals.

Other symptoms:  obesity, diabetes, high blood pressure, high cholesterol, muscle weakness, sleep apnea, fatigue and depression.


Susan submitted a second version of her bio.

My testing -> diagnosis -> surgery journey took 2.5 years.  I have always had a weight problem.  All my Doctors ever asked if I was interested in a liquid diet, liposuction, gastro bypass or go to Weight Watchers, and eat less.  But when I reached 375 lbs I knew something had to be done.  Things were way out of control.  I could no longer handle this by myself, I needed HELP.

I had seen comercials on TV which talked about excess Cortisol leading to excess belly fat .   So, I asked my Primary Care Doctor if she could test my Cortisol level.  She just laughed and said I would have to go to an Endocrinologist (Endo).  She did not even provide a referral.  Through my insurance company I found an Endo.  On 7/3/09,  my first appointment with the Endo, she agreed to test me but felt I just had a fatty liver.

When the test results came back, they showing excess Cortisol.  This started a series of saliva, blood test, 24 hr urine, MRI, and CAT Scan tests.  Then I was referred to another Endo Dr Findling in WI (I live in IL) for another opinion and the IPSS test..  (Dr Findling said I looked like I had Cushings for over 10 yrs.)  This was followed by Ostrascam and PET Scan.  Armed with the diagnosis of Cushing’s Disease we were off to get a surgeon.  The first doctor I seen in IL was a bust.  Then I was referred to Dr Oldfield in VA, who performed my surgery on 10/20/11.

Now in recovery, I still get weak, tired and sleep a lot.  I have been using a walker and cane to get around.  Interesting to see that other Cushings also have problems with mobility, aches and pains.  I hope this gets better.  I have follow-up appointment 12/21/11 and 1/11/12 with the Endo and surgeon.  I am off my High Blood Pressure and 2 of the 3 Diabetes meds.  I have lost 30 lbs in the 7 wks since surgery.   I can;t wait, 1 more wk before I can start swimming again.

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Gina M, Ectopic Bio

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I was diagnosed with Cushing Syndrome in June 1999.  At that time my urine cotisol level was 342.

Prior to being diagnosed I suffered for over 7 years with severe migraine headaches. I also had gained 80 lbs, had a moon face, buffalo hump, mood swings, severe fatigue (could sleep 20 out of 24 hours a day), aweful sweats day and night, weak muscles, thyroid disease.

I had pituitary surgery at Mass General because my state didn’t do that type of surgery.  After surgery, my levels were still elevated and I was diagnosed with diabetes insipidus.

When I returned home I underwent more tests ie. blood work, 24 hour urines. This continued for another year and during that time my endo put me on Ketakonazal in an attempt to lower my cotisol level to no avail. The medication just messed up my stomache.

In 2000 I had surgery again this time I had both adrenal glands removed. still no tumor had been found. That’s when the worst news of all came. I was told I had Ectopic Cushings Syndrome and had 5 years to live. The reason for this if you my not know is 50% of ectopic tumors end up being small cell lung cancer.

I was also diagnosed with Addison’s disease because of no more adrenals. Today it has been 13 years since my adrenal surgery and I am still alive and no cancer!

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