And It's About Time There Was Some Support For Cushing's!
I am JenS on the boards. I have been here since January 2001.
I am now post op, confirmed cyclical pituitary Cushing’s Disease. I had pituitary surgery in April 2004, then a BLA in March 2006. I credit this board with saving my life!
I thought I used to be a normal person. Thyroid problems (cancer, Hashimoto's and goiters) always ran in the family and while we always told the doctors about that, no one ever ran tests on me and looking back, I realize looking back that I probably started having thyroid problems in high school since I was always so cold. In college, I developed a benign follicular nodule that was removed when I was 20. At that time, they ran the first thyroid tests and found that I had Hashimoto's like my Grandmother but no one told me about it (!) or told me to get any treatment - just stay out of the sun as I scarred quite badly from that surgery. I was late getting my period compared to my friends as I was 14.
A few years after that, I moved to Japan in 1986 and suddenly gained tons of weight - about 50 pounds in a month or 2. It was bizarre considering portions over there are very small, I was very busy teaching and I had not changed my eating habits (I'm not a snacker or soda drinker). I also tended to get very sick while I was there - many respiratory infections and yeast infections - which I never had before. I was there for 2 years, then moved to California and had no luck taking the weight off. A doctor there suggested seeing an endocrinologist but I did not as I was in more pain from endometriosis and migraines. One headache was so strange that it made my head hot in one spot and I had a cat scan (negative) to check for a possible aneurism.
I moved to New Jersey after a year and suddenly lost the 50 pounds. I was not trying - in fact, I was living with relatives and eating more than usual as someone else was cooking. No reason was found for losing the weight but it was great to have it gone. I was back to my college weight of around 130-140. A size 10. I actually went to doctors to find out why I lost weight. No reason was found.
Then my body started to do strange things. I started lactating (which never having had kids, I could not figure out what was happening - only that it was too painful for anything including shaving), vertigo spells, headaches and fatigue. They did a prolactin test and found it was only slightly high - but both breasts were producing milk. Now when doctors see the tests, they tell me it is not possible that I was lactating - but to me it just shows how sensitive (overly so) I am to hormones. They found a 5-6mm pituitary tumor at that time, gave me parlodel for a short period of time and told me that it was not a prolactinoma. Subsequent MRIs show the tumor is 4-5mm now so maybe the parlodel had some effect. This was around 1993. Since then, my health has simple gone downhill. Subsequent diagnosis/illnesses include PCOS, endometriosis, mono, lymphadenopathy, thrombocytopathy, menieres syndrome, and fibromyalgia. My weight went up to about 264. I am 5'8". I have the red face, purple straie, fatigue, hump, poor healing, acne, mystery rashes, malfunctioning platelets, migraines, but blood pressure is fine except for a few spikes (used to be low). I saw an endo in 2001 who looked at me and said, oh - you have Cushings. But my cortisol tests (UFCs) have been as follows:
2/02/01 - 30.6 (5.0-50.0)
3/12/01 - 45.8 (5.0-50.0)
So that endo said, nope, not Cushing's, and refused to test further. (Thanks for ignoring my symptoms!) He did at least start me on T3 with my thyroid and that, ironically, helped out my skin - even though he said that is not possible. As he refused to do more tests and by this time I had found the Cushings-Help board (thank you thank you!), and knew that this did not mean that I was not sick, so I found another endo. 9/28/01- 85.3 (5.0-50.0) abnormal! so new endo said to do a dex suppression test - results are: 11/08/01 - <5.0 (5.0-50.0) undetectable.
New endo sends me to a pit expert at Columbia - that test result (specimen was not kept cold) 02/13/02 - 41 (5.0-50.0) but my blood ACTH was 3 - so low she says she can't say that I have Cushing's now but to keep testing, I am 50% likely to have it. But the letter she wrote to the regular endo contradicted what she said to my husband and I in person so endo was reluctant to test more. I had to beg.
10/19/02 - 58.5 (2.9-34.0) so still testing high. Next dex, suppress right down again. In May 2003, I had the rest of my thyroid out (two more benign nodules) and a bunch of enlarged lymph nodes (so they could figure out why it was happening - but then they did not figure out why really). I still feel lousy after the surgery. So, asked endo to try 11pm salivary cortisol tests:
7/28/03 2.3 (0.3-4.3)
7/29/03 4.1 (0.3-4.3)
At this point, I decided to listed to the advice on the board that I should see a specialist (should have been the Columbia people but forget that)… So I traveled to Los Angeles and saw Dr. Friedman. He explained that the ACTH test was lab error (it was not spun immediately) and that I was on birth control pills for all my testing he said it interferes.
I had 3 UFCs when I was out with Dr. F but I was in a low cycle 20, 28 and 29 (10-34) and 17OCS were 3.6, 4.2 5.5 (2-6) so I was definitely heading upwards but travel schedule made it that I had to test then. Dr F diagnosed me, however, based on my previous testing and appearance, and then I had to get more tests in order to have surgery. I had surgery in April 2004 at Cedars Sinai and it was a breeze – and I had two tumors instead of one. A prolactinoma on the right side and an ACTH secreting hyperplasia on the left. However, I was not cured. I had a short period of feeling ok, but never lost weight. In fact, I gained more, getting up to 274 by the time I had the bilateral Adrenalectomy in March 2006. My testing between surgeries was also cyclical but getting to be higher. I failed the dex-CRH test. So much for that being a gold standard! The adrenal pathology – cortical hyperplasia – confirms that I have pituitary Cushing’s. I am now adjusting to my new life as in Addision’s territory. I am also growth hormone deficient. In the year following surgery, I have been able to lose just over 60 pounds. My ACTH is high, but no one can see any tumor (yeah, like they could before!) so I am suspected Nelson’s but not confirmed.
My message to those reading this is that you do not have to have all the symptoms (I had low BP, no blood sugar issues and more normal cortisol tests than abnormal) but if you know that you do not eat enough to warrant the gains you are having and have the straie, hump, acne and red face and other hallmarks, fight to get tested and don’t give up.