Born with congenital hypothyroid (which was undiagnosed until 45). My thyroid is the size of a lima bean!
Discovered that I was exposed in utero and as a toddler to sky-high amounts of dioxins — i.e., Agent Orange, along with what has now been diagnosed as Asperger Syndrome. Through college, I was very athletic, super-strong (stronger than many men and could squat-jump HUNDREDS of pounds) and was an expert skier. I also played co-ed soccer, despite respiratory wheezing. I just dealt with it.
I have had episodes of suspected Cushings for about 25 years.. It felt like immediate-onset mono. I would have tons of energy all of a sudden, turn into a cleaning monster and get loads done (for example, cleaning out and rearranging my large storage unit) only to crash a week later and barely to get out of bed — coupled with weight gain of 40lbs + each episode.
At the lapses between episodes, I could diet and force myself to exercise, lose weight… but each time it was worse. I would gain 40, lose 35 — so I started losing ground. When given prednisone for bronchitis several times, when pregnant, and when given prednisone for systemic poison ivy, the same symptoms came back… but with much higher severity.
At the same time, I had multiple surgeries for perineal abscess — which was lanced and turned into a rectal-vaginal abscess. This would never heal.. I had 10 fistula flap, pig plug, cauterizations — none of which healed. No one could figure out why I wouldn’t heal. They tested me for HIV, but that was negative — so they had no answers. I seemed almost allergic to myself.
My surgeon talked me into a “temporary” loop ileostomy, promising that with no food going through, the fistula would heal. No dice. The ileostomy broke down, herniated, developed gangrene, and I ended up losing my appendix, some upper and lower intestine, and my caecum (which absorbs bile back into the body), and has resulted in terrible malabsorption problems and chronic diarrhea. Because I wouldn’t heal, the ileostomy was made permanent (my worst nightmare). Five years later I found a doctor to reverse the ileostomy. However, he noticed non-cancerous lesions on my intestine. Biopsies revealed nothing remarkable. I tested negative for celiac, for Crohn’s… just “cranky bowel”. While the takedown/reconnection surgery went well, my surgery site (a straight line from sternum to pelvic bone) would not heal internally and I herniated in 8 places. A piece of mesh was placed to cover the entire site. At the same time my gall bladder was removed because it had reportedly atrophied.
Since that last surgery I have gained 60 pounds, in 30 pound increments. One was immediately after the surgery, the other was over Spring Break. I got a lot done, felt like superwoman…all the while eating LESS than usual and drinking lots more water, but gained 30 pounds in a week, without swollen ankles. I had developed stretch marks in my armpits.
Since this started, my body has changed shape, places it stores, my feet have gone up 3 sizes, and my skin has turned kind of orange. I look like I go to a cheap tanning salon. The small buffalo hump I had 10 years ago has turned into a full-blown travel pillow which goes around the base of my neck. It looks a bit like my head is coming out of a vagina.
Don’t know what else to say. I can tell you what endo’s NOT to go to… But I have yet to find one who even believes cyclic Cushings’ even exists. I am trying not to dwell on the underlying question: Am I going to die of this before I get some real help?
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May 15, 2015 @ 01:39:18
Hi Elizabeth, I have recently been diagnosed with Cushing’ Disease. After many years feeling unwell and knowing that there was something wrong I kept googling until I diagnosed myself with Cushing’s syndrome. I saw many specilists and all of them kept sending me back home saying it was psychological and that there was nothing wrong with me. Ask your doctor for a cortisol level test done. (saliva, urine and blood test) . I had them done after finding out about this syndrome. I had 8 out of 10 of the Cushing’s syndrome symptoms. My Haematologist was so embarrassed when he found out that I was the one to find out my problem regarding my easy bruising, petichae and purpura on my skin. Because the disease is rare Dr’s don’t want to believe you. My skin is so thin that it rips easily. I have a hunchback, menopause, infections all the time, don’t heal easily, am moody and have problems with memory.I have weeks fatigued and other weeks I am full of energy. I have put on weight around my stomach and chest even though I exercise and eat “rabbit food” (lettuce and salads). Really weird. I don’t sleep well and have problems with concentration. So… after going through all those tests, they found out that my cortisol levels were high and I was referred to an endocrinologist. She asked for an MRI of the pituitary gland and a 3mm tumor was found. She said that once the tumor is removed and if everything goes well during surgery, my health should go back to normal. Have you done any MRI’s of the pituitary gland, adrenal gland or lungs? I would recommend you talked to your Dr about this and tell him you want these tests done. Hope you can get help soon. Take heart , don’t give up and make sure you take photos of everything so that you can compare your before and after results. I hope all the best for you.
May 25, 2015 @ 12:57:11
I have had tests by different endocrinologists, and I always have high acth, but only “elevated” cortisol. I had an open MRI because I wouldn’t fit in the regular MRI tube. The doctor thought I was having mini-strokes (nope) because I’d had episodes of near unconsciousness, slurred speech & twitching. My doctor just patted me on the head and sent me on my way when he found no evidence of stroke.
May 25, 2015 @ 22:31:20
Sometimes the tumours are so tiny that the radiologists have to specifically look for something small. They normally look for something big and end up missing the real small ones. In my case my endocrinologist had to ask them to look for a pituitary microadenoma and they found it. I was diagnosed like you with high ACTH and “elevated cortisol”. I also have twitching sometimes and have noticed slow but increasing slurred speech. What was the result of your MRI? Have you done any other MRI’s? MRI of the adrenal gland and the lungs? Sad to read that your doctor sent you home with a pat on the back. So common though when they don’t know what to do with us. So sad. But don’t give up. Doctors don’t want to believe that it is cushing’s until they see for themselves all of the results confirming it. You definitely have all the symptoms of Cushing’s disease. Don’t give up.