Confused and Worried - Cushing’s testing

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Hi, I’m about to start the process of testing my cortisol levels for, I guess, Cushing’s. I’ll be seeing an endo at the memorial Sloan Kettering center in NYC on July 3rd, but before then I have to complete my third 24 hour free cortisol test, a saliva test, a full pituitary blood workup, and the dexamethasone suppression test. I’m very concerned about what has been going on with my health over the last few years and am anxious but hoping I will finally get some answers. My story is long and complicated, as I’m sure everyones is here, so apologies! I’m hoping I can get some opinions as my case seems to have stumped my previous drs and other drs just wrote me off as crazy. 

I can’t remember the exact year I started changing, but I would say I noticed mild changes in 2014. I’m 5’0 and was always a thin-average petite girl. I started noticing body composition changes, I was always a pear shape but suddenly seemed to start getting a belly. I always had a very flat nice stomach. I blamed my desk job, long commute, and bad eating habits. Living in NYC, I basically subsisted on takeout. I had other weird symptoms though like muscle weakness starting in my thighs and arms, back pain too. Sometimes I was in pain for weeks then it would just go away. I thought maybe it was the way I was sleeping weird or something. I started developing aura migraines and everyday general headaches as well. Pain and pressure behind the eyes, like eye strain. I started thinking my apartment had toxic mold or something. I just felt wrong. 

In 2015 I started gaining weight and lost a lot of energy. I was always around 110-115 lbs but now was around 125 lbs, so not a crazy amount but my body just looked different. It was all flab, no muscle, jiggly weird cellulite covered belly. I tried losing it but couldn’t. I blamed myself again and not working out enough. I started getting hot flashes and my face would flush. I always had rosy cheeks and was told I had rosacea so that isn’t anything new but the flushing was. I also started getting night sweats and sleep disturbances once in a while. I would have no issue falling asleep, but would instantly enter REM stage and dream but wake up every hour or two all night long. Then it would just go away and I’d sleep like normal. 

I started losing my sex drive and blamed my appearance on it and depression. My moods started going crazy. I started having rage episodes, mood swings, severe crippling anxiety (like becoming agoraphobic anxiety), paranoia, depression. My body felt so weak and heavy in my limbs, I just kept blaming depression. 

In 2016 same symptoms but all intensified. I noticed I think around this time that my hair was thinning, however a coworker passed away and I assumed it was telogen effluvium from stress. As my moods continued to go haywire, I started noticing my skin and face just seemed different. I was bruising very easily, my face looked puffier but not like full on moon face. My skin all over seemed like it was losing collagen, just thin and crepey. Still had zero motivation and weak muscles. Felt horrible all year and became convinced I was entering some type of early perimenopause. 

In 2017 things continued to worsen. Sleep disturbances happened on a regular basis, headaches, zero sex drive, mood issues, horrific anger outbursts, digestive issues, hair loss, severe depression, muscle weakness, no energy. I knew something was wrong with my hormones because things were going well in my life aside from all these weird health issues and I went to see my gyno to have hormones tested. This is after two years telling my gp that I wasn’t well to only be written off as crazy or having fibromyalgia. 

My hormones were checked for run of the mill female hormones, fsh, LH, prolactin, etc. my total testosterone was mildly high and my prolactin was high. Free testosterone was normal. Prolactin was retested and came back in range. I was told I was fine. I continued on and just got worse. 

At this point I was around 135 lbs. I started a restrictive diet bordering on an eating disorder and could only lose a pound or two only to just gain it back the next few days. My hair seemed to be getting noticeably thinner in November and I couldn’t ignore it anymore. I started collecting it in a baggy and saw my nurse practitioner in December. I explained all my issues and was told I needed psychiatric help, antidepressants, to stop stressing, and my hair was not balding. I left p****d off. Also was told I was fixated too much on my weight. At this point it was found my cholesterol went up, which was unusual for me. 

In Jan. 2018 I went on a vacation and caught the flu. I was so sick with a very high fever. I thought I was going to die. My boyfriend barely got sick even though we were in very close quarters. After the flu I’ve never been the same. All my symptoms exploded. I’ve had sleep disturbances since, I do not sleep anymore and if I do I’m tense and dreaming. I wake up after what seems like hours and it’s been 20 minutes. I started becoming suicidal end of feb. And spent so much money on cabs because if I went down to the subway I was scared I would jump. In March I couldn’t even have strength to carry groceries. I developed a week long massive headache and afterwards my hair started falling out in clumps. It is official now, I am balding. It started with just my sides then the temples. Now it’s diffuse and I lost well over half my hair, weeellllll over. I put extensions in and it is not helping anymore. Just the last week, I lost so much hair. Like 400 strands a day. My hair is gone. 

At this point I was already seeing an endo for the prolactin. She did an MRI of my pituitary and it was unremarkable. My total testosterone came back high but my free T always normal and my sex hormone binding globulin was high, at one point off the range high. She thought I was on birth control but I wasn’t. TSH normal, thyroid antibodies normal, Free T3 normal. I asked her to test cortisol and she said I didn’t look cushingnoid but it does take years to take on the appearance so she did an am blood test. My result was 21.6 with top range being 22. She had me do a 24 hour urine and the result was 48.something with top being 50. 

I started developing in April long vellus hair all over my body and face. Like, all over. My forehead, cheeks, back, breasts, thighs, stomach. I was always pretty hairless my whole life. This is freaking me out. I was diagnosed with insulin resistance and pre-diabetes. My blood pressure was up a bit when I usually have low. The other odd thing is that now I am dropping weight like crazy. I’m only 103 lbs now and I have nooo muscle left on me but still have a flabby fat belly. My bones hurt even sitting on a cushion. There’s no muscle. 

I’ve seen REs who told me I had pcos. Had cystic ovaries and then didn’t on a second scan. Had one endo take back their pcos diagnosis, tell me I’m just crazy and that I have an eating disorder. I don’t. 

I had my gp test my am cortisol again and it was almost 50 with top range being 22. Was told it was stress. My CBC had high red blood cells, high hemoglobin, and hematocrit. Low lymphocytes and high neutrophils. Saw a hematologist who said high neutrophils could be from high cortisol. He didn’t believe I had pcos. Thought stress.  

Most of my endos and drs washed their hands of me but I am not well! I did have a ct scan too of my adrenals Bc my DHEA-S shot up so I demanded one. Adrenals were fine but they found a benign tumor on my kidney and a cyst on my liver. 

I’m balding, growing weird long vellus hair all over, weak, not sleeping, mood issues, anxious, falling apart. I haven’t been to work since April. I can no longer function. My boss recommended this pituitary and adrenal specialist and I faxed all my labs to herald was told she’d review and let me know if she wants to see me. I found out the other day that she wants to see me and is having me take all the cushing’s tests. 

I’m so scared this is like an ectopic tumor and is cancer. Why am I losing weight when I couldn’t budge it before? My hair is gone. I’m so depressed. I had very thick hair even when it was thinning, it was thick. There’s nothing left. I feel so sick all the time. I used to be an active person who had dreams and desires in life. I’m just a husk of what I used to be. My life is in shambles and I don’t understand why no one helped me years ago. No one listened. My family all see it now and are doing everything they can to help. 

I know this is not pcos. I have normal menstrual cycles and did for 20 years. Never had any signs of pcos. I have so many signs of high cortisol and cushings. The only difference is now I’m thin, flabby but thin. I was working with a trainer too who thought this seemed weird. I was dropping weight but body fat was going up so I was losing muscle even though I was weight lifting. I had to stop because in May I became too weak. 

I want this nightmare to end. I also developed dry flaky skin and my cuts are not healing well. I actually got my ear pierced and have had 8 piercings with never an infection. Tattoos with zero infection. After my unremarkable ct scan I thought I’d go get my ear pierced because maybe I am nuts. Maybe the drs are right and I am losing my mind and it’s pcos. I was worried it wouldn’t heal but did it. Was fine for a couple weeks then I developed perichondritis I think it’s called or cellulitis. Had to go to the ER twice in the same night. Was told to take two different antibiotics and if it didn’t get better I needed to be admitted. My body is not the same. I’m scared. I want my life back and my hair. I’m so scared and depressed. I do t wang to die from cancer either. I just want help and answers. This can’t be normal. I know I used to feel healthy and energetic and was not balding and did not have weird mood issues and sleep issues. 

Thank you for reading if you did. Anyone have any advice? Am I crazy? Is this pcos? Every pcos forum I joined, I feel rejected from. No one connects with my symptoms. 

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2 Replies

  • Posted

    I agree, it certainly doesn’t fit the symptoms for pcos.  I’m quite a bit older than you and was diagnosed with Cushings disease last fall after going through all the standard testing (low dose suppression, 24 hour urine , saliva, & high dose suppression plus a repeat round).  My MRI showed a micro pituitary adenoma,  The results of my tests were mixed.  Some high and some just barely over the range.  I had many of your symptoms to include the weight gain, weight redistribution, fat tummy, fat pads on clavicles, Buffalo hump, thinning hair, muscle weakness especially in my legs/ hips.  My face shape changed but not the typical moon face.  I also didn’t have the stria on my fat tummy.  Looking back a few years, the changes that I went through were deemed part of the aging process as opposed to being influenced by an elevated cortisol to include hypertension.  I had surgery in February for the adenoma resection and have had a somewhat rocky recovery.  Am now in adrenal insufficiency so am back on a physiologic dose of hydrocortisone. You haven’t mentioned your ATCH levels,  that will be part of the info along with cortisol that your endocrinologist will be looking at.  Good luck and let us know the outcome.  And you’re right, no one really understands what you’re feeling unless they’ve gone though it.

    • Posted

      Hi Pam! I’m sorry to hear it’s been a rocky recovery for you but am so happy to know that you are recovering! I wish you all the best. I actually had the same thoughts when my body composition was changing and I lost my energy levels, I blamed the aging process but that’s so silly looking back because I was only in my 20s! These symptoms I’ve been dealing with are so hard to explain to others. For sure no one can understand unless they lived it. 

      I have never had my ACTH levels checked but will be next week. My previous endos didn’t do a full workup. Really just focused on prolactin before tossing around a pcos diagnosis/taking it back/washing their hands of me. My mistake was not going to this endo in nyc who was recommended to me initially. I felt my case was too simple, just a prolactinoma or something I can shrink with medication. I still am confused about cushings because I did lose weight however my body just looks wrong still. There’s zero muscle and I still have every symptom I had when I was mildly overweight, which I was only mildly overweight because I starved myself. My old drs wrote off my high and borderline high cortisol tests as being stress. I just want to know what’s wrong with me. It doesn’t seem like pcos to me but I guess it very well could be. The new endocrinologist wants to see my scans for adrenals and MRI. If they were deemed unremarkable I don’t know what that means for me and I keep worrying about the worst, like cancer. But I also know and read a story of a young man on Cushings-bio who actually went to the endo I’ll be seeing, he brought his normal pituitary images and they found he had tiny tumors. So who knows. I think a lot of rare diseases are so unknown and understudied, I’m sure it’s all very complex and you don’t have to check all boxes to have something. All I can do is take the tests and wait. And hope she listens to me because I don’t know how to keep functioning this way. I want to get my life back on track. 

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