Can Anyone Offer Advice Or Help For A Woman With High Androgens?

[Sliceofbread]

Yep, the report was normal. And if it were adrenal cancer my testosterone and DHEA-s would be higher and my ACTH would be <5. It was 16.5 last time it was checked. I worry about an ACTH secreting ectopic tumor. I’m waiting for more test results. I think my dr thinks if it is cushings it’s pituitary. But I don’t understand why I lost weight. However I still am like all flab, I used to have a flat stomach but even at this low weight it’s flabby and bloated like. This is all so confusing. I have no idea what’s happening to me.

I really shouldn’t give medical advice over the internet but I would continue looking for a malignancy for sure. I would talk to a general medicine doctor as well to screen for chronic infections and rheumatologic disorders

 

[Bluelilac]

I really shouldn’t give medical advice over the internet but I would continue looking for a malignancy for sure. I would talk to a general medicine doctor as well to screen for chronic infections and rheumatologic disorders

I am working with a doctor still, at Memorial Sloan Kettering cancer center but I’m in the endocrinology dept. I’ve been tested for sooo many things by so many drs and specialists, leukemia, lymphoma, pheo tumors, inflammatory markers, CBC with differential numerous times, metabolic profiles, Lyme, bartinella, rheumatic diseases, lupus, ct scans, mri’s, x-ray, CRP and ESR, pituitary and adrenal hormone panels. All that comes up so far is high cortisol which can cause my symptoms. My doctor, who is a cushings specialist, said not everyone presents the same with cushings. It depends on how cortisol affects the tissues on each individual and also it takes years to take on the classic cushingnoid appearance. The reason you need to do the inferior petrosal sinus sampling procedure is to rule out an ectopic source of a tumor which would be often malignant. Otherwise the ipss will then indicate which side of the pituitary the excess hormone (ACTH) is coming from and then you would move to surgery. I’ve exhausted all other testing and have seen so many specialists. My symptoms match cushings minus the obesity but again there are atypical presentations as my endo said. I’m in a cushings FB group and many noted they dropped weight suddenky before the “transformation” aka weight gain. Also there is cyclical cushing’s as well and that seems to be me, the tumor shuts on and off so when it’s off, your cortisol drops and you get periods of low cortisol symptoms as seen in Addison’s disease. Some cyclical patients go up and down in weight because of this. All I can do is wait for an ipss to confirm the source.

Thanks for the concern and dont worry, there’s no way in hell im not going to keep pushing to find my issue. When it first started I saw so many drs and all my tests come back normal. I was accused of anorexia, hypochondria, anxiety, bulimia, mania, etc. no one would help me after testing me because all my results are normal. Even though with old endos and drs I had borderline and high cortisol, I was told it’s caused by anorexia and anxiety which was bs because I’m not anorexic. I’m anxious Bc my body’s falling apart. Once I got into see the specialist at MSKCC I was finally taken seriously. My life’s been insane lately and I hope it makes a turn for the better soon.