lissy Posted May 31, 2014 Report Share Posted May 31, 2014 Hello all,Haven't been here in awhile..just been trying my best to accept my limitations and move forward. I recently seen a new endocrinologist and she's looking into my elevated cortisol more deeply. Ever since my illness began elevated cortisol has always been there and all the past doctors dismissed it. Well I currently have high cortisol and elevated prolactin. .and if any remember my posts from the past I was underweight never able to get over 100lbs, well I'm up to 110 and its all abdominal. So besides a few posts I found through searching I'd like to know from my old friends is there any connection with cushings and pots? Taking my midnight saliva in a few hours;) hoping to be able to stop my search for a cause!Take care. Quote Link to comment Share on other sites More sharing options...
Katybug Posted May 31, 2014 Report Share Posted May 31, 2014 If memory serves me correctly, Cushings Disease is a differential diagnosis for POTS. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted May 31, 2014 Report Share Posted May 31, 2014 I have been having rising cortisol levels over the years since POTS began for me. My cortisol and ACTH keep sitting at the very top of normal. Can I ask what your numbers were for your cortisol? Serum or 24-urine?Keep in mind that meds like Reglan to help the stomach move can raise prolactin levels(also being hypothyroid, I think). So, don't know if you are taking anything to help your stomach. Quote Link to comment Share on other sites More sharing options...
lissy Posted May 31, 2014 Author Report Share Posted May 31, 2014 My a.m cortisol serum was 26 ug( reference range is 6.2-19.4ug) prolactin has been 31 and 27.8 (reference range 3.34-26.72ng ) I take no meds and thyroid tests have been normal. I went to take my midnight saliva test lastnight and found out the local lab doesn't even carry the test!!!! So now I have to drive a hour away to a hospital that has the kits and they send it to Mayo. So I'm going to do the test tonight and take it back tommorrow results back Wednesday. Ehhhh alot of work for this little test! Quote Link to comment Share on other sites More sharing options...
sue1234 Posted May 31, 2014 Report Share Posted May 31, 2014 Regarding the midnight test, that's what I've heard! It is hard to just have it done anywhere!My a.m. serum cortisol had been sitting around 23.5(? - 25) and my a.m. ACTH has been around 50.5 (? - 60). I have had a morning cortisol a few years ago come back at 27(? - 25). For some reason, these numbers don't get any of the doctors excited. To me, it shows my body is working overtime to keep it going. I don't like my hormones being on constant alert mode!Keep us updated. Quote Link to comment Share on other sites More sharing options...
goawaypots! Posted June 1, 2014 Report Share Posted June 1, 2014 I have elevated cortisol levels as well. I was told by my specialist that it was not an unusual finding in pots patients and was probably caused by pots. It concerned me but the specialist did not seem concerned at all. Good luck, hopefully the additional midnight cortisol level might help provide more answers. Quote Link to comment Share on other sites More sharing options...
lissy Posted June 1, 2014 Author Report Share Posted June 1, 2014 I actually asked some random doctors( not my physicians) about Pots causing elevated cortisol and they said "no, two separate issues".So I don't know if there is a article from a POTS specialist that can correlate this ? I know alot of doctors that would rather just treat POTS and not seek a cause, they may even look over clues as in; abnormal blood work. But just my observation.... I took my test lastnight along with some more bloodwork this morning so I should be getting results later in the week. It was really bizarre my gyno that did my surgery(hysterectomy) 2 years ago had me come in for my 2 year follow-up, I brought my labs because I really trust her opinion, and she looked at me and said I had something adrenal going on.... I honestly think I was not diagnosed properly along time ago, and my POTS is caused from another condition.But It really concerns me if I do find out it was cushings or another condition would POTS go away with treatment? My head is just spinning in possibilities. I will definitely kept everyone posted!!! I believe it's truly important to spread the word if we aren't getting properly tested like with the elevated cortisol, it should be looked into. Quote Link to comment Share on other sites More sharing options...
Teena Posted February 23, 2022 Report Share Posted February 23, 2022 Can i please get an update from you? Facing same situation.. getting anxious waiting for an appointment Quote Link to comment Share on other sites More sharing options...
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