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Addison's Disease Message Board


Addison's Disease Board Index


:wave:

Where do I start? LMAO

Well, about...ohhhhh...14 months ago I was in seeing my dermatologist b/c I was 25 years old and had worse acne than I did in high school and got fed up with it. He noticed that I have hyperpigmentation, and asked if anyone had ever mentioned Addison's disease to me. He ran some preliminary bloodwork, and my ACTH was high (214, reference of 6-58), so he had my PCP refer me to an endo. Well, the Endo ran a basic fasting blood draw once again to measure my ACTH levels. It was high again (180), so he had me do an ACTH stim test. My first stim test was as follows: baseline = 11.6/1hr = 18.3 done at 9:50am. He decided to do another stim test, and the results were: baseline = 10.5/1hr = 19 done at 3:50pm. He also checked my aldosterone the second time, and it was only 5. I should also mention that my dermatologist checked my DHEA-S and it was only 15.

Then, about 6 months ago I started (well, I shouldn't say started since I've had them since I can remember, but they just became a nuisance) having strong palpitations, chest pain, dizziness, and shortness of breath. I went to a cardiologist, and he discovered I have Mitral Valve Prolapse. He did not want to treat my symptoms b/c I have normally low blood pressure and pulse. My blood pressure is normally in the 80-90's over 50-60's (high blood pressure for me is 105/70), and my pulse is normally in the low 50's. I had never mentioned my possible Addison's b/c I didn't think it was relative, but suddenly he was asking me if I had ever been seen for a steroid defficiancy (sp?) and I said that they once thought I had Addison's. He immediately perked up and said that that was exactly where he was headed. HE now thinks that I have Addison's and wants me treated for it! I recently switched PCP and now she thinks I need to be treated for Addison's, at least experimentally, to see if it helps matters, especially when it comes to my heart.

I went to see my endo once again after seeing my Cardiologist, and he said that he didn't think that treating me with Florinef, even experimentally, would do me any good, he thought it would actually do more harm, so he said he refused to do it. He said my Cardiologist could go right ahead and do it for all he cared, but he would have no part of it (those were his exact words). He pretty much said there was NO way that I could possibly have Addison's Disease, and said there had to be a reason for my increased ACTH production and he sent me to have an MRI done of my pituitary gland.

I had it done on March 19th. The results from that came back, and it read "The only questionable finding is in the posterior pituitary gland where there is a very questionable area of nonenhancement posteriorly and centrally, 2 to 3 millimeters in size." From what they told me over the phone, it's most likely a tumor of some sort. I looked up pituitary tumors and high ACTH production, and everything pointed to Cushing's Disease, rather than Addison's. So, he called me in to his office to talk about the thing in my head, and he pretty much told me...yeah, it's probably a tumor, but a lot of people have these and they are nothing to worry about, yadda yadda, I don't think this has anything to do with what we are dealing with... So I ask him why I'm producing so much ACTH with no other obvious cause, and could this tumor be causing it, asked about Cushing's Disease, etc...and he blew me off. Told me I was being stupid, and there was nothing wrong with me, that he just wanted to run a couple more serum blood tests, wanted to test my thyroid ONCE AGAIN (even though EVERY other time he has it has been normal) and more than likely he would send me on my merry old way.

As you can imagine, I was BEYOND pissed when I left his office that day. I knew there was something there, they just weren't looking hard enough, or they weren't doing the right tests. I needed to find someone that would listen to me, and figure something out, the reason I felt so CRAPPY all the time...there HAD to be something!! I wasn't producing such high levels of ACTH for nothing. The very next day I called my PCP and asked for a referal to a different Endo. I asked for someone younger (my last endo was beyond ancient) and preferably a woman. She said she knew just the Endo, and made me an appt for two weeks later. I was THRILLED!!

I saw this new doctor two weeks ago yesterday, and OMG I was so happy with our meeting. She agreed with me that there had to be something going on, and she said that although my last endo was normally very smart, with me he was on a wild goose chase, doing all the wrong tests, and doing tests that weren't even relevant. She drew some blood, testing for antibodies and various other stuff, and had me do a 24hr UFC. She told me to make an appt for a month later, and would get all my medical records from my various doctors (rheumatologist, PCP, last endo, etc...), would get the films from my MRI, and would go over the next steps at that appt.

Boy was I surprised when she herself left TWO messages on my answering machine this last Friday. I called her back on Monday, and guess what?? I have what she called a significantly high titre (1:32...negative is <10) of adrenal antibodies in my system! She was actually surprised to find this out! She said that I am in the beginning stages of adrenal insufficiency, and that my age (only 25 at the time of my tests) was a factor in why my test results came back the way they did...not entirely sure what she meant by that, something about the tests being more slack for younger people. She said that to my last doctor, not knowing about the antibodies, the tests seemed negative or normal, but from what she knows now, she considers them to be positive. She is having me come back to once again repeat the ACTH stim test, and do another couple tests, and she IS going to begin treatment with me. YAY!! She also said that with the antibodies in my system, along with the fact that I also have ANA antibodies (they thought a while back that I might have Lupus and Rheumatoid Arthritis, the rheum. said I have a likelyhood to develop them) and that my grandmother had Lupus, Rheumatoid Arthritis, and Sjogren's Syndrome and two of her sisters died from Lupus, that I could possibly have an autoimmune disease, and thinks I should possibly look into it somehow. She thinks it's something to investigate.

Would that explain why my ACTH is so high, but my cortisol is normal...my adrenals are so insufficient that my pituitary has to produce so much ACTH just to keep the cortisol at a normal level?

Does taking medication for adrenal insufficiency help right away, or is it one of those things where it takes a while for it to work? Will I start to feel better right away? My appt is still two weeks away, and now it seems like an eternity, although in the grand scheme of things, the fact that this investigation has been going on for over a YEAR, it really is quite soon. I just want something to make me feel better.

Since she said I am at the beginning stages of adrenal insufficiency, does this MEAN I have Addison's Disease? I'm thinking Autoimmune Addison's. I had called to see if I could get my appt moved up, and the nurse practitioner on the phone asked me what the deal was, if my cortisol levels were low, and I told her that my ACTH was high and I had adrenal antibodies, and she said "Oh, so you have Addison's."

Also, will this get worse...will my medication have to be adjusted as this disease progresses?

I know, I know...I'm just FULL of questions. Sorry!! LOL Thanks for reading if you have gotten this far!! I have a meeting to go to, so that's it for now...at least that's all I can think of. Thanks for any help!! :)

Kara





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