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Addison's Disease Message Board


Addison's Disease Board Index


Hi!

Thanks for your post, Deb. I'm sorry you had such a bad reaction. It would seem that some people have a reaction and others don't have any-- but it doesn't seem to relate to what is wrong with them. I have a friend who has since had surgery for Cushing's disease. Prior to her diagnosis, they thought she might have Addison's and they did a high dose (250mcg) ACTH stim on her. She had an immediate full reaction with flushing, nausea and drop in blood pressure. She had GI distress and severe muscle pain, etc, for 4-5 days following the stim test. Some can certainly be allergic to the synthetic product, but it is rare. Maybe that is what happened to her-it was frightening, regardless.

I felt lousy for 3-4 days after my stim with severe muscle pain all over and some GI upset. I was exhausted, too. My stim results were a pre of 8.2, a 30 minute of 20 and a 60 minute of 25.

I just had more testing this week, CRH stimulation test and a 1mcg ACTH stim. Interestingly, I reacted to the 1mcg a little bit-I got a migraineous style headache at about 60 minutes. The CRH caused flushing (which it does for most) but then I spent the rest of the day with GI upset and bad fatigue. As an insomniac I was grateful that it left me so worn out I slept for 12 straight hours and actually feel relatively good today! (Weird small blessings). The endo was wonderful to agree to the tests, I know he doesn't think this is my problem. I just feel so strongly that my weird set of symptoms are endocrine. He does agree with that but tells me my results are all so normal it seems unlikely. It is funny how doctors say that and then wash their hands of you. I asked what doctor he might recommend (in what specialty) and he said he didn't know. He had no idea what might be wrong with me instead. I am at a loss.

I have a TSH of 4.4 and free T4 of 1.1, one year ago my free T4 was 0.95 with a TSH of 1.65, negative for antibodies and no enlargement of my thyroid. (I asked if it might be central along with central addison's.) My 8am cortisols are 8-10 (5-22), although tested through Esoterix labs they are 13-15 (8-19). This last time, I had a simultaneous blood draw and half went to a different (special endocrine only lab in California) and came back at 13 (8-19), while the local lab value was 8 (5-22). Quite a discrepancy and I don't know what to make of it. My ACTH values are always 23-27 (10-60pg/dL). My IGF-1 is well within normal range and my FSH/LH also appear appropriate. My DHEA-s levels dropped last year from 190 (n48-247ug/dL: 3/04) to 55 (48-247) this month. He recommended I take a supplement of DHEA but wouldn't guess as to why it was low. My aldosterone seems to run at the low end of things, too (7 and 11-normal 7-30) and renin normal at 107 and 144 with normal 70-330.

I know DHEA-s can be low with Lupus as well and my symptoms really cross over with that disease as well. My immune testing so far has all been normal though (complement, RNP, ANA, RF, anti centromere, ESR, CRP) and doctors keep telling me it isn't what is wrong. I am scheduled to see a rheumatologist in a month and I know that will lead to more complete testing. I just hate waiting and worrying.

Thank you so much for the info about the tanning, Chris. I have been wanting to ask you about that. I do have skin discoloration but it is so mild no one but my husband and I can really see it. I am yellowish with gold color at all rub spots (neck, underarms, inguinal, waist, knuckles). It is the color pattern of acanthosis nigricans but I don't have insulin resistance. I always thought if I had Addison's, it was central but couldn't explain my skin changes at all. The doctor examined me in a room with half of the lights burned out and couldn't see anything-let alone my skin! It was frustrating.

Deb, I hope you get your pit function back on this new test...were you on steroids for an extended time? Good Luck to you and I will hope for good results.

Take care,
Sadie





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