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    Old 02-10-2005, 10:55 AM   #1
    sadie-mae
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    ACTH stim test side effects?

    Hi Everyone!

    I am new to the Boards and have a weird constellation of symptoms that have confounded my doctors for over one year. One of the things that came up as a differential is Addison's disease, likely secondary if present. I just had a 250mcg ACTH stimulation test today.

    I was wondering...those of you who have had one...did you feel anything during or after the test? Does a reaction suggest any type of diagnosis or is it just individual variation?

    I apologize if this is a repeat question-I tried to find a similar one on the Boards without success-it's hiding!!

    Thanks!
    Sadie

     
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    Old 02-10-2005, 01:55 PM   #2
    sadie-mae
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    Re: ACTH stim test side effects?

    Hi Chris!

    Well, I didn't feel anything during the testing but when I got home I noticed I had pretty nasty hand tremors, a pounding headache and sore muscles. I got kind of worked up yesterday, so maybe it was really from all of the stress associated with blood testing and doctors this week.

    I guess I was more worried (illogical, I know) that my test would be normal because I didn't feel anything with the ACTH. I am so tired of doctors and tests with "Good News, It was NORMAL!!" results.

    Thanks for your help,
    Sadie

     
    Old 02-25-2005, 07:06 PM   #3
    PunyDeb
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    Re: ACTH stim test side effects?

    I have secondary adrenal insufficiency. During my stim testing, I became dizzy and my BP dropped even lower than it already was. Also, we noticed over the next 24-48 hours that I had some darkened pigment (tanning) I didn't have before. People with secondary usually don't have that, because the ACTH is low. It went away as soon as the Cortef was started.

    I'm scheduled to have my second stim test next week to see if my adrenal glands have decided to start working on their own again yet. I had an AM cortisol drawn two weeks ago that was MUCH higher than last summer. That wtas after holding the afternoon dose of Cortef the day before and the morning dose the day of the test. I felt like heck until after I took my medication, but the test is encouraging. We'll see...

     
    Old 02-25-2005, 09:37 PM   #4
    sadie-mae
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    Re: ACTH stim test side effects?

    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

     
    Old 02-25-2005, 09:47 PM   #5
    annemv
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    Re: ACTH stim test side effects?

    Are you taking anything for your thyroid? That TSH seems awfully high...

     
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    Old 02-26-2005, 05:28 AM   #6
    Keraly
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    Re: ACTH stim test side effects?

    Sadie,

    I would agree about the thyroid, and what I've seen looking for a diagnosis for my son, I've come up with thyroid, CFS and Adrenal malfunction, though he passed his ACTH stim test, too! What I've read is that they are in process of lowering the upper "Normal" range for the thyroid to 3.0. That would make your result high (TSH). I've also read several books indicating how many people feel symptoms before they actually have irregular labs. This also points to the fact that the ranges have been flawed. My current doctor (after trying some 16 of them!) is an osteopath, who believes in the new upper range of 3.0 for TSH. Perhaps bringing an article about the intent to change that range into your next appointment to ask the doctor if he thinks trying some thyroid hormone migh help would be a good idea?

    I know exactly what you mean about how helpless you feel when the doctors don't even know what to test you for next, or there seems to BE no "next" unless you force it. You need to find out what's wrong and get treatment, not be sent home to get well on your own. I once had our original primary care doctor bluntly tell me (in a rather stern voice) that he was not going to call for any more tests for my son, nor was he going to refer me to anyone but a psychologist, if I wanted THAT appointment. But I know my son's symptoms are not emotional, or in his head, so I switched doctors instead.

    Almost forgot I wanted to answer your original question, as well. Trav did have a couple of reactions. His face flushed and there came to be several small pink "pimples" on his cheeks. This went away at the end of the test. But then about 30 min. later, he had a sharp pain just about where his heart lie. It was kind of scary for this reason. I called the office to ask if the test might have taxed his heart. They said it shouldn't have, and they'd never heard of such a thing. At the time, we were in the car away from home, so I stopped at a gas station store and got him some Advil and Pepsid. About 30 min. later the pain had gone away. Read several other posts from members of other support groups that mentioned that stomach upset was rather common. God's speed getting diagnosed and treated! ~ Tracy

     
    Old 02-26-2005, 11:09 PM   #7
    sadie-mae
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    Re: ACTH stim test side effects?

    Thanks for your replies!

    Keraly...your son's reaction sounds scary! I'm glad to hear he was okay. I wish I understood why the ACTH causes reactions in some.

    I often get chest pain and shortness of breath when I feel extra sick and I hate it. I also have gotten sharp chest pains that come on instantly and go within several minutes. Is that something people have with Addison's or is it thyroid related or unrelated to everything? A cardiologist couldn't find anything definitive with my heart to explain the problem and my lung function is excellent, in spite of mild asthma.

    I do think that I am hypothyroid-I have every symptom on the list. I plan to try a local naturopath that someone on the thyroid boards highly recommended in my town for followup care now. I will visit the neurologist and rheumatologist also, so I can rule out some things that have been bothering me as possibilities and then will likely try thyroid meds and DHEA to start. Then I will have to see how I feel and decide about cortisol or flourinef.

    More than anything, I want a correct diagnosis. I am frightened to try medications without a true diagnosis because I worry I will be covering serious problem that needs different attention. At the same time, I no longer really trust doctors to figure it out. It is such a delicate balance and I am still trying to find my place in it all.

    Thank you again for your ideas and sharing your stories. Reading these boards have made me feel far less alone in this whole mess!!
    Sadie

     
    Old 02-27-2005, 07:22 PM   #8
    PunyDeb
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    Re: ACTH stim test side effects?

    Quote:
    Originally Posted by sadie-mae
    Hi!

    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.
    Sadie
    Not oral steroids--inhaled ones for seven years. They're blaming my secondary adrenal insufficiency on the Flovent asthma inhaler. I'm not sure why it didn't give me any problems the first six years I used it, though.... Makes no sense. Does it?

    Thanks.

    And thanks for the tanning explanation, Chris.

     
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