Seizures after ACTH testing

[Buckupnow]

Why on earth would any doctor have an adrenal insufficient patient who is on Hydrocortisone or Prednisone stay off their medication to have tests when there is always the risk of organ failure and brain damage caused from blood vessels collapsing?   I've talked with several patients who end up on anti-seizure medication after staying off HC for testing.   It doesn't seem like the risk is worth knowing if the adrenal insufficiency is primary or secondary.  What happened to the oath "first do no harm"?

[kevieb]

Buckupnow--how did these people know they were adrenal insufficient in the first place?   I would think that whatever original testing was done to diagnose AI would give a clue as to whether it was primary or secondary.

Also, with secondary, you are likely to have several other hormones off.  So maybe these people could get a complete work up done and have all their pituitary hormones tested.  If it is secondary AI, they are likely to have other pituitary hormones off, also.  If it is Primary, the problem is in the adrenals themselves---so the pituitary hormones aren't as likely to be affected---except ACTH, which should be suppressed when on medication.

Also, If a person is losing too much salt, and needs to take florinef--that is most likely Primary AI.  Rarely do SAI people need florinef.

Maybe not the most logical thinking--but it is an option for someone already on medication who doesn't want to test.   I can't figure out why they test once you are on medication, anyway---unless they are doubting your diagnosis.

[rumpled]

Depends on the dose re shut down. It also depends on the person - some people can take a load of steroids and get Cushing's - so different people react to the med differently. I just don't think the docs that give the meds really take the potential damage long term into effect.

After all, the test is to determine IF the adrenals are shut down. You can do the stim test but ONLY on the short acting meds. I have done it before - you just have to skip the one afternoon dose.

If you need the supplements, you need them. Hormones, as far as I know, don't store (although there is some thought that some cortisol stores in fat cells) - and so you have to take them. I take mine daily...

[Buckupnow]

Total HPA suppression occurs somewhere around a dose of 60mg for most people.  Normal functioning adrenal glands produce somewhere between 40 and 60 mg of cortisol a day for an active adult.  Which makes sense that a stress dose of 100mg would totally suppress all HPA function and affect all of the adrenal hormones.  

[kevieb]

I didn't think you could do testing once you were on HC.  Doesn't your body shut down any or all of your cortisol production once you are on HC?

Last time my doc tested my cortisol while on HC he just had me skip my morning dose, but I think my afternoon dose at the time was around 3 or 4 pm.

My cortisol levels came back very low, which was what he felt he was seeing when he did a clinical exam on me---my symptoms pointed to low cortisol, even though blood serum tests had been higher than normal (not extremely high) and my 24 hour urine test had been a little low, but not a whole lot low.

Does this tell me that my testing was wrong, or that a clinical exam is more important than what a blood test says?

I had previously tested almost bottomed out in both cortisol and ACTH and then had been given a cortisone shot in each heel, AFTER my tests had already come back low.  19 days after the shots, I had a stim test.  Both baseline cortisol and ACTH were low--cortisol was flagged low, but ACTH was still within range, just almost at the bottom of the range.

I failed the stim test, I quadrupled at the first draw, which I understand is relatively normal for a very low starting cortisol, but I only got to 11.something at the second draw.  My test stated that incremental changes were less important than the final result (something to that effect)  My test was looking for me to get to at least 20.

Second endo apparently did not see low test levels before the shots, and said that failed stim test was because of shots. My orthoped, my doc drom back east, an endocrinologist on ASK.com, my GI and a nurse at our surgery center have all said the shots are short acting and would not have shut my adrenals down completely.   Do I believe one endo who saw me once, dropped my cortisol 10 mgs the first time he saw me, weaned me off cortisol and was ploanning on taking me off thyroid---and totally ignored all other endocrine problems in my records, or do I believe 4 doctors and a nurse who tell me that the shots didn't cause my stim test failure?

After stopping DHEA and testosterone, which had been low, but brought up by supplementing---both levels dropped again.  My body does not seem to be able to maintain these things on it's own without help.

My stim test did not make me feel bad at all.  The second stim test, done by the second endo was such a joke---I don't understand why an eendo would not know the proper procedure for an ACTH stim test---the first one was done according to protocol.

[rumpled]

I know you have to be off the meds to test. Most docs try to do it by getting the person on HC (if on pred) for a few weeks while the half life of pred goes off, The patient then simply skips the afternoon dose of HC, testing in the morning, and thus you are 24 hours off with minimal risk and you can dose right after the test.

I have not heard of having issues due to the test - I know the test is hard for some people - chills, veins, etc. but I had not heard of or had any of my friends have anything that extreme like seizures or organ failure...