Your ACTH is too low to give you hyperpigmentation. Only the higher ACTH numbers caused by secondary would cause it and yours looks primary, not secondary. (My ACTH is near 4000, I have a LOT of hyperpigmentation - it bites)... Be happy you do not have it!
Cortisone acetate? That is not a usual replacement... What time at night? Usually one takes the second does in the afternoon around 2-3 pm to mimic a normal healthy body. If you take it too late, it can interfere with sleep (or not, CA has a very short half life)...
No stim test? This is all the testing she did? What time of day? You are starting on replacements before all the testing is done?
There are links in the health pages for more info...
Hi, thanks for the response.
No stim test was done. She told me I had enough evidence to point to primary AI. Her reasoning was:
1. Cortisol on the bottom half of the range when my blood sugar was 2.5, which should of caused a spike of cortisol in the top half or higher.
2. High ACTH 17 (>10 abnormal)...once again same arguement, ACTH being higher should produce more cortisol than it did even though still in normal range.
3. 24 hour urine free cortisol low
4. Blood pressure around 85/55 for two years, severe orthostatic hypotension
5. Low blood sugar during fasting and random tests
6. Low sodium on this test
7. Having Celiac Disease put me at risk for primary AI
With all of this, she said the stim test would just be delaying the treatment because she said there is something wrong that needs to be treated. I didn't know cortisone acetate was the wrong med, what should I be on?
Do you feel I should not be on meds or diagnosed? Her arguement seems convincing that something is wrong, but I'd like to know what you think as you have gone through it.
I forgot to say:
She wants me on 25mg in morning and 12.5mg night, no afternoon mentioned. To answer question about starting treatment before testing, she said nothing else is needed as she has enough proof based on above. Is she wrong?
Cortisol can vary quite a bit. I had Cushing's disease which is too much cortisol. Cortisol goes up and down depending on time of day - and that is called the diurnal rhythm. It is highest in the morning and lowest at midnight (hence why you have to know how your meds work and take the meds to imitate this, not take a boost at night and throw your bod off ideally). Did you have more than one set of tests?
Testing at one time of the day - once - means you only know how the body is now...the stim test puts the adrenals under stress and lets the doc know if the AI is a true condition. Your doc has some good arguments, true, but they just don't really hold up but heck I am a layman, I am just here to tell you that uh, if you see another doc, they may not hold the evidence in such regard...
CA is not *wrong* per se - it is not usual. Usually hydrocortisone is used as it is most like what the body makes and has a longer half life. If you get sick and only have CA and not HC, you are going to have to take a lot, more often to get over it since the half life is very short. HC also has a short half life but is longer than that. Check out the steroid calculator or look for one - corticosteroid calculator. There are lots of steroid choices and docs make the choices. Be glad it is at least not long term - those have a lot of side effects. There are also handbooks etc.and sites that are helpful.