Adrenal Insufficiency Support Group

I posted a while back, but didn't have a reliable ACTH test to post. I've since had another test.

I've had a very hard time tolerating thyroid medications. I've had horrible swings, extreme fatigue, GI disturbances, extreme reactions to medication, temperature fluctuations, and many other things. I was so sick that I missed 30 days of work in 3 months, couldn't sleep more than 3 hours, could only eat about 5 things because everything else made me sick. I had horrible reactions to almost all medications and/or supplements.

I had a cort stim test that came back oddly high, but I was on IsoCort at the time, so another endocrinologist did another test. This one was in the AM (8:15) and with no other cortisol type meds.

Cort Stim 8:15 am

baseline - 13.3

30 minutes - 26.8

range - 5-25

Also had an ACTH serum test (9:15am)

12

range 10-60

The endo said I am fine adrenal-wise. I do feel better than i did, but not great. My thyroid numbers good - TSH .56 (.34-4.92) and FT4 .91 (.59-1.61).

Do these numbers look good? Do I definitely not have AI? I am confused about what I have read in the past and how it applies to these numbers.

Thank you for any possible help!

Hi Enigma,

I'm not really the superstar on interpreting tests around here, but from my perspective the cortisol reading at least looks very good. Are you off of the isocort and the thyroid meds now, and if so how long were you off before you were retested?

Deb

I am off isocort and was off for about a month before this recent test. I am not off of thyroid meds, still taking levothyroxine 75mcg. I was reading somewhere that SAI starts from a low-ish cortisol level and can double or triple, or even more, during the stim test? Also, why would be ACTH be at such a low level?

A few thoughts

- Thyroid dosing in the presence of low cortisol can create some bad symptoms. Its a common failure of the "thyroid first" approach to adrenal system treatment. This is mentioned in a lot of textbooks. Its even in the MIMS. (Australian medical ref manual - mainly drugs)

- Low ACTH or for that matter any ACTH testing has to be interpreted carefully and pretest conditions have to be known. It is very dynamic and has a really short half-life (like 10-15 mins)

- You had ACTH testing an hour after your stim test start? Gee, talk about introducing accuracy issues! I guess its possible the doc was thinking from a system recovery standpoint, but it seems a weird way to do it. A low ACTH figure whilst your cortisol is still high is an okay thing. That's how the cortisol/ACTH/CRH regulation works.

- SAI generally manifests as initial low ACTH, low cortisol and a subsequent "good" (eg double etc) stim test result. Its never cut and dry of course, but its a good start point. PAI generally manifests as initial high ACTH, low cortisol and a bad stim test. The difference between the two is the gland that is causing the problem. (pit for SAI, adrenal for PAI)

- To show you the possible variables, my stim test resulted in a 13x increase, not a piddling double or triple!

Bob

No, the ACTH serum test was not done after stim test. They were done on two separate days, several weeks apart.

Do you think my number warrant any further investigation?

What was it tested concurrent with? If it was whilst you were on Isocort it is basically invalid.

Additionally if the blood draw for the ACTH didn't have an associated (non Isocort affected) cortisol test then it is also basically useless. For the sake of accuracy you have to do differential diagnosis. (ie compare two or more results from the same sample)

I don't think the number itself is of primary importance. It should be a symptom driven investigation with tests used to narrow possibilities. Its a "likely" vs "unlikely" situation. ie you could be AI even with your 13.3 but it would be unusual. You also have to factor in your test results for how symptomatic you were at the time. To me it seems that your symptoms and negative AI DX contradict, which makes me ask what is really going on.

But in summary, yes further investigation is needed. Maybe CRH testing (ie TAI) is the next step?

Bob

thank you for your feedback, bob, I really appreciate it. I'm not sure why they didn't order a cortisol test at the same time. I don't think my doctor (PCP) is very familiar with all of this but she is very open and willing to discuss/test for/consider many things. The endos I saw thought adrenal testing was a complete waste of time and only did it to "do" it hence the IsoCort-compromised test.

At the time of this last stim test, I felt quite good, especially compared to the last 4 months. I didn't feel like I "needed" the stim test, but the endo thought we should it again give them Isocort the last time. At the time of the ACTH serum test, I felt quite bad, possibly the worst week out of this whole ordeal.

My symptoms over the past 6 months (since starting thyroid medication) have roughly been:

GI disturbances

Abdominal pain (shooting and burning)

Severe fatigue but inability to sleep more than 3 hours

Heart palpitations (to the point of losing my breath)

Extreme food sensitivity (could hardly eat anything and has not been much of an issues prior)

Extreme reaction to medications

Temperature fluctuations (usually between 96 and 99)

Increased pulse (resting over 100)

Decreased heart rate (was high-ish around 13x/80-90 and now is about 100/70, sometimes it is so low they have a hard time finding my pulse, doctors keep commenting on that)

Unintentional weight loss (approx 25 lbs)

Personality/mood changes

Complete inability to handle ANY stress, even "good" stress

Salty food cravings (and I used to HATE salt)

Dizziness

Hair loss

Doctors have told me it's nothing and that "surely" I must feel better on thyroid meds than I did before. I feel *ok* now, but for 6 months I was a mess. I still don't feel quite right, but apparently they can't do anything about it.

Post edited by: Enigma33, at: 01/05/2012 02:23 PM

Well its a pity the cortisol wasn't done at the same time as the ACTH/low feelings. That would be very strong proof of an AI state. Your symptoms too do a very good dovetail for AI related issues.

Maybe its time to ask your PCP about trying full HC replacement despite the endos negative testing? I mean its been going on for 6 months and you have already made a half attempt with IsoCort. I think if you take your symptom set and apply AI based reasons to it on a one by one basis (eg salt loss from low ACTH affecting angiotensin etc etc), then you can make for a compelling argument. You then try to assign other diagnostic possibilities to the same symptom set to try to defeat the logic (eg food allergy). That's what medicine is of course, finding the most likely cause.

I am a bit busy, but if you like I'll write stuff up along those lines and PM them to you. Might take me a few days though. Pls PM me if you'd find that useful.

Bob