Synacthen test results?

[TopsyFlop]

Hiya, I had an SST test last Wednesday and haven't yet had the results back. I was wondering, anyone diagnosed with Addison's disease or further investigated for secondary adrenal insufficiency, was your endocrinologist quick to tell you your test result and proceed with treatment or more tests? I'm worried the radio silence means they're not going to investigate further and just discharge me despite my original 9am cortisol being 231 nmol/l. Thanks!

[radd]

TopsyFlop,

Welcome to our forum,

Did you have cortisol & ACTH measured? Have you heard any more from the hospital yet?

There are many members with adrenal issues not always recognised by the medical profession. We suffer adrenal insufficiency defined by low levels of cortisol, possibly DHEA and maybe other, but because it's not Addisons our adrenal reserves aren't 'officially' considered insufficient.

Thankfully mine better recovered with adequate thyroid hormone replacement meds. Do you have a thyroid problem?

[TopsyFlop in reply to radd]

Hey radd! Thanks for replying. No word from the hospital yet about the SST results - I kind of want to chase them but don't want to be a pest. The test was 11th May, I'm sure if the results were drastic I'd have heard by now.

I don't think they tested my ACTH as they didn't say anything about the first sample being sent off on ice, which I've read about here. My thyroid levels have been tested and described as 'mildly deranged' in two consecutive tests but they didn't give any actual results in the letter. I'm thinking it might all point to a pituitary problem, just a guess.

That's good to hear your cortisol improved with thyroid treatment. Were your thyroid results drastically abnormal before they decided to treat you?

[radd in reply to TopsyFlop]

TopsyFlop,

Yes and 'they' never succeeded in making me better so I self treat now.

It could be a pituitary problem but the pituitary also controls many other hormones so

normally other hormone irregularities would also be seen.

If you have suffered "deranged' thyroid hormones, that points to a thyroid issue. We can end up with poor adrenal reserve with insufficient thyroid hormone as the adrenal glands will step in to compensate but it doesn't happen the other way around.

Have you ever had thyroid antibodies TPOAb & TGAb tested?

Have you any recent test results to post?

[TopsyFlop]

Wow, that's really poor of them to not treat you properly until you're actually better, especially if your levels were so bad.

I don't have access to my test results I have put in a request to my surgery to see if I can get access, but lord knows how long that'll take. Definitely never had antibodies tested. For some reason it seems they're doing it bit by bit, rather than trying to get to the root of it in one go which is just drawing things out.

If I get hold of my results I'll come back and post them