Secondary Adrenal Insufficiency? - Addison's Disease Message Board

sparkles916 · 01-25-2008, 09:41 PM

The endo I recently went to see told me my ACTH Stim test was "normal". I am a bit confused after what I have read on the web about secondary adrenal problems, especially that the ACTH stim is not necessarily able to determine if one has a secondary condition.

My understanding is that my ACTH is low at 11, although with the current range of 5-29, I presume and endo see this as "in range". I have seen on the web, studies which include ranges such as 9-52 or 10-60 pg/ml. So, I don't know how she can determine that everything is ok just based on the doubling of my cortisol.

The results were: AM = 14.5, 30 min = 31.7 and 60 min = 33.6.

Does anyone who has been through the diagnostic process of secondary AI have any advice?

gtts4u · 01-27-2008, 06:24 AM

Hi Sparkles! Sorry that no one has replied. I have been watching for an answer.
Where is Florida are you? I am in North Central Horse country. I am in the same boat as you. I find it ironic that my Endo recognized an a.m. cortisol of 7 was low when the lab lists 4-22 as normal. Yet, he fails to recognize that my ACTH of 7 is low with the lab listing 5-27 as normal. On my stim, my pre cortisol level was 5.8 but I stimmed to 20.2.
I have read numerous places that an ACTH less than 10 is diagnostic of Secondary. Of course that was when the normal range was listed as 10-60. I a have also read that secondaries have ACTH less than 20 and that most normal people have levels in the 30' and 40's. Still, because I more than doubled he pronounced me as normal and refused to do any further testing. I believe the ITT is suppose to be better at identifying secondaries.
I have been considering going to Shands for a second opinion.
~GGTS4U

sparkles916 · 01-27-2008, 11:58 AM

Thanks for your reply.

Yep, I have read the same things. All I know is that the ACTH stim does not rule out secondary insufficiency, according to what I have read.

I will ask my endo about further testing. She was pretty good about doing the stim in the first place, and maybe she will be interested in further testing.

I see a dr in PA right now, as I was up to see my family and became very ill on my thyorid meds - which were discontinued for the time being. So, I found a Dr up here.

I hope you find some help at Shands. I was seeing an integrative medicine dr some time ago, but I was afraid to go the cortef route without proper testing. Unfortunately, it seems that conventional endocrinology is very much at odds with "alternative" medicine. I think, however, I did the right thing in at least getting the stim done before I make any decisions.

I just wish I knew if my likely seconday AI (unrecognized by conventional endos thus far), was permanent or temproary. It would be good to know. Incidentally, some of the articles I found which used the ranges 10-46 and 9-52 are European. I wonder if ours is the only range that is so low. ????

I see my endo in a few weeks, and maybe I can get this sorted out.

gtts4u · 01-27-2008, 12:49 PM

I know how you feel. I don't want to start meds if I don't need them. However, my endo won't do the ITT or any other tests. He won't even see me anymore.
Incidently, I have Premature Ovarian Failure and am now going thru tests for Pernicious Anemia (malabsorbtion of B12). All of these can be related.
I do believe that the ranges here in the US are flawed for alot of test. I have found that the B12 ranges here are the lowest also.
Let me know if you find any answers. Good luck.

sparkles916 · 01-27-2008, 06:03 PM

It was my saliva test is what precipitated all this further investigation on my part becasue it showed lower cortisol, very low DHEA and low reproductive hormones.

Once I became intolerant of thyroid medication over the last two months, after I had such fantastic initial success with Armour, I knew I was in trouble.

Over the summer I had the ACTH which showed 11. Of course that endo never commented on it and I preume he considered it "normal". At least the new endo had enough sense to know that the literature suggests that mid range morning cortisol (say between 14-17) plus low normal ACTH warrents further investigation and give me the stim> I don't know that she is well-versed on diagnosing secondary AI. The lab "forgot" to get my ACTH this time round prior to my stim. I am still a bit perturbed by this!!!

In the meantime, I have decided that I am going to one of those online companies and order some labs for myself - including DHEA-S, and some of the sex hormones. I will show this endo and see what she says, and maybe the next endo (???

) At least I will bolser my case.

________________
On the subject of autoimmune diseases, I found that I had signiifcant antigliadin ABs (IgA) - so I went gluten free in the hope that it would help my condition(s). My family has a number of autoimmune disease, including hypo, perncious anemia, PCOS and Crohns. Definately a connection. Good luck with your B12 diagnosis.