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1369218 tn?1282427484
How do I know they are doing ACTH test right?
I was told last year that I might have non classical adrenal hyperplasia. I then was given an ACTH test that was injected and then my blood was drawn twice. I am now reading that this really is not the proper way to get this done? I have many issues that point to this including: hair growth, bad periods, high testosterone, thyroid issues, weight gain and so on. I do not have any issues with my insulin, so there is no PCOS. I just want to have the test done correctly, any suggestions on who I can call?
Thanks and I live in Colorado Springs, CO about an hour from Denver
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657231 tn?1453836403
Was your testing done by an endocrinologist? Does this doctor have experience with CAH? Did they run any genetic tests?

Did you get a copy of your results?

It could be something else - CAH is not usual, but a battery of tests should be run. Any other tests done?
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1369218 tn?1282427484
I went to an endo that does diabetes. She did not even check my Free T3 with the TSH.
She was awful! The lab I went to had never done an ACTH test before. I feel there could have been error. My test came back fine. The endo was prompted to do the test because I had elevated 17-hydroxyprogesterone, high testosterone, bad periods, hair growth...so many things that go with NCAH. I just want to make sure that I get the test done properly. I contacted the cares foundation and the closest doc to me on their list is 8 hours away. What test, besides ACTH stim, can I request? Genetic tests are pretty accurate? Please help....Thanks!!!
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1369218 tn?1282427484
where can I get genetic testing done?
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657231 tn?1453836403
Any of your doctors can order the genetic testing. It is NOT a good sign that the lab has never done an ACTH test as it is a very fussy test and botched where drawn... it has happened to me many times - it has to be in a chilled EDTA tube, and put in the centrifuge immediately after the draw or it will degrade and your results will skew down.

Have they done testing on other stuff so they can rule out CAH? PCOS, PCOS plus Cushing's? Cushing's?

In any case, you need a much better endo.
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1369218 tn?1282427484
I did salivia cortisol testing a few months ago and the results are:

7am    7.9    (8.0-15)
11am  4.3    (3.0-7.0)
2:30pm 3.3  (2.0-4.0)
8pm    2.0    (<1.5)

My doc gave me cortef, but it made me so tired I stopped it. Plus, my main problem is I cannot sleep. I have tried so many sleep aids and nothing works. I want the doc to do an acth test, I just want it done right. I found a doc who understands more about NCAH 8 hours from me, but I want to make sure that's what it is first.
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657231 tn?1453836403
Your doctor gave you cortef - and you have an elevated reading at 8pm?

You cannot sleep - likely your cortisol is elevated all night and that is the reason - have you thought abut Cushing's?
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1369218 tn?1282427484
Ya, I have thought about Cushings. Especially because I cannot lose weight even though I do not eat that much or that bad. I carry my weight in the middle and have about 40 lbs to lose. My doc has me doing a cortisol blood test that reads me in the am and pm. How does Cushings get resolved? I had an MRI last year because of headaches and I had no tumor.
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657231 tn?1453836403
Cushing's is resolved by finding the source of the issue - which can be pituitary tumor, adrenal tumor or other. The headache MRI may not have picked it up as the radiologist was not looking for it (they are only a few millimeters in size) or the MRI was not done properly - it needs to be done with and without contrast, as well contrast given while you are in the machine and images taken during the uptake (this is called a dynamic MRI) as this will show up the smaller lesions.

One set of tests may or may not show it - and urine tests may or may not show it as well - i was cyclical and had a hard time, so I know ALL the test pitfalls. Lab error, test timing and and your own body - like cortisol binding globulin can make it seem like all is well when all is not so you need a good doc to test well and often.
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1369218 tn?1282427484
I had the with and without contrast MRI. I am pretty sure though that it was not a dynamic MRI. How do you ever find out the truth? I am having a AM and PM blood cortisol test done, will that help? I am working with a few different docs, so hopefully someone can help. My T3 was upped recently and I cannot sleep at all. I have thyroid issues too! I had a scan of my ovaries done Friday too because my periods are so awful!
Who can I go see who has a clue about adrenal issues? I am really tired of feeling tired and I cannot sleep and they say my levels are ok but I feel awful. They say I have thyroid, PCOS and now possibly adrenal issues! How did you finally find a doc that had a clue?
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657231 tn?1453836403
I had to doc shop... it was pretty awful - then I traveled thousands of miles and found a doctor who diagnosed and treated me.

I still have to travel to get regular check ups.

As well, I have thyroid (it is gone) female (gone) adrenal (gone) and pituitary (wacked) issues. I was diagnosed with PCOS too. Among other things. I am pretty much near the worst case scenario.

Are you spreading out your T3? If you take it all at once, it can zoom you up, but it only lasts a few hours...Can you talk to a pharmacist or the doc about changing around how you take it?
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1369218 tn?1282427484
I am almost there. I am ready to go to the ends of the earth to find a doc that gets all this. I have spent so much money on quacks, it is ridiculous! I do spread out my T3 and it does help a little. The problem is that I do not feel better even though my levels are good and I cannot stand to take anymore then I am on. I have so many symptoms of low adrenals that it is crazy. I just want to get the ACTH test done properly to at least rule it out. Can you give the name of the doc that has helped you? I think in today's society it is like gold. Thanks again for your input!!!!
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657231 tn?1453836403
When you go to the lab, just be assertive and and make sure they do it right - if they do not, tell the doctor that this test was not done right and why. I do. But it needs to be done with other tests - ACTH is only half the loop - and the adrenals have other hormones.

A body can only take only so much T3. I take a total of 15 in a day and I have no thyroid. I had a doc that gave me 25 and it was too much.

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