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What adrenal tests are available?
Hey folks!!!
Thanks for all the info in this forum. I'm lurking and learning ...
My daughter is hashimotos low thyroid and we're wondering if she may have some degree of adrenal weakness. Her endo gave her an ACTH test and she was low normal, maybe even borderline depending on how. On how you interpret. We're sending a saliva corrosion test to a lab in a few days but wonder what lab tests might help determine if she has some kind of autoimmune adrenal problem. Every 'symptom checker' type questionnaire she fills out shows clear evidence of an adrenal issue., but doc seems to feel she only has to do one test. Aren't we paying specialist rates for endocrinologists?? Can't they do more than one test for this??
Any lab test that could shed light would be greatly appreciated.
Thanks!
Thanks for all the info in this forum. I'm lurking and learning ...
My daughter is hashimotos low thyroid and we're wondering if she may have some degree of adrenal weakness. Her endo gave her an ACTH test and she was low normal, maybe even borderline depending on how. On how you interpret. We're sending a saliva corrosion test to a lab in a few days but wonder what lab tests might help determine if she has some kind of autoimmune adrenal problem. Every 'symptom checker' type questionnaire she fills out shows clear evidence of an adrenal issue., but doc seems to feel she only has to do one test. Aren't we paying specialist rates for endocrinologists?? Can't they do more than one test for this??
Any lab test that could shed light would be greatly appreciated.
Thanks!
Dear Rumpled, I'm STILL searching for a decent doctor, I remember you from a while ago when I was on this site before my computer crashed. Anyway, stella5349 told me to post on this site as I have some questions about some tests that I don't know about.
I am trying to get some ammunition to take with me to the doctor (THE NEW DOCTOR), and make it seem like I know at least a little about what I am talking about. Would you go on the forum and look at them? By kenneltech?
So appreciated.
I am trying to get some ammunition to take with me to the doctor (THE NEW DOCTOR), and make it seem like I know at least a little about what I am talking about. Would you go on the forum and look at them? By kenneltech?
So appreciated.
My daughter found this case about using acth to treat acth deficiency:
(this was from: http://www.ncbi.nlm.nih.gov/pubmed/6086996 and the fulltext is available at http://www.journalarchive.jst.go.jp/jnlpdf.php?cdjournal=internalmedicine1962&cdvol=23&noissue=1&startpage=53&lang=en&from=jnlabstract )
I was reading somewhere else that ACTH also stimulates production of aldosterone as well as cortisol, so if you take it you has to be careful not to get too aldosteroney..
Questcor Pharmaceutical makes an ACTH gel patch for time release ACTH delivery, but it's mucho expensive. I mean like $20,000ish...not cheap stuff. It was recently approved for infantile spasms, which can be deadly. They don't know why, but it seems to help.
Somehow I'm doubting the Japanese lady in this study spent the equivalent of $20,000 each day for her drug program...
And I'm doubting that the ACTH stim test costs that much, or the low dose would already have become standard by now. ;)
More later if we find out more...
(this was from: http://www.ncbi.nlm.nih.gov/pubmed/6086996 and the fulltext is available at http://www.journalarchive.jst.go.jp/jnlpdf.php?cdjournal=internalmedicine1962&cdvol=23&noissue=1&startpage=53&lang=en&from=jnlabstract )
I was reading somewhere else that ACTH also stimulates production of aldosterone as well as cortisol, so if you take it you has to be careful not to get too aldosteroney..
Questcor Pharmaceutical makes an ACTH gel patch for time release ACTH delivery, but it's mucho expensive. I mean like $20,000ish...not cheap stuff. It was recently approved for infantile spasms, which can be deadly. They don't know why, but it seems to help.
Somehow I'm doubting the Japanese lady in this study spent the equivalent of $20,000 each day for her drug program...
And I'm doubting that the ACTH stim test costs that much, or the low dose would already have become standard by now. ;)
More later if we find out more...
We got a test of her blood level of acth that said out of range low. I suppose that could easily explain why her cortisol has also been low.
Her other pituitary hormones like LH, FSH, TSH, and prolactin seem to be fine; just a deficiency of acth.
Anyone have tips on living with isolated Adrenocorticotropic Hormone Deficiency?
The most common treatment appears to be hydrocortisone. Is there synthetic acth one can take?
Her other pituitary hormones like LH, FSH, TSH, and prolactin seem to be fine; just a deficiency of acth.
Anyone have tips on living with isolated Adrenocorticotropic Hormone Deficiency?
The most common treatment appears to be hydrocortisone. Is there synthetic acth one can take?
Alas, the ACTH stim test is used for a lot of things - so it is not just a test for CAH. Neither is CRH - I had it for Cushing's.
Thanks for the summary!
Thanks for the summary!
The tests we found out about are blood tests for adrenal autoantibodies and variations on the ACTH stim test.
Blood tests for antibodies: these appear to be useful in predicting adrenal problems. But they don't seem to be widely used. Hard to explain. Cost of running them is lower than the ACTH test, a couple hundred bucks. Specific antibodies: 21-Hydroxylase Antibodies and Adrenal Cortex Antibodies (ACA) are the two that have the best predictive value.
Less commonly ordered, but still possibly useful are 17-alpha-hydroxylase antibodies and antibodies to the P450 side-change cleavage enzyme.
Also there is a low dose version of the ACTH stim test that may be better at pinpointing adrenal glands that are not totally shot: it's the same idea as the normal test, but where that one uses 250 micrograms of Cortrosyn, this one uses only one microgram. That amount is enough to perk up the cortisol of a normal healthy person, but it won't do much for someone whose adrenal glands are 'tired'. In medical terms. you'd call that 'hypofunction' - working but underperforming. Many places are unfamiliar with this test. Also the manufacturer of the chem they use doesn't package it in one microgram doses, so the person running the test has to dilute it correctly. Room for operator error? Sure!
If y'all want some references, let me know, cuz we got bunches of them to show doctors.
A CRH test is a test of the pituitary gland. It's a bit more expensive
Blood tests for antibodies: these appear to be useful in predicting adrenal problems. But they don't seem to be widely used. Hard to explain. Cost of running them is lower than the ACTH test, a couple hundred bucks. Specific antibodies: 21-Hydroxylase Antibodies and Adrenal Cortex Antibodies (ACA) are the two that have the best predictive value.
Less commonly ordered, but still possibly useful are 17-alpha-hydroxylase antibodies and antibodies to the P450 side-change cleavage enzyme.
Also there is a low dose version of the ACTH stim test that may be better at pinpointing adrenal glands that are not totally shot: it's the same idea as the normal test, but where that one uses 250 micrograms of Cortrosyn, this one uses only one microgram. That amount is enough to perk up the cortisol of a normal healthy person, but it won't do much for someone whose adrenal glands are 'tired'. In medical terms. you'd call that 'hypofunction' - working but underperforming. Many places are unfamiliar with this test. Also the manufacturer of the chem they use doesn't package it in one microgram doses, so the person running the test has to dilute it correctly. Room for operator error? Sure!
If y'all want some references, let me know, cuz we got bunches of them to show doctors.
A CRH test is a test of the pituitary gland. It's a bit more expensive
Yes, there are genetic tests - but you want to do the other tests first.
I would find a neuro-endo or ask around at the offices for who does a lot of the testing.
For a stim test, it is not exactly an IV, but they should but in a cath so they don't have to keep sticking you but be able to take the draws out of the same cath over and over. Some endos can do it in office but it requires a lot of man power so most do not.
I would find a neuro-endo or ask around at the offices for who does a lot of the testing.
For a stim test, it is not exactly an IV, but they should but in a cath so they don't have to keep sticking you but be able to take the draws out of the same cath over and over. Some endos can do it in office but it requires a lot of man power so most do not.
Can you do just a genetic test for non classical CAH? I did a ACTH test with an awful lab that did mine with an injection. I heard you are supposed to be on an IV? Who would do that kind of testing? An Endo? I was told that I might have it because I had an elevated 17-hydroxyprogesterone. Who can I go see that understands this?
CAH is congenital adrenal hyperplasia - that form is usually picked up at birth though so I doubt she has it. LOCAH is late onset congenital hyperplasia. Genetic tests will tell about both. There is also another form - non-classical CAH.
I think there is no forum etiquette except not to be nasty. There are a zillion rules though under the terms of use - the link is at the bottom of the page.
Let us know how the doc appt. goes.
I think there is no forum etiquette except not to be nasty. There are a zillion rules though under the terms of use - the link is at the bottom of the page.
Let us know how the doc appt. goes.
Well, not sure about LOCAH (cuz I don't know what it stands for) but her endo seems to think she's 'loca'.... a little Spanish humor there.
:)
What's LOCAH and CAH?
BTW, sorry about forum etiquette - if I had more time I'd probbly find that under FAQ, but I'm under the gun timewise cuz we have doctor's visit tomorrow and I've read so much recently my brain hurts!
Deeply appreciate the help!!!
:)
What's LOCAH and CAH?
BTW, sorry about forum etiquette - if I had more time I'd probbly find that under FAQ, but I'm under the gun timewise cuz we have doctor's visit tomorrow and I've read so much recently my brain hurts!
Deeply appreciate the help!!!
Yes, and not everyone gets dark skin anyway. No one has all the symptoms at any time for most of the adrenal diseases. I had Cushing's and I was way out of the box.
But for her to get energy at night means her diurnal or circadian rhythm is off - being high at night is a sign of Cushing's - and she can be low during the day and high at night and it would give you both sides of symptoms.
My Cushing's was cyclical - so my tests were normal to low with highs scattered in. I was not heavy until about 7-8 years in (from discovery of my tumor) but I failed sleep studies and they blamed my thyroid, PCOS etc.
Adrenals are difficult to diagnose so make sure you get copies of everything and re-check what the docs say. Could your daughter have CAH or LOCAH?
But for her to get energy at night means her diurnal or circadian rhythm is off - being high at night is a sign of Cushing's - and she can be low during the day and high at night and it would give you both sides of symptoms.
My Cushing's was cyclical - so my tests were normal to low with highs scattered in. I was not heavy until about 7-8 years in (from discovery of my tumor) but I failed sleep studies and they blamed my thyroid, PCOS etc.
Adrenals are difficult to diagnose so make sure you get copies of everything and re-check what the docs say. Could your daughter have CAH or LOCAH?
Thank you, I wouldn't have known that.
From what I can gather, primary adrenal insufficiency can have dark skin as a symptom but secondary doesn't, right? So absence of that symptom doesn't ruleout secondary adrenal insufficiency, unless I'm missing something.
The rest of her symptoms sound closer to Addison than Cushings - low function as opposed to high.
Only time she gets any energy at all is when it's time to sleep. Frustrating to see her struggle to stay awake all day then be unable to get the rest she needs at night!!
From what I can gather, primary adrenal insufficiency can have dark skin as a symptom but secondary doesn't, right? So absence of that symptom doesn't ruleout secondary adrenal insufficiency, unless I'm missing something.
The rest of her symptoms sound closer to Addison than Cushings - low function as opposed to high.
Only time she gets any energy at all is when it's time to sleep. Frustrating to see her struggle to stay awake all day then be unable to get the rest she needs at night!!
I would find another doctor - it sounds as if your doc is already pre-disposed against adrenal or has no idea how to test.
I would also like to advise you that ACTH is a very very fussy test - make sure that when your daughter goes in that she asks, if she is alone, that the EDTA tube is chilled, that the tube not be put in the bin, but put immediately in the centrifuge from the draw as the sample degrades within minutes. So the low may be misleading - it may be lab error.
I happen to have very high ACTH (due to a pituitary tumor and lack of adrenal glands) and my ACTH drops by a thousand or more when handled badly- and the range is only say, 6-48 or 6-34 depending on lab so the handling by the tech is critical. A lab that does not have a centrifuge in each tech's cubby will not run the test accurately.
There are also other tests such as renin, aldosterone and dhea sulfate to test adrenal activity. Renin is fussy too.
Saliva tests are good, but they are free cortisol and so if your daughter is on certain medications or if she has high estrogen or a high CBG (which would have to be tested), the test would not be accurate as the test would turn out low. The serum or blood test helps but it helps to run a battery of different tests and end with the stim tests.
Your daughter has one endocrine disease... are her symptoms more like adrenal (thin, tired, darkening skin etc,) and less like the thyroid? Many symptoms overlap - but then again, she can have more than one issue, I know I did - however doctors seem to think that is not possible.
I would also like to advise you that ACTH is a very very fussy test - make sure that when your daughter goes in that she asks, if she is alone, that the EDTA tube is chilled, that the tube not be put in the bin, but put immediately in the centrifuge from the draw as the sample degrades within minutes. So the low may be misleading - it may be lab error.
I happen to have very high ACTH (due to a pituitary tumor and lack of adrenal glands) and my ACTH drops by a thousand or more when handled badly- and the range is only say, 6-48 or 6-34 depending on lab so the handling by the tech is critical. A lab that does not have a centrifuge in each tech's cubby will not run the test accurately.
There are also other tests such as renin, aldosterone and dhea sulfate to test adrenal activity. Renin is fussy too.
Saliva tests are good, but they are free cortisol and so if your daughter is on certain medications or if she has high estrogen or a high CBG (which would have to be tested), the test would not be accurate as the test would turn out low. The serum or blood test helps but it helps to run a battery of different tests and end with the stim tests.
Your daughter has one endocrine disease... are her symptoms more like adrenal (thin, tired, darkening skin etc,) and less like the thyroid? Many symptoms overlap - but then again, she can have more than one issue, I know I did - however doctors seem to think that is not possible.
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