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Adrenal Insufficiency Testing?

Discussion in 'Adrenal Dysfunction' started by roxie60, Aug 5, 2013.

  1. roxie60

    roxie60 Senior Member

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    I did more research last night, found some articles I'll post here later related to adrenals, cortisol, thyroid. One actually seemed to support her conclusion (the only one I found) so I want to post it to see what ya'all think of it, it was from a nursing site I believe. There was a range (by the way this Endo was reluctant to give me actual lab values and ranges which aggravates me, she wanted to just give me her interpretation - I'm now concerned about giving my company her contact info since she thinks there is nothing wrong with adrenals) for the STIM test, at 30 and 60 mins the result had to be >18, both of mine were, I think that is how she is interpreting the results saying "no problem here" let's move along"


    Here is a good high level explanation of Cortisol, adrenals and thyroid function in the body. I have posted one paragraph I read:
    http://www.jockdoctors.com/page.asp?id=32&name=Cortisol DHEA

    Can cortisol levels be tested? Yes, but the “normal” laboratory values are so broad that the test often misses people with subtle or moderate adrenal insufficiency. For example, the standard laboratory range for cortisol is 8-22. However, anything under 14 would be considered adrenal insuffiency, in spite of it being in the “normal” range. Because cortisol is so safe, sometimes the best “test” is simply beginning a trial of taking cortisol (based on your symptoms and physical exam, of course).

    My lab starts the serum Cortisol at 3.0 - 23.0 as the range.


    This article also had a comment about HRT and its affect on DHEA. Prior to the last DHEA test my DHEA was below range, since then I have been on HRT. So when I read the paragraph below I wonder is the opposite is also true that HRT can increase DHEA levels. My latest DHEA (still waiting on the one the Endo just did) were higher, back in range but on the lower side.

    Estrogen

    It is possible that DHEA may influence the level of estrogen in the body. For this reason, some women on estrogen replacement therapy may need to adjust their dosage. This should be discussed with your healthcare provider.
  2. roxie60

    roxie60 Senior Member

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    Something else I am questioning. I am fairly confident that I have just finished another bout of some typo of viral flare up. It lasted about 4-6 weeks and I was nearly bed ridden much of the time. This is also the time I got those two very low Cortisol and the ACTH results. I dont think I have labeled this experience as a 'viral' flare up before, I use to just call it a flare up of symps. But I am beginning to wonder since this seems to happen 2-4 times a year and wipes me out for weeks. I am noticing this week I am slightly better so I am suspecting whatever happened is starting to lessen. Still am tired and other symps, but the bone crushing fatigue has lessened (maybe that is why my Cortisol for Thursday's test was at 5.2. Anyone know if viral flare ups can lower cortisol and ACTH, logically I would think being sick would affect ones adrenals. This is what I'm trying to research today.
  3. roxie60

    roxie60 Senior Member

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    Addison's disease - workup

    http://emedicine.medscape.com/article/116467-workup

    A normal 30- or 60-minute rapid ACTH test excludes Addison disease but may not adequately exclude mild impairment of the hypothalamic pituitary adrenal axis in secondary adrenal insufficiency.
  4. Ema

    Ema Senior Member

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    I think you are right to be concerned about letting this doctor be a part of your disability record.

    When you have an infection, your body pumps out much more cortisol naturally to fight the infection. It's a crucial part of the process and why those with AI must learn how to stress dose for illness. Usually for an illness with a fever, one would take triple the normal HC dose until the fever resolves and then wean down. If you do have an illness, it would likely make the low cortisol symptoms more pronounced.

    There is a doctor out there that will get you diagnosed and on proper treatment. You just have to keep searching.

    I think the Shomon thyroid site has a list if good thyroid doctors. Or maybe the Stop the Thyroid Madness group. It might be worth a shot at least.
    roxie60 likes this.
  5. Ema

    Ema Senior Member

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    Yeah, secondary AI is not mild impairment. It's every bit as life threatening as Addison's.
  6. roxie60

    roxie60 Senior Member

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    This is the nursing site commentary I mentioned above
    http://www.nursingcenter.com/lnc/journalarticle?Article_ID=845538

    What do the results mean? Normal cortisol values vary among labs. Most labs define "normal" as 18 to 25 mcg/dl, but a normal value can be as low as 16 mcg/dl if ACTH was administered I.M. All three results below normal signal adrenal insufficiency. At least one cortisol value must be within or above the normal range to rule out the problem.

    My results were >18 hense the Endo's conclusion I dont have AI
  7. roxie60

    roxie60 Senior Member

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    But would the illness cause low cortisol? I can attest to the symps being much worse during this 4-6 week period.
  8. roxie60

    roxie60 Senior Member

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  9. Ema

    Ema Senior Member

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    It wouldn't cause it per se (unless you have an infection in the brain which is certainly possible with these herpes viruses but not a typical cold virus) but it could make low cortisol symptoms worse because you are burning through cortisol and not making enough.
    roxie60 likes this.
  10. Ema

    Ema Senior Member

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  11. roxie60

    roxie60 Senior Member

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    just picked up new rx - levothyroxine 88mcg I am so exhausted tempted to take it now. still have not ate today. had a cup of coffee 3-4 hours ago. I really just want energy and the pharmacists said this should give me energy.
  12. roxie60

    roxie60 Senior Member

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    barbc56 I am starting the CPAP again (4 nights so far). I had stopped the past few weeks cause when I feel really sick I just cant handle fighting with the CPAP. I do have new hose and mask and seems a little less aggravating but I still fight with the hose a bit. I'm committed to using it. I am just so fearful now a days of catching bugs that even though I rinse/clean the hoses/nose pads they never smell clean and I get afraid to use them, I just and tired of feeling sick all the time and dont want to cause myself to be sick. I use ivory soap to wash the parts in since that is about the only soap without perfumes and therefore easier on my senses.
    barbc56 likes this.
  13. roxie60

    roxie60 Senior Member

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    Ema Well there is one Dr in another city on the list (this is another dr in my city but I know she has four offices in four cities and I just think it would be hard to get on calendar and I wonder about a dr that has so many offices in multiple cities. Unfortunately the one I was thinking of is no longer on th list, not sure what gets a Dr removed from the list.

    Ah, a note to the left explaining why a Dr is rmoved from list. - being removed not a good sign but site owner cant give specifics due to legal risks. How sad, patients cant get the facts about physician care, we just have to keep submitting ourselves like lab rats.....
  14. roxie60

    roxie60 Senior Member

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    I am weary of dealing with drs and illness :sluggish:
  15. roxie60

    roxie60 Senior Member

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    I looked at the decision tree in that second link and it would line up with why my Endo said everything normal, my result was >= 20. I guess if the 60 min was under 20 then she would have said secondary AI. I'm trying to get my brain around all this and varying perspectives. Apparently low Cortisol serum and ACTH are not important once an ACTH STIM test has been done. Need to lay down and rest, fatigued sitting hear looking through threads. Very good chart btw.
  16. Ema

    Ema Senior Member

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    I think that decision tree is full of problems. I would not go by it personally.

    An ITT can be very dangerous for someone who is secondary.

    I also don't understand why one would do an MRI of the pituitary. It wouldn't change the treatment required.

    Their numbers are off in my opinion as well.

    Your endo would never have said secondary because she didn't run the test (ACTH) that would have told her that you are secondary. You need to stop second guessing her and get another opinion from someone that knows how to administer and interpret the tests. It will just drive you crazy otherwise.
    roxie60 likes this.
  17. rlc

    rlc Senior Member

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    Hi Roxie, if the advice in the decision tree was followed you would not have even had a ACTH stim test. It says if serum Cortisol is under 5, then order ACTH blood test, if ACTH is under 10, then Pituitary failure is likely so MRI/CT the pituitary.

    Your serum Cortisol was 2.1, so under 5, your serum ACTH was 7, so under 10, so pituitary failure is very likely, so MRI/CT should be done. ACTH stim tests can produce normal results according to the reference ranges in secondary AI, but a five times increase from base line indicates a possible problem.

    From my understanding your next step should be MRI, if things are still inconclusive then a Insuline tolerance test could be considered, but it has to be done by someone who knows what they are doing, personally I wouldn’t be happy with your current endo doing it.

    No matter what form of AI someone has be it Primary, secondary or tertiary, it should not be seen as a diagnosis, it is a symptom, the cause has to be found. Blood test results like yours of low ACTH and low Cortisol are caused by the diseases listed here http://en.diagnosispro.com/differential_diagnosis-for/acth-corticotrpin-adrenocortical-hypertrophic-hormone-lab-decreased-cortisol/10108_11102-153_153.html they all causes secondary or tertiary adrenal insufficiency. And the overwhelming majority of them need MRI/CT to diagnose properly.

    What you are saying your current Endo has told you is the opposite of everything I have read on this subject, this concerns me greatly, I get the impression that they don’t understand what low ACTH blood tests really mean, and are only thinking of Addison’s, my advice is it would be wise to get a second opinion from an Endo who is familiar with secondary and tertiary adrenal insufficiency.

    All the best
  18. rlc

    rlc Senior Member

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    Hi Roxie, not sure where exactly you live, but my feeling is you need a endo who specialises in the pituitary. The Pituitary Network Association has a website here http://pituitary.org/ on these pages it has a list of pituitary specialists they recommend http://pituitary.org/medical-resources/physicians if you have a look through it you may find a specialist somewhere near you?

    All the best
  19. barbc56

    barbc56 Senior Member

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    Definitely soap without the dyes and perfumes. as they can damage the mask. I also use the Ivory I get wipes that are made especially for the CPAP masks and wipe the mask down every night. They clean and deodorize, unscented and are only $7.95. Mine last for several months. You should be able to get these at any medical supplies store or order online.

    Don't want to divert the topic here. Good luck.
    roxie60 likes this.
  20. rlc

    rlc Senior Member

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    Hi Ema, RE

    Many cases of secondary AI are caused by things like pituitary tumours, only an MRI will show these, in which case surgery can be required, just providing hormone treatment for any of the forms of AI without finding the true cause can be very dangerous. The cause has to be identified and treated otherwise, if it is something like a tumour, Hemochromatosis TB etc, etc. If left untreated it can progress and kill the patient even if they are on hormone treatment for AI.

    All the best

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