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HPA axis reboot?

Discussion in 'General ME/CFS News' started by Questus, Feb 28, 2013.

  1. Questus

    Questus Senior Member

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    Am going to be seeing an endocrinologist next week because I was referred to her by an oncologist/hemotologist at MD Anderson. He's suggesting I have further investigation because of my very high norepinephrine level of over 1400.

    I have hyperadrenergic POTs, and he's not discounting that, but said there are cancers other than pheo's that have a high NE as a hallmark.

    Personally am not too concerned about cancer, although I think further investigation is wise, but I also want to use the opportunity with this doctor to try and see if she can help with HPA axis issues specific to CFS.

    My plasma cortisol is low, and I also have Hashimoto's thyroid disease, (an autoimmune disorder) and am wondering if anyone has any ideas of what to ask regarding HPA axis function in CFS? Tests, treatments?

    Has anyone had any success working with an endocrinologist on this, and if so how were you helped?

    Am cautiously optimistic, as this doctor is Indian and trained in India. For some reason I feel that may be an advantage.

    Any thoughts would be appreciated. Am trying to put together questions for a Wednesday appointment.

    I've done some research and bookmarked a number of scientific articles, but am more interested in learning what CFS patients who have tried to explore this with an endocrinologist have experienced.

    Thanks in advance for your thoughts.

    Best,
    Questus
     
  2. adreno

    adreno 3% neanderthal

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    I believe the gold standard cortisol test is an ACTH stimulation test. I would definitely have this done, if you are worried about your HPA.
     
  3. Wayne

    Wayne Senior Member

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    I've always had a bit of concern about pwCFS doing an ACTH stimulation test. I seem to remember they use a synthetic hormone to give a MAJOR stimulus to the adrenal glands. Though I've not read about any negative consequences, it has struck me as perhaps being akin to whipping a tired horse. When I was faced with the decision on whether to have one or not, I felt my health was too fragile to risk going through any unexpected trauma.
     
  4. adreno

    adreno 3% neanderthal

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    I had no problems with the test, even though my diurnal cortisol levels are low.
     
  5. liquid sky

    liquid sky Senior Member

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    Was your norepinephrine level a blood test?
     
  6. Questus

    Questus Senior Member

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    I agree that the ACTH stim test is part of the 'gold standard' for testing adrenals.

    Did the 24 hour urine test for methylhistamines and that's the 'gold standard' for testing for Mastocytosis. Squeaked by with a result of 788. 800 is positive for Mastocytosis.

    Those results and the out of range plasma norepinephrine and other catecholamines are part of why I'm in this 'process.'

    I understand there's a 24 hour urine test for catecholamines. Yes, I had the plasma catecholamine testing done which is the gold standard for testing for hyperadrenergic pots. The plasma result for NE, (norepinephrine) was 1400+ and the dopamine was very high as well. Epinephrine was low. Dopamine is a precursor to norepinephrine, so that makes sense, but haven't even researched the low epinephrine.

    Wayne, not sure why you feel the ACTH test is whipping a tired horse if it's being used as a diagnostic tool? Please share your thinking.

    Am expecting this doctor to order an ACTH stim test as well as the 24 hour urine catecholamine analysis.

    Just want the endocrinologist to acknowledge the CFS aspect of HPA axis dysfunction, but am not sure how to approach it?

    Thank you adreno, wayne and liquid sky for 'thinking out loud.'

    Hoping that I can glean some valuable questions and ideas for moving forward by brainstorming with knowledgable CFS patients.

    I know this is a journey, but I need a new map!

    Thanks for your help,
    Questus
     
  7. Ema

    Ema Senior Member

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    I think you will be facing an uphill battle trying to get an endocrinologist to accept much less properly test for HPA dysfunction unfortunately. Most of them are not very well versed in anything other than diabetes and are not even current on their own professional society's treatment guidelines. I say this not to discourage you from trying to get proper testing but just so you understand what you are up against.

    The ACTH stim test is great at diagnosing primary adrenal insufficiency but it misses about half of those with secondary adrenal insufficiency. Unfortunately HPA axis dysfunction is much more similar to secondary adrenal insufficiency. Any test that misses half of the people who actually have a condition is not much of a diagnostic test in my opinion!

    That's why the whole clinical picture is important and this takes a doctor interested in the whole picture. Most endos have only one or two patients with AI and probably none with AI and ME/CFS. I think this may change though if more evidence of the autoimmune disease process continues to be shown. But in the meanwhile, it is a very bleak field of medicine and many people find better luck with integrative doctors or DOs (osteopathic doctors) than traditional MDs.

    I don't think there is any harm that will come out of a stim test. Some say that the low dose stim test is more accurate for secondaries but it can be difficult to find anyone that knows how to dilute the vial and administer the test properly. But by all means ask for it and see if they do it (a lot) because it may be a better choice.

    I would also encourage you to consider a saliva cortisol test which gives a picture of free cortisol levels across the day. This is very helpful in assessing the rhythm of cortisol production as well as the amount. It can also be ordered on your own if necessary in most states for about $125. A serum 8am cortisol and ACTH may also be useful tests.

    Ema
     
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  8. Wayne

    Wayne Senior Member

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    Hi Ema, good information. My own limited understandings tells me your rather bleak assessment is correct. William Jeffries', who treated adrenal insufficiency with low-dose hydrocortone, never had a lot of faith in the conventional tests. Not that they weren't necessarily accurate, but because he believed cortisol levels fluctuate so much through out the day depending on circumstances, that it's extremely difficult to get an accurate picture with rather limited conventional testing protocols.

    Regarding the saliva cortisol test, I got a kit once, and intended to send in some samples. Unfortunately, putting the cotton balls under my tongue gave me terrific headaches. From that I assumed the cotton was probably not organic, and I've heard cotton is one of the most heavily sprayed crops in agriculture. Feeling that whatever was happening that was giving me the headaches would also likely skew my cortisol readings, I didn't even bother to send in the samples.
     
  9. adreno

    adreno 3% neanderthal

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  10. Wayne

    Wayne Senior Member

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    I just realized a bit ago that I may have been thinking of the Cortrosyn Stimulation Test. Perhaps I'll get around to checking it out more tomorrow.
     
  11. Plum

    Plum Senior Member

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    Good luck with your appointment.

    My experience of Endocrinologists aren't good ones. The idea that they would even link various issues with different parts of the HPA axis is in my experience beyond them. The only thing they seem capable of is giving a test and then prescribing something, or if yr bad enough chopping something out. I have seen 6 different Endos over a number of years for a non-CFS problem. Issues with CFS wouldn't even be discussable. I have discharged myself from each one's care due to being very stressed for the appointment and not getting any more out of them. My advice from my own experience is find out what tests you need and lead the conversation in that direction. Make sure you get what you need to put your mind at ease.
     
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  12. Questus

    Questus Senior Member

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    Thank you for sharing your thoughts.

    Have lots of experience with endocrinologists, I was dx with Hashimotos, (an autoimmune thyroid disease) in my early twenties. When I was dx at Mayo the endocrinologist said having Hasimotos put me at greater risk for developing Addisons 'later'.

    Agree that many endocrinologists are driven by blood test results, and don't think outside the box.

    On the other hand I've had exceptional experiences with a lot of specialists, and rarely feel disrespected by the fact that I have CFS.

    I've had CFS since 1986. I got sick when I was very young and I was so disrespected by many major medical centers and doctors, and I know first hand what that's like. But it's been a very, very long time since I've had experiences like that..Am happy to say. I do a lot of research before I see doctors, and also research the doctors I choose to see.

    I have a constellation of illnesses, and with the exception of CFS, they all have demonstrable test results and well defined criteria.

    I too wish that more doctors understood CFS, but I find that specialists are open minded and helpful when they see the whole picture. For instance I take Dr. K's 20 plus pages of immune test results, and they can see the anomalies there. Catecholamine test results are completely &$#@, so they see that. Lots of odd CBC results. POTS data, and other disease data. It's impossible to dismiss when they look at the whole picture.

    Yes, I do have MCAS, but as you probably know that is a very different animal than Mastocytosis. MCAS is very treatable, and Mastocytosis is a rare, horrible disease with a strong cancer connection.

    There are a lot of good articles online regarding HPA axis and CFS, and I'll print them and share them with the endocrinologist.

    She's going to explore the high norepinephrine level, high dopamine level, low plasma cortisol level, the ongoing Hashimotos, the hyperadrenergic POTS data, other illnesses and hopefully she'll address the HPA aspect as well.

    I tend to be hopeful, and hope she'll care enough to try. I never know which doctor will help, and so am cautiously optimistic. Am particularly hopeful because as I mentioned she's Indian and got her medical degree in India. I lived in China for a while, and find eastern medicine to be extraordinary and quite the opposite of western medicine.

    Will share any good information if I get it. Thank you for sharing ideas!

    Best,
    Questus
     
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  13. Ema

    Ema Senior Member

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    You can usually do the test without the cotton. I don't think Canary Club even comes with cotton.

    I agree with you about the toxicity as well. I am pretty careful with cotton products for that reason as well.

    Ema
     
  14. Valentijn

    Valentijn Activity Level: 3

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    I did one that had wax to chew on, followed by spitting into the little tube, instead of soaking a cotton roll.
     
  15. August59

    August59 Daughters High School Graduation

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    Just an FYI - If anyone is taking narcotic pain medication the opiates block most of the ACTH receptors, so your test is going to be a little low (or high) due to that reason. I believe that your opiate dosage has to be chronic and of a fairly high nature.
    If you take vicodin twice a day for 2 or 3 days a week, then there is no problem.
     
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  16. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Any opinions on tramadol, it not only work on opiate receptors but serotonin and noradrenaline receptors as well. might have a different affect on ACTH then just opiates.
    I have read that antidepressants increase cortisol levels but also that it can reduce excessive cortisol/stress response, there is just so much contradictory info out there. I think with ad's if they help one relax then it would reduce excessive cortisol response??
     
  17. Questus

    Questus Senior Member

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    Saw the new endocrinologist today and she ordered several tests.

    I may have mentioned that I have Hashimoto's thyroid disease, which is an auto-immune disorder. The body makes antibodies to destroy the thyroid, so I take a synthetic thyroid pill daily. When I was dx with Hashimotos, the Mayo endocrinologist mentioned I was at a greater risk of developing Addison's 'later' because of it.

    So because I have low blood cortisol levels, she ordered an ACTH stimulation test to check cortisol levels.

    She also ordered a 24 hour urine collection test to check cortisol. Why a 24 hour urine collection?
    Here's the best explanation I found.

    Multiple blood and/or saliva cortisol levels collected at different times, such as at 8 am and 4 pm, can be used to evaluate both cortisol concentrations and diurnal variation. Normally, the level of cortisol in the blood rises and falls in a "diurnal variation" pattern, peaking early in the morning then declining throughout the day and reaching its lowest level about midnight. A 24-hour urine cortisol sample will not show diurnal variation; it will measure the total amount of unbound cortisol excreted in 24 hours.
    The endocrinologist also ordered a 24 hour urine collection to check catecholamine levels. My plasma levels of norepinephrine was over 1400, and my dopamine levels were very high also. The 24 hour urine test is another way to look at catecholamines. Since being on the Methyldopa, my sympathetic nervous system has calmed down considerably, so I expect the norepinephrine level to be lower.
    Thank you for your input.
    I'll share the results in case anyone else has low cortisol or concerns about having Addison's or adrenal fatigue or for anyone who has had high levels of plasma catecholamines.
    Best, Questus
     
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  18. adreno

    adreno 3% neanderthal

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    The general rule of thumb is that serotonin increase cortisol output, but SSRIs tend to (at least partially) normalize the HPA and cortisol output. They do this by stabilizing serotonin. When you take an SSRI you will have higher tonic (basal) leves of serotonin, but less phasic (stimulus evoked). You might compare this to having a higher frequency, but lower amplitude; more stable and less "spiky".

    Acutely, the SSRIs will cause increased serotonin levels across the brain, but after a while serotonin receptors downregulate, and serotonin is stabilized. So this is why SSRIs can normalize cortisol (or really ACTH) output. In Major Depression, cortisol is often too high, and SSRIs will bring it down, as serotonergic transmission is stabilized. In PTSD and Atypical Depression, cortisol is often low, and SSRIs normally bring the levels up. Hope this helps.

    Of course, we have to remember that other factors influence cortisol output as well, the immune system being the main player. Like I have said before, the HPA is really just a lever that the immune system can adjust, in order to adapt the behavior of individuals so that the chances of survival are maximized.

    For other ADs, like tricyclics for instance, it's a different story. Usually tricyclics reduce cortisol output. Haven't looked into tramadol, but opiates in general reduce cortisol.
     
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  19. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I have read that avanza/mirtazapine has cortisol lowering effects, so probably why it helps some with insomnia.
    Its commonly mentioned that we have high night time cortisol which is why many of us have sleep issues but i think our total 24 hour cortisol output would probably be low, although i havent had this sort of testing done. At night i dont think our cortisol is excessively high but just high enough to bugger our sleep?? its the 3 bears thing, too hot, too cold and just right. I think finding that just right part will be apart of helping us sleep naturally as well as waking in the morning with some pep in our step.
     
  20. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    thanks for clarifying the srri issue on hpa axis.
     

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