1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
Discuss the article on the Forums.

Adrenal Issues and treatment problems

Discussion in 'Adrenal Dysfunction' started by Misfit Toy, Feb 14, 2011.

  1. Cindi

    Cindi Senior Member

    Messages:
    196
    Likes:
    14
    Thanks so much Ema.. Best wishes:)
     
  2. Rand56

    Rand56 Senior Member

    Messages:
    491
    Likes:
    173
    Myrtle Beach, SC
    I'd like to add for anyone who has not read this thread to check it out........

    http://forums.phoenixrising.me/index.php?threads/isocort-supplement.15888/

    Just a different point of view based on what Dr. Cheney says about adrenal meds or supps can be the worst thing to take. I know myself and others on this forum have not done well at all taking these. Within that thread there is a summary of one of Cheney's speeches.....

    http://www.prohealth.com/fibromyalgia/blog/boardDetail.cfm?id=1346629

    "He finds that the adrenal and thymus and liver create the most “backflash”, i.e. loss of energy, and that the pancreas, brain and heart CSFs bring the most energy response".
     
  3. Cindi

    Cindi Senior Member

    Messages:
    196
    Likes:
    14
    Hi all
    Just wished to inform you that we have a new yahoo group for adrenal fatigue/exhaustion problems. We will discuss the treatment options for AF/AE. It is not a support group.We welcome anyone who has AF problem and wishes to join.
     
  4. L'engle

    L'engle moderate ME

    Messages:
    958
    Likes:
    426
    Canada
    Hi everyone,

    Reviving this thread a year later. I have symptoms of both low adrenal and low thyroid function. Whereever I have tried treating just the thyroid, my adrenals become further crashed. Similarly treating just the adrenals with glandulars or DHEA has either not been effective or produced unbearable side effects. I've recently started herbal remedies to balance and support all hormonal function. I've started raspberry leaf and vitex. As my main guidelines for symptom improvement I would would like to increase my low basal body temperature for thyroid and lessen orthostatic issues for adrenals. I am also considering both evening primrose oil and natural progesterone cream in the future. Most people taking these seem to be otherwise healthy people working on their fertility or menopausal issues, but I think it would be interesting to see how these supplements work in those of us with broader HPA and thyroid axis issues.

    Additionally, I'm considering adding pantethine for adrenal support but am wary of causing side effects. I took pantethonic acid a couple of years ago without much noticeable benefit but did not try pantethine.

    Any discussion on these supplements from people with ME/CFS would be appreciated.
     
  5. Ema

    Ema Senior Member

    Messages:
    3,422
    Likes:
    3,790
    Midwest USA
    I think the first thing to do before embarking upon any supplementation regime is to take a salivary cortisol test which measures the production of cortisol across the day.

    I also think that people with ME/CFS are more likely to have infections than the general population and this can change the cortisol requirements. Infections can make you metabolize cortisol more quickly and so longer lasting steroids in small physiological doses may be more useful than your standard Addison's dose of hydrocortisone. Many people with infections have trouble with hydrocortisone.

    Progesterone can be very useful but it is important to remember that it is a steroid as well. I would encourage testing of your sex hormone levels (E, P and T) before starting to supplement.

    I personally believe that supplementing hormones can be extremely useful. It was a very important part of my emerging remission. But it is also important to test and use these substances responsibly.


    Ema
     
    Little Bluestem, helen1 and L'engle like this.
  6. Dreambirdie

    Dreambirdie work in progress

    Messages:
    5,111
    Likes:
    3,364
    N. California
    What helps my adrenals most is: schizandra, eleuthero root, and ashwaghanda--which also has increased my T3 (thyroid). I took licorice as well, but after a year I began having anxiety from it, because it was too much at that point. My blood pressure, which was chronically low, had gone from 90/50 to 130/80---WOW! WHen I stopped the licorice it went back down to 105/60, which is my norm. At this point don not take the licorice at all.

    I also use progesterone (compounded cream) and that has been helpful too.

    I tried hydrocortisone, and THAT was a total disaster, which caused the current 4 year crash I am still in. I know some people hear swear by it... whereas I swear AT it. :rolleyes: HC is the WORST thing I have ever taken. I regret that I ever touched that "crap." It destroyed my already fragile health.

    Besides supps, I think it's also really important to eat regular meals when you have low adrenals. Low blood sugar drains the adrenals even more. And getting to bed at a decent hour and sleep as best as you can is also important.

    That is all I got. I hope it is useful.

    Let me know how the pantethine works for you. I have never tried that.
     
    Little Bluestem and L'engle like this.
  7. L'engle

    L'engle moderate ME

    Messages:
    958
    Likes:
    426
    Canada
    HC equals scary! Not going to try that one.
     
    rosie26 likes this.
  8. caledonia

    caledonia

    Messages:
    2,979
    Likes:
    1,577
    Cincinnati, OH, USA
    My saliva cortisol was flatlined for many years. I also have autoimmune thyroiditis and take Armour Thyroid for that.

    I had terrible problems tolerating any sort of adrenal glandular type supplement. Everything made me anxious or revved up. I finally settled on just supporting the electrolytes leaking out with drink made of salt, vitamin C, and magnesium. This helped me feel more solid, and less weak. Plus the magnesium helps with things like restless legs, heart palps, etc.

    Now that I've been doing methylation, I've made some gains in both thyroid and adrenal function. I've been able to cut my thyroid med in half, and I need 75% less salt, which I take as a sign of adrenal improvement. I haven't official retested the adrenals yet.

    The idea is that the adrenals aren't actually fatigued (even though they look horrible on a saliva test). They are just lacking signalling from the hypothalamus and pituitary. Those organs require enough glutathione to have proper signalling. So you treat methylation, raise your glutathione levels, improve signalling, and the thyroid and adrenals should improve. Rich Van Konynenburg came up with this.

    Question - infections causing problems with steroids - does that include gut infections like h. pylori, or candida? Because I have a lot of those, but not really viral infections that I know of.
     
  9. Ema

    Ema Senior Member

    Messages:
    3,422
    Likes:
    3,790
    Midwest USA
    HC saved my life. Tiny doses of dexamethasone got me out of bed. Now 2.5 years later, I'm on no steroids and feeling better than I have in years. My brain seems to be directing my adrenals properly again. None of that would have happened without replacement doses of missing hormones. It was an integral piece of the puzzle.

    Ema
     
    L'engle likes this.
  10. Ema

    Ema Senior Member

    Messages:
    3,422
    Likes:
    3,790
    Midwest USA
    Yes, absolutely bacterial infections can cause problems with cortisol regulation.

    I know that candida can thrive in either low or high cortisol situations but I'm not sure what effect it might have on cortisol metabolism honestly.

    Generally when people feel up and down roller coaster from hell of anxiety and adrenaline with hydrocortisone, they are metabolizing it too quickly. Either it needs to be taken in smaller doses more often or a longer acting steroid may be required. The dosing is a lot more individualized than most doctors would have you believe.

    Ema
     
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,319
    Likes:
    4,672
    australia (brisbane)
    So many variables when treating low adrenal function and one wont know how they respond until one tries. Going by peoples experiences with treating adrenals one can see different effects for different people. Start low and slow is my advice and thats also with herbals as well as hormones. Testing has been mentioned, definately good to get that done first.

    One arguement against cortisol is that it lowers immune function which is true but also low cortisol does the same. Its about balance, as well as other hormones too such as dhea and other sex hormones.

    Common doses used are generally too high to start with for cfs/me people. eg 50-100mg pregnenolone is something that is mentioned as a starting dose, this put me through hell. I found that i could tolerate 5mg of preg cream and get some good benefits from this and over time i have slowly increased this dosage and now i use 100mg a day. Good dhea levels i feel are also very important as they help balance out the effects of increased cortisol. One last thing is that its also about the right rythm, cortisol high when u wake up and low at night when u sleep. SO this needs to be taken into consideration.

    I also think these hormones issues are secondary to infection/immune issues we have. Obvious improvements might not occur until these things are sorted but its still worth persuing.

    good luck.
     
    rosie26 and L'engle like this.
  12. voner

    voner Senior Member

    Messages:
    233
    Likes:
    146
    ema,

    In another thread you mentioned some form of aldosterone from a compounding pharmacy... Could you elaborate upon how it is used, what tests need to be done before you start using it?, Etc.
     
  13. Ema

    Ema Senior Member

    Messages:
    3,422
    Likes:
    3,790
    Midwest USA
    voner, Bio-identical aldosterone is used just like Florinef (fludrocortisone).

    Florinef replaces aldosterone with some minor chemical changes to make it last longer in the body. Most people use Florinef because it is much easier to find and much cheaper. But occasionally people have side effects from Florinef and wish to try bioidentical aldosterone. Dr Wright has had some success with this treating aldosterone related hearing loss in particular.


    So the testing would be the same as for Florinef - aldosterone (AM fasting after salt fasting for 24 hours, being up for 2 hours and in the first 3-5 days of a women's cycle), sodium and potassium, and renin.

    It's available (or was last time I checked) from Kripps Compounding Pharmacy in Vancouver with a prescription (US doc is fine) and without a script from Biogenesis Antiaging Systems.

    http://www.biogenesis-antiaging.com/product_info.php?cPath=35&products_id=634&

    I always did well with Florinef so I didn't take any of the bioidentical products personally.

    Hope that helps!

    Ema
     
    L'engle likes this.
  14. voner

    voner Senior Member

    Messages:
    233
    Likes:
    146
    ema,

    thanks! very helpful.
     
  15. L'engle

    L'engle moderate ME

    Messages:
    958
    Likes:
    426
    Canada
    I just tried 2.5mg pregnenolone. I bought it a year ago and never tried it. I wasn't really expecting it to help since I think I need progesterone now, not the other hormones. I think I will wait a few days and maybe try this amount again to confirm my reaction. Right now I just feel weird. No way to know if I'd be feeling weird anyway but it seemed to come on within the hour after taking this. It's source naturals, 10mg, 1/4 of a tablet. It's not outdated.
     
  16. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,319
    Likes:
    4,672
    australia (brisbane)
    Preg can help with progesterone levels once u start increasing the dose.
    That small amount i think u can notice a difference, i did with doses like that and then once i stopped noticing effects i would slowly increase once again.
    Does it feel like your neurons in your brain are turning on?? It does have a big effect on the nervous system.

    cheers!!
     
    L'engle likes this.
  17. L'engle

    L'engle moderate ME

    Messages:
    958
    Likes:
    426
    Canada
    heapsreal: if anything my head feels more fogged over and bleary, also a bit sickish. I tend to think of these as estrogen dominance effects or low thyroid effects. I was kind of expecting a wired, fast pulse type effect like I got from DHEA but almost seems opposite. Calm energy is waht I would like to foster, and that seems to go along with progesterone. With this I think my system got almost instantly confused or something. Possibly since pregnen is the precursor to so many things.
     
  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,319
    Likes:
    4,672
    australia (brisbane)
    I have heard it can act like a benzo but thats normally in high doses but anything is possible in us i guesso_O
     
    L'engle likes this.
  19. L'engle

    L'engle moderate ME

    Messages:
    958
    Likes:
    426
    Canada
    I took 2.5mg of pregnenolone again today and it seems to foster some estrogenlike effects including a mild headache and some other discomforts. So I will moving away from anything that increase estrogen or testosterone in favour of progesterone effects. The vitex is going alright so far. A headache at first but no other side effects.
     
  20. musicfreak

    musicfreak

    Messages:
    34
    Likes:
    1
    Canada

See more popular forum discussions.

Share This Page