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Low dose hydrocortisone as a treatment for ME/CFS

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Suffolkres, Nov 16, 2018.

  1. Amw66

    Amw66 Senior Member (Voting Rights)

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  2. Hutan

    Hutan Moderator Staff Member

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    https://stresscenter.ucsf.edu/measures/hair-cortisol
    The authors of the study mentioned above also monitored salivary cortisol. Total daily salivary cortisol output did not differ between people with CFS and controls.

    People with CFS did have a statistically lower 'cortisol awakening response' (4.2 nmol/L vs 6.3 mol/L for the controls).
    There is a huge overlap in values - some people with CFS had higher values, some healthy controls had lower values. So, even though statistically significant, it is not a very impressive, consistent difference and explanations like an, on average, later usual waking time for people with CFS could easily explain it.
     
    Last edited: Nov 21, 2018
  3. rachel76

    rachel76 Established Member

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    I started this exact treatment 2 months ago. Today I finally tapered off the cortisol.

    It does not work.
    It did not help me at all.
    I have a friend with severe ME and she tried this same low dose cortisol treatment too. It did not help her either.

    When I took cortisol, my body temperature went up, but I felt just as exhausted, and horrible. The malaise felt no different.
    It felt like someone pressing the gas pedal on a car with no petrol in the tank.

    I did it with a doctor using an alternative American testing lab that showed low cortisol and thyroid hormones (My conventional blood tests for cortisol and thyroid are perfect.) It makes me wonder if all these diagnostic labs are a scam.

    I have classic ME.

    There is a risk of heart palpitations if you take cortisol together with thyroid hormones together, like I did and like stopthethyroidmadness recommends.
     
  4. Amw66

    Amw66 Senior Member (Voting Rights)

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    I hope that you fully recover from the experience.
     
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  5. Amw66

    Amw66 Senior Member (Voting Rights)

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    Thanks @Hutan. I did wonder re the time period represented.
    We have done hair testing for electrolyte balance and this was simply dismissed by medics. Showed significant issues.
     
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  6. James Morris-Lent

    James Morris-Lent Senior Member (Voting Rights)

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    I had a very similar experience with HC. I felt noticeably warmer - for a while. Yes, the labs are making money for some private company, as well as helping to sell the idea of 'adrenal fatigue', while providing no value to the consumer, aka a scam.
     
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  7. Amw66

    Amw66 Senior Member (Voting Rights)

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    In our case it was under the direction of an endocrinologist. The head if dept and a professor.Main focus diabetes as i suspect is the case for many UK endocrinologist s.

    I think he did want to be able to do something, but seized on a lowish base cortisol level without trying to understand why it might be low, or indeed any impact glucocorticoids may have.

    At drug interventions for vit D and hydrocortisone there have been horrendous facial skin reactions, each in a different area and now compounded during crashes, or when immune system under stress.

    Tangentially if you look at asian/ oriental face reading for skin probkems - the vit D area corresponds to liver and kidney and the hydrocortisone corresponds to hormones. So perhaps something in it...
     
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  8. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    I agree that it's not the case in all but a significant subset may exist, especially those with allergies.
    The problem is mainly with the NHS Synathen test for these patients is a blunt instrument, and which fails to record subtle irregularities.

    https://en.wikipedia.org/wiki/ACTH_stimulation_test

    Versions of the test

    This test can be given as a low-dose short test, a conventional-dose short test, or as a prolonged-stimulation test.

    In the low-dose short test, 1 µg of an ACTH drug is injected into the patient. In the conventional-dose short test, 250 µg of drug are injected. Both of these short tests last for about an hour and provide the same information. Studies have shown the cortisol response of the adrenals is the same for the low-dose and conventional-dose tests.[9][10]

    The prolonged-stimulation test, which is also called a long conventional-dose test, can last up to 48 hours. This form of the test can differentiate between primary, secondary, and tertiary adrenal insufficiency. This form of the test is rarely performed because earlier testing of cortisol and ACTH levels in association with the short test may provide all the necessary information.[8]
    On the hand the adrenal saliva test does show irregularities but is only used for hyper not hypo patients ( ie Cushing Syndrome)
     
  9. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    It's not merely waking time, but differences in activity patterns, using alarms vs not using alarms etc. The primary purpose of cortisol is metabolic and is dependent on daily activity patterns/habits.
     
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  10. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  11. DigitalDrifter

    DigitalDrifter Senior Member (Voting Rights)

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    Where is he getting these figures from? There's no way 2.6% of GP visits are ME patients, chronic fatigue may be but not ME. Conflating the two is a tactic often used by Wessely and his colleagues.

    I doubt 50% of ME patients have major depression, unfortunately the references for his claims are unavailable in the PDF OP posted.
     
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  12. leokitten

    leokitten Senior Member (Voting Rights)

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  13. Hip

    Hip Senior Member (Voting Rights)

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    It does not seem like an unreasonable figure. I would think that a large percentage of the population rarely go to their doctor; I imagine it's a hardcore of those with chronic diseases or protracted medical problems that most frequent the GP's surgery.

    So although ME/CFS patients are only around 0.2% of the general population, they are going to be present at a higher percentage within this hardcore group with chronic diseases.
     
    Last edited: Jan 24, 2019
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  14. perchance dreamer

    perchance dreamer Senior Member (Voting Rights)

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    I take 4 MG of HC upon wakening, and it does help me get through the day. My cortisol was very low in the morning, and this small dose of HC along with an adrenal-supporting supplement normalizes my morning cortisol.
     
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  15. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    Likewise my husband. Now down to 2.5 mg in morning and occasionally additional 2.5 during afternoon to manage a big evening event.
    This protocol is supported by GP who regularly reviews.
     
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  16. Perrier

    Perrier Senior Member (Voting Rights)

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    This was prescribed by several Cfs doctors in USA some years ago.Initially, 5 mg, then as the illness was so severe with huge relapses and seizures, the dose was bumped up to until a dose of 20mg. It brought nothing but osteoporosis in a young person. Now the weaning down has been going on, very slowly and carefully. Hopefully, we can get rid of this. Much has been tried on this illness and nothing has brought anything good.

    Someone please reassure me that the physicians and researchers know what they are now doing.
     
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  17. JaimeS

    JaimeS Senior Member (Voting Rights)

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    Yeah, I was prescribed hydrocortisone. NOT GOOD.

    I've gone into it in depth before, so I won't bother revisiting in depth, but I was not surprised when de Vega's team hypothesized that some corticoids may have a neurotoxic effect in some pwME. That's an accurate description of my subjective symptoms. :confused:

    But other patients have reported benefit over the years. It seems really individual.
     
  18. Amw66

    Amw66 Senior Member (Voting Rights)

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    Fructose/ steroids - liver?
     
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  19. JaimeS

    JaimeS Senior Member (Voting Rights)

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    ???

    Oh, you mean some kind of processing problem?

    That's possible, but I definitely wouldn't see it as the only or major possibility I don't think.
     
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  20. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    This post, and a number of subsequent posts, have been moved from
    Cortisol levels in Chronic Fatigue Syndrome and atypical depression measured using hair and saliva specimens, 2020, Cleare/Chalder/others


    not directly related to this study but Dr Mark Guthridge has just put together a thread where he asks:
    [​IMG]
    Dr Mark Guthridge
    @Dr_M_Guthridge

    1/Thread: Is #MECFS caused by chronic low-level #inflammation due to adrenal insufficiency and low cortisol? And, are anti-inflammatory hyrdrocortisones effective?



     
    Last edited by a moderator: Feb 3, 2020
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