Low dose hydrocortisone as a treatment for ME/CFS

Suffolkres

Suffolkres

Senior Member (Voting Rights)
This is worth a revisit and is something which I have followed since 1999.
I know it's old but we as a family have followed this treatment since 1999 and it's approach and are revisiting it.
We are lucky to have a pragmatic open minded GP who supports the approach.

https://www.thelancet.com/action/showPdf?pii=S0140-6736(98)04074-4
(My emphasis)

Low-dose hydrocortisone in chronic fatigue syndrome: a randomised crossover trial
Anthony J Cleare, Emma Heap, Gin S Malhi, Simon Wessely, Veronica O’Keane, John Miell


  • Firstly, they saw 218 patients only 32 who met criteria
  • They said prognosis for recovery from ME was poor
  • that CBT GET are expensive and therapists inadequately trained
  • Patients "were wary of the rationale" behind CBT GET
  • Findings - None of the patients dropped out....
  • Suggested there was hormone under activity
  • that alternative effective treatments are needed......
https://www.thelancet.com/action/showPdf?pii=S0140-6736(98)04074-4
https://www.thelancet.com/action/showPdf?pii=S0140-6736(98)04074-4
Low-dose hydrocortisone in chronic fatigue syndrome: a randomised crossover trial

Anthony J Cleare, Emma Heap, Gin S Malhi, Simon Wessely, Veronica O’Keane, John Miell

Background
Reports of mild hypocortisolism in chronic fatigue syndrome led us to postulate that low-dose hydrocortisone therapy

.....may be an effective treatment.....
 

Attachments

I'm interested in this. To the layman, the fact that ALL of my symptoms improve radically when i am anxious or stressed makes me interested. To me as a layman it seems significant despite the fact that no Dr i have ever told about it seems remotely intrigued by it.
 
Hydrocortisone was a huge set back for my daughter. Endocrinologist suggested this due to low base cortisol level ( yet good acth response) . Still to recover fully. ( And she was making progress)
De Vega has a number of papers re glucocorticoids and ME. Good pre reading if you are considering this.

Sadly though provided for endocrinologist, he never read them.
 
Two things:

-If this were a good treatment we would all know about it and be doing it and there would be lots of nice evidence. Because it's an old idea and it's really simple to give people 5-15mg of HC.

-My understanding of the physiology is that if you give somebody, say, 5mg HC per day, their body will simply adjust to produce 5mg less every day. So in the long term you have basically the same HC exposure but with suppressed adrenal glands.
 
James Morris-Lent said:
Two things:

-If this were a good treatment we would all know about it and be doing it and there would be lots of nice evidence. Because it's an old idea and it's really simple to give people 5-15mg of HC.

-My understanding of the physiology is that if you give somebody, say, 5mg HC per day, their body will simply adjust to produce 5mg less every day. So in the long term you have basically the same HC exposure but with suppressed adrenal glands.
Click to expand...

Very low doses (physiological rather than pharmacological) are not thought to suppress the adrenal glands. If that were to be the case, allergy treatments could also suppress (inhalers, creams etc).
Low dose HC did deal with other problematic allergic conditions like ecthma, asthma and psoriasis.

The problem seems to be that secondary adrenal insufficiency is not being picked up and not being treated atm. This is even though secondary adrenal failure is known and low dose HC advised by the medicines and health regulatory authority.

This is useful (https://www.pituitary.org.uk/media/204461/Adrenal-insufficiency-a-guide-for-pharmacists.pdf)
and explains why HC is better than prednisolone once a day.

"Switching from a ‘twice a day’ dosage regimen to a ‘three times a day’ dosage regimen —some patients experience an energy lag —also known as ‘brain fog’— which usually occurs in anafternoon. Symptoms include irritability, dizziness, feeling faint or that their blood sugar may be low.This is an indicator that the body may be low on cortisol; therefore, changing the total daily dose into three divided doses instead of two may help maintain the level of cortisol in the body and help prevent these episodes."
 
Suffolkres said:
Very low doses (physiological rather than pharmacological) are not thought to suppress the adrenal glands. If that were to be the case, allergy treatments could also suppress (inhalers, creams etc).
Low dose HC did deal with other problematic allergic conditions like ecthma, asthma and psoriasis.
Click to expand...

Inhaled and topical steroids can suppress adrenal function if the systemically absorbed dose is chronically high. This doesn't usually happen.

Your adrenal glands produce roughly 15-25mg of HC per day. Does 'low-dose' mean 5mg? 15mg? 20mg? I wouldn't be confident of no suppression at higher 'low-doses'.

Low-dose HC treatment, as we mean it in this context - swallowing 5-15ish mg /day - will have zero effect on eczema, asthma, or psoriasis. Topical or inhaled steroids work for the conditions they work for by delivering an immunosuppressive concentration of steroid to a specific target tissue, while hopefully minimizing systemic delivery.

Suffolkres said:
The problem seems to be that secondary adrenal insufficiency is not being picked up and not being treated atm. This is even though secondary adrenal failure is known and low dose HC advised by the medicines and health regulatory authority.
Click to expand...
There is a difference between the notions of 'low-dose HC' - an old, unproven, speculative treatment for ME/CFS or 'adrenal fatigue' or whatever - and physiological replacement for adrenal insufficiency. The latter is what established guidelines would be dealing in.

I doubt that there are lots of people out there who legitimately have adrenal insufficiency due to pituitary dysfunction who are not being diagnosed.
 
James Morris-Lent said:
Inhaled and topical steroids can suppress adrenal function if the systemically absorbed dose is chronically high. This doesn't usually happen.

Your adrenal glands produce roughly 15-25mg of HC per day. Does 'low-dose' mean 5mg? 15mg? 20mg? I wouldn't be confident of no suppression at higher 'low-doses'.
Click to expand...
I am refering to about 10-15mg max per day.

=Low-dose HC treatment, as we mean it in this context - swallowing 5-15ish mg /day - will have zero effect on eczema, asthma, or psoriasis. Topical or inhaled steroids work for the conditions they work for by delivering an immunosuppressive concentration of steroid to a specific target tissue, while hopefully minimizing systemic delivery.
Click to expand...

This is contrary to what we found here.

=I doubt that there are lots of people out there who legitimately have adrenal insufficiency due to pituitary dysfunction who are not being diagnosed.
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I disagree, as Endocrine clinics are swamped dealing with diabetes and don't locally seem interested in more 'peripheral' conditions. Luckily and unusually for us, the GP is very supportive.
 
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I have found this quite measured and useful
https://www.goodreads.com/book/show/1654687.Safe_Uses_of_Cortisol

William McK. Jefferies was an endocrinologist who first became interested in the effects of cortisol while training under a pioneer in the study of adrenocortical function. During his fifty two years of clinical practice, Dr. Jeffries came to make a distinction between physiologic doses of cortisol—those that simply restore levels to what a healthy body would normally produce—and the much higher and more dangerous pharmacologic doses that are currently prescribed for certain conditions.

In this book, Jeffries argues convincingly that physiologic doses of cortisol can offer profound and dramatic improvement for an enormous number of conditions without the dangerous side-effects found in much larger doses. The list of conditions Jeffries has seen beneficially impacted by physiologic doses of cortisol is impressive, including not just Addison’s disease and rheumatoid arthritis, but also female fertility problems, autoimmune disorders, allergies, the common cold, influenza, shingles, mononucleosis, hypoglycemia and chronic fatigue syndrome.
 
Likewise this summary
Safe Uses of Cortisol
https://stopthethyroidmadness.com/safe-uses/
NB Family member underwent "gold standard" NHS testing before embarking on both adrenal and thyroid alternative testing in Metabolic practice.
The alternative testing identified a clinically significant pattern and is to be repeated soon.
 
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@Suffolkres, I have looked at the abstract of the trial you flag up in the first post on this thread. It was a tiny trial carried out for only a month and looking at how it affected fatigue levels during that time. The researchers themselves make it clear that this is not a recommendation, and much more research would be needed over much longer periods with much larger patient groups for it to be recommended.

The other link you give is to a book which mentions CFS in the blurb. Does it provide links to any larger trials? If not, writing a book recommending it as a treatment based on one tiny and very brief trial would seem to me to be unscientific and irresponsible on the part of the book's author.

Do you know of any other research that might be of use here?
 
I have been taking homeopathic cortisol and adrenal something from pigs?!
I think it increased my resilience/stamina a bit, but didn't last, could be placebo.
 
Trish said:
@Suffolkres, I have looked at the abstract of the trial you flag up in the first post on this thread. It was a tiny trial carried out for only a month and looking at how it affected fatigue levels during that time. The researchers themselves make it clear that this is not a recommendation, and much more research would be needed over much longer periods with much larger patient groups for it to be recommended.

The other link you give is to a book which mentions CFS in the blurb. Does it provide links to any larger trials? If not, writing a book recommending it as a treatment based on one tiny and very brief trial would seem to me to be unscientific and irresponsible on the part of the book's author.

Do you know of any other research that might be of use here?
Click to expand...
Not really for many complicated reasons.

https://stopthethyroidmadness.com/safe-uses/
"5) Why should most physicians be unaware of the safety of small physiologic dosages?
1. There has been no promotion of physiologic dosages by pharmaceutical companies.
2. There has been little, if any, discrimination between the effects of physiologic vs. pharmacologic dosages.
3. There is a tendency to confuse cortisone and cortisol with there more potent derivatives, such as prednisone, prednisolone, dex, etc. 18-19..."

The author based his book on clinical practice not research.

Kings, ( SW acknowledged here) who did some research in the 1990's lost interest.
Our NHS endo stated he was not unhappy with this therapeutic use, based on his clinical testing and observations, though he would not proscribe it. He is not in a research centre either.
As to your comment, "unscientific and irresponsible on the part of the book's author", maybe, that is one school of thought, but I can assure you, we as a family have shown due diligence over evaluating and trialing this.
It is likely that there are a subset of patients who might benefit with a diagnosis of ME and CFS.
 
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Trish said:
@Suffolkres, I have looked at the abstract of the trial you flag up in the first post on this thread. It was a tiny trial carried out for only a month and looking at how it affected fatigue levels during that time. The researchers themselves make it clear that this is not a recommendation, and much more research would be needed over much longer periods with much larger patient groups for it to be recommended.

The other link you give is to a book which mentions CFS in the blurb. Does it provide links to any larger trials? If not, writing a book recommending it as a treatment based on one tiny and very brief trial would seem to me to be unscientific and irresponsible on the part of the book's author.

Do you know of any other research that might be of use here?
Click to expand...

The study in JAMA also demonstrated some effectiveness, but had the following conclusion:

Conclusions.— Although hydrocortisone treatment was associated with some improvement in symptoms of CFS, the degree of adrenal suppression precludes its practical use for CFS.
Click to expand...

https://jamanetwork.com/journals/jama/fullarticle/188004
 
That's because anything over 25 mg is contraindicated. 20 to 30 mg every morning at about 8 AM, and 5 mg ( 25-35mg) every day at about 2 PM, for 12 weeks is not "low dose" really.
 
I remain to be convinced that low cortisol is a widespread problem in people with ME
e.g. This recent study of 107 people with ME:
https://www.s4me.info/threads/hair-...-syndrome-2018-roerink-et-al.4404/#post-80089

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