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Hydrocortisone & Thyroid Hormone Use in ME/CFS + Misdiagnosing Rarer Hypothyroidisms as ME/CFS

Helen

Senior Member
Messages
2,243
If you give hydrocortisone to an ME/CFS patient whose cortisol is normal, then you have supraphysiological levels. So it depends on whether you are giving hydrocortisone to correct hypocortisolism, or as a corticosteroid treatment for ME/CFS.

Interestingly enough, Dr John Chia has observed that patients who were given glucocorticoids like hydrocortisone or prednisone by a doctor during the acute phase of an infection — because doctor thought the symptoms were suggestive of asthma — have a high risk of developing ME/CFS later. This combination of glucocorticoids during acute infection is a recipe for precipitating ME/CFS, Chia has found.

To quote Dr Chia:
So one etiology for ME/CFS that Dr Chia says he has observed hundreds of times is the incorrect prescription of glucocorticoids when a patient has initially come down with a viral infection. One might guess that the immunosuppression caused by these glucocorticoids during the acute infection stage prevents the immune system from dealing with the virus, so that perhaps the virus is able to insinuate itself more into the body, leading to ME/CFS.

Of course, giving glucocorticoids like hydrocortisone once the patient already has ME/CFS is not associated with any known risk. It is only during the acute phase of infection that glucocorticoids appear to be able to precipitate ME/CFS.

Chia says he now tells every doctor to only prescribe glucocorticoids to a patient if their life depends on it, due to the significant risk he has uncovered connecting glucocorticoids during acute infections to the later development of ME/CFS.

I wish more research would be undertaken on this connection that Chia seems to have found.

I also think that this data from Dr Chia is extremely important in terms of understanding ME/CFS viral etiologies in general. It suggests that the enterovirus itself is not the main etiological determinant; rather, it is the state of your immune health when you caught the infection that may play a major role in whether that infection leads to ME/CFS or not.

Thanks Hip. I tried the link that you posted to the quotation from Dr. Chia but couldn´t find it. Would you please direct me to it? Would be of great help as this was how ME/CFS started for me. I didn´t know that hydrocortisone in pharmacological/supraphysiological doses could be involved.
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
@Ema

When you take hydrocortisone tablets, do you try to synchronize taking them with the daily variations in cortisol levels?

I do try, but I'm not sure how successful I am!

I take HC in 5 doses of decreasing amounts, first upon waking at about 730AM, then approx 1130AM, 3PM, 6PM and bedtime.

I also take a small dose of dexamethasone at bedtime. The dex has a much (much) longer half life than HC and peaks approx 5-6 hours after administration. So hopefully it peaks in the early AM hours to give some coverage when otherwise the HC would have long been gone.

It's not a perfect system by any means. Certainly there are still more highs and lows than would be optimal.

I think the pump (as used by diabetics with insulin) is actually more likely to be a workable solution for those with AI rather than a sustained release tablet. The pump also allows for the option of a bolus dose if needed at times of unexpected stress. There are some interesting stories of people who are trying this and while it is still in infancy, people seem to be much happier overall once they get their optimal dosing set.



I am also wondering whether simulating the normal diurnal cortisol cycle using sustained release hydrocortisone tablets might help ME/CFS patients with circadian rhythm sleep cycle problems. The daily cortisol cycle has a flattened response in ME/CFS patients, so by artificially reproducing the normal morning peaks and evening troughs in cortisol, using sustained release hydrocortisone tablets, I wonder if this might help resynchronize the circadian sleep rhythm, and improve the sleep cycle problems of ME/CFS.

Lots of ME/CFS have circadian rhythm sleep cycle problems. For example, I suffer from sleep cycle inversion, where my body seems to always want to synchronize to a clock rhythm where I sleep during the day, and am wide awake at night


Though I suspect it is the circadian sleep rhythm that controls the cortisol cycle, and not the other way around, so artificially reproducing the normal cortisol cycle may have no effect on the circadian sleep rhythm. (Though interestingly, the adrenals have their own built-in clock).

Artificially reproducing the normal cortisol cycle might have some other interesting benefits for ME/CFS though.

It seems like simulating the normal cortisol cycle should have some positive effects on sleep cycle disturbances. Of the very limited people I know with AI and sleep cycle disturbances though, replacing HC (albeit with multiple dosing and not sustained release tablets) has not changed the sleep disturbances. Glucocorticoids are definitely implicated in the functioning of the clock genes but it appears to be very complicated.
 

Hip

Senior Member
Messages
17,824
Thanks Hip. I tried the link that you posted to the quotation from Dr. Chia but couldn´t find it. Would you please direct me to it? Would be of great help as this was how ME/CFS started for me. I didn´t know that hydrocortisone in pharmacological/supraphysiological doses could be involved.

Unfortunately that Dr Chia video I linked to had to be taken down due to copyright infringement. However, the transcripts from that video (on the subject of steroids given during acute infections precipitating ME/CFS) can be found in this thread.
 
Last edited:

Hip

Senior Member
Messages
17,824
@Ema
I wonder if transdermal application of hydrocortisone would produce a nice sustained release effect. I am thinking in terms of crushing a hydrocortisone tablet into powder, and rubbing this powder across an area of skin, such as the skin on the top of the thighs. I use this transdermally approach when I take glutathione, incidentally, since you cannot effectively take this orally.
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
@Ema
I wonder if transdermal application of hydrocortisone would produce a nice sustained release effect. I am thinking in terms of crushing a hydrocortisone tablet into powder, and rubbing this powder across an area of skin, such as the skin on the top of the thighs. I use this transdermally approach when I take glutathione, incidentally, since you cannot effectively take this orally.
I think it would still need to be in some sort of slow release matrix. I used HC cream for a while but never had much luck with absorption.

I take my HC sublingually for the most part and while that is transmucosal not transdermal, the effects are pretty immediate and short lasting.
 

mermaid

Senior Member
Messages
714
Location
UK
@Hip
I too have been experimenting with T3 in the last year, though my situation is slightly different. I was diagnosed hypothyroid nearly 20 years ago,and treated with T4 for most of that time. Along the way some years ago I also acquired an ME/CFS diagnosis, although a couple of years ago I began to explore the possibility that it could just be not optimally treated thyroid issues, and started to look further.

I thought I might have adrenal issues and had a test which indicated a slight though not serious issue which I tried to self treat. Then I managed to get referred to an endocrinologist who was happy for me to try a small amount of T3 along with my T4 (reduced). I never took more than 20 mcg T3 at this point, but I actually felt much much worse. At that point I nearly gave up, but then heard about Paul Robinson who had written a book about T3 only use.

To my surprise I managed to persuade my endo to allow me to try T3 only treatment, and so with my GP's blessing I did this for around a year. I certainly lost some weight, (much needed) but did not improve in energy as much as I hoped. Unfortunately my other ME symptoms, digestive issues, (gastritis), and poor immune function tended to cloud the issue for much of the time.

I am currently slowly reintroducing T4 again, so that I have around 50 mcg T4 and maybe 30 mcg T3 and will see how that goes. It is possible that as my digestive issues have improved that my body is utilising the T4 better than before. My weight increase seemed to be very much tied in with my ME symptoms, and as I have had to cut most grains and all sugars due to the intolerances, my weight is likely to stay down now in any case.
 

Hip

Senior Member
Messages
17,824
I've only tried glutathione suppositories, and I think the suppositories were better.
 

knackers323

Senior Member
Messages
1,625
@Ema
I wonder if transdermal application of hydrocortisone would produce a nice sustained release effect. I am thinking in terms of crushing a hydrocortisone tablet into powder, and rubbing this powder across an area of skin, such as the skin on the top of the thighs. I use this transdermally approach when I take glutathione, incidentally, since you cannot effectively take this orally.

How many caps per day are needed @Hip
 

Hip

Senior Member
Messages
17,824
@knackers323
Do you mean hydrocortisone or glutathione? If hydrocortisone, then I should think that 5 or 10 mg daily is a good dose (that was used in this study). If glutathione then I use 400 mg of powder applied transdermally; but you may want to experiment with higher doses to see what effects you get.
 

Wayne

Senior Member
Messages
4,300
Location
Ashland, Oregon
I've only read the first 20 posts of this thread, but find it rather fascinating. I did a search on this thread for "iodine", and noticed it wasn't mentioned a single time. Iodine is so critical for normal thyroid function, but is also critical for our entire endocrine system. I'm pretty sure I remember reading that ALL of our hormones require adequate amounts of iodine. -- @Ema, great posts on this thread! :thumbsup:
 

poohsilk

Never gives up
Messages
36
Location
San Diego 2019
Wayne, I too was searching for Iodine as key word. I am about to embark on an Iodine protocol ala lynne Farrow and the Iodine Workshop on Facebook support group and have high hopes for it. I have never seen a single protocol have so many positive responses. I have been reading the posts in that group for about 3 months.
 

Wayne

Senior Member
Messages
4,300
Location
Ashland, Oregon
Hi @poohsilk,

The best of luck to you as you embark on your new venture. I'm sure you're aware of the potential for iodine supplementation to initiate detox reactions, which occurs when halides like flourines, chlorines, and bromines get knocked out of iodine receptor sites.

What's not mentioned in Lynne Farrow's book is that these halides can easily stagnate in the kidneys as they await elimination. What I learned is that magnesium oil (magnesium chloride) can greatly facilitate moving these toxins out of the kidneys.

A good friend of mine (whose quite healthy) got enthused about supplementing with iodine. He was on the lookout out for various detox symptoms, and the only one he noticed was somewhat of a "pressure" building in his kidney area. I recommended he rub magnesium oil directly into his kidney area.

He called back a day or so later, and said that the pressure immediately went away after doing this. He regularly does Qi Gong, and so is pretty tuned into his kidney health. He made a comment about how "clear" his kidneys felt after doing this magnesium oil therapy.

I recommend anybody supplementing with iodine to consider this adjunctive supportive therapy. Especially since most people are deficient in magnesium to begin with. -- Again, good luck! :thumbsup:

All the Best, Wayne
 
Messages
42
Yes but, for instance the more recent, http://www.medscape.com/viewarticle/408957 says

Conclusion: Our results suggest that women who begin long-term ( ˜ 10 years) thyroxine therapy in the premenopausal period can develop osteopenia by the beginning of menopause.

It may well depend in the dose and I strongly suspect you would need a fully suppressive dose to get an effect but I think the controversy continues. As you say, one wonders what the motives are for some of these studies. Anything below a suppressive dose would I think fall under my first scenario in which the patient's thyroid status is not actually changed. The result above might only occur with the generous or oversuppression preferred for treating thyroid cancer but I do not know the details.
Completely different subjct but do you know of any connection between sro negative Myasthenia and Severe M.E? I as because I seem to be alone in this. I have recently been treated here in UK hospital with my third IVIG five day course, for what seems to be atypical sero negative myasthenia and M.E. My response post IVIG fist course took months to kick in, although a few things were immediate, My response to the scond course was same but took shorter time and I had the best of health and strength I have had for thirty years. sadly I then relapsd two months ago and ended up being admitted and they gave me another course of IVIG, my rsponse this third time was same, a few good things straight away but then an up and down pattern until a bit of a dive the past week or so, and am still aiting for the good health and strength to return. I am so beyond fed up with not knowing exactly what is actually wrong but I wondered if you hav ever heard of anyone with severe M.E having a myasthenic trait?