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

[MeSci]

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.

That makes sense to me. It's why it makes sense to me that getting an infection while under stress, or over-exerting during an infection (both of which can suppress the immune system) could lead to ME.

It used to be mainstream to have a period of convalescence after infections such as TB or flu. Now people feel that they have to return to full activity/work asap. We have lost some important conventional wisdom in the modern approach to illness.

 

[Sasha]

There is no statute to say that all diseases must be researched. Pretty much all research is done because that particular researcher thinks it is interesting. Maybe that should change.

It strikes me as extraordinary that research funding isn't allocated by govt (the UK MRC and the US NIH) in rough proportion to disease burden (% of population affected x severity of disease). ME has a similar severity profile to MS but proportionally the NIH spend 60 times as much on MS as ME. We don't have UK figures because the MRC doesn't publish its spending broken down into disease categories.

I don't think it's good enough that researchers just follow their interests, where government funding is concerned. They're being paid for by public money and they ought to be working according to the priorities of the public - which should be disease burden.

Is there any move towards that, that you're aware of?

 

[MeSci]

However, this frenetic period I had lasted for 5 weeks after I stopped taking the T3 (I only took T3 daily for around two weeks, and then I stopped).

T3 is a fast acting thyroid hormone, and has a relatively short half life of around 1.5 days. So if I were hypothyroid, you would expect that on cessation of taking T3, within a few days my energy would have dropped down again. But my high energy went on for 5 more weeks after stoping T3.

The T3 may have triggered downstream changes that persisted for longer than the persistence of the T3 and its direct effects.

 

[somatoform]

[

Some borderline hypothyroidism is a possibility I guess. And I am certainly going to investigate this further. I have just ordered some more liothyronine (T3), to try to repeat my results. I only noticed the connection between T3 and my frenetic energy period while reviewing my records, due to this thread.
/

Glad to hear that you will pursue this and have your thyroid levels investigated further. I gather that you purchase your own T3, has your Gp checked your FT3 levels? most GP's will not test for this routinely.


This poor young girl may also have 'borderline' thyroid and cortisol levels, however reference ranges vary in each laboratory and are dependant of the assay. If this girl had a sample sent to 20 different laboratories each blood test result and reference range would be different. Good luck with your thyroid testing and remember not to take your T3 before your blood test , it will skew the result.

 

[Hip]

Glad to hear that you will pursue this and have your thyroid levels investigated further. I gather that you purchase your own T3, has your Gp checked your FT3 levels? most GP's will not test for this routinely.

My GP tested me for hypothyroidism, and I was told my thyroid levels are fine, but I did not ask the specifics of the test. I was tested by the NHS.

Is there any reason why free T3 is important to test for?

 

[Hip]

The T3 may have triggered downstream changes that persisted for longer than the persistence of the T3 and its direct effects.

Yes, as I mentioned, I originally took T3 as an experiment to try to make more mitochondria in my cells. T3 ramps up mitochondrial biogenesis. So I wonder if taking T3 for two weeks might have generated a whole bunch of new mitochondria, which then provided me with all that zest for around 5 weeks, after which they died out. Dave Whitlock (of ammonia-oxidizing bacteria fame) told me that the lifespan of a mitochondrion is around a month, and then it gets replaced. Though I could not confirm this, as I have not been able to find any published figures for mitochondrial lifespans.

Anyway, I've got some T3 coming, so I am going to try it again. Maybe I've found a new treatment for ME/CFS...

 

[somatoform]

My GP tested me for hypothyroidism, and I was told my thyroid levels are fine, but I did not ask the specifics of the test. I was tested by the NHS.

Is there any reason why free T3 is important to test for?

Hip, it is incredibly important that you have your Free T3 levels checked. If your doctor states that your thyroid levels are 'fine' it would be interesting to see what he checked..possibly only TSH and FreeT4 and where you sit in the reference ranges. DOCTORS DO NOT KNOW HOW TO SCREEN FOR THYROID DYSFUNCTION OTHER THAN USING A TSH TEST. To rule out a thyroid problem you must have FT4,FT3,TSH and Reverse T3(not tested in the uk) along with thyroid antibodies. Vit d, B12, folates, magnesium should all be checked and inflammation markers. It is the T3 that is converted and is metabolised at a cellular level and is the active hormone. The mitochondria need enough T3! Yes maybe your whole condition is underpinned by a lack of T3 that makes you hypothyroid. I suggest your next move is you contact your GP, ask what was tested regarding your thyroid, ask for results and reference ranges and take it from there. Good luck

 

[MeSci]

Yes, as I mentioned, I originally took T3 as an experiment to try to make more mitochondria in my cells. T3 ramps up mitochondrial biogenesis. So I wonder if taking T3 for two weeks might have generated a whole bunch of new mitochondria, which then provided me with all that zest for around 5 weeks, after which they died out. Dave Whitlock (of ammonia-oxidizing bacteria fame) told me that the lifespan of a mitochondrion is around a month, and then it gets replaced. Though I could not confirm this, as I have not been able to find any published figures for mitochondrial lifespans.

Anyway, I've got some T3 coming, so I am going to try it again. Maybe I've found a new treatment for ME/CFS...

I just did a quick search for 'mitochondrial turnover' and didn't find definitive times for humans but did find a paper that gave a figure of 2-4 weeks for rats, and also that it varied with calorie intake.

 

[poppythecat]

A few years ago tried triiodothyronine (T3), at doses of around 5 to 20 mcg daily.

Looking back at my medication notes diary from 2012, I see that after around two weeks of taking T3 in daily doses ranging from 10 to 20 mcg, I suddenly began a two month period of frenetic energy and motivation, where I found myself working much, much harder than normal on various projects and activities.

.................

I am not hypothyroid, since I was tested for this.

I will guarantee 100% that your thyroid was not fully tested and that if T3 works for you then you are, indeed, hypothyroid.

You need to go back to your doctor with a written list and ask for the following tests:

TSH, FT3, FT4, Vit D, Vit b12, iron, folate, ferritin, thyroid antibodies. You are not interested in your doctors opinion of what is normal. FT3 and FT4 need to be high in range for those who are symptomatic - as you are. It is common for hypo people to be deficient in VitD, B12, iron, folate and ferritin - and all need to be well in range, not just bottom.

Then head over to Genova UK and order the saliva cortisol test. This is the important one for those diagnosed with ME/CFS. I have been ill for nearly 40 years. Dismissed by the medical profession and refused any testing.

Yet the clues are there, and they know it.

For the majority of people diagnosed with ME, the cause is multifaceted endocrine disorders. It's complicated - which is why doctors hate it. What works for one doesn't for another - doctors hate that too. They prefer one pill fits all, and talking to a patient about what improves them adn what makes them worse is anathema to them.

I promise you that you and virtually everyone else on this forum can improve. The clues are in the testing - contrary to what your doctor will have told you.

Improvement takes, time, thought, work. It's a rocky road. I've been doing it for 2 years and I cannot tell you how I've improved.

There is no magic pill, there is no magic test, there is no magic expensive treatment. Mainstream medicine has the tests you need and the treatments you need. The only bar has to be drug companies.

For example. Treatment with T3 at 50mcg per day costs the NHS £4k. Yes, four thousand pounds. The same treatment can be purchased over the counter in Europe for around 1 Euro a week. Treatment that will help improve many patients - who would then not need, painkillers, statins, stomach meds, etc, etc.

 

[MeSci]

For example. Treatment with T3 at 50mcg per day costs the NHS £4k.

Over what time period?

 

[Hip]

DOCTORS DO NOT KNOW HOW TO SCREEN FOR THYROID DYSFUNCTION OTHER THAN USING A TSH TEST. To rule out a thyroid problem you must have FT4,FT3,TSH and Reverse T3(not tested in the uk) along with thyroid antibodies.

Do you have any references for this, ie, where does this information come from, that you need to check all these thyroid parameters in order to properly determine whether you have a thyroid hormone disorder or not.

I am aware of websites such as Stop the Thyroid Madness, but this website makes sweeping, evocative statements without providing any evidence for them or references to published studies.

You need to go back to your doctor with a written list and ask for the following tests: TSH, FT3, FT4, Vit D, Vit b12, iron, folate, ferritin, thyroid antibodies. You are not interested in your doctors opinion of what is normal.

Who would then be able to interpret these test results, if my doctor cannot? And where can I find reference ranges and interpretation info for these set of tests?

 

[Hip]

I just did a quick search for 'mitochondrial turnover' and didn't find definitive times for humans but did find a paper that gave a figure of 2-4 weeks for rats, and also that it varied with calorie intake.

Nice bit of web searching. I did not think of trying the search term "turnover".

 

[Campainger]

I just did a quick search for 'mitochondrial turnover' and didn't find definitive times for humans but did find a paper that gave a figure of 2-4 weeks for rats, and also that it varied with calorie intake.

Some borderline hypothyroidism is a possibility I guess. And I am certainly going to investigate this further. I have just ordered some more liothyronine (T3), to try to repeat my results. I only noticed the connection between T3 and my frenetic energy period while reviewing my records, due to this thread.

However, this frenetic period I had lasted for 5 weeks after I stopped taking the T3 (I only took T3 daily for around two weeks, and then I stopped).

T3 is a fast acting thyroid hormone, and has a relatively short half life of around 1.5 days. So if I were hypothyroid, you would expect that on cessation of taking T3, within a few days my energy would have dropped down again. But my high energy went on for 5 more weeks after stoping T3.

Do you have any references for this, ie, where does this information come from, that you need to check all these thyroid parameters in order to properly determine whether you have a thyroid hormone disorder or not.

I am aware of websites such as Stop the Thyroid Madness, but this website makes sweeping, evocative statements without providing any evidence for them or references to published studies.




Who would then be able to interpret these test results, if my doctor cannot? And where can I find reference ranges and interpretation info for these set of tests?

 

[Campainger]

Reducing the Scope of Guidelines and Policy Statements in Hypothyroidism
Published 24 June 2013 Journal Orthomolecular Medicine http://www.orthomed.org/jom/jom.html

Please click on above link to read the Unabridged Version
A Summary by Eric K. Pritchard" M.Sc

eric-pritchard-001.jpg
Reducing the scope of guidelines and policy statements is necessary to allow doctors to properly treat patients who have deficiencies in physiology that is not thyroid or endocrine but is functionally between the thyroid gland and the production of symptoms" i.e. post-thyroid physiology. The problem for doctors is simple. This physiology operates with the active thyroid hormone triiodothyronine (T3) which is effectively banned from prescriptions by endocrinology and medical associations in spite of it being available approved and effectively indicated.

Reducing the scope requires examination of the many facets that support these guidelines and policy statements:

1. 
   
   
   • Physicians are licensed and disciplined by the General Medical Council or other boards of medicine. Practicing in ways other than those condoned by medical associations or medical custom can invite an expensive" time consuming investigation and can end a medical career. Consequently the fears of such draconian possibilities force strict if not over compliance with accepted medical practice. American case law verifies this.
   • There are two classes of definitions for “hypothyroidism" 'linguistically proper' and 'popular'. The proper definition only implicates the thyroid gland while the popular definition implicates the entire Greater Thyroid System. Since the thyroid tests are based upon the proper definition and patients identify with the popular definition physicians and patients talk past each other. Unfortunately if either type of definition were stipulated in guidelines or statements this whole problem would not exist.
   • The post-thyroid physiology" shown on the grey background of the Greater Thyroid System drawing was discovered decades ago and has been investigated by many studies since. But the medical practice guidelines and policy statements for hypothyroidism do not address or disclaim this physiology. Logically then medical treatment of this physiology the ban of T3 should not exist.
   • Unlike all other sciences" medicine dismisses counterexamples as mere anecdotes. But other sciences find them to be valuable corrections of bad or incomplete theories. Some patients have been virtually resurrected with T3 and/or supplements for post-thyroid chemistry. But medicine dismisses these successes. No counterexample is considered by evidence-based medicine.
   • Evidence-based medicine recommends ignoring all studies that are not based upon randomized clinical trials. Consequently" the reviews (meta-analyses) of three randomized clinical trials ignored 98% of the available studies including warnings that T4 does not work for all and the investigations of post thyroid physiology. Further the reviewed studies were not based upon subjects with post thyroid deficiencies. Consequently the application of these studies the ban of T3 is not valid.
   • Some of the patient counterexamples have had to regain their health via T3 more than once. Consequently" their experiences fit the challenge de-challenge re-challenge test which indicates that T3 is beneficial for some patients.
   • Physicians avoid the prescription of T3 by not performing tests on the post-thyroid physiology. Routinely" this leaves the physicians with inadequate information for proper differential diagnosis. That is “solved” by prescribing antidepressants or claiming some un-treatable disease like Chronic Fatigue Syndrome. However the incompleteness of testing for differential diagnosis also invalidates informed or valid consent which is due to all patients.
   • Endocrinology also claims T3 is dangerous because it produces excessive variations of T3 in the blood. Since T3 has a half-life or exponential decay" this can be mathematically analyzed. This analysis shows that by taking T3 three times daily produces a variation far less than the “normal” range and potentially as low as the normal rhythms of the body.
   • Bone loss and heart attack dangers are also addressed in the peer-reviewed professional paper" “Reducing the Scope of Guidelines and Policy Statements in Hypothyroidism ” which will be or was published in the Journal of Orthomolecular Medicine on June24 2013 <br>

Selected Statements of Medical Ethics<br>

• 
  
  
  • A Physician Shall" While Caring for a Patient Regard Responsibility to the Patient as Paramount. (AMA 2001)
  • A Physician Shall Be Honest in all Professional Interactions. (AMA" 2001)
  • A Physician Shall Continue to Study" Apply and Advance Scientific Knowledge Maintain a Commitment to Medical Education Make Relevant Information Available to Patients Colleagues and the Public. (AMA 2001)
  • A Physician Shall Continue to Study" Apply and Advance Scientific Knowledge Maintain a Commitment to Medical Education Make Relevant Information Available to Patients Colleagues and the Public (AMA 2001)
  • A Physician Shall Act Only in the Patient’s Interest When Providing Medical Care Which Might Have the Effect of Weakening the Physical and Mental Condition of the Patient. (WMA" 1949 1968 1983)

Reducing the Scope of Guidelines and Policy Statements in Hypothyroidism

This paper by Eric Pritchard M.Sc. (published 24 Jun2 2013) proves that doctors who are denying the active hormone T3 to patients who need it - are practising outside of their scope. This is not only medical negligence, it is criminal negligence.

 

[somatoform]

Do you have any references for this, ie, where does this information come from, that you need to check all these thyroid parameters in order to properly determine whether you have a thyroid hormone disorder or not.

I am aware of websites such as Stop the Thyroid Madness, but this website makes sweeping, evocative statements without providing any evidence for them or references to published studies
Who would then be able to interpret these test results, if my doctor cannot? And where can I find reference ranges and interpretation info for these set of tests?

Stop the Thyroid Madness 1 and 2 by Janie A Bowthorpe she is the Editor of her second book. She challenges ineffective diagnosis and treatments. Her latest book is littered with evidence and references. She has facebook groups and has helped a tremendous amount of people.
If you are in the UK please visit the Thyroid Patient Advocate tpauk.com and Thyroid UK. Both sites are information and forum based, with very experienced members, also many members have symptoms of CF and ME.

 

[barbc56]

@Campainger @Hip

The above article is published by an orthomolecular organization. . Orthomolecular medicine is based on the theory that mega doses of vitamins and nutrition are all you need to heal the body. The science behind this theory is shoddy or nonexistent on par with Stop The Thyroid Madness.

I am planning to comment on this in the spin off thread of this one but right now it is too late.

More and more data is showing many vitamins are harmful and the best way to get your RDA is food as the body absorbs the vitamins better. This is not the same as orthomolecular medicine as it's based on studies/science.
whereas OM is not.

I don't want to debate this as it's my personal opinion based on science. I've posted this for informational purposes.

Back to the topic at hand, has any information been released about this alleged incident?

Barb.

 

[alex3619]

Evidence-based medicine recommends ignoring all studies that are not based upon randomized clinical trials. Consequently" the reviews (meta-analyses) of three randomized clinical trials ignored 98% of the available studies including warnings that T4 does not work for all and the investigations of post thyroid physiology.

(from post 142)

Actually this is not what EBM recommends. This is however how EBM is frequently misapplied in a rubber stamp mechanistic fashion. Its not the EBM theory, its how its misused. Its also how science gets railroaded. We are currently seeing this yet again in the P2P issue.

Managerial and medical guidelines such as used in the UK by NICE are at least some of the time tainted by this simplistic view of EBM.

Lots of RCTs should be downgraded one or even two rankings of evidence. Some case series studies should be upgraded a level of evidence. This is based on secondary factors, such as methodology and effect sizes.

EBM cannot be divorced from a rigorous analysis of each paper. Sadly, due to time and I would argue bias, systematic reviews are often just rubber stamp analyses which make sweeping judgements about the studies they are citing, without any proper understanding of those studies.

 

[Campainger]

@Campainger @Hip

The above article is published by an orthomolecular organization. . Orthomolecular medicine is based on the theory that mega doses of vitamins and nutrition are all you need to heal the body. The science behind this theory is shoddy or nonexistent on par with Stop The Thyroid Madness

I am planning to comment on this in the spin off thread of this one but right now it is too late...

It would be good to have comment on the actual content of the article in question http://tpauk.com/images/docs/reduce-scope-final.pdf

 

[knackers323]

@poppythecat are you seeing big improvements from T3 alone?

 

[Hip]

@Campainger, @somatoform, @poppythecat

I have been looking at the idea that high cortisol (such as from stress or disease) may cause increased reverse T3 production, which blocks the action of T3, possibly leading to a hypothyroid state.

Some people are calling this state Reverse T3 dominance, or Wilson's Syndrome. Though this is a controversial concept with little evidence behind it.


Dana Trentini says in her blog Hypothyroid Mom that:

In times of extreme stress, such as major emotional or physical trauma, surgery, extreme dieting, chronic stress or chronic illness, the body will convert a larger than normal amount of T4 into this inactive Reverse T3. Your TSH and T4 scores may look ‘normal’ however the person suffers hypothyroid symptoms due to the high levels of reverse T3. Few mainstream doctors test for reverse T3, declaring a patient’s thyroid lab tests completely ‘normal’ all the while their patient suffers debilitating symptoms because their reverse T3 was not tested.

This website says:

In the presence of elevated cortisol levels, due to chronic stress, the conversion of T4 to T3 is blocked. Not only does cortisol block the formation of T3, but it promotes the production of reverse T3. Reverse T3 is the active T3’s evil twin. It binds to receptors in our cells, but does not promote the chemical reactions we need to maintain a healthy metabolism.

There were no references for these above two statements; however, I found some vaguely supporting evidence in the following studies:
The effects of stress on gastric ulceration, T3, T4, reverse T3 and cortisol in neonatal foals
Effect of a single dose of glucocorticoid on the diurnal variations of TSH, thyroxine, 3,5,3'-triiodothyronine, 3,3'5'-triiodothyronine and cortisol in normal men



The National Academy of Hypothyroidism (headed by Kent Holtorf MD, David Brownstein MD, Denis Wilson MD, Michael Freidman ND, and Mary Shomon) makes the same claim:

The increased cortisol levels seen with stress also contribute to physiologic disconnect between the TSH and peripheral tissue T3 levels. This stress induced reduced tissue T3 level and increased reverse T3 results in tissue hypothyroidism and potential weight gain, fatigue, and depression. This vicious cycle of weight gain, fatigue, and depression that is associated with stress can be prevented with supplementation with timed-released T3 but not T4.

Over the years, hundreds of patients have arrived at TPA www.tpauk.com after being given a diagnosis of CFS/ME who were told by their GP they could help them no more - other than informing them they should do pacing exercises. They were left to continue suffering quite unnecessarily. Many of these CFS/ME patients were found to be suffering from one (or more) of the many associated conditions that stop thyroid hormone from being properly utilised in the body and brain where it does its work - and many regained their optimal health when they were given a trial of the active thyroid hormone triiodothyronine (T3).

@Campainger, regarding the quote in bold above: do you know if www.tpauk.com were able to demonstrate that these ME/CFS patients had conditions that stop thyroid hormone from being properly utilized? For example, did the patients have lab results showing high reverse T3, which blocks the effect of T3?

I would like to see some case histories of these ME/CFS patients who improved when given T3, with their thyroid hormone and cortisol lab reports indicating that they had high reverse T3.

Would you know of any other conditions that stop thyroid hormone from being properly utilized, in addition to high reverse T3?




Miscellaneous Info

• Reference ranges for thyroid hormones.

• Reference ranges for hypothyroidism due to high reverse T3 — Dr Kent Holtorf says: "a Reverse T3 level above 150 -- or a Free T3/Reverse T3 ratio that exceeds .2 [when the Free T3 is measured in picograms per milliliter (pg/mL)] -- may indicate hypothyroidism." Source: here.

• Genova Diagnostics "Thyroid Plus" Test (TSH ,TT4, FT3, FT4, Reverse T3, Anti-TG, Anti-TPO).
• Genova Diagnostics "Adrenal Stress Profile" Test.
• Genova Diagnostics "Comprehensive Adrenal Stress Profile" Test.
• Genova Diagnostics "Cortisol Awakening Response" Test (5 saliva samples in 1st hour after waking).

Note: using the Thyroid UK site, you can get a Genova Diagnostics test done without needing to go through you doctor. See the bottom of this page.

• T3 (triiodothyronine) can be used therapeutically as an effective add-on to antidepressants such as SSRIs in cases of refractory depression: see here.