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

[Campainger]

@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??.[/quote]
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Some patients had lab results showing high levels of reverse T3. Some did their own calculation. See 'Patients Stories' in 'Treasure Chest' www.tpauk.com
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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.
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You can find some such stories in our website under 'Patients Stories' HERE
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Would you know of any other conditions that stop thyroid hormone from being properly utilized, in addition to high reverse T3?
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The main conditions that stop thyroid hormone from working are as follows - and there may be others: For more detail see HERE

1. Thyroxine dose is too low.
Often this is the case, and the doctor won’t increase it, since the blood levels appear okay. Sometimes,the dose of T4 is quite high – 200 mcg – 300 mcg – but you still don’t feel well.

2. Partial response to the single synthetic thyroxine replacement.
Your thyroid produces 4 other hormones apart from thyroxine, and most of us need them all. Without them our response is limited and synthetic T4 may not suit the system as well as the natural thyroid hormones.

3. Adrenal fatigue or exhaustion.
The production of T4, its conversion to T3, and the receptor uptake requires a normal amount of adrenal hormones, notably cortisone. (Excess cortisone can shut production down, however).

4. Failure of the 5 de-iodinase enzyme.
This is what happens if the adrenals are not responding properly, and provision of cortisone usually switches it on again.

5. Receptor resistance.
Being hypothyroid for some considerable time may mean the biochemical mechanisms which permit the binding of T3 to the receptors is downgraded; the T3 just won’t go in.

6. Food allergies.
e.g. allergy to gluten, the protein fraction of wheat. The antibody generated by the body, by a process of molecular mimicry, cross reacts with the thyroperoxidase enzyme, (which makes thyroxine) and shuts it down. So allergy to bread can make you hypothyroid.

7. Presence of systemic candidiasis.
This is where candida albicans, a yeast, which causes skin infections almost anywhere in the body, invades the lining of the lower part of the small intestine and the large intestine.

8. Hormone imbalances.
The whole of the endocrine system is linked; each part of it needs the other parts to be operating normally to work properly.

9. Low Levels of Specific Nutrients
Iron, transferrin saturation%, ferritin, vitamin B12, vitasmin D3, magnesium, folate, copper and zinc.
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Some people are calling this state Reverse T3 dominance, or Wilson's Syndrome. Though this is a controversial concept with little evidence behind it.
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Here is a bit more information regarding ReverseT3 dominance:
http://tpauk.com/forum/content.php?799-THYROID-HORMONE-RESISTANCE-RT3
http://tpauk.com/forum/content.php?737-Reverse-T3-and-Reverse-T3-Dominance
http://tpauk.com/forum/content.php?736-What-Should-We-Do-About-rT3
http://tpauk.com/forum/content.php?735-How-To-Calculate-Your-Level-Of-Reverse-T3
http://tpauk.com/forum/content.php?503-Do-you-Have-Tissue-Resistance-To-Thyroid-Hormones

 

[poppythecat]

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?

Are you a Facebook user? There are some excellent groups on there where you can post your results and people will start helping you. You could post them here and I would be happy to take a look, but remember I AM NOT A DOCTOR, just a patient who finally found out what was wrong with her and started getter proper treatment. I'm learning to interpret results. It's not that hard. Symptoms are a big clue - and if you look on any ME website and then any thyroid or adrenal website you will see the symptoms are the same. Hypothyroidism is one of the few (if not the only) illness where doctors ignore symptoms. Hypoadrenalism does not exist in the eyes of the NHS - but do you not find it odd that even Jonathan Edwards here knows that treating ME patients with hydrocortisone helps improve some of them? There is a simple test you can order to check your cortisol levels. It's called the saliva cortisol test and I ordered mine from Genova UK. It tests your cortisol levels at 4 points in the day. It's never wise to rush in and treat yourself with HC without getting the test done. The problem is that you can have high cortisol, low cortisol or mixed. Symptoms can be very similar, and fairly obviously I guess treating high cortisol with HC will make you worse. Testing is always the key and the clues are always therel

 

[Jonathan Edwards]

Are you a Facebook user? There are some excellent groups on there where you can post your results and people will start helping you. You could post them here and I would be happy to take a look, but remember I AM NOT A DOCTOR, just a patient who finally found out what was wrong with her and started getter proper treatment. I'm learning to interpret results. It's not that hard. Symptoms are a big clue - and if you look on any ME website and then any thyroid or adrenal website you will see the symptoms are the same. Hypothyroidism is one of the few (if not the only) illness where doctors ignore symptoms. Hypoadrenalism does not exist in the eyes of the NHS - but do you not find it odd that even Jonathan Edwards here knows that treating ME patients with hydrocortisone helps improve some of them? There is a simple test you can order to check your cortisol levels. It's called the saliva cortisol test and I ordered mine from Genova UK. It tests your cortisol levels at 4 points in the day. It's never wise to rush in and treat yourself with HC without getting the test done. The problem is that you can have high cortisol, low cortisol or mixed. Symptoms can be very similar, and fairly obviously I guess treating high cortisol with HC will make you worse. Testing is always the key and the clues are always therel

Sorry poppythecat, but please do not misquote. I have said nothing about treating ME with steroids, just people in general. And the NHS is very aware of the problem of hypoadrenalism - when it actually exists. I would not rely on salivary cortisol levels. As you know I AM a doctor and your suggestions look to me to be potentially misleading and perhaps even harmful. I do not want to labour this but I do wonder if this family would have got into the fine mess they are in if we had fewer suggestions of this type. It gives me the heebie-jeebies that anyone should make them to be honest.

 

[justy]

Reassessing the reliability of the salivary cortisol assay for the diagnosis of Cushing syndrome.

http://www.ncbi.nlm.nih.gov/pubmed/24065452

 

[Jonathan Edwards]

That's in the Cushing's context , Justy, and presumably hospital services, where they have carefully done matched samples. I am not an endocrinologist but I would not put much faith in a private clinic looking at saliva to be honest.

 

[justy]

That's in the Cushing's context , Justy, and presumably hospital services, where they have carefully done matched samples. I am not an endocrinologist but I would not put much faith in a private clinic looking at saliva to be honest.

Yes I understand it is specifically for cushings diagnosis, my point is that their is a wealth of evidence to suggest salivary cortisol testing IS a reliable marker of cortisol levels.

I'm not commenting on the testing done at specific labs, more on the idea put forward that salivary testing is unreliable.

 

[barbc56]

@justy

If I interpreted this study correctly, the saliva testing was only reliable at night and for patients who already have a diagnosis of Cushing's syndrome.

Barb

ETA crossed posted with Dr. Edwards and corrected misspelled words.

 

[justy]

@justy

If I interpreted this study correctly, the saliva testing was only reliable at night and for patients who already have a diagnosis of Cushing's syndrome.

Barb

ETA crossed posted with Dr. Edwards and corrected misspelled words.

surely a measurement of something is a measurement of something regardless of the diagnosis.

 

[barbc56]

surely a measurement of something is a measurement of something regardless of the diagnosis.

I would think a test that isn't sensitive or specific would only pick up readings where there is a large discrepancy between normal and the actual blood level. I'm not sure which term specificity or sensitivity would apply or even if they do as I am only speculating and need to refresh my memory about the difference between the two terms.

Barb

 

[MeSci]

I would think a test that isn't sensitive or specific would only pick up readings where there is a large discrepancy between normal and the actual blood level. I'm not sure which term specificity or sensitivity would apply or even if they do as I am only speculating and need to refresh my memory about the difference between the two terms.

Barb

Specificity is the ability to differentiate the thing you are looking for from other possible causes of a positive result - to minimise false positives.
Sensitivity is the ability to find as many positive results as possible - to minimise false negatives, and avoid missing cases of what you are looking for.

Something like that anyway! (It's late and past my bedtime.)

 

[barbc56]

Specificity is the ability to differentiate the thing you are looking for from other possible causes of a positive result - to minimise false positives.
Sensitivity is the ability to find as many positive results as possible - to minimise false negatives, and avoid missing cases of what you are looking for.

Something like that anyway! (It's late and past my bedtime.)

Thanks for that. It's not even close to my bedtime yet so I don't have that excuse. Any help I can get is much appreciated.

Barb

 

[somatoform]

I would not rely on salivary cortisol levels..

Could you please explain why not and do you think the short synacthen test is more reliable.
Thank you

 

[Hip]

@Campainger, @somatoform, @poppythecat
Thanks for your replies.

The first thing I am going to do is attempt to reproduce my results, where taking triiodothyronine (T3) lead to a period of high energy. If I can reproduce these results, I will then take that comprehensive thyroid test from Genova Diagnostics that measures reverse T3 and other thyroid parameters.

However, even if I can reproduce my results, I am not sure that this necessarily implies that I have hypothyroidism, or "tissue hypothyroidism" (as someone has called the state where reverse T3 is high), unless my thyroid test showed I had significantly higher reverse T3.

Dave Whitlock has hypothesized that ME/CFS is underpinned by low basal levels of nitric oxide (NO), which he says will result in low mitochondrial numbers, because NO is a major driver of mitochondria biogenesis.† Since T3 is another major driver of mitochondria biogenesis, one might assume that T3 supplementation at supra-physiological levels might correct any down-regulated mitochondrial biogenesis due to low NO.

In short: from the Whitlock perspective, perhaps an ME/CFS patient would not have to be suffering from hypothyroidism in order to see benefits from T3. If ME/CFS involves low mitochondrial numbers, then taking extra T3 may well help, even if you are not hypothyroid.


I found the Whitlock hypothesis interesting: it would be quite elegant if both hypothyroidism and ME/CFS were largely due to down-regulated mitochondrial biogenesis, but from different causes — from low T3 in the case of former, and low NO in the case of latter.

A rat study found low mitochondrial numbers in the hypothyroid state.† However, I don't know of any study that has measured mitochondrial numbers in the cells of ME/CFS patients. Perhaps such a study would be a worthwhile undertaking, as it would either help confirm or refute the Whitlock hypothesis.

 

[Jonathan Edwards]

surely a measurement of something is a measurement of something regardless of the diagnosis.

I am afraid it is a lot more complicated than that, Justy. In Cushing's levels are high. The worry we have is that a salivary test may read 'low' in someone who actually has healthy levels. I am not an endocrinologist but some of the test results (in general) that have been posted here appear to be from labs whose way of expressing results looks wrong to me even in general undergraduate biochemical terms. There are big commercial pressures for independent labs to find 'abnormalities' where they do not exist I suspect.

 

[Campainger]

Reassessing the reliability of the salivary cortisol assay for the diagnosis of Cushing syndrome.

http://www.ncbi.nlm.nih.gov/pubmed/24065452

Perhaps the following might help also:

Refusal to Recognise Adrenal Fatigue by mainstream doctors http://tpauk.com/forum/content.php?1413-Doctors-refusal-to-recognise-adrenal-fatigue-(hypoadrenia)

Salivary Hormone Testing – The Evidence - http://tpauk.com/forum/content.php?716-Saliva-Hormone-Testing-–-The-Evidence

NHS Cortison Blood Test – v – 24 Hour Salivary Adrenal Stess Profile http://tpauk.com/forum/content.php?244-NHS-Cortisol-Blood-Test-Versus-24-Hour-Adrenal-Salivary-Index-(ASI)

 

[Campainger]

Well the two advocates are really annoyed with me. A lot of people on the thyroid forum are annoyed. Other than that I just don't know.

(http://forums.phoenixrising.me/inde...lgium-doctor-after-failed-by-nhs.32918/page-3)
Why am I angry Kina? Because of your refusal to listen to anything anybody else has to say on this matter that is outside of your own beliefs. I am angry because you treat your members very badly and insult their intelligence.

I am angry because you write: “We all know that ME is not a illness caused by hormone deficiencies which is what this child is said to have”

I am angry because NOT ALL THOSE GIVEN A DIAGNOSIS OF ME have the same condition as others who have been given a diagnosis of ME, and it is a FACT that many have been given a diagnosis of ME that ARE suffering with hormone deficiencies. Everything is not as black and white as you try to make us all believe.

Many doctors give a diagnosis of ME/CFS quite wrongly. Many such patients have regained normal health after years of being diagnosed with ME once their metabolic condition has been properly recognised and treated with whatever hormone their body is lacking. We know they arrive at our thyroid forum on a daily basis. By giving a diagnosis of ME/CFS such patients are being denied access to a treatment that may well help them regain their optimal health. So, they are destined to a life of suffering.

Many doctors are careless in giving a diagnosis of ME. This is, more often than not, a cop-out from them having to do further investigations and testing. These doctors should remind themselves of “The Duties of a Doctor Registered with the GMC “– here in the UK at least) and take it upon themselves to find the true cause of their patients suffering, and treat them appropriately.

Whether you want to believe it or not, the majority of folk registering to join our forum do so because they have been left to a life of suffering with nobody out there even offering to help them. Once most of these patients were thoroughly tested (serum, salivary and urine)for hormone deficiencies and other associated conditions that go along with their symptoms and signs, and the true cause of their suffering was brought to light, many have found, and are finding, their optimal health returning.

It does appear that to date, nobody, as yet, knows how to treat it ME/CFS. It is well known that hormone treatment helps a large number of such sufferers – but which came first, as this is clearly a ‘chicken and the egg’ situation

Thyroid organisations will tell you that ME/CFS are symptoms of low thyroid and/or low cortisol levels. If one gland is out of kilter, the rest of the glands are too. All the glands throughout the body act as one great Orchestra - the adrenal glands being the Conductor of that Orchestra. Once the hormone deficiencies are found and the patients treated with whatever hormone deficiencies they are suffering, the majority get better.

On the other hand, there is the second school of thought of those who believe that those diagnosed with ME have ‘symptoms’ of low thyroid and adrenal fatigue and that these deficiencies are a CAUSE of ME. Problem is - are these doctors giving their patients a trial of supplementing the hormone their body is deficient in? If not – WHY not?

If you have been diagnosed with ME/CFS, has your doctor suggested giving you have a full thyroid function test done that includes TSH, fT4, fT3 or have you been tested to see if you have antibodies to your thyroid TPOAb - t his test especially if you have members in your family who have a thyroid or autoimmune disorder. Do ME/CFS specialists know of the association between low levels of specific hormones and that condition? Do they know how to interpret the results, rather than believing that if results are returned anywhere within the TFT reference range, their patient does not have a thyroid problem. Do they know that the symptoms of hypothyroidism, low adrenal reserve ME/CFS are more or less, exactly the same?

Why do ME/CFS specialists favour the NHS testing for adrenal function over the 24 hour adrenal stress profile – when there is much evidence showing the latter test to be the best? I gave links about this topic the other day, but they were not commented on by the specialists in this field. Why? The fact is that the NHS short Synacthen test is given to help diagnose Addison’s disease (too little to no hormone secretion) or Cushing’s Syndrome (too high a level of cortisol secretion) and does NOT check for Adrenal Fatigue. If the patient is not found to be suffering with Addison’s or Cushing’s, the patient is sent on their way.

There is much research that show how dangerous it can be for a patient when their adrenal fatigue goes unrecognised – and therefore, untreated. Such a condition MUST be corrected.

The consequences of unrecognised hypothyroidism and adrenal fatigue are becoming recognised at last as very serious conditions by those in the caring industry, and it is about time

Yes, many people DO believe that ME is a made up diagnosis, and for a lot of patients, this is the case – and for a lot of doctors, giving such a diagnosis removes any responsibility for the care of such patients outside of his/her hands, so the patient is denied getting the treatment they need.

Perhaps if the views from thyroid, adrenal, ME, CFS forums could be discussed sensibly and seriously, we might actually find some answers.

Until that happens, all we can do is to help those that the medical profession are leaving to suffer so unnecessarily, in the best way that we can.

 

[Hip]

@Campainger

I think your anger would soon turn into sympathy if you read a little more about the history and background of ME/CFS, and the fact that in much of the medical profession, this awful disease is often trivialized and discounted.

Did you know that ME/CFS patients are often told by their doctors that their disease is "all in their mind", and that ME/CFS is is just a psychological condition, not a real physically-caused disease? Are you aware of this? This is fundamentally important to know, if you are taking an interest in ME/CFS.

The reason this mother's daughter was placed in a psychiatric institution rather than an ME/CFS clinic will almost certainly be due to her doctor's (erroneous) view that ME/CFS as a psychological condition, rather than a real physical disease. Because of this erroneous view, ME/CFS patients may be incorrectly placed in a mental institution, rather than being given the appropriate care for a devastating disease. This amounts to serious abuse by the medical profession of ME/CFS patients.

This psychological view of ME/CFS was developed by certain psychiatrists (who are referred to as the "Wessely School"), and these idiotic psychiatrists say that ME/CFS is caused by a patient's own beliefs. These quack psychiatrists put forward the idea that in ME/CFS, patients start to believe that they are ill, and it is merely this belief that they are ill which maintains the ME/CFS state. In other words, they think all we have to do is "snap out of it", and somehow our disease will disappear. The term these psychiatrists often use is "psychosomatic", which is defined as "physical symptoms caused by a mental condition or mental state".

This view is incredibly insulting to ME/CFS patients. In spite of the fact that that many ME/CFS patients are so ill they remain housebound or bedbound for most of the time, these Wessely School psychiatrists say that ME/CFS does not exist as a physical disease, because it is all in the mind. Many NHS GPs think this too.

Because these moronic psychiatrists and psychologists have convinced many in the medical profession to believe that ME/CFS does not exist as a biologically-caused disease, ME/CFS patients now understandably react furiously when they hear the suggestion that "ME/CFS does not exist".

After all the abuse we get from the medical profession, this is the worse thing you can say to a ME/CFS patient. ME/CFS patients have been fighting for decades to have their illness taken seriously, and have been fighting tooth and nail against the erroneous ideas that ME/CFS does not exist as biologically-caused disease.

So now that that you know a little bit about the background and history of ME/CFS, and the fact that ME/CFS patients have been — and still are — treated appallingly by many medical professionals, you may want to question the wisdom of suggesting that "ME/CFS does not exist".



As for the idea that even genuine ME/CFS is just an untreated hormonal condition, well, on this forum, there is a regular stream of "messiah" types that arrive here claiming they have the miraculous answer and cure to ME/CFS. All these people have different explanation as to the cause of ME/CFS, and often say that members of this forum are "too closed minded to see the truth" about their particular cure.

But in fact members here have tried pretty much every approach and medication for ME/CFS over the years, including hormones, so we know roughly what helps and what does not. In fact, in my experience, members of this forum are extremely open minded about trying new treatments. But in addition, many members have become adept at spotting medical quackery at 100 paces.

So when one member of the tpauk.com thyroid forum wrote:

"I'll guarantee that every single one of the members of that forum, man, woman and child has endocrine problems of some kind (from a multitude of causes). They do not, have not and never had ME. It doesn't exist. It is a meaningless term for an illness that could and should be properly dignosed and treated."

that is a prime example of quackery. I can appreciate that this person, whoever they were, may have good intentions, and may genuinely want to help ME/CFS patients. But they need to learn a little bit more about ME/CFS — as well as immunology and neurology in general — otherwise they will end up blurting out these sort of quack statements.



But many of the things you wrote in your above post I very much agree with, especially about some doctors being careless in giving a diagnosis of ME/CFS.

There may be a percentage of patients diagnosed with ME/CFS who in fact simply have hypothyroidism, and even the standard NHS thyroid test would show this. Though be aware that hypothyroidism is not the only condition that gets misdiagnosed as ME/CFS: anemia, celiac disease, hepatitis B or C, lupus, and Lyme disease all have very similar symptoms to ME/CFS, and can get misdiagnosed as ME/CFS.

Do you know that Esther Rantzen's daughter, Rebecca Wilcox was misdiagnosed with ME/CFS for 14 years, but later found she in fact had celiac disease, for which there is a simple treatment: gluten avoidance. So she spent all that time in a wheelchair for nothing.

A good doctor will test you for all the above diseases with similar symptoms before settling on a ME/CFS diagnosis. You cannot reliably diagnose ME/CFS without first excluding all these conditions. ME/CFS is supposed to be a diagnoses of exclusion — ie, you test for and rule out these other symptomatically similar conditions before you make a ME/CFS diagnosis.



Now, as for you claim that some patients diagnosed with ME/CFS, and who are negative on the standard TSH & T4 thyroid test, may actually have "tissue hypothyroidism" due to high reverse T3 levels, well, that's an interesting idea. I had a look on the tpauk.com thyroid forum for data or anecdotal accounts of this, but could not find much. Certainly there is little in the way of published scientific studies of about this tissue hypothyroidism, but it is an interesting concept. And people have explored this avenue on this forum (see here).

Thyroid hormones are not the only ones that ME/CFS patients use or have tried. Other hormones used by ME/CFS patients include: DHEA, low dose hydrocortisone, progesterone, melatonin, and aldosterone (aldosterone replacement is achieved by taking fludrocortisone).

And indeed, there are some well-known ME/CFS doctors who focus on treating any hormonal deficiencies, such as Dr Joseph Garabedian, Dr Alan Weiss, Dr Kent Holtorf and Dr Jacob Teitelbaum.

However, even if taking these hormones improves ME/CFS symptoms, this does not mean that ME/CFS is merely a hormone deficiency disease. Anyone with even a modicum of medical knowledge about ME/CFS knows that there are multiple abnormalities found in ME/CFS, including in the immune system, brain, autonomic system, stomach, intestines, HPA axis, and muscles. No hormonal deficiency can cause all that, and no hormonal replacement therapy can fix all that.

You have heard the expression that if all you have is a hammer, everything looks like a nail. Well, if someone's only biochemical knowledge is hormones, they may see everything as an endocrine problem. So it's a good idea to have more than just a hammer in your toolbox.

Indeed, adrenal fatigue proponents may well learn a thing or two from expanding their perspective and their toolbox. For example, as you may know, many people develop ME/CFS after viral infection. Two viruses strongly linked to the development of ME/CFS are echovirus and coxsackievirus B. Now, did you know that echovirus can infect the adrenal glands?†

So one might hypothesize that a chronic low-level echovirus infection of adrenal cortex and/or the adrenal medulla might adversely affect the functioning of these glands, leading to hormonal abnormalities. If adrenal fatigue is a real medical problem as its proponents suggest, then the fundamental cause of adrenal fatigue needs to be investigated; it may well turn out to be an ongoing viral infection in the adrenal glands. So then to treat adrenal fatigue at its root cause, you might actually want to treat the underlying viral infection, rather than use replacement hormones.

Incidentally, type 1 diabetes has also been linked to pancreas infection with echovirus and coxsackievirus B, and it may be that these viruses play a role in the failure of the pancreas to secrete sufficient insulin. If so, one day antiviral drugs may become the standard treatment for diabetes, rather than insulin replacement.

Notice that I use words like "may" and "might". I don't state something as a scientifically proven fact, when it is only a possibility. This because there is no incontrovertible proof that these viruses cause type 1 diabetes, just a possibility that they might. Same applies to my speculation about echovirus and adrenal fatigue. It's a possibility, not a fact.



By the way, you say "there is much research that show how dangerous it can be for a patient when their adrenal fatigue goes unrecognised – and therefore, untreated."

Could you point me to this research.

 

[barbc56]

I can only relate my experience, but I was severely hypothyroid (and at one time hyperthyroid). While the symptoms were similar, there was a subtle difference. However, I can see how they can be easily confused.

I was put on synthroid, and am checked every three months as I've had to have the levels frequently upped. Probably more than most people.

The synthroid has helped with the symptoms but it's relative as I still have me/cfs/fm.

I wonder how many people who are hypothyroid but are diagnosed with me/cfs because the doctor is inexperienced or not really listening to the patient and just throws the patient into the wastebasket diagnosis of me/cfs. This type of doctor might not even check for thyroid problems.

It could also go the other way where the doctor does not go beyond a diagnosis of a thyroid disorder.

This is very different than saying me/cfs doesn't exist.

Barb

 

[Gingergrrl]

@Campainger

I have Hashimoto's disease and have an excellent and extremely thorough Endo who got all my thyroid hormones into the correct ranges very quickly and I remain on only a low dose of thyroid hormone. I have been thoroughly checked for adrenal issues including blood, saliva, urine tests for cortisol and an ACTH stim test while in the hospital (and my cortisol levels are normal.)

None of this changes the fact that I have ME/CFS which began with a severe case of Mono from the EBV virus. I have very high EBV titers now 2.5 years after mono including IgM and early antigen which are signs of active infection. I also have severe autonomic issues and my heart rate and blood pressure no longer regulate properly. I have severe fatigue, PEM, and my body lacks the ability to create energy on demand. I meet the CCC and ICC criteria for CFS which is separate from the fact that I have co-morbid Hashimoto's disease.

Yes there are people all over the world, and it appears especially in the UK, who are given an incorrect diagnosis of ME when in fact they have a hormonal problem. But that is very different from saying that ME/CFS does not exist. I have not read this entire thread but the part I did read, you were very disrespectful to Kina and completely minimized and negated the suffering of millions of ME/CFS patients around the world.

 

[Countrygirl]

This thread, in places, is starting to generate more heat than light.

Campainger has told me that she has masses of sympathy (probably more than most) for people with ME who have been treated ‘so wickedly by the Wessely idiots who have caused so much grief for so many and who continue to do so’. Thousands of people have joined her forum exactly and solely because they have been given a diagnosis of ME. They have been sent packing by their GPs after being told ‘it is all in your head’ or that they are suffering from a ‘functional somatoform disorder’. The aim of the TPA forum over the past ten years has been to provide support for the people whose lives have been devastated both by a debilitating disease and the medical negligence to which they have been subjected. The forum has managed to direct many to successful treatment and enabled them to regain their lives.

Camapainger’s case, she tells me, was a little different as she was originally diagnosed with hypothyroidism and was given levothyroxine (T4). It did nothing for her at all and she remained ill and eventually she became wheelchair bound. She says everything in her body felt as if it was closing down. At this point she was given a diagnosis of ME and told by her doctor that she was stuck with the illness and nothing could be done. Eventually, she gave up on the NHS and sought the help of a private hormone specialist. He found she was not converting T4 to active T3 and started her on a course of desiccated porcine thyroid extract and after only a few days she started to experience a dramatic improvement. This has been maintained over the past eight years she has been in excellent health as long as she takes the thyroid extract.

As a result of her experiences she became the administrator of TPA and she tells me that hundreds of patients who joined with a diagnosis of ME, a number of whom were severely ill and bedbound, have visited doctors who understand this problem (non-NHS of course) and have been restored to full health and able to return to full time work and a normal life. These ex-‘ME’ patients have learned that thyroid function test results will only give a diagnosis for primary hypothyroidism. They ‘do not test thyroid function for low t3 syndrome or T4 conversion block, or euthyroid hypometabolism’ and it is these patients who are labelled with CFS or ME by their doctors. I wonder how many on PR could regain their lives if they at least explored this route if only to exclude this as their problem? The NHS for sure won’t do this for us.

I have spent a little time exploring the TPA forum and, from what I have read, I can understand why some might think that ME or CFS doesn’t exist. (They would be right about Oxford-defined CFS as that must surely always be a misdiagnosis?) For all of them (I think I am correct in saying ‘all’) their ME or CFS really did not exist. However, to be clear here, Campaigner has NEVER said this nor claimed that ME is not a separate illness to endocrine disorders.

Given how many people have been improved or cured as a result of joining that forum after being given a (mis) diagnosis of ME, I think it could benefit some of our members here to at least explore the information that is posted there in case some may be fortunate and discover that they are a mis-diagnosed thyroid patient. We should not be at each others’ throats but co-operating, surely. They need to know that ME DOES exist for millions and is only sometimes a mis-diagnosis of endocrine dysfunction while some of us may benefit from their advice and experience.

C.G.


For those of you who would like to read the patients’ stories go here:

http://tpauk.com/forum/list.php?category/339-Patients-Stories

Go here http://tpauk.com/forum/content.php?459-200-reasons-why-patients-join-the-TPA-forum to find a one, or two lined reason why people felt the need to join the TPA forum. Scroll through these and see how many had been given a diagnosis of ME or CFS and remained ill with no hope.

I recall Hip wanted to learn more about the dangers of unrecognised and untreated adrenal fatigue. See here: http://tpauk.com/forum/list.php?category/409-Adrenals


I hear that there is some news probably coming through shortly about the case……………….