I found this here bristolmesupportgroup.wordp...
If you scroll down to endocrine abnormalities, it says something about the liver enzymes and Selenium and glutathione and some other deiodinase thing.
Can someone explain these and how to test for them? I think my liver test was OK the last one I had. DOes this test for these in a GP's standard liver enzyme test? I know I have Gilberts and slightly yellow tinge skin. Thanks
My own experience of life-long ME has taught me that the best way forward is not to try and understand all the theory, but to try and counter anything that may be wrong with me by a broad approach to getting healthy over all rather than focussing in on one or two aspects.
So I don't worry about all of the issues mentioned in that article. It's not like having a condition with one of two 'causes' that we can try and treat. Because there are so many, we could easily go around in circles trying to sort out one after another. No, while it is important to identify anything major such as hypothyroidism, diabetes etc, a broader approach is needed to deal with the myriad of 'lesser' symptoms.
So a healthy diet (and lifestyle) is essential. It is for example better to spend more on a healthy diet than money on what would be dozens (at least) of tests of try and deal with everything that is said to be a factor of ME. It's also less stressful.
At nearly 70, I have got myself as good as I have been in most of my life. Perhaps being retired, and not having so many years to endure, I have become less frantic about finding a 'cure', but I would still caution younger sufferers about chasing a cure based on something that they read in a medical paper, no matter where it comes from. A holistic approach has always been a better way back to good health. Just my two pennies worth.
Hi thanks. But the point of having ME/CFS is that you do NOT have hypothyroidism (or diabetes). That is how you get diagnosed. So how can you identify hypothyroidism when you are not supposed to have it lol?
It's true that is how they diagnose ME, but it doesn't mean that we don't have another factor involved, only that they have not detected it. My ME symptoms were noticeably lessened once I was diagnosed with hypothyroidism, or at least when it started to be treated properly.
In my experience, getting an ME diagnosis was counter-productive in that my GP then refused to consider any other possibility. I went another 12 years before the hypothyroidism was bad enough for him to take any notice (he didn't notice the obvious symptoms). I had the hypo symptoms for many years before the ME diagnosis.
But the point that I wanted to make was not to overly worry about "the liver enzymes and Selenium and glutathione and some other deiodinase thin". Rather concentrate on generally getting your gut etc healthy.
I replied to one of your earlier posts illustrating my own case. There are complex interdependencies between immunological function and endocrine function, the gut, the sympathetic and central nervous systems, and so on.
ME usually develops after a viral infection, but there are reasons why any individual may be susceptible to it, including underlying abnormalities in the systems I refer to. Once ME has developed, it may impact those underlying conditions in turn. This is rarely an 'either or' situation and we need to take a holistic view of any individual's health.
I suggest reading Dr Myhill's website for a comprehensive view of all this.
some other deiodinase thing
That bit is suggesting that hypothyroidism is a part of the known pathology behind CFS/ME.
The deioidinases are enzymes which convert thyroid hormones. E.g from T4 to T3.
You cannot directly test for these enzymes.
But when I first had ME/CFS, I tested my TSH T3 and T4 Ft3 FT4 and they w ere all in the normal range at least midway through or in the upper half of the range for FT3 anyway as I remember. Yet I still had symptoms. Work that out. lol
Possibly, the level appropriate for you is not the same as for others?
You just might find this article of interest and/or use re "normal range":
The normal range: it is not normal and it is not a range
Freely accessible here:
The normal range is just that a range. If the range was 10 - 25. for FT 4 I would be normal at 19. However at 19 I could feel very ill if my body's natural level was 13.
The normal range means that some people have levels at the very bottom of that range so your results of halfway and over mean nothing. They obviously were not normal for you.
So we can work that out lol.
A “normal pair of shoes is size 5”
Therefore everyone can wear a pair of size 5 shoes ?
Within range means nothing ...we need what we need for us
Frequently what a medic says is “normal” just means it’s within range
If you had low vitamin levels thyroid results would be questionable anyway
B12 range is typically 210-680
GP would say your B12 was “normal” if it was 212 or 620
Are you aware of the work of Dr Sarah Myhill, advisor to TUK? She has been treating ME patients for over thirty years and as a wealth of information on her website.
Like many functional doctors, she eschews the current protocol for thyroid testing and disagrees with the upper TSH reference range used within the UK. That means many ME/CFS patients are not being diagnosed with hypothyroidism, despite obvious symptoms. Dr Myhill has written numerous books about ME/CFS, which cover the whole gamut of problems associated with the condition and treatment options.
Glutathione is an important antioxidant, so vital for the clearance of toxins. The build-up of toxins in the body contributes to symptoms and needs to be addressed. Dr Myhill advocates Vitamin C to bowel tolerance and glutathione supplementation (under medical guidance). Having said this, Nutri Advanced sell N-acetyl cysteine (or NAC), which is the more bioavailable form of glutathione and this is over the counter. But.... I would caution taking such supplements before having been tested first.
In my case, genetic testing has shown that I have a specific polymorphism that results in an absence of glutathione, so I need to keep to the Vit C/NAC regimes for life.
It is possible to test for glutathione, but you are highly likely to have to become a patient of a functional doctor who can interpret the results. It's expensive going down this route (as I well know!) so you would need to consider this option carefully and weigh up the benefits.
I agree NAC is best to take for a glutathione deficiency.
Also know what you mean about the expense of finding out whether you have that deficiency. Ouch! To be fair, I did have a lot of other testing from Dr M at the same time.
Yes, definitely better to have a host of testing done; more economic.
I've queried the use of glutathione, rather than NAC, but Dr M seems to think it's ok. I'd rather keep to NAC, though, to be honest.
BTW I'm sad to learn that Acumen labs won't be continuing with testing from now on - we were thinking it might be an idea for me to have the translocutor protein tests to see what other nasties are causing the TL blockages, which is a particular problem.
I didn't know that! That's an awful shame - lockdown related? They provided tests that just aren't available elsewhere in the UK, and probably nowhere else either.
I had TL studies following a mitochondrial function profile. I don't seem able to do anything about the abnormalities in my results, but at least I have a better understanding of what is going wrong. Must dig them out again to check the details.
ME/CFS magically appeared as diagnosis shortly after thyroid testing , especially TSH test, were invented
As one endo once told me ...the tests only show you have thyroid hormones in your blood...testing doesn’t show if you can use them
Gilbert’s syndrome affects how liver works
Thyroid hormones have to be processed in liver
Possible that higher percentage of people with Gilbert’s syndrome struggle to process thyroid hormones correctly
meulengrachtforum.altervist...
why might Gilbert's people have more difficulty manufacturing thyroid hormones?
Not manufacturing thyroid hormones
....but a large percentage of Ft4 is converted into Ft3 in the liver
Ft4 is largely inert and has to be converted before we can use it. Mainly in liver, some in gut and a limited amount in cells
This is why I am angry. when I first got ill (I am mostly recovered now btw), the doctor mentioned Gilbert's as the only abnormality but said to me "not to worry, as Gilberts is just a faulty enzyme in your liver which just makes you have a higher bile circulating but it does not affect you in any way and is not dangerous." That is what my GP told me in 1992 when I first got the diagnosis PVFS (ME/CFS). SO I BELIEVED HIM because I was just 25 years old and could not understand why I was feeling all these symptoms and fatigue all the time. I could not understand it but again I was naive and I just belieeeeeeeeved the GP and infecious gastroenterologist who diagnosed me privately at a private hospital and referred by my GP. So, now even though I am mostly recovered, I am angry that Gilberts might be actually something which gives you hypothyroidism but then as I said, I HAD thyroid tests later on with Dr S and they were pretty much in the normal mid to upper range I think and I tried T4 100mcg and T3 20mcg for about one month or possibly 6 weeks and I thought my symptoms had not abated but Dr S said he thought I was looking a bit better but I did not feel it. So I quit on my GPs advice because the TSH was nearly zero and the GP kept going on about the negative feedback system and saying my thyroid is working perfectly. Again, I believeeeeeeed my new GP and quit. I tried B12 injections for fatigue but I did not feel it helped after a month or so if I remember correctly so again I quite that too.
See, so it is not easy to find out what is causing ME/CFS. Luckily I am mostly recovered as the b12 has worked this time round., It is the FIRST time in my life that I see a correlation with low B12 serum (342) and dissapearnace of symptoms taking 1000mcg.
But why did this not dissapear in the first place years ago then? This is what I don't understand. Everything was normal.
ME/CFS Epidemic Lake Tahoe
Results of test with a history of ME/CFS
Me/cfs/fm/underactive thyroid
ME/CFS Misdiagnosis on a grand scale?
