This video here explains what some people think happened to cause illness in Lake Tahoe where there was an ME/CFS epidemic in the 80s. I just asked Erik who had the ME illness if people there tested their thyroids and he came back and said: " Yes. Of course there was great debate over whether the testing was properly done and/or medication adequately prescribed.
Of those who aggressively pursued this avenue, we did not see any significant improvement, so it did not lead to anything."
Could there be a reason why so many people who tried thyroxine, some aggresively, did not improve significantly? Or is ME/CFS a new disease?
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No. WHy would it be? The video does not show embedded here. But you get the idea/ An ME epidemic. Hundreds fall ill. They try everything including thyroid treatment I think. But it did not significantly heal them. So either ME/CFS is a new illness or there is some reason they did not improve on thyroid. The two conditions are so similar though.
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not at all, sorry Smorzando, i'm just out of my depth with the interweb, and scared that anything i click on but dont understand will make my computer disappear in a puff of smoke
You appear to have copied a link from another post.
Trouble is, if you just right-click, Copy, and then Paste you do not copy the link - what you have there ends with "..." rather than the rest of the link.
I have no idea what link you wanted to post so cannot correct it.
Let me explain without the video. There was an epidemic of ME/CFS in Lake Tahoe, Nevada, in the 80s. Many people including a batch of school teachers got a mysterious chronic illness that the CDC investigated and decided to call CFS. That's where we all get the new name for ME from. I wrote to one of the survivors a few weeks ago and asked him some questions. Some people apparently who were severely ill with ME/CFS improved dramatically on an immune modulating drug (AMpligen). SOme have recovered by now and some still are unwell or have symptoms. The symptoms were neurological, fatigue and pain etc so typical ME/CFS with normal blood results. I asked him if they had tried thyroxine and he said yes they did and there was a debate about it whether they were getting tested properly and if they were being medicated enough. He then said those who medicated aggressively showed not much clinical improvement so it did not lead to anything.
So this is my question. Can they still be hypothyroid or is ME/CFS a new mystery illness still to be explained? Why would some people dramatically improve on an immune modulating drug if they were just hypothyroid? Hope this makes sense now. Surely if lots of people were treated with thyroxine at least some would have improved or recovered? NO?
Not sure why you're telling me this. I just posted the video link. I haven't watched it all through. But, to be perfectly honest, I don't see how it can be either hypothyroidism or ME/CFS because neither are contagious, so how can you have an epidemic. Far more likely to be something like EBV.
But, I will say that the fact that taking levo didn't help people proves nothing. Because, as we all know, very few doctors know how to treat hypo correctly. What was meant by 'medicating aggressively'? Without knowing a hell of a lot more details about dosing, testing, etc. I really couldn't comment further, I'm afraid.
greygoose Sorry but I a afraid you are wrong that ME/CFS does not happen in epidemic form. It does and has. There have actually been many ME epidemics throughout the last century including the Royal Free Hospital outbreak in 1955 in London where many doctors and nurses became ill at the same time and this is where we got the name ME from. I agree hypothyroidism is not contagious but it seems ME might actually well be. Well it is. You can also get ME/CFS in sporadic form like I did on my own. The Lake Tahoe epidemic was NOT EBV. Interestingly some people had reactivated EBV and at first they THOUGHT it was chronic EBV. But lots were EBV negative yet they still had the chronic illness.
In that case, doctors ought to just admit that they don't understand ME and have no idea what it is. If it's contagious, it must be viral or caused by bacteria. But, as far as I know, they aren't even researching in that direction. What I don't understand is why you've posted about this on a thyroid forum, because you obviously don't believe there's any connection.
Well I am investigating my ME/CFS and I see that some people with a diagnosis of ME/CFS have improved with thyroid treatment. Yes, obviously ME/CFS is caused by or because of a virus. WHy do some viruses cause epidemic ME and covid19 say does not? Also I posted as symptoms of ME/CFS are almost the same if not the same as hypothyroidism. As I said, I asked if they had tried thyroid treatment and they said they had. One guy swears he got better by avoiding toxic mold which was found in this place. But toxic mold could I guess wipe out a thyroid. Hence my posting.
According to A newspaper article in 1990 the test for CFS was found by LEvy, the guy who found the HIV virus and he said people with CFS have high natural killer cells and low suppressor cells in the white cells. So I am wondering whether the thyroid regulates the white cells or not/ DOes anybody know the answer to this question?
I would never trust a diagnosis of ME/CFS because doctors use it for their convenience. If they don't know what's wrong with the patient, they just call it CFS or Fibro to get rid of the patient.
yes I agree with you quite a bit. There is currently no test for CFS. The scientists have been looking for one for some time but so far nothing. I found this here though medicalxpress.com/news/2019...
ANyway, I have had a CFS diagnosis for more than 25 years. All thyroid test have been normal everytime, Even my FT3 and FT4 tests have been pretty normal range and TSH around 2 to 2.5. B12 as stated is 342 up to 663 so I bought B12 pills. I am waiting for an Exeter Lan thyroid £29 I purchased that Seaside Susie said to get. It should come tomorrow but last time I tried to prick my finger nothing happened, It did not pierce the skin.
SO that is why I posted this thread. There are people in an epidemic of ME who have been trying to get well for years. Doctors ther have checked everything they can. Did you watch the video?
I have just been out to the shop earlier on and when I got back I had the following symptoms 1) itchy feeling in different places including eye
2) tickly feeling in places
3) burning feeling
4) cold sensation like I need to shiver but don't much or do one time every now and then.
when I was ill early on in the disease, I used to not be able to stand up without feeling lightheaded or uncomfortable. I also used to get cognition problems made worse on concentrating for long periods (or short periods sometimes). I could not remember short term things much and had difficulty finding the right word to say mid sentence.
I tried thyrocine 100mcg and 20mcg T3 for 6 weeks but no symptom improvement so I quit,
Then one day 13 years ago, all my symptoms just seemed to gradually disappear including fatigue and I have been well until last month, I don't get these symptoms at the moment though except a little light headedness sometimes. mSymptoms vary from day to day. sometimes they are there, sometimes not. If I just lie about and don't exert energy, i feel not too bad. No fatigue. I had 2 days of fatigue but it has gone at the moment.
I just can't get a diagnosis. Only CFS. It has only ever been CFs
I always get nervous when doctors start talking about 'gold standard' tests. Because that is how they describe the TSH test. And, as we all know, that test is deeply flawed. For example, your result is in the so-called 'normal' TSH range, but there's nothing 'normal' about a TSH of over 2. It shows that your thyroid is struggling.
Even my FT3 and FT4 tests have been pretty normal range
Same goes for the FT3 and FT4. The ranges are usually too wide. Do you have the actual numbers for yours?
Have you had your antibodies tested? Or an ultrasound of your thyroid. What you're describing sounds a lot like Hashi's, to me. But, if you rely on the TSH test, you're never going to get a diagnosis for that.
Did you actually mean thyrocine? Or did you mean Thyroxine? Because thyrocine is not a thyroid hormone replacement. It's just a concoction of vitamins and minerals devised for body builders. So, if that's what you were taking, I wonder if you were also taking the body builder supplement T3 rather than the hormone. If you were, that would explain why they didn't help at all.
SOrry typo. I was taking T4 thyroxine with T3. My GP said last week that the antibody tests were ok. But he took that test ages ago when I was well. Nobody wants to test me anymore. I am stuck in the CFS waste paper basket. I don't work at the moment like I used to so I can not afford extortionate consultations and tests with private doctors. This is why I am waiting for the home thyroid test. I just hope it is as accurate as a hospital Lab,
Yes, and that is why so many of us rebel against the very idea of ME/CFS, because it is a waste paper basket diagnosis. It's so handy for the doctor. There's no test to prove that you do or don't have it, so it's just their word against yours. There's no proof, in fact, that it even exists. There's no treatment so they don't have to bother with you anymore, don't have to test you for anything else, don't have to do anything. They have, effectively, dropped you down the rubbish chute and forgotten all about you.
There's no reason why a home test shouldn't be accurate. It's a private company, but the blood testing is done in NHS labs. Mistakes can just as easily be made in tests ordered by your doctor as they can with a home test.
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