Hello
People with ME have a hallmark symptom which is the more exercise they do, the worse they can get. It can cause symptoms minutes or hours after the exercise. THen it is a matter of resting for hours to get back to feeling as they were before the exercise. My question is does this phenomenon happen to hypothyroid people? Do hypothyroid people get post exertional malaise? This will help me decide if Hypo and ME are two distinct illnesses or not. Thanks
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My question is does this phenomenon happen to hypothyroid people?
It can do. It really depends on how hypothyroid people are, whether they are untreated or under-treated, how damaged the adrenals are, how well they eat (I believe that regular starvation is common amongst female sufferers in particular, because so many hypothyroid people get fat), how deficient their nutrient levels are.
With every problem that can happen when suffering from hypothyroidism it also makes a difference how long the problem has been going on. Obviously the longer it goes on the more possible damage there is.
For many of us getting a diagnosis has been almost a life-long struggle. We've been disbelieved for decades in some cases.
Because so many people with hypothyroidism have fragile health for such a long time then it isn't outside the realms of possibility that a viral infection or accident or severe stress can cause permanent damage which never goes away and is then diagnosed by doctors as ME.
This is the diagnosis I had. ME. Well it was called Post Viral Fatigue SYndrome 28 years ago when I first fell ill. It was a sudden illness 3 months after recovering from a bad viral infection. I just woke up with extreme fatigue, my brain would not concentrate, it felt fuzzy, a little dizzy perhaps, and I could not stand up for long without feeling uncomfortable and lightheaded. All tests came back normal. But the thing is I tried thyroxine and T3 once for about 2 or 3 months but my symptoms remained so I quit.
Then I recovered suddenly 16 years later and was well for 13 years more or less. Now I have some metabolic symptoms called post exertional malaise and my head clouds up if I go walking too much or exercising too much. These are the only symptoms. I had a fatigue for one day and it went away. I also had night tremor which I still get sometimes. And that;s it. But the thyroid test is normal well 2.5 out of 4.2 top. BUt TSH changes all the time anyway doesn't it? I just got some B12 pills as my B12 looked a bit low 342 and 663 top.
I am sure ME has something to do with hypothyroidism but so far the whole world has not worked it out. EVeyrone is normal for thyroid LOL. So it is called ME, whatever ME is if it is different to hypo. MAybe it is?
There are people who can have a condition called Thyroid Hormone Resistance (THR). It leads to people having blood test results that doctors call "normal" but the active thyroid hormone (T3) isn't getting into the cells where it is supposed to do its job.
I'm not sure how THR is diagnosed. Perhaps DippyDame might be able to help.
Another problem that is rarely diagnosed in connection with thyroid is that T4, which is the main hormone produced by the thyroid, has to be converted to T3. T4 isn't an active hormone, it is only T3 that is. There are people with genetic issues whose bodies can't convert T4 to T3 very well, and they are effectively hypothyroid at the cell level.
There are various people who come to this forum wondering if they have a thyroid problem and they have been diagnosed with fibromyalgia. I think that quite a few people have fixed their fibromyalgia or who have reduced their symptoms substantially by following the suggestions that are mentioned on this forum.
Whether someone has a thyroid problem, fibromyalgia or ME, if the sufferer has very low levels of iron (for example) or vitamin B12 or folate or vitamin D or something else, then fixing that problem will benefit them, even if it doesn't cure them. But we do have occasional members who won't take this on board because their doctor has said their blood tests are "normal".
The problem with doctors saying that any test is "normal" is that what they actually mean is that the result is within the reference range. Sometimes they will say results are normal or fine even when they are out of range, as if they are saying "it's close enough".
But an example I have used many times is a ferritin (iron stores) test.
Imagine we have three patients A, B and C. They all have a ferritin test done and in each case the reference range is 13 - 150.
A : Result = 13
B : Result = 82 (i.e. approx mid-range)
C : Result = 150
In reality the person who is likely to feel best is patient B with the mid-range result. The person who is likely to feel worst is patient A with the lowest ferritin. But doctors will tell all three patients that their iron levels are "normal" because they are within the reference range. Some patients have even discovered that results which are a few points below range are referred to as normal as well, on the basis that "it's close enough". And doctors often ignore above range results for ferritin, at least until ferritin is 800+. This is despite the fact that high ferritin is possibly an indicator of inflammation or infection somewhere in the body.
Rant over! 
You might find these recent posts interesting re. possible PEM /Thyroid question ,and how different everybody is.
You will have to put them in 'search' , as i'm ashamed to say i still cant link to a post, sorry !
'Hypothyroidism and Hunger' by agyk from 2 months ago,
and possibly even ,
'Exercise and T3/T4' by Murphysmum from 20 days ago (although we do start talking about handbags in the middle for a while!)
I was diagnosed Autoimmune Hypo in 2003,got full treatment with Levo, felt somewhat better, but had remaining problems ie conking out in afternoon/ no energy left for a social life.
In 2007 i started having new and specific PEM, Gp said it couldn't be thyroid related as that was treated(but only with Levo, no offer to do an FT3 test ), and so at my request , i was sent to CFS/ME therapy, which (after the 2.5 yr waiting time ) i found to be largely unhelpful, in fact downright insulting really.
Are they different illnesses you ask ?
Good question..........
Hi Tatty
You will have to put them in 'search' , as i'm ashamed to say i still cant link to a post, sorry
It's quite easy - when you know how
Say you are on the page that post is on, i.e.
'Hypothyroidism and Hunger' by agyk from 2 months ago,
go to the address bar at the top which is
https: //healthunlocked.com /thyroiduk/posts /143144147 /hypothyroidism-and-hunger
(I've deliberately put spaces in so it wont do a link)
Just right click and copy the address. Paste it into your reply and it comes up as a link in blue:
healthunlocked.com/thyroidu...
When you click on the link it takes you to the page.
Ta dah!
Thank you so much SeasideSusie , for your excellent instructions And thank you too for writing them in 'Plain English' for me.
I will have a practice in the morning when i've put my brain in.
Tat xx
Ps. Did you read that yesterday somebody thought that 'Seaside Suzie' was the name of a vitamin supplement instead of a person 
I will now always imagine you as a little pot with arms and legs , rattling up and down along the prom 'shoo'ing off invading boats.
Ps. Did you read that yesterday somebody thought that 'Seaside Suzie' was the name of a vitamin supplement instead of a person I will now always imagine you as a little pot with arms and legs , rattling up and down along the prom 'shoo'ing off invading boats.
No I missed that, can you link to it for me 😉 (just for practice of course).
You realise, of course, that I wont be able to get that picure out of my head now 🤣
healthunlocked.com/thyroidu...
Ta Dah
There you go, you now have the knowledge 👍
Crikey, I even made a reply in that thread and didn't notice!
With all the supplements I take I ought to rattle, but I can rattle on, I often tell people that they can tell me to shut up and I won't be offended 🤣
You say...
"but so far the whole world has not worked it out."
These articles/papers might be of interest....
healthrising.org/blog/2019/...
I was diagnosed with both FM and ME/CFS and also with hypothyroidism.....which had been wrongly treated for many years.
If it's of any interest you can read my 3 year thyroid journey to Thyroid Hormone Resistance in my profile (click on my avatar)
I understand your frustration....
It now seems that my thyroid problem is genetic with my health having slowly declined over decades, the consequence of slowly decreasing cellular T3 (long story) until I could barely function. I'm now sure my maternal grandmother had the same problem....and highly possibly also my mother.
I'm slowly recovering at almost 75....having found the answers they didn't have. Huge thanks to well informed members who helped guide me along the journey.
Don't ever be satisfied when the word "normal" is used in relation to lab results! "Normal" made me ill for a least 20 years!
If you need more help just ask, we are all in this rediculous thyroid mess together!
MElol
Best...
DD
DippyDame
None of your links have become clickable. 
Could you edit them please.
humanbean
Links were originally highlighted
Hmm! Very odd, tried to edit and still no highlight on the links.
Now I've lost two of the links!
The remaining one will need to C&Pd
Not my finest hour I'm afraid....sorry!
Gremlins or glitches ...or I've lost the plot!!
Edit....remaining link now clickable!
Will post if I manage to retrieve those links
Dippy by name.....
The ability to reply to this post has been turned off.
Depression or "thyroid" depression?
what do i do next after borderline hypothyroid results?
How do you look when hypothyroid
Why don't people get it?
How do we get enough T3 into thyroid hormone receptors? 
