Thyroid, autoimmune thyroiditis, Hashimoto's

[TigerLilea]

I am a newbie but I wrote a post about my ME/CFS and someone said for me to try find my TSH levels and I found one from December 2017 it was 1.3 and December 2018 it was 1.2 so gone down although the doc as always said everything fine. Just wondering if anyone else has same?

My TSH was down to .81 and no one was worried about it. One doctor pointed out to me that TSH levels fluctuate.

 

[Barry]

My wife's ME started after a thyroid operation. Fairly recently we felt her ME might be complicated by her thyroid not being adequately managed, even though everything was supposedly in normal range. Having upped her T4 medication she has definitely improved somewhat, though the ME is still a major issue.

See https://www.s4me.info/threads/the-c...nt-2010-kansagra-et-al.4098/page-2#post-98562

 

[FMMM1]

I am a newbie but I wrote a post about my ME/CFS and someone said for me to try find my TSH levels and I found one from December 2017 it was 1.3 and December 2018 it was 1.2 so gone down although the doc as always said everything fine. Just wondering if anyone else has same?

Thyroid stuff is really interesting. However, I haven't kept up with it. If you search on-line then you'll probably find stuff linking thyroid function to ME/CFS e.g. see below*.

Ron Davis's son is pretty much low in everything.

Ron Tompkins (OMF - Harvard) in a recent interview highlighted that sepsis results in metabolic and immunological changes. So possibly chronic sepsis might affect thyroid function. I.e. changes in thyroid function in ME/CFS may be a consequence of ME/CFS [chronic sepsis] not the cause.



*“Low T3 Syndrome” in Patients With Chronic Fatigue ... - NCBI - NIH
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5869352/
by B Ruiz-Núñez - ‎2018 - ‎Related articles
20 Mar 2018 - Keywords: chronic fatigue syndrome, thyroid, “low T3 syndrome”, ... Disturbed hypothalamus–pituitary–adrenal (HPA) axis, presented as mild ... interactions between both the HPA and hypothalamus–pituitary–thyroid (HPT) axes and ...... fatigue syndrome (ME/CFS): increased interleukin-1, tumor necrosis .

 

[Amw66]

TSH is a bit of a blunt tool - from the Lapp paper posted earlier:-

Thyroid function tests.
TSH is least important due to HPA Axis suppression in ME/CFS.
Free T4 and/or total T3

there has been research re issues with glucocortinoids, and a higher prevalence of low T3 has been found in ME
https://www.frontiersin.org/articles/10.3389/fendo.2018.00097/full
https://www.meassociation.org.uk/20...levels-of-key-thyroid-hormones-20-march-2018/

Given that a hibernation state has been postulated this does make sense.

My aunt uses daily temperature readings as a gauge for thyroid function ( she had a partial thryroidectomy in her early 30s) - I set up a spreadsheet for her that automatically graphs the input. The initial graphs were all over the place, it's a lot less variable now.

I have heard that TSH falls in winter ( cue for semi hibernation), so it may depend when you are tested.

 

[DokaGirl]

@Amw66

Thank you for the note on Free T4 and total T3.

I don't feel TSH is the only thyroid test to be done, and agree Free T4 and T3 are a good idea to have tested as well.

There are panels of thyroid tests that can be done.

And, the basal body temperature provides, as I've been told, some indication of how your thyroid is functioning.

Apparently the autoimmune disease Hashimoto's causes much of the hypothyroid disease:

https://www.thyroid.org/hashimotos-thyroiditis/

 

[Little Bluestem]

As has already been stated, TSH means very little. Read up on T3 and reverse T3. Find someone who will test them.

Here are some sites I looked at in 2012. I do not know how many of them are still available.
Thyroid RT3
Stop the Thyroid Madness
Tired Thyroid
National Academy of Hypothyroidism
Paul Robinson
Endocrine Awareness Center for Health
Thyroid Science
Dr Rind

 

[Arnie Pye]

This video is old. The interview it shows was recorded in 2003. But I did find it interesting. The type of testing involved is something I've never come across myself in this context.

​

 

[Trish]

For those who don't want to watch the video, the answer is she had a urine test that showed what blood tests hadn't shown, that her thyroid wasn't working properly.
Her GP prescribed thyroxine. She says after just 2 hours of taking her first dose of thyroxine, her exhaustion just 'rolled away'.

 

[Arnie Pye]

I'd be interested to know if anyone knows of a company that does urine testing for thyroid.

 

[MrMagoo]

For those who don't want to watch the video, the answer is she had a urine test that showed what blood tests hadn't shown, that her thyroid wasn't working properly.
Her GP prescribed thyroxine. She says after just 2 hours of taking her first dose of thyroxine, her exhaustion just 'rolled away'.

So did she actually have hypothyroidism or Hashimotos etc rather than ME/CFS?
I get my thyroid hormones checked in my annual bloods, last year for the first time they became borderline.

 

[Trish]

She said the test was done in a small pilot study in Holland, I think. She also made it clear that she's not claiming this is a cure for ME, just that it worked for her. Given this was in 2003, her diagnosis may have been simply based on exhaustion, brain fog and significantly reduced capacity to function. She didn't mention any other ME symptoms I don't think.

 

[MrMagoo]

Certainly it’s worth having your thyroid checked and especially women from middle-age are at risk of Hashimotos. I’m pretty sure in the UK it’s going to have been included in a full bloods panel if your GP has run one. As I say, I get one yearly anyway (good GP thought that as I wasn’t “getting anything from the NHS” a yearly update of bloods was something useful. Since then I’ve insisted on keeping going with it)

 

[InitialConditions]

I'm afraid I'm skeptical of this story. Urine thyroid tests don't seem to be used at all, and are in fact recommended against, whereas blood thyroid tests are and have been for decades. Here's a paper in Dutch that concludes that 24-h urine tests for T3 and T4 are not accurate and cannot be used to diagnose hypothyroidism: https://pubmed.ncbi.nlm.nih.gov/18237046/ — it wouldn't surprise me if the patients in these case reports were also diagnosed based on tests from the Dutch laboratory mentioned in the video. Also the symptoms resolving straight away doesn't seem to fit with most people's experience of taking levothyroxine.

 

[Jonathan Edwards]

I agree. It looks as if urinary thyroxine might have been of some use during pregnancy in the days before protein binding effects were taken into account but I cannot see any reference to them being useful in the last thirty years.

 

[Arnie Pye]

So did she actually have hypothyroidism or Hashimotos etc rather than ME/CFS?
I get my thyroid hormones checked in my annual bloods, last year for the first time they became borderline.

By modern blood tests I suspect she would not have been diagnosed as hypothyroid. Hashimoto's didn't get mentioned at all. But the urine tests she had done showed that she was excreting almost no thyroid hormones at all. Unfortunately I have absolutely no idea what results would be expected from someone in full health, or even in someone with overt or subclinical hypothyroidism.

 

[Jonathan Edwards]

But the urine tests she had done showed that she was excreting almost no thyroid hormones at all. Unfortunately I have absolutely no idea what results would be expected from someone in full health, or even in someone with overt or subclinical hypothyroidism.

I doubt there was anything mysterious about this. There will be a well understood relation between blood free thyroxine and urinary thyroxine. The level for hypothyroidism (doctors tend not to bother with talking about 'Hashimoto's disease') will be lower than normal in proportion to the blood findings with various adjustments for volumes and protein binding.