Research on Links between Fibromyalgia and Thyroid

[Stanleydoggy]

Can anyone point me towards recent research on links between thyroid health and fibromyalgia please? I started with fibromyalgia since having thyroid problems which has got significantly worse since having radio iodine treatment about 18 months ago. I am desperate and cannot get any help or support.

[greygoose]

Why did you have RAI? Did you have Grave's?

You might get more help if you post your latest blood test results, with the ranges, so that people can better understand what is going on.

[Stanleydoggy in reply to greygoose]

Yes I had Graves

[SlowDragon Administrator]

Low Ft3 is very common if just on levothyroxine as thyroid replacement

Vitamins need to be optimal too for good conversion of Ft4 to Ft3

Few links about fibromyalgia


healthrising.org/blog/2019/...


thyroiduk.org/tuk/research/...


thyroiduk.org.uk/tuk/relate...


stopthethyroidmadness.com/f...


prohealth.com/library/new-t...


chriskresser.com/low-t3-syn...


clinicaltrials.gov/ct2/show...


holtorfmed.com/download/chr...

healthrising.org/blog/2019/...

How much levothyroxine are you currently taking and do you always get same brand?

First thing is, do you have any actual blood test results? if not will need to get hold of copies.

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common,

Ask GP to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

For thyroid including antibodies and vitamins

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

[Stanleydoggy in reply to SlowDragon]

Thank you so much. I can’t think why I’ve not been on here before except that I’ve felt so sick I can hardly help myself.

[SlowDragon Administrator in reply to Stanleydoggy]

First step is to get copies of recent blood test results and ranges

Come back with new post once you have these

Members can advise on what other tests you need

Important to do test at correct time of day.....as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Testing the four key vitamins.....frequently we need to supplement virtually continuously to maintain optimal vitamin levels

If after getting vitamins optimal and thyroid levels finely tuned.....if Ft3 remains low then many people need small doses of T3 alongside levothyroxine

Read posts everyday to learn as much as possible

[Stanleydoggy in reply to SlowDragon]

I’ve been to the gp and she’s agreed to all the tests. She has requested T3 but says the lab may refuse but I’ll have to cross that bridge when I come to it. Going to catch up with her next week when the tests are back.

[Stanleydoggy in reply to SlowDragon]

Thank you. Please can you tell me if T3 is available on NHS?

[SlowDragon Administrator in reply to Stanleydoggy]

NHS lab usually refuses to test Ft3 even if GP requests it

Essential to test vitamin levels regularly (and Both thyroid antibodies at least once)

Yes it is possible, but extremely difficult to get T3 on NHS. Price charged to NHS for liothyronine is ludicrously high.

GP can not prescribe. Has to be via three month trial through a NHS endocrinologist

New NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking Levo thyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

Aim is to bring a TSH under 2.5

gp-update.co.uk/SM4/Mutable...

thelancet.com/journals/land...

mjauk.org/wp-content/upload...

dailymail.co.uk/news/articl...

thyroidtrust.org/media-cove...

First step is to get FULL thyroid and vitamin testing

Come back with new post once you get results

[Stanleydoggy in reply to SlowDragon]

Ok thanks will await results of tests I had yesterday

[DippyDame]

frontiersin.org/articles/10...

This might be of interest given the FM/CFS connection.

I was diagnosed with both and have low T3

[Stanleydoggy in reply to DippyDame]

Thank you it’s seems I need to check my T3

[BadHare]

FM & hypothyroid symptoms, also CFS & ME, are very similar. They’re also treated with lots of meds that don’t ameliorate these conditions that have nasty side effects rather than hormones & micronutrients that actually work.

Make sure your micronutrients are optimal to help your T4 work better, & consider trying NDT or Metavive if you don’t start to feel an improvement.

[Stanleydoggy in reply to BadHare]

Thank you 😊

[Stanleydoggy in reply to BadHare]

What is NDT and Metabive? I am just on levothyroxine 75 mg

[Marz in reply to Stanleydoggy]

That sounds a small dose 😥

[BadHare in reply to Stanleydoggy]

Natural dedicated thyroid & glandular extract. These are the natural forms of thyroid hormone replacement that were used from the late 1800’s until synthetic hormones (&the damned TSH test) were invented about 50 years ago. Prior to this, anyone with the symptoms of the above mentioned illnesses would have been given natural meds to see if it reduced the symptoms. The natural version contains T’s 1,2,3,4, & calcitonin rather than just the T4 you’re expected to convert to T3.

I was diagnosed with FM eleven years ago but had symptoms of hypothyroidism for most of my life. I treat myself for the latter which seems to be working out quite well for me. It’s essential to have good nutrition levels for anything in our bodies to work well, not just our hormones.

[Stanleydoggy in reply to BadHare]

Thank you 😊

[Jazzw]

Bet it was never fibromyalgia. That’s a bucket diagnosis, doctor speak for “I give up, just take the painkillers and leave me alone”.

If your thyroid’s been irradiated, then you are almost certainly undermedicated if you’ve got symptoms of fibromyalgia.

Do you have any thyroid blood test results? Do you have results for levels of B12, folate, Vit D, iron/ferritin?

Please don’t just accept the diagnosis. There’s a huge chance you can feel much better than you do now with the right help.

[Stanleydoggy in reply to Jazzw]

I’ve a gp appointment this afternoon so will follow up as am convinced I am not getting enough levothyroxine. And yes that’s exactly what has happened- take the painkillers and go away! Really appreciate the feedback.

[cazmania7]

I became very unwell almost a year after RAI. Been unwell since and that was 2014.

Was told it was my iron. Then told depression. Then told CFS/ME.

I believe it was the RAI all along and still do

[Stanleydoggy in reply to cazmania7]

Thanks. When I was hyper and seriously I’ll I got terrible muscle cramps. When my levels went down into the so called normal range I started with numbness, burning in all my muscles and joints, dizziness, extreme fatigue etc etc. Does this sound familiar?

[cazmania7 in reply to Stanleydoggy]

I was fine when I had Graves. I just took the carbimazole and was still fine.

Took RAI and in under a year became very sick. Extreme fatigue, felt almost as though I was being poisoned. I thought I was dying. I had gone from being nine stone, strong, jogging and spinning to getting out of breath walking one flight of stairs. It became May 2015 and I’m still sick.

I’d encourage you to get a full private blood test done so you can begin hopefully in helping yourself.

[Stanleydoggy in reply to cazmania7]

Thank you it helps to know Others in the same boat - currently I can’t walk 2 miles without needing to go to bed. Will take advice.

[cazmania7 in reply to Stanleydoggy]

I feel for you. It turns your life upside down! Many people on this forum have got well from T3. I hope I’m one of them.

I hope you find a solution too

[SlowDragon Administrator in reply to Stanleydoggy]

First step is to copies of recent results

2nd step get FULL thyroid and vitamin testing

Come back with new post once you get results

75mcg is tiny dose levothyroxine

Guidelines recommend 1.6mcg levothyroxine per kilo of your weight .....as an approximation....some need more, very occasionally some need slightly less

Absolutely essential to test vitamin levels and frequently these need virtually continuously supplementing to maintain at optimal levels

[BadHare in reply to Stanleydoggy]

Also of B12 deficiency.

[BadHare in reply to cazmania7]

My friend developed PA immediately after her RAI, & has had constant throat & stomach pain since.

[Stanleydoggy in reply to BadHare]

Thanks for your feedback and comments 😀

[cazmania7 in reply to BadHare]

I feel for your friend. It’s no fun!!

I’ve paid for a few B12 jabs. Hasn’t made a difference sadly.

[BadHare in reply to cazmania7]

Hers are 3 monthly which is totally inadequate! Did you try hydroxocobalamin?

I injected every 7-8 days, now 4-5 as it’s helpful for pain.

[cazmania7 in reply to BadHare]

I think that was what they inject me with