Hypothyroidism & fibromyalgia

[skinner44]

I have been backwards and forwards to GP and hospital for various tests & scans. Had an appointment at rheumatology this morning and he has basically said I have fibromyalgia. Is this something that can come along with hypothyroidism? I was diagnosed 2 years ago following partial thyroidectomy

[HeartWoman]

It was for me. I am not optimal pn thyroid yet, but the body pain is definitely getting better.

[Brightness14]

The only time I have body pain is when my FT3 is much too low

[Jaydee1507 Administrator]

Fibromyalgia is frequently linked with hypo and can be caused by being under medicated. Doctors will often just get our results within the range and then say we are fully treated which is far from the truth. To be well many thyroid pateients need to take charge and be in the driving seat for their care.

Your TSH needs to be at or just under 1 with FT4 at the top of the range and FT3 60-70% of range. Also key vitamins need to be OPTIMAL.

Do you have a copy of your latest blood results for thyroid and ferritin, folate, B12 & D3?

Do you know if you had positive thyroid antibodies? Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test. It’s worth trialling a strictly gluten free diet to see if it helps symptoms.

Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw, last T3 dose 8-12 hours before blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process)? Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsly elevated result and your GP/Endo might change your dose incorrectly as a result.

[skinner44 in reply to Jaydee1507]

I'm on 75mcg last results TSH 0.80 T4 17.1 (11-23) test was done before 9am no meds for 24hrs +. To my knowledge I've never had thyroid antibody test done, as for T3 GPS won't test it! Don't have results for others.

[Jaydee1507 Administrator in reply to skinner44]

Just going from the little the NHS has given you your FT4 is too low at 50% of its range.

Free T4 (fT4) 17.1 pmol/L (11 - 23) 50.8%

Your FT3 which is the active hormone is likely too low but using the NHS you will never know.

I'd recommend you getting full thyroid (TSH, FT4 & FT3) and vitamin testing. Ask a helpful GP or private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...

There is also a new company offering walk in & mail order blood tests in Crawley, Hove and Reigate areas. No charge for blood draw in clinic. Check to see if there is a blood test company near you. onedaytests.com/products/ul...

Only do private postal testing early Monday or Tuesday morning.

Hypo people get low vitamin levels as they get low stomach acid. This means that they cannot absorb vitamins well from their food.

We need OPTIMAL vitamins for our thyroid hormone to work well. This also aids conversion of T4 to T3.

I'm sure you can improve your current symptoms (labelled for lazyness by the NHS as Fibro) by optimising your hormone levels and also vitamins.

[SlowDragon Administrator in reply to skinner44]

75mcg levothyroxine is low dose unless you’re extremely petite

Strongly recommend you get FULL thyroid and vitamin testing done

Test early Monday or Tuesday morning and last dose levothyroxine 24 hours before test

Exactly what vitamin supplements are you currently taking

stop any supplements that contain biotin 5-7 days before test

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism 

thyroiduk.org/wp-content/up...

Tips on how to do DIY finger prick test 

healthunlocked.com/thyroidu...

[DippyDame]

FMis a syndrome ( a collection of unexplained symptoms) not a disease.

Your FT3 (and or cellular T3) is possibly low!

I was diagnosed over 20 years ago...with both FM and CFS....most symptoms cleared when optimally dosed with appropriate dose of thyroid hormone

My story is detailed in my bio.

This link should interest you!

healthrising.org/blog/2019/...

Have you had full thyroid testing to include....

TSH, FT4, FT3, vit D, vit B12, folate, ferritin and thyroid antibodies TPO and Tg

Private testing available with discounts

thyroiduk.org/help-and-supp...

In haste, just going out ...sorry for brief answer....post any questions

[Myalikki]

Nothing helpful to add, the others are far more knowledgeable and constructive! Just commenting so I can easily follow this thread. My own appointment with rheumatology was cancelled yesterday due to strikes, but assuming I get to see them eventually, I'm aware fibromyalgia may be a potential diagnosis considered, although the referral was made querying psoriatic arthritis.

[Star13]

I was originally told I had FMS and CFS but it was changed to Sjogrens as the symptoms are very similar and it can run with autoimmune thyroid. I’d advise getting a full thyroid panel including thyroid hormones.

[beh1]

just to add my experience; had awful body pain all over which resolved once on sufficient T3 (liothyronine). So… there is hope! Best of luck.