hypothyroidism and polymyalgia link?

[humlies]

I've bee reading lots of well informed posts on the possible link between thyroid problems and fibromyalgia. I have a lot to learn about T4 and T3 levels, but was wondering if there was a possible link between hypothyroidism (which I have had for 25 years) and PMR (which I have had for 3 years).

[SlowDragon Administrator]

Welcome to the thyroid forum

Do you have any recent thyroid and vitamin results you can add

How much levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

When were vitamin D, folate, ferritin and B12 levels last tested

Are you currently taking any vitamin supplements, if yes, what

Do you know if your hypothyroidism is autoimmune thyroid disease also called Hashimoto’s

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis) usually diagnosed by high thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended on here that all thyroid blood tests early morning, ideally before 9am and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Are you in the U.K.?

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

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...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

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

monitormyhealth.org.uk/

Conversion of levothyroxine (Ft4) to active hormone (ft3) often gets worse as we get older

Vitamin levels tend to reduce as we get older too

[humlies in reply to SlowDragon]

My goodness, I think your username should be RapidDragon! Thank you so much for your reply. I have never taken much interest in thyroid matters; I appear to be Ok on 75mg of Levothyroxine, which I have been taking for about 20+ years. Polymyalgia appeared in August 2019; I am now on 2 1/2 gm. of prednisilone, and fighting fatigue, breathlessness, dizziness, nausea, jelly legs etc. I have been told this is all due to PMR, but I have begun to wonder whether there is not another cause, maybe linked to the thyroid problems. I also have emphysema. I'm afraid that I can't answer a lot of your questions, but I am actually seeing a doctor in 2 days time, so I will raise at least some of your points. I know I have an autoimmune problem, (no goitre) and also know that I have regular checks for vitamin levels, but I did not know that I should not take levothyroxine just before a blood test. I did ask about T3 and T4 levels, but was told there was no need to test these.......I live in the UK. I take cranberry pills and vitamins D3 and K2, which apparently direct the calcium supplements I have to take (to counteract the effect of the steroids) to the bones rather than to the arteries. It is ridiculous, but I am on 14 different medications.I am so grateful for your help and will read the links you sent.

[Marz in reply to humlies]

Do you obtain copies of all your test results? They are legally yours. You can then post here with more info. Also a good way of checking progress and see what has been missed !

When a Doc says Fine/Normal/OK - they mean in range but it is where you are in the range that is key to feeling well.

[SlowDragon Administrator in reply to humlies]

So

If taking steroids this frequently lowers TSH so it’s absolutely ESSENTIAL to test Ft4 and Ft3

Unfortunately it’s virtually impossible to get Ft3 tested on NHS these days. Even if GP requests (rarely) the lab won’t test it (even if prescribed T3 on NHS!)

75mcg levothyroxine is only one step up from starter dose

Were you on higher dose in past

Approx how much do you weigh in kilo

Which brand of levothyroxine are you currently

Teva brand is the only brand that makes 75mcg tablets

Teva brand upsets many people

Strongly recommend getting full thyroid and vitamin testing done…..privately if necessary

See what GP will test first

ALWAYS test thyroid levels early morning, ideally before 9am, and last dose levothyroxine 24 hours before test

Breathlessness is frequently linked to low iron/ferritin

Jelly legs ….low Ft3

You say you are on 14 different medications. Does this include a PPI like omperazole

Levothyroxine must be taken on its own, on empty stomach and then nothing apart from water for at least an hour after

No other medications or supplements within 2 hours.

Some must be minimum 4 hours away from levothyroxine - vitamin D, iron, magnesium, HRT, calcium, PPI

Many people take levothyroxine at bedtime or in middle of night to avoid other medications

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex

[humlies in reply to SlowDragon]

Thank you again. I take 3 25mcg. levothyroxine tablets; Teva appears to be the MA holder (?). I have never taken more than this, though started off many years ago on just 25 mcg.I weigh about 62 kilos. Yes, I have taken omeprazole, but it caused me to feel continuously sick, so I gave it up.I have been taking levo. and prednisilone sometimes within 30 minutes or less of each other so it is really useful to know that I should not be doing this.

I am not sure of the difference between Ft3 and T3??

I am so grateful for all this help.

[SlowDragon Administrator in reply to humlies]

75mcg levothyroxine is only one step up from starter dose

You are quite likely under medicated

Teva brand levothyroxine upsets many people, but others, often if lactose intolerant, find it the best option

Guidelines on dose levothyroxine by weight suggests you might need 99mcg per day

First step is to get FULL Thyroid and vitamin testing done privately

See EXACTLY What is going on

Only do private testing early Monday or Tuesday morning, ideally before 9am and last dose levothyroxine 24 hours before test

Levothyroxine is T4

Blood test measures the amount of Free T4 in blood….. this means the amount of T4 unbound and available to use

All Ft4 has to be converted into Free T3 before it can be used in the cells

T4 = 4 atoms of iodine

T3 = 3 atoms of iodine

To convert (or to use technical term diodinase) Ft4 into Ft3 we need GOOD vitamin levels and the right genetics

Any steroids tend to lower TSH …..and vast majority of medics (incorrectly) adjust dose of levothyroxine by TSH.

Levothyroxine dose should only be adjusted by testing Ft4 and Ft3

Thousands of U.K. patients forced to test privately to make progress

Examples of private testing

Medichecks

healthunlocked.com/search/p...

Blue horizon results

healthunlocked.com/search/p...

Fibromyalgia is a dustbin diagnosis…..one GP gives if they can’t work out what’s actually wrong

Fibromyalgia symptoms frequently linked to low Ft3

[SlowDragon Administrator]

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.

Link re access

healthunlocked.com/thyroidu...

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

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

[humlies in reply to SlowDragon]

Many thanks to you and the others who have replied. I saw the doctor yesterday and she gave me 20 minutes, which I think is miraculous. When discussing thyroid problems, I read out to her part of the information you gave me; her opinion was that because my TSH levels have been consistent over many years, there was probably nothing the matter with the T3 and T4 levels. However she has requested that both be tested when I have a blood test in 2 weeks; she agreed with you that this might not happen. I did not mention iron levels but can leave that for another time.I realise it is my responsibility to learn how my body works, and I am so grateful to this forum for helping me to do this. It is the same with the PMR forum. I see I inadvertently said I had fibromyalgia rather than polymyalgia; the 2 of course are quite different!

[Chett]

Hello Humlies, I’ve had Hashi for 20 years, and about 5 years ago I developed PMR. I was on prednisone for 2 years until the PMR went away. My main symptom of PMR was muscle pain, tiredness was secondary. I hope you find some answers, it is a very debilitating condition.

[humlies in reply to Chett]

Thank you Chett; it is great to have this support online and to know that I am not the only "odd" one!

[JAmanda]

If you have a read of the many posts on here, you’ll see many people are left under medicated by docs and many symptoms would be much improved or resolved if taking a little more levo. Get your recent results from the doc but you’ll at most have your t4 and tsh tested. To get the full set including t3, you’ll likely need to get tested privately via Medichecks etc. it’s easy to do and will give you the full picture so you’ll get better advice here.

[humlies in reply to JAmanda]

Thank you JAmanda, I will do this.

[JAmanda in reply to humlies]

Get your blood drawn first thing, before you take your Levo and a week after stopping any b vitamins with biotin in.