joint problems: Good morning lovely people, I... - Thyroid UK

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joint problems

Dizzy444 profile image
16 Replies

Good morning lovely people, I awoke yesterday with painful knees this morning both my thumb joints are painful. I’ve never suffered with things like this despite the fact I’m 67, could this be thyroid related ? I know my t3 is at the bottom of the range and t4 at the top, which I can’t change, as usual endo and doctors just look at tsh.

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Dizzy444 profile image
Dizzy444
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16 Replies
SlowDragon profile image
SlowDragonAdministrator

Request GP test vitamin D, folate, B12 and ferritin

Also request dose levothyroxine is increased to 75mcg and 100mcg alternate days

Bloods should be retested 6-8 weeks later

Test early morning and last dose levothyroxine 24 hours before test

Which brand of levothyroxine are you currently taking

What vitamin supplements are you currently taking

Dizzy444 profile image
Dizzy444 in reply toSlowDragon

Thank you, I was previously on 75/100 but it was reduced in August. The last time I was on this dose my tsh rose to 2.5 and I did not feel well, on 75/100 my tsh dropped to 0.05 which the endo and gp thought was too low. My t3 has never risen much above the bottom of the range, but of course that is ignored. I have a Medichecks test ready to take but I’ve been advised to wait till 1st of January because of postage problems.

SlowDragon profile image
SlowDragonAdministrator in reply toDizzy444

Many many people find TSH drops low

If Ft3 isn’t over range you’re not over medicated

Do you always get same brand levothyroxine at each prescription

Essential to regularly retest vitamin levels and maintain at OPTIMAL levels

What vitamin supplements are you currently taking

Your thyroid antibodies are low

Have you had ultrasound scan of thyroid

20% of Hashimoto's patients never have raised antibodies 

healthunlocked.com/thyroidu...

 

Paul Robson on atrophied thyroid - especially if no TPO antibodies 

 paulrobinsonthyroid.com/cou...

If Ft3 remains low, once all four vitamins are optimal

Email Thyroid U.K. for list of thyroid specialist endocrinologists and doctors who will prescribe T3 if clinically appropriate 

tukadmin@thyroiduk.org

The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :

nice.org.uk/guidance/ng145

"Your responsibility

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "

Comprehensive list of references for needing LOW TSH on levothyroxine 

healthunlocked.com/thyroidu....

TSH should be under 2 as an absolute maximum when on levothyroxine 

gponline.com/endocrinology-...

T4 therapy

ncbi.nlm.nih.gov/labs/pmc/a...

In a study evaluating tissue function tests before total thyroidectomy and at 1 year postoperatively when using LT4, it was found that peripheral tissue function tests indicated mild hyperthyroidism at TSH <0.03 mU/L and mild hypothyroidism at TSH 0.3 to 5.0 mU/L; the tissues were closest to euthyroidism at TSH 0.03 to 0.3 mU/L [48]. A normal serum TSH level consequently does not necessarily indicate a euthyroid state at the tissue level.

Dizzy444 profile image
Dizzy444 in reply toSlowDragon

Thank you for taking the time to reply, the endo I see was on the recommended list but only looks at my tsh, at my last appointment the first thing he commented on my increased blood sugar and recommended I take statins. My tsh was low t4 high and t3 just in range !

I will read the recommended articles and thank again

SlowDragon profile image
SlowDragonAdministrator in reply toDizzy444

if you have low Ft3 you likely need T3 (liothyronine) prescribed alongside levothyroxine

Low Ft3 linked to high cholesterol

Improving low Ft3 should result in cholesterol levels reducing

Dizzy444 profile image
Dizzy444 in reply toSlowDragon

Exactly what I thought, the endo said I should take statins, when I said I was reluctant he told me he’d taken them for years !

SlowDragon profile image
SlowDragonAdministrator in reply toDizzy444

But he (probably) doesn’t have under active thyroid

nhs.uk/conditions/statins/c...

If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.

RoboTh profile image
RoboTh

When my TSH goes above 2/3 I suffer with significant pain in my fingers wrists feet...im 45. They resolve when I'm adequately treated x

Dizzy444 profile image
Dizzy444 in reply toRoboTh

Thank you I’m waiting to do another test. I’m interested in why this has happened, I’ve never had this happen before and wondered how and if thyroid problems cause this.

Buddy195 profile image
Buddy195Administrator

My rheumatologist recommended turmeric with black pepper and ginger for painful joints, so this maybe worth keeping in mind if your symptoms persist.

Dizzy444 profile image
Dizzy444 in reply toBuddy195

Thank you you I may steal some of my husbands turmeric.

tattybogle profile image
tattybogle

Hi Dizzy444 My knees and lower arms /wrists definitely started to have aches and pains when my Levo dose was too low , and a previous bursitis on my knee flared up again ('housemaids knee') ... but to be fair my knees generally start to ache horribly on days where the weather gets REALLY cold.... it's definitely worth trying an increased dose of levo again, to see if it resolves your problem, but even if it does it may not stop them being a pain in a harsh winter. I suspect knees really don't like cold .

The issues to consider are ;

~ Are the current guidelines your GP is using correct when they say TSH 0.05 is an increased risk for heart and bones? ( this is doutbful / controversial)

~ And , even if they are correct ... how do YOU feel about accepting a theoretical increase in risks to your heart / bones , if taking a higher dose of Levo (or adding some T3) improves your quality of life by allowing your knees to work properly , and not hurt all day everyday ?

For a list of posts containing useful discussions and evidence on the subject of 'low TSH /risk / quality of life' ... please see my reply to this post (3rd reply down) healthunlocked.com/thyroidu... feeling-fine-but-tsh-is-low

It starts here .. "I did a lot of reading about low TSH /risks/ on Levo, as mine had been 0.05ish for over a decade.

I found a large, long term study of patients on Levothyroxine, showing that 'risks' for TSH 0.04 - 0.4 were actually no greater than the risks for TSH 'in range' (0.4 -4)

The risks did increase for TSH below 0.04 , but most of them were still less than risks for TSH over 4 ... (and recent NHS guidelines say they don't even need to treat hypothyroidism until TSH is above 10 .. so they are obviously not very worried about the risks of TSH over 4 )..... " (The link to that paper is in the reply)

Also ..this paper can be used to argue against the (alleged) risk of low TSH to bones. healthunlocked.com/thyroidu... longterm-subclinical-hyperthyroidism-does-not-affect-bone-density-in-patients-having-had-thyroid-ablation-for-cancer (It is research looking at patients whose TSH was deliberately kept very low/ supressed to prevent the return of their thyroid cancer)

Dizzy444 profile image
Dizzy444 in reply totattybogle

Thank you for taking the time to reply, I’m ashamed to say I’m not in a good place mentally at the moment, hence I’ve not bothered to contact my endo or gp about this. I have a deep seated mistrust of the medical profession following the death at a young age of my mother, I fought for three years to get her better treatment. Sadly that treatment came too late.

I was told after my last gp bloods that I had higher blood sugar and raised cholesterol, neither the endo or gp connected this to thyroid even though my t4 was high and t3 just in range, my tsh was low so they simply reduced my dose. I’m quite slim and have a healthy low sugar diet, I have refused to take statins.

I will read the recommended articles, thanks again

tattybogle profile image
tattybogle in reply toDizzy444

There is no shame in it .... most of us on here have been there , it's NOT your fault ... and reading /learning / understanding more and realising others on here have experienced the same, is most people's first step to feeling more in control and slowly getting better .. mentally and physically ., and then being better able to deal with doctors .... my two penneth you are right to stay away from them when your mental health is fragile.. they can damage it immensely , if you are not ready to deal with them .

anyway ... having your thyroid hormones a bit too low for you also causes depression .. (as well as high cholesterol) and it was not your idea to lower the dose from where you felt well was it. :)

Dizzy444 profile image
Dizzy444 in reply totattybogle

Thank you, I’m going to wait a while before I visit the gp and maybe see a different endo.

RoboTh profile image
RoboTh

It's an inflammatory process hence the aches and pains. I presented with horrendous finger, thumb and wrist pains. They all go when I'm properly medicated

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