Thyroid UK
84,353 members99,355 posts

Where is all this pain coming from

I have pain, sometimes I can hardly walk. My hips hurt my knees hurt (the joints almost feel seized up).

Since my TT (just over 4 years ago) I have got used to my bones aching and joints feeling sore but it just seems to get worse. Sometimes it improves for a few days then it is back.

When I lie in bed I feel easier but I am aware of random pains in my body.

I am variously over and under dosed as my medication has never been sorted out to any satisfaction.

I have a level of fatigue which could only be described as debilitating. Sometimes just walking 20 yards will leave be breathless.

I can not work out if making myself use my joints (gentle walking) helps. If I do too much I am exhausted anyway.

Does anyone else have this level of pain in their joints? I am terrified that it is going to keep worsening until I can do nothing.

Any suggestions?

7 Replies

Sorry that you are so unwell. Are you on any thyroid medication, if so what dose? How often are your thyroid levels being checked?

Have you had B12, Vit D, Ferritin and Folate tested? Many people (with and without thyroid disease) suffer deficiencies, especially in those four.

It's a good idea to get print outs of your blood test results, even if you dont understand them at first, there are many experienced and knowledgeable members who can point out where problems may lie.

If you do have your last test results please post (with ranges, the numbers in brackets) and someone will comment.

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Being undermedicated, vitamin D deficient and having low ferritin/iron can all cause joint pain. Do you have any recent results to post?

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If you've had a TT, my personal view is that people who have had their gland removed should have the addition of T3 to their T4 (i.e. liothyronine and levothyroxine).

When doctors adjust doses up/down/up/down according to where your TSH is I doubt anyone can get well. The TSH is meaningless when on thyroid hormone replacements. It is good for being diagnosed.

When you have blood tests, the appointment should be the earliest possible, fasting (you can drink water and allow 24 hour gap between your last dose of levo and the test and take afterwards.

If you've not had B12, Vit D, iron, ferritin and folate vchecked ask for these too. We can be deficient and give problems as well.

Do you take levo first thing with one full glass of water and wait about an hour before eating? Some prefer bedtime dosing and as long as you've last eaten protein about 3 hours before you do the same procedure, except you miss this dose before test and take afterwards with the dose as usual at bedtime.


May be you should take a different tack - having had fleeting arthritis I multi joints - have found

I couldn't get up off the floor without having a chair to lean on. May be you should visit a rheumatologist first - they can link your thyroid with arthritis, or joint pain. Recently I had inflammation of my shoulder joint and a frozen shoulder, which improved after a course of antibiotics after a sore throat and ear infection. Certain foods can trigger arthritic joints - such as red meat and red wine and beer products - with blood tests you might find you have a type of gout

.The usual course is to go to a GP where you will be referred to a specialist who is a surgeon.

My husband had multi joint flare ups, but was not pointed to the rheumatologist first - he was

admitted as an emergency with septic arthritis, but the actual diagnosis took over a year.

He was threatened with surgery - but with mobility exercises on an exercise bike - he is racing round the garden - can't keep up with him. The rheumatologist found he had been misdiagnosed

by the GP and he had a rare type of arthritis palindromic which had a positive treatment plan and outlook. Take care.


I too have joint pain. Since recently starting Levothyroxine, I have had various symptoms. Now my toes and fingers are extremely painful. With burning sensations, sometimes at night keeping me awake. It was not there before start the meds!


Here are the last blood tests

TSH 2.790 (0.360 - 3.740)

T4 Free 9.53 (7.60 - 14.60)

T3 Free 2.26 (2.18 - 3.98)

This was after a couple of months of taking 100 of T4 only. I am now back to taking my combined T4 and T3 tablet (100/20). Not sure why I was moved from this to the T4 only I am sure it did not do me any favours. I want to try taking T3 only and see if that helps but still do not understand if I can live without the T4. I do not seem to convert T4 very well into T3.

Any thoughts anyone (through the fog that is!)


Those results just look like under-medication. Most people feel their best when their FT3 is in the top quarter of the range, not just a shade above the bottom. You probably feel slightly better because of the addition of T3, but it may or may not be necessary.


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