Pain from levothyroxine, I think!

[activelazy]

I have developed a lot of pain in my right elbow and right pinky joints. Also, some pain in my left elbow and arms and legs muscles.

I have corrected my D, B12 and ferritin. Folate always was good anyway. And I am well maintaining these levels I have checked regularly. Taking k2 and magnesium too with D for quite some time now.

Have been recently checked for RA. CRP ESR very low, RA factor negative, Anti CCP antibodies negative in October 2017.

Been on levothyroxine since March 2017.

I am unable to associate these newly developed joint and muscle pain to anything else. My right elbow is so bad I can't lift the lightest of things or turn my arm from one direction to another. Can't even take wall plug out.

Before starting levothyroxine, my results were:

TSH 3.2 (0.3 - 4.5)

FT3 5.3 (3.1 - 6.8)

FT4 18.3 (11 - 22)

I insisted and GP gave me a trial. I had been correcting my vitamins at the same time for last more than a year, D, B12 and ferritin which all stand at respectable levels now. I am still continuing to maintain them and checking regularly. D and ferritin between 90 and 100 and B12 above 1000. I am now thinking that may be any improvements I had were because of these rather than levothyroxine. And that it's the levothyroxine that is causing me all this grief.

I think I will I have to stop taking it to see if pains go away. I am seeing my GP on Wednesday 13 December and I will request her to do x-ray of my elbow just in case, although she may not do it.

But I can't live with this unprovoked and unexplained pain anymore.

[Clutter]

Activelazy,

Have you been taking the same make of Levothyroxine since March?

[activelazy in reply to Clutter]

Hi Clutter

My 25 MCG was Mercury for 8 weeks, then 50 MCG actavis for 16 weeks, then 75 MCG mercury for 5 weeks.

The last dose did not agree with me. I am sure 75 was too much for me and it's a guess that mercury is also not right for me as I had a very very bitter taste which improved once I went back to actavis. It took about 2 weeks to improve. I reduced to 50/75 alternate days from 1st November (actavis + wochkart) as I was feeling anxious). After 4 weeks on this I dropped to 50 MCG actavis. I have been on actavis now for last 7 weeks.

I had no problems with actavis for 16 weeks from May to August so I decided to take this one rather than mercury.

Muscle aches and pain in elbows (really bad in one) have significantly increased in last few days. And I have not felt any magical improvement in 9 months on levothyroxine. It was a trial. My FT3 never changed and apparently it was never too bad.

[Clutter in reply to activelazy]

Activelazy,

If you are prescribed 75mcg Levothyroxine but are only taking 50mcg then you will be undermedicated and that may be causing the muscle aches and pain.

FT3 5.3 will only have been so good because high TSH was flogging your thyroid to convert T3 and stimulating peripheral conversion. FT3 will probably have dropped without high TSH stimulation and if you are not taking sufficient dose.

Has anyone ever had magical improvement on Levothyroxine?

[activelazy]

Doctors never wanted to prescribe. I just insisted on a trial and on all the increases. My tsh at 50 mcg for 16 weeks was 1.4. ft3 5.4. At 75 for 5 weeks only, ft3 dropped to 5.2.

And I have negative antibodies.

[Hidden]

I had exactly the same pains when I was on Levo I came of it and started on NDT and all the pains disappeared.

I even experienced pains from an old injury from over 35 years ago. After the healing process on my ankle I had never had any pain since, it only started when on Levo which was conclusive to me that something was terribly wrong.

All of my minerals were good too I believe that some of us can't use Levo it makes us ill.

[activelazy in reply to Hidden]

Thanks for replying. But I am surprised that I had 50 MCG for 16 weeks from may till august had no problems. Then tried 75 for 5 weeks and felt anxious and reduced back to 50 which I was prepared for anyway. Don't know why now I am having pain?

Don't know what to do? How do you get NDT?

[activelazy in reply to Hidden]

Hi Bunnyjean,

I have stopped levothyroxine. It's been 8 days. I stopped it to see if this is the cause of pain in my elbows and right pinky.

One doctor thinks I have tennis elbow. I don't play any sport or do any repetitive strenuous tasks. So I don't agree with this. It can't just start in both elbows out of nowhere. There is no swelling either. Then pain in right hand pinky can't be out of tennis elbow.

How long did it take you (after stopping) to realise that pain was caused by levothyroxine?

Thx

[Hidden in reply to activelazy]

I forgot to say that it was quite a few weeks I honestly can't remember exactly, sorry. I know that it takes weeks for the T4 to go from your system.

If you need thyroid medication surely you should start back on something else?

[activelazy in reply to Hidden]

Thank you Bunnyjean,

It's been 8 days since I stopped it. I have some generalised pain symptoms back again but able to cope for now. They may get worse as days go by.

However, if pain in my elbows gets resolved by doing this, I will be happy. A permanent problem in elbows is something I am dreading. I already do not have very good knees 😉.

I will wait few weeks then, I suppose! GP checked my muscle strength and there was no problems. I don't feel particularly weak. If it wasn't for this tennis elbow kind of pain, I could easily lift a good load, if needed. Even my wife's shopping bags!

Just got elbow X ray results - normal no action. Will get back if and when time comes for NDT etc. Thank you

[activelazy in reply to Hidden]

You fell ill at the same time as me. I also don't have antibodies.

[Hidden]

Before I had my thyroid removed in Oct 2015 I was fit and well and had no medication. I was put on Levo afterwards and felt ill and in pain that's how I know that it was Levo causing my distress.

I had no pain on NDT or NDT and T3 together. I have never had hasimotos or gut issues and my mineral status was optimal whilst on Levo.

If you would like to PM me I will refer you to the site to purchase NDT