Levothyroxine & leg pains

[Mlinde]

I was put on levothyroxine in 2008 following a blood test and informed that I had an underactive thyroid (the blood test results were never given to me).

I was started on 25mcg. Within hours of the first dose, I got the most awful pains in my legs, from my thighs to my ankles, whenever I walked more than a hundred metres or so.

My circulation in my legs was tested and it was claimed that it was narrow arteries (intermittent claudication) but the fact is that within hours of taking the Levo, the pains started and have never gone away. Moreover, restricted circulation affects the lower legs not hips and thighs, entire legs.

Has anybody else experienced these symptoms following Levothyroxine?

[SlowDragon Administrator]

How much levothyroxine are you currently

Previous post few months ago it looked like you were under medicated (no ranges on results)

Did you get FULL thyroid and vitamin results

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

Do you always get same brand levothyroxine

Personally if under medicated, I get excruciating pain in legs

[Mlinde in reply to SlowDragon]

Yes, back then I was under-medicated, I'm on 125mcg Levo and all my vits etc are in range. I don't convert FT4 very well. In fact whenI first went onto Levo, I was in a weird brain fog for over three years. I have a feeling that my thyroid has never worked well as I've been cold since I was a kid and I think my body adjusted/compensated and when I started on Levo it came as a shock to my system. Hey, that's my theory.

[SlowDragon Administrator in reply to Mlinde]

What are your most recent Ft4 and Ft3 results and ranges

[Mlinde in reply to SlowDragon]

The last ones I got from the NHS were unreadable and didn't include FT3, I've given up on getting tested as I can't get the right treatment anyway, so what's the point?

[SlowDragon Administrator in reply to Mlinde]

Thousands upon thousands of U.K. members test privately

Cheapest for just TSH, Ft4 and Ft3 is Monitor My Health at £26.10

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

Do you ensure both 100mcg and 25mcg tablets are always same brand levothyroxine at each prescription

What were most recent vitamin results

We need GOOD vitamin levels…..not just somewhere within range

Do you have autoimmune thyroid disease (hashimoto’s) usually diagnosed by high thyroid antibodies

If you need thyroid antibodies and/or vitamin testing Medichecks usually the cheapest

Approx how much do you weigh in kilo?

As a bloke 125mcg isn’t very high dose

[Mlinde in reply to SlowDragon]

I've been through all these questions already.

[SlowDragon Administrator in reply to Mlinde]

Looking at profile….your antibodies very high…so definitely Hashimoto’s

Has GP done coeliac blood test

Have you tried going on absolutely strictly gluten free diet and/or dairy free

Conversion of Ft4 to Ft3 is often poor with Hashimoto’s

You may need T3 prescribed alongside levothyroxine

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors who will prescribe T3

[e-mail]

[Mlinde in reply to SlowDragon]

don't have coeliac, not gluten intolerant, can't getT3 prescribed.

[SlowDragon Administrator in reply to Mlinde]

Only 5% Hashimoto’s patients are coeliac but a further 80% find strictly gluten free diet helps or is essential

Only way to know if that includes you is to try it

Personally I was utterly astonished to discover I am gluten intolerant

It is possible to get T3 prescribed…..but you need to pick your endocrinologist carefully and get FULL thyroid and vitamin testing done yourself BEFORE booking any consultation

Come back with new post once you get results

58,000 prescriptions for T3 in England in last year on NHS

Searchable by CCG area

openprescribing.net/analyse...

Probably double that as private prescriptions

Many members start on private prescription, some then successfully transfer to NHS

[shaws Administrator]

This link may be helpful:-

verywellhealth.com/muscle-a...

[Mlinde in reply to shaws]

I've seen this, it's not myopathy as it's my legs, not my body

[chrisbuy63]

I always have leg pain on Levo! Can't offer a solution though sorry.

[Mlinde]

Yeah, I came across an obscure paper awhile back that claimed that Levothyroxine interferes with oxygen supply to the leg muscles and advocated that it be treated with Quinnine! So I forwarded the paper to my GP; she never got it. Then I spoke to another GP who informed me that he couldn't prescribe quinnine, thatI should drink Indian Tonic Water instead! After I hung up, I realised the bastard was putting me down! I'll never trust a doctor ever again.

[HowNowWhatNow in reply to Mlinde]

And did you try tonic water?

I wonder. I am also having leg pains, so have to ask!

[Mlinde in reply to HowNowWhatNow]

Yes, in my gin (just joking, I hate gin). The medical business takes us for ignorant fools and treats us like children.