Burning pain in ankles and legs

[nettiboo1982]

Hello all I've been having burning pain on and off for a while maybe since my last pregnancy 17 months ago. It comes and goes and makes walking extremely painful and lasts for days once its hurting again. ive spoke to gp on a couple of occasions regarding this. Bloods test for diabetes came back normal all other blood test were also fine apart from ferritin.

The burning pain started again this week so spoke to gp again and he listed a few issues such as gout but said that was unlikely then went on to mention people with hypothyroidism can have this issue with burning pain in legs. I did ask him to explain but I couldn't understand what he was saying as English wasn't his first language. He has referred me to podiatry.

But I was wondering if any one can explain what this leg issue this could be? I've had diagnosed hypothyroidism since my first pregnancy almost 9 years ago. My tsh is something like 1.27 but I never truly feel 100% unless my numbers are under one. Which they never are I hate this condition doctors seem to think if your tsh is under 2 your magically well or not affected by it.

I still have issues with the cold and cannot handle very hot days my metabolism is still very slow I gain weight so easily and struggle massively to lose weight. My skin is dry I'm fatigued easily I have brain fog or stumble on my words alot my periods are haywire. So for me levothyroxine hasn't been a magic cure.

This leg thing feels like another kick in the teeth and that this condition has already robbed me of so much energy and zest for life.

Does it ever get better or is it all down hill from here?

[SeasideSusie Remembering]

Nettiboo1982

If your TSH is 1.27 and you have all those symptoms, it sounds as though you are under medicated.

You need to have TSH, FT4 and FT3 all tested at the same time.

The aim of a treated hypo patient on Levo only, generally, is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their reference ranges.

If your GP won't or can't do all tests (FT3 unlikely) then I would do a private test with one of our recommended labs.

MonitorMyHealth is an NHS lab which does a fingerprick test for TSH, FT4 and FT3 for £26.10, details and code here

thyroiduk.org/help-and-supp...

Make sure you do the test no later than 9am before eating or drinking anything but water. Take your last dose of levo 24 hours before the test. Take that day's Levo after the test.

Come back with new results (include reference ranges as well as results) and we can help further.

[nettiboo1982 in reply to SeasideSusie]

Thank you I will look into this.

I had my levo increased too 150mcg in pregnancy and I developed sinus tachycardia so my dose was dropped to 100mcg but my heart rate didn't drop till after I had baby.

My dose was increased back to 125mcg and I've been there till recently I've had to reduce to 100mcg. Maybe it's time for and endocrinologist referral

[SeasideSusie Remembering in reply to nettiboo1982]

nettiboo1982

Choose your endo with great care, many are known to have made patients worse. Most are diabetes specialists with little to no knowledge of thyroid disease and how to treat it.

You can send for the list of thyroid friendly endos from Dionne at ThyroidUK:

[e-mail]

You can always ask on the forum for feedback to be sent to you in a private message on any that you can travel to (we can't discuss individual doctors on the forum).

It's possible an endo will refuse a referral if thyroid test results are within range.

[SlowDragon Administrator in reply to nettiboo1982]

Bloods MUST be retested 6-8 weeks after any dose change

When dose is reduced, frequently vitamin levels drop as direct consequence

Do you always get same brand of levothyroxine at each prescription

What vitamin supplements are you currently taking

Always get FULL thyroid and vitamins tested and results back BEFORE considering making an appointment with thyroid specialist endocrinologist

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

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

Is this how you do your tests?

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

List of private testing options

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

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/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Come back with new post once you get results

[JAmanda]

When I am under medicated i get awful peripheral neuropathy in feet.

[FancyPants54 in reply to JAmanda]

I've had it since November 2019. Stinging, tingling, burning and sort of numb at the same time. At night in bed my feet seem to burn and my shins. It's horrible. I'm sure it's because I'm under medicated. It's not my B12.

[JAmanda in reply to FancyPants54]

For me it's not vits but you'll only know when your vits and meds are optimal I guess.

[Sk19]

Hi when I was diagnosed as under, I had burning joints. Had numerous blood tests until 1 day I went back to the GP. I hadn’t been tested for Vit D & it turned out I was severely deficient <15. I was prescribed 1600ug of Vit D and it took a while to subside. It could or could not be this for you? I’m only giving my opinion to similar issues I had with the burning sensation. Hope you get it sorted.