Underactive Thyroid and leg pain

[jopratt75]

I have had an underactive thyroid for over five years but in the past twelve months my levels have been all over the place. I currently am experiencing pains in my lower back, groin and down my legs to my knees. My legs also feel weak. Doctors think it is low Vitamin D, which I was put on medication for last year, but once I had taken the 3 month course wasn't given anymore. This week I have been put back on a maintenance course of 1 dose a month to see if it helps with the pains but know this is not going to be a quick fix. Has anyone else experienced this, as I am so stressed out with the pain and its making life very difficult.

[elwins]

Have you had your vitamin levels checked recently, people who are more experienced will comment further. You need to find out what your levels are so you can be on the correct dose.

[jopratt75 in reply to elwins]

I haven't lately, at my last blood test in January levels were back up, but doctor says its something I have to keep maintained in order to prevent going back down again and I haven't been doing that till now. I think I might suggest another blood test to check them.

[SlowDragon Administrator]

Always get copies of blood test results and ranges

Do you have Hashimoto's also called autoimmune thyroid disease diagnosed by high thyroid antibodies?

Low vitamins are extremely common, especially with Hashimoto's

About 90% of all primary hypothyroidism in Uk is due to Hashimoto's

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need enhanced access to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up. They can make nominal charge for printing but many will do so for free (£10 max)

How much Levothyroxine are you taking

Can you add most recent results and ranges for TSH, FT3 and FT4, plus have you also had thyroid antibodies tested

Also helpful if had folate, ferritin and B12 tested. Add results and ranges if you have them

Low vitamin D is extremely common when hypo. You will likely need a daily maintenance dose

How low was it when first diagnosed, how much are you now taking, and what was levels recently

Standard 800iu vitamin D is often inadequate dose

[jopratt75 in reply to SlowDragon]

I don't have Hasimotos. I originally had over active thyroid (graves disease) but had to have radiation on my thyroid as I was allergic to the medication which pretty much destroyed my thyroid and its function.

I am currently taking 125mg of Levothyroxine which is holding my levels steady for now.

I have my results from my Patient App, these are my recent levels:-

TSH 2.01

T4 18.7

T3 5.7

Vit D was 20 at last check on my results list. This has not been re-checked following the end of my original medication in January when I was taking a weekly dose (sorry don't know strength but I was told quite a high dosage)

Ferritin 31ug/l

[SlowDragon Administrator in reply to jopratt75]

If you are in UK and results are in nmol then 20 mcg is far too low.

Aim is 75nmol minimum and around 100nmol is better

Ferritin looks low. Do you have the range. Needs to be half way in range. Eating liver once a week should help improve

Suggest you get B12 and folate tested too

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

[e-mail]

Also request list of recommended thyroid specialists, some are T3 friendly

Professor Toft recent article saying, T3 may be necessary for many otherwise we need high FT4 and suppressed TSH in order to have high enough FT3. Note his comments on current inadequate treatment following thyroidectomy or RAI

rcpe.ac.uk/sites/default/fi...

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

(Many of us need TSH nearer 0.2 than 2.0 to feel well)

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

[jopratt75 in reply to SlowDragon]

Thank you for all the information, I think I need to make another appointment with my doctor and request all these tests are done. I feel that they just fob me off by altering my Levothyroxine dosage and crossing their fingers. They don't really take into account all the other problems that are associated like the Ferritin and Vitamin Deficiency's.

I bought some Multi Vitamins but I'm not sure if it is safe for me to take them alongside my medication.

[SlowDragon Administrator in reply to jopratt75]

No multivitamins are not recommended, too little of anything useful and iodine may be a problem

Many on here with Graves (even after Thyroidectomy or RAI) have found gluten free diet helps. Might be worth considering

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

[jopratt75 in reply to SlowDragon]

Thank you for all your very helpful advice. I won't take the vitamins in that case.

Definitely worth considering, I will do anything that makes me feel even a little bit better as I am exhausted both mentally and physically by this debilitating condition and feel that there is no end in sight to feeling well again

[SlowDragon Administrator in reply to jopratt75]

Getting vitamins optimal is first step.

Testing before and after. Also worth checking Thyroid antibodies

See if gluten free helps (give it 3-6 months ideally) . If you have high antibodies (not sure if that is even possible after RAI) then gluten free diet likely to help

Really need ranges on those FT3 and FT4 results, but FT3 doesn't look low. But TSH is higher than normally recommended