Such bad pain in legs - could it be NDT or supplements?


I am about to get latest blood tests done but whilst waiting for the results I was just wondering whether anyone else has experienced terrible leg, feet and back pain? I have quite a high pain barrier but this is really stopping me from doing things!

It is similar to the 'stretchy muscle' pain that you get when you are bending over to touch the floor, whilst keeping your legs straight. That pain up the back of the legs is there all the time, in bed, standing, sitting etc there is just no let-up from it and also in feet and lower back!

I keep asking myself 'could it be worsening symptoms from taking NDT' which I have been on for 6 weeks, or maybe the side effect to taking certain supplements (I take B-Complex with folate, Omega-3, Evening Primrose oil, magnesium, D3 and vit K combo, some zinc and vitamin C and Iron when I remember (as it has to be taken away from food).

Has anyone else had this type of pain, really quite debilitating, and if so what they did to ease or resolve it!

I am taking 2x grains of NDT atm and prior to that the GP would only prescribe me 50mcg Levo and would not increase it so I had no choice to self-medicate as I have so many symptoms!

Thanks in advance

jbthyro x

14 Replies

  • I had extreme leg pain when added vitamin D. Only slowly fading after 3-4 months, now almost gone after nearly 6 months. (See profile)

    Are you gluten free? Do you have Hashimoto's?

  • I do not have Hashimoto's but am celiac so have been gluten free for almost 7 years and adhere strictly to the diet.

    I have been supplementing Vit D for many months now because blood tests showed that despite spending lots of time outside in the summer months my vit D was in fact lower than in the winter when I was supplementing so I kept the Vit D supplements going throughout since July.

    I will be getting results in blood tests for Vit D too, so I will check that , but will also stop the Vit D for now to see if it eases it.

    Thank you SlowDragon

    jbthyro x

  • My vit D was down in low 30's. Probably due to undiagnosed coeliac/gluten intolerance.

    Been supplementing at 6000iu for 6 months. (And lots of sunbathing too on gastroenterologist recommendation. 😎)

    Most recent test - vit D now at 99. So cutting D supplements back slowly. Will be retesting to see how much I need to take to stay level. Probably about 3000iu

    I find vit D oral mouth spray by Better You is good (I have poor gut absorption)

  • My vit D was 19 so very low, and had already been on gluten free diet for 6 years at that time but I guess absorption may always be an issue for me!

    I will look into the Vit D oral mouth spray, do you still take Vit K2 with it?

  • Yes and magnesium too (vitality calm magnesium powder - I started low and slow)

    Much to my surprise my gastroenterologist was keen that I took both magnesium and selenium.

    I thought he might view both as too "alternative"

  • Yes, I take Magnesium already, but have wondered about selenium.

    Wouldn't it be brilliant if more doctors started looking at the diet and minerals/vitamins to help us to repair our bodies?

    Thanks SlowDragon x

  • I think it would be a bloody miracle!!

    I told my GP Hashimoto's was primarily a gut/digestion & low nutrient problem. He looked at me like I was completely barking.

    Similarly neither he nor my endo would believe my inability to walk was anything to do with my Hashimoto's.

    Gastroenterologist was completely "on board" right from first appointment when I struggled in barely able to walk at all.

  • Maybe I need a Gastro then, discharged from celiac consultant after 2 visits, said goodbye and good luck!!!!

    It has been totally up to me to find out what I need to do next and then realised I had thyroid issues too!

    Feel so alone with it all and really don't know what I would have done without this amazing group!

  • I saw gastroenterologist privately. (So get good service)

    He referred me on to NHS dietitian after endoscopy.

    NHS has lost my DNA test results 😒

  • ugh that is crazy!

    I saw a dietician, twice, but they just looked at my diet and said it looked fine! No other advice offered!

  • DNA test was for research data into non coeliac gluten intolerance

    Yes dietitian appointment was complete waste of time.

  • You can get vit D postal blood test for £28 from City Assay

  • ah, brilliant, thank you SlowDragon! x

  • Do you take your supplements well away from thyroid hormones, i.e. around lunch or dinner.

    Have you gradually increased up from 1/2 grain NDT to 2 grains? If you still have symptoms I'd try increasing every two weeks till you have relief of all symptoms. If you take too much you'll have symptoms which means you should reduce. If nothing has improved you might need T3 only. 1 gr NDT is (in effect) between 75 an 100mcg of levo.

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