Newly diagnosed with hypo, possible cause of tingling legs?

Hi everyone. I have just been told that I have borderline hypothyroidism. My TSH is 9.8 and the Free T4 is 0.93.

In March 2014 when my legs (and lower body) started to have sporadic strange tingling/buzzing/pins and needles feelings I had a variety of bloodtests, MRIs and saw a neurologist. The blood tests showed low Vit D and I have been on supplements since then. My TSH was 4.37 and no further action was taken. MRIs did not show any nerve damage or anything touching the nerves (although I have had back problems most of my life) and the neurologist only said that I had some weakness in the my legs but no further diagnosis.

As a 'lady of a certain age', I had put other symptoms I have been having (dry skin, thinning hair, brain fog) down to the good old menopause! Could it be that, in fact, I have hypothyroidism which is causing this instead?

I have been started on a daily dose 25mcg of levothyroxine and will be tested again in 6 weeks. I also have been told to take Vit B complex (Vit B12 was low side of normal from the blood tests). I always react very badly to tablets, with even vitamin supplements upsetting my stomach sometimes if they are very strong, and I am unable to tolerate magnesium which my Dr thought I should be taking as well.

I am British but living in Spain without any health cover, so pay privately when I need treatment. My (Dutch) Dr is very sympathetic and will do any test I think necessary. In my next appointment should only TSH and Free T4 be tested, or should I ask for any other tests?

33 Replies

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  • Milly1958 My guess is that it's the low B12 causing the tingling. You've mentioned that it's low and that you've been advised to take B Complex. There probably isn't enough B12 in the B Complex so it would be a good idea to get something like Jarrows or Solgar sublingual methylcobalamin lozenges - as they're sublingual they wont upset your stomach, you just let them dissolve under your tongue and they bypass your stomach. Do you have your B12 result? Depending on the result you may need 5000mcg or 1000mcg of the sublingual lozenges.

    ETA: Forgot to say, continue with the B Complex alongside the B12.

  • My Vit B12 result was 345 pg/ml when the 'normal' range is shown to be 180 - 850. My Dr says in Holland the minimum level should be 400, not the 180 that the Spanish lab says so that's why she said I was low. The tablets she gave me had 500mcg of B12 but also contained magnesium which I don't tolerate very well. So I then bought the B complex, but I see they only have 9mcg each of Vit B12 so it looks like I do need to supplement these.

  • Optimal for B12 is 1000, no matter what the range says. A level of 345 is dangerously low, and you could end up with irreversable neurological damage if you don't do something about it. 500 mcg will do nothing to help, it's much too low. You need more like 5000 mcg + the B complex containing all the Bs to balance them. You can find good sublingual methylcobalamin (B12) on Amazon, by Jarrows or Solgar.

  • Hello. Get some magnesium oil so you do not have to take tablets like me. 500 magnesium citrate a day is a good amount. I agree with seaside that you should get you Bvitamin levels up for sure and make sure your Vit D is optimal. Just because you take supplements of D does not mean you are getting enough. Have your T3 free, T4 free, tsh and those above Vitamins and mineral tested. I would also add Iron, ferritin and folate levels to be tested. Unfortuantely thyroid disease patients have a hard time keeping certain nutritents up for some reason but your thyroid meds will not work as they should without your levels all being optimal first for proper absorption. you need enough magnesium and vitamin d and the proper ratio of them and calcium to absorb calcium properly as well. It is crazy how everything works together. Take Vit K with your D as well. I have had all the symptoms you have in the past.

  • Because of low stomach acid. :)

  • What is good to increase your stomach acids then?

  • Ummm... some people use apple cider vinager in orange juice before meals. And there's something called Pepsin and Betain on Amazon that you can take. But I'm not an expert in that, because I've never had digestion problems - well, got to catch a break somewhere! lol

    Try posting a new question about that, and lots of people will be able to help you with suggestions.

  • Thank u.

  • Michy1 There is Betaine HCl plus Pepsin supplement which are capsules you take during a meal - see here and scroll down to the Betaine HCl Challenge scdlifestyle.com/2012/03/3-... but they didn't work for me although some people get on well with them.

    I use organic apple cider vinegar ethicalsuperstore.com/produ... To make it palatable you can put some honey in warm water then add the ACV, I use it before breakfast and again before my evening meal. Gradually work up to one tablespoonful of ACV. It has to have the 'mother' as that contains the enzymes.

  • I was using ASV before, but did not see anything happening, so stopped it. Thank u for that though.

  • Michy1 Did you use an organic one with 'mother'? Maybe Betaine HCl will work for you.

  • Yes it was organic with mother.

  • Michy1 What about Betaine HCl with Pepsin?

  • Will try that. Thanks.

  • What you need is :

    TSH

    FT4

    FT3

    TPOab

    TgAB

    ferritin

    So, try asking your doctor for those. That will give you a better idea of what is going on.

    With a TSH of 4.37, you most definitely are hypo. But, as Susie says, it's more than likely the low B12 that is causing the tingling, etc.

    Lower back problems can be due to low thyroid hormone.

  • 4.37 was the result 2 years ago .... I am now 9.8!

    I have acid reflux at times, so would that indicate I have enough of the stuff? I certainly feel I have too much sometimes.

  • Well, then, why do you doubt that you're hypo? You are hypo as soon as your TSH hits 3!

    The symptoms of low stomach acid are the same as high stomach acid. That's why doctors can't get their heads around it. It's far too complicated for them! lol

    Hypos usually have low stomach acid, which causes acid reflux because of the undigested food fermenting in the stomach. The volcanic eruptions of the resulting soup, cause the contents - with what little acid there is - to flow up into the œsophages - i.e. acid refux.

  • I have read that a high TSH isn't the whole story, hence the need for the other tests you have suggested. I wish now that the 4.37 of 2 years ago had resulted in more investigations. This has all just happened in the past few days so I am driving myself just a little nuts researching more about it and this is all new to me.

  • Yes, of course. None of us are born knowing all this. And we don't do it in school! lol I always thought my education left out all the important subjects...

    No, the TSH is a pretty useless test, actually. Even the man who invented it said so! It should never be used alone. The important number is the FT3, because it's low T3 that causes symptoms, not high TSH. High TSH is the result, not the cause.

  • At next tests ask for Free T3 and Free T4, plus TSH. Free T3 is the active hormone and checking this will show how well you are converting from Free T4. Also good idea to get both types of thyroid antibody checked - TPO Ab and TG Ab. If either or both are high then this means you have autoimmune thyroid called Hashimoto's. (If Hashimoto's then going on gluten free diet may help)

    Vitamin D, B12, folate and ferritin all need to be at good (not just average) levels, for thyroid hormones to work. Living in Spain your Vit D ought to be good, but you might be surprised. Once supplementing with B12, checking will just confirm that you are taking enough ( hopefully)

    So get these checked and get the actual results (with ranges). Post a new post and members can advise.

    Magnesium is notorious for causing loose bowels. You can get magnesium spray for your skin, or Epsom salts for adding to bath, or foot bath. I use "Better you magnesium butter" (as well as Natural Vitality Calm magnesium powder as a drink)

    Magnesium butter has added advantage of improving dry skin.

    Your Dr seems enlightened to suggest you need magnesium.

  • Thanks for your comments and suggestions. My Vit D was 38 ng/ml with the recommended level being between 30 - 100. I can easily up the dosage on that.

    Magnesium was low at 1.74 (normal levels 1.9 - 2.8) and calcium in the normal range 9.8 ( normal 9 - 11 mg/dl). Not sure how they measure these in the UK but you can see how the results sit with the apparent 'normal' ranges on the tests I have had.

    I also have inherited high cholesterol, although my results were pretty good this time compared to previous years. I take Omega 3 fish oils for that.

  • High cholesterol is caused by low T3 - it's a hypo symptom. And it is in no way a problem. You don't need to take anything for it.

    Finding some form of magnesium is a good idea, because if your serum magnesium is below range, then you really are deficient. Also, magnesium works together with vit D. They need to be kept balanced.

    Don't worry about your calcium. Taking vit d will increase absorption from food. And, for that reason, you really need to take vit K2 with it, to make sure the calcium goes into the bones and teeth, and not the tissues.

  • I have just ordered the sublingual Solgar Vit B12 so that's a start. I agree that I must find a way of taking magneiusm and will have a look at the suggestions made above.

    The high cholesterol is familial and I've had it a long time (I presume before I was hypo). I've given up worrying too much about that in recent years but do try to eat healthily.

  • Well, I'm always doubtful when people say that their high cholesterol is familial. Hypo also runs in families, you know.

    How much B12 did you order? The 5000 mcg tablets?

  • I ordered the 1000mcg which was twice what my Dr recommended. I also understand that the sublingual methylcobalamin is absorbed much more effectively than the Cyanocobalamin which was in the original pills given to me. I didn't see the higher dose when I originally searched for it, so I shall have to see how it goes. If I am intolerant like puncturedbicycle below I shall have to consider asking if I can have injections.

  • Yes, doctors always give the cheaper versions - the ones that don't help at all! And very low doses. They just have no idea! Both Solgar and Jarrows do a 5000 mcg version.

  • It's the tablets my Dr takes herself, as she bought them off me after I said they didn't agree with me due to the added magnesium! I have already learned a lot from this forum - all very useful stuff. Hopefully I shall be much better informed when I return for the next lot of blood tests next month.

  • Oh dear! lol Not a very good advert, is it! Never mind, when you go back, you will be able to explain to her how to dose B12! Don't forget the B complex!

  • If b tablets don't agree with you you could self-inject. I was taking a b complex that made me so nauseated I felt I had to go back to bed, but injections work better for me (better symptom relief) and there are no side-effects.

    But as for 'borderline' lol, you are hypo. No borderline about it. On such a small dose you may feel worse until your dose is raised. Keep on top of it and in six weeks if your tsh is not reasonable (you want to see it much lower and feel some relief from your symptoms) ask for an adjustment.

  • Yes, lack of B12 does cause tingling, but your TSH is too high and although I don't know the FT4 ranges in Spain, it looks as though that is too low. Your TSH should be around 1 to feel well.

  • I have suffered with this weird tingling /buzzing sensation all over my body for the last 8 months. You have my sympathies. During this time I've also been unstable in that my daily levo has been changed in dose every 8 weeks. It's a truly horrible sensation and is always worse when I try and rest.

    However, :) after much effort in terms of vitamin intake I have been tingle free for the last 3 days. I'm not counting my blessings quite yet, but for the first time in an age my body seems peaceful.

    Not sure if the correct levo dose and increase in vitamin intake or something to do with a change with me being perimenopausal, but for now I feel OK!

    Now, if I could just get rid of the tinnitus life would be good :)

  • Glad that I am not the only one that's been vibrating kyoto ....lol... except I've had this on and off for over 2 years now. I have tinnitus too .... goodness I sound a wreck! But I have got used to living with that for 20 years after a very bad inner ear infection, my hearing never returned to normal.

    What vitamins do you take? Must admit although I am only on my third day of levo my legs ache even more and the buzzing sensation seems worse, which is a disappointment (oh and my wee has gone fluorescent lime green today .... maybe the vit B complex???)

  • Super interesting that B12 is the reason for tingling / numb legs! I had this about 1.5 years ago, I know I have an issue with B vits as although my levels are fine (B12- 673) at the moment, my body lacks the correct enzymes for methylation (found via gene testing).

    I used to also get dizzy at the time, but I suffer from low blood pressure!

    Nice to be able to keep tabs on this.

    It's so frustrating how bad the "normal" ranges are for results when generally they are way too low & then when you are low in the normal ranges, the DR still says - You're fine???

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