Subclinical hypothyroid, B12 deficiency - any connection???

Well, completely unexpectedly today I got blood test results showing I am 'subclinical hypothyroid', according to "Thyroid Disease" by Mark Vanderpump. Apparently, according to him, having a high TSH with a low T4 puts me in that category.

My actual results were TSH 5.2 (highlighted as high) and my free T4 was 10. This is normal, but on the low side as the bottom of the range is 9, so not well into normal by any means.

The GP I saw - not my own - was of the opinion, I think, that if I was showing symptoms I might want to treat it, although she was at great pains to point out that "they wouldn't normally consider this result as needing treatment". She said I should discuss it with my GP, who will LOVE this, since he only gave me the test because I asked for it, and we'd had a big fight over other testing, so he was humouring me.

My confusion is this. I have a rare neurological condition, Trigeminal Neuralgia, incurable and degenerative. I felt that it might be B12 deficiency related, had another big fight over testing for that, and to cut a long story short, ended up being treated for B12 deficiency, even although I didn't merit it, as far as the NHS was concerned. Lo and behold, my TN has indeed responded, spectacularly, to B12 treatments. Since then I have been trying to make sense of this B12 connection, as I feel sure there is one, of an autoimmune nature, if I could just get to the bottom of it. I have explored coeliac and other malabsorption issues, but so far they have been a dead end.

So I'm wondering, does B12 and thyroid have a connection? If so, what is it? I have had gastric problems for upwards of fifteen years, gallstones and then this, the TN. I feel sure they are all part of a pattern. I did NOT expect thyroid to play a role in it, but it looks highly suspicious that it might.

Before I tackle my disbelieving doctor yet again, does anyone have any connections to offer for B12 and thyroid and how it may fit with gastric problems or, indeed, neurological problems? Any connections most gratefully accepted, especially if they are from reputable, i.e. scientifically sound, sources!

Thanks!

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  • Chancery, if you've had gastric issues for years then B12 deficiency may be due to malabsorption if pernicious anaemia has been ruled out. Hypothyroid patients often have low stomach acid which makes breaking down of food and absorption of nutrients suboptimal and can lead to low B12 and deficiency. Ferritin, vitamin D and folate are also often low in hypothyroid patients due to malabsorption so it may be worth asking your GP to test them and perhaps, thyroid peroxidase and thyroglobulin antibodies to rule out autoimmune thyroid disease (Hashimoto's) as a cause of your hypothyroidism.

  • Thank you for the low stomach acid suggestion, Clutter. This is one that I felt has fitted me, but didn't know how I could justify my theory to my doc - so thanks for that! I don't suppose you know of any links to where that may have been researched or written about?

    I have felt the B12 issue was one of malabsorption right from the start, but it was pooh-poohed by my doctor (you can tell the fun times we have). It doesn't help that he doesn't believe in the B12 deficiency to start with, because there is no formal study able to link my trigeminal neuralgia to it with a stamp from God on it; getting better on B12 therapy when strong drugs didn't work apparently doesn't count. Forgive my bitterness...

    I have oesophagitis, diagnosed by him after many years (my doc, not God!) and that CAN be caused by low stomach acid. If I can show the connection between low stomach acid and my thyroid then I DO have a pattern - at least a good enough one to present, showing low stomach acid (caused by thyroid?), leading to malabsorption, leading to B12 problems, leading to TN and also causing oesophagitis. I haven't fitted gallstones in there, but it's a start!

    If you can think of any authorities that may cover the topic of low stomach acid I will be eternally grateful. Thanks.

  • Autoimmune gastritis is a common associate of autoimmune thyroid disease. Resulting in lowered stomach acidity and reduced production of Intrinsic Factor.

    Many hypothyroid people take various enzymes because they feel their pancreas is not producing sufficient to digest their food.

    The whole gut can become somewhat atrophic - though this is only usually discussed in cases of severe, long-term hypothyroidism. Nonetheless, impaired ability to absorb B12 seems not at all unlikely.

  • Autoimmune gastritis? I've never heard of that - many thanks for the tip, I shall look it up. I've always felt there was something wrong with my parietal cells (don't ask - it's embarrassing) but when we tested for parietal cell antibodies we drew a blank so my doc felt that meant they were all ok. Me, I was never entirely convinced; I still think they may play a role. I feel that I've read somewhere they are responsible for releasing stomach acid (or play a role in it) so maybe I've been right all along.

    Anyway, that's a good lead, thank you, Helvella, I'll get back on the poor, sad old research horse again. For the umpteenth time...

  • You also need a FT3 test as well as the anti-bodies Anti-TPO and Anti-Tg - as suggested by Clutter. If you are having B12 injections - then it is also good to take a GOOD B Complex to keep all the B's in balance. How is your VitD ? Also Ferritin - folate - Iron ?

    There seems to be a link between thyroid and gallstones - due to the slowing down of everything including the removal of cholesterol from the liver. Stones often contain cholesterol. When you think that almost every cell in the body - almost 30 trillion - have receptors for T3 and VitD - then it makes sense that when they are low in range that things will begin to go wrong. T3 is the most ACTIVE of thyroid hormones.

    Most people in the world who have thyroid illness have Hashimotos - the auto-immune version - so knowing which comes first is difficult to confirm. Most conditions begin with an unhealthy gut - so that may account for mal-absorption of so much that is important including B12. There are over 300 million sufferers in the world I believe.

    Just a shame Docs are not up to speed - and they are certainly nervous of dealing with AI issues.... If you type B12 Thyroid into the Search Box on the green bar above you will see plenty to read. Then TMJ - and then gallstones.... :-)

    Also look under the heading Related to the right of this page - and then under the heading Topics. Lots of reading :-)

    healthunlocked.com/thyroidu...

    ncbi.nlm.nih.gov/pubmed/203...

    I am sure you know about Pub Med - where research papers are held. If you google - say low stomach acid and thyroid PubMed - articles will appear. Hopefully this will help you find the information you need for your GP.

    Am not a medical person - but you can click onto my name and read my edited ? Profile - it's been a bumpy ride :-)

  • Hi again, Marz. Many thanks for all the links and info - very useful, as your stuff always is. I am just about to do a PubMed search and see what I can find and if there are any profitable connections. I thought I'd come and see what sufferers had to offer first. I find that you can shortcut wading through a lot of nonsense if you go to 'those in the know' first. It stops you going off down dead ends and reading a lot of unsubstantiated crank pseudoscience.

    Unfortunately, I got the only two tests my local NHS offers. However, now that I have been highlighted as 'subclinical' I am hopeful that I can get a thyroid antibody test, as this will eliminate the possibility of an autoimmune attack on the thyroid, and also give a better picture of whether I should pursue treatment or not.

    I am not keen to rush into treatment for two reasons. One, I am on strong medication which makes it impossible to know if a therapeutic trial is actually doing any good or not, and two, I am hopeful that maybe coming off this medication, along with better diet, might help to put my thyroid readings back into the normal range. I REALLY do not want to add more meds into my list, but we'll see. One thing at a time.

    As for my Vit D, I really do not know. I have been taking a multivitamin, which I'm guessing might have made that figure healthier, but if I DO have malabsorption issues it may not really be getting used. Another reason why I need to get the possibility of low stomach acid properly investigated.

  • In Japan, they supplement B12 if your level is below 500. They have the fewest cases of Alzheimers Disease in the world - coincidence? Here's a good article drjaan.net/veg/b12.htm

  • Yes, Winegum, I know. I actually used that fact in my dossier to convince my doctor to give me the treatment! But I didn't know they had the lowest incidence of Alzheimer's. That really is interesting. Unfortunately, it's anecdotal, as it were, because there are so many other factors about the Japanese diet/lifestyle that could be causing that, but you really do kind of feel that good B12 protocols is the reason, don't you?

  • Great link, Hismum. I'm beginning to get a picture for the low stomach acid connection. Now all I need to do is find out WHY it's doing it!

  • Stomach acid is secreted by the parietal cells that line the stomach - along with Intrinsic Factor. As we know T3 is needed in every cell of the body - including the cells of the stomach. So if your T3 reading is low - that could well be part of the answer....your cells are sluggish.

  • Yeah, unfortunately they don't test for T3 on the NHS, Marz, so I've no idea if that's the problem. It's REALLY frustrating. I've felt for a long time that my parietal cells were the problem, but unfortunately I discovered this in an airy-fairy way (don't ask) and made the mistake of telling my doctor. NOT a good idea. Now, of course, he won't take anything I say about them seriously. I had a negative result for parietal cell antibodies though - would that not indicate they were okay, or is that totally irrelevant? Sorry, I need to research this more. I am asking embarrassingly ignorant questions here.

  • ..absolutely not - that is why we are here to read and learn :-) I have read on the PAS forum that the intrinsic factor test can be unreliable. Surely your Doc must know that T4 is a storage hormone - just like Ferritin is stored iron. It is T3 that is needed in the 30 trillion cells of the body - where it is active....and keeps the cells going - along with other stuff like oxygen. Next time you have your tests with the Doc ask if you can pay for the FT3 test yourself if he's worried about money - that should confuse him !!

    I expect you have read the Guidelines for B12 and Folate treatment - where clinical signs must be adhered to :-)

  • Yes, I have them all printed out in a glass case! I'm kidding, but yes, I more or less know the damn things off by heart. I had to go through them with a fine tooth comb to convince the doc to treat me. But it worked, so no complaints.

    I'm too new to thyroid. I need to do a LOT more research. Since speaking to you last I've established what the thyroid antibodies are and they're not related, so that's good. I think that's the first thing I ought to do, is get the thyroid antibodies tested, and I might slip in testing my iron, casual-like, since it's never been tested. He might let me away with that.

    I feel the most important thing for me is to have my stomach acid tested, although God alone knows how they do that. The internet is full of weird tests that would crucify my oesophagitis so they won't do. I think it's going to be hard science - assuming they have any!

  • ...sadly hard science is flawed as most research is sponsored by Big Pharma ! It then has to be peer reviewed in order to be published - so if your research does not follow the current mode of thinking then you are doomed ! The book - Doctoring Data - by Dr Malcolm Kendrick was an excellent read - which highlights all those issues. I read your piece on the PAS forum - and it read well. Ah ! gallstones - yet another thyroid symptom. Lowered metabolism again......

    I personally think the sooner you treat your thyroid the better - maybe all these other symptoms will be relieved. It's not a drug after all - just something your body is lacking ......so a replacement :-) Getting the treatment right and balanced can be challenging so you are losing valuable time in my non-medical opinion.

  • Hi Marz. Yep, you are spot on the money about the big pharma obstacle. Personally I think they are a bigger obstacle in the way that they suppress information they already know because it doesn't look good - like the bad effects of statins, for example. They also completely skew research by buying all the good research scientists and deliberately obstructing the development of treatments that are too cheap or not patentable. Hell, we could be here all day trying to list their evils!

    But thank you for the Malcolm Kendrick book. I read his 'cholesterol con' book and thought it was first-rate. I had no idea he had another out. I'm going to read that.

    And I absolutely hear what you are saying re treating the thyroid. I keep swinging one way or the other myself, but rest assured that unless the stats drop into a good healthy picture, I WILL treat it. I just want an accurate picture of its results when I try the 'therapeutic trial'. As I am particularly keen on the cognitive and emotional effects of treatment, I want to be off these drugs I'm on as much as possible beforehand. I haven't said no to treatment - not at all - it's just postponed.

    Thanks again for the Kendrick title - I love getting new books by authors that I value; they always cheer me up that some doctors do think about medicine intelligently and with an open mind.

  • drmalcolmkendrick.org/

    thincs.org/Malcolm.htm

    Glad you are a fan. With regard to the cognitive and emotional effects of treatment it may be worth considering that there are more receptors for T3 in the brain than anywhere else in the body....the gut I think the second highest amount. So that is a lot of T3 to go around when things are low :-)

  • Ooh, what a treat, a collection of essays, and I see one on NICE guidelines on his website (didn't know he had one, by the way, so thanks for that). I hope he questions some of the bland middle-of-road treatment protocols they extol. The play it so safe they actually become a danger, and many of them seem to be based on guidelines that haven't been questioned since 1954, or possibly 1932.

    I confess I know zero, less than, about T3, or any of the thyroid hormones (is that right? God, I don't even know that). I have been caught on the hop with this 'diagnosis' (I'm sure my doc will disagree with it!) so I have had no time to get reading yet, but I will. But I am wondering if the T3 receptors are in the gut wouldn't that mean they too could be damaged by low stomach acid and it may cause a problem with them?

    I really do need to get on the research. Maybe I shouldn't be thanking you for tempting me away with Kendrick essays!

  • Don't think so.... the stomach is one bit - containing the parietal cells where proteins and other foods are broken down. The digested food then passes into the duodenum. This is the beginning of the gut/bowel where absorption and assimilation takes place. Having low thyroid hormones affects every cell in the body - so the slow motility of the gut is common in people with thyroid problems.

    The immune system also follows the route of the gut.... ( O level Human Biology stands me in good stead !! ) I also have had loads of surgery for Crohns/TB so have had a special interest in guts and their wellbeing :-)

    Going to the main Thyroid UK website may be helpful for you if you wish to learn more about the thyroid hormones. It is a wealth of good information...

    Have a good Sunday - lots of reading I expect.... :-)

  • Thanks, Marz. Yeah, I've already been in at the Kendrick site, requested the book, read the Kindle sample and now I intend to hit the thyroid UK site. It's all fun, fun, fun all the way!

    P.S. I had indeed called you Marre (see other post) but I have put you dead to rights now. Sorry again, it's drug brain...

  • :-) :-)

  • I asked for, and got Free T3 and Free T4 tested on the NHS in Scotland, but the gp's in our area are only allowed to prescribe T3 if and endo says so. Luckily mine has said so.

  • That's good to know, Barb, although whether my doc would buy into 'Barb says it's ok', I don't know! Joking aside, it is good to know I can get them if they might prove helpful for better diagnosis. At least I can say with authority that they are available in Scotland.

  • Generally the gp's will do the T4 test if your TSH is low, if you can convince yours to ask for freeT3 it is still down to the labs. They often refuse to do this test. I think they are more likely to do it if an endo asks for it. I am sure mine was done because my TSH is supposedly suppressed. Hardy surprising since I am taking 200mcg levo, and everything else came back very low, iron, ferritin, folate, B12, D3 etc, etc.

  • I find this thing of the labs making the decision absolutely flabbergasting. I'm incredulous. I'd love to ask who ever thought it up what they thought they were doing, exactly. How can a lab, who doesn't see you, know if you need a test or not?

    I know my doc has had to put an explanation to teacher on mine two or three times because otherwise they wouldn't be allowed. I was retested recently for coeliac, with a different test because I had low IgA, and the doc had to discuss it with the biochemist first, then come to me, have a fight with me because I still wanted it, then go back to him and ask for it to be done, with an explanation (no doubt that I was difficult and crazy!) because the biochemist didn't think I needed it. And all this is done without the biochemist having the first idea of my health or illnesses. How does that make any sense?

    Rant over.

    I feel that I should be asking for Vitamin D and ferritin, and other thyroid related things I hear bandied about, to be tested but I haven't a clue and I'm a) terrified to ask the doc for more tests without good reason and b) do the WRONG tests and waste my doc's last remaining good will towards me on something useless. I need to get reading...

  • Not for one minute defending the current way things happen, but...

    It is good that a lab which sees, say, a very high TSH result might decide to do a Free T4 test without being asked. (Though extremely rarely a Free T3 as well.)

    It can also make sense that a lab doesn't do a test - if an earlier test has ruled something out (or already proved it). But the interplay between doctor and lab, which should include the lab explaining themselves to the requesting doctor, has all too often broken down.

  • I agree, Helvella, especially when it comes to testing for the - what's the name for them?; I've got really bad drug brain tonight - it's something like 'the unhealthy well', which can't be right?! I mean testing people who are healthy but who have read an article in the Daily Mail and think they SHOULD be tested as a precaution. I think that the labs being discriminatory is very important here - although you do have to say the docs should have the gumption to say no themselves. And the government needs to take some of the rap on that one, with their screening madness. But I've had two cases now where the lab itself has highlighted low results (IgA) and high results (TSH) and in the first instance I had to fight both the doctor AND the lab to get a different test done, and was told by the doctor in the second instance that they wouldn't treat the thyroid 'problem', although every book I've consulted since has classed it clearly, no confusion, as "subclinical hypothyroidism", although admittedly they do seem to disagree on whether treatment is beneficial or not at that stage.

    It makes me wonder though why the lab bothers to highlight high and low results at all if they are not red flags. When you go home and check them, with reputable sources, not asking people on forums where there may be some 'bias', they say 'Nope, not a good result. This should be investigated further/treated', you have the devil of a time trying to convince the lab/doc to do it.

    When I had the low IgA result in my - I thought negative - coeliac tests, I discovered it completely by accident, well after the event (more than a year after!). Every single book I checked, even the NICE guidelines, said it needed to be retested with an IgG test because having low IgA could produce a false negative, but I had the worst fight ever with my doctor, who had been told by the lab that it was totally unnecessary to retest, because it wasn't "low enough". The same lab that had marked it as low.

    It's a weird situation to be in, to be being given results that are flagged, having to check them yourself because the doctor calls EVERYTHING 'normal' and then you have to fight on all fronts to get the low/high thing taken seriously. It makes you wonder why they do blood tests at all, yet they themselves will ONLY treat on the strength of blood tests. It's like being trapped in a Kafka plot!

  • Kafka tends to have characters who are continually harassed and investigated - rather too many here simply get ignored. :-)

  • It's the New Deal Kafka. They haven't got funds to investigate us - they're just cutting us off before we get started!

  • Generally low stomach acid has a correlation to undiagnosed gluten intolerance. Try going gluten free to see if it helps. In the meantime drink apple cider vinegar before each meal (diluted of course) to increase the acid in your stomach.

  • Yeah, tested for coeliac but no luck. I MIGHT have non-coeliac gluten sensitivity, but the only way I can test for that is going gluten free and I want to be surer that that's what's wrong first before going on another deprivational diet. Unfortunately I can't do the vinegar thing because I have oesophagitis, so I need to find a tablet or some such that won't irritate, but I don't want to treat it till I've seen what the NHS does for the problem and gone through the proper channels. If it ain't on your records it can come back and bite you later on. I've learned that the hard way!

  • apple cider vinegar is never meant to be taken neat, it will burn!

    - just a teaspoon in a glass of water (hubby has it before instead of rennies after) - or some take HCL/betain enzyme or bitters. I've heard diluted lemon juice helps, home-made lemonade is also good for gallstones. Taking a mild acid regulates acid production - why have salt & vinegar on chips? lemon or tartare on (breaded/battered) fish? Wine or pickles?

    My thoughts are that antibiotics killing off good bacteria & dissolving protective mucous membranes begin the process - oh and low vitamin D secosteroid (sunshine!).

    Low B12 & Hypothyroid go hand in hand - at the last TUK conference Martyn Hooper explained the connection & similar symptoms - of course from a point of view that low B12 precipitated low thyroid activity.

    B12 & neurological impairment (Hunt) ...

    bmj.com/content/349/bmj.g5226

    Will go looksie for a document connecting Thyroid & low B12 (low absorption of vitamins in general) - even Dr Toft mentions PA in his BMA book Page 38 ( "available at all good chemists") J :D

  • Hi Sparerib, I am most interested that B12 can also precipitate low thyroid. I haven't come across that; I shall look it up. I wish I'd heard Martyn talk at TUK - that would have been really helpful. I don't suppose you know if there is a video of it anywhere? Or a transcript?

    I have the Hunt article, thank you. I'm going to dig it out now because I have zero memory of them mentioning thyroid (damn medications, or perhaps just focus!).

    So far the only connection I've discovered is that low thyroid seems to have a corresponding low stomach acid problem attached to it and that can cause malabsorption, hence the B12 problems. But it working in reverse also, or perhaps instead of, is intriguing, thanks again.

    I don't know the Dr Toft publication - will Amazon have it? I am doubtless being profoundly ignorant here. And I will be your abject slave forever if you find anything for me on the document front. At the moment I feel like a blundering idiot, thrashing around in my own ignorance!

  • Hi Sparerib, me again! Just found the book on Amazon, thanks. Is it any good, or is it out of date now?

  • Sorry I forgot to say the title! 'Understanding Thyroid disorders' first book I got for £5, different versions now 'tho, he was the Queen's physician (Scotland). It's more or less the establishment's view but some good stuff e.g.

    p38 autoimmune diseases associated with hypothyroidism (PA, diabetes, addisons, ovarian failure, parathyroids (vit D), vitiligo).

    p44 sub-clinical can be treated to 'nip it in the bud'

    p47 'T3 may be beneficial' combo

    p88 'blood tests should not be interpreted in isolation & correct medical care will also depend on careful assessment of symptoms & clinical examination' (in capitals in a red box).

    healthunlocked.com/thyroidu...

  • Thanks for the thread link, Sparerib. I see he's very divisive of opinion when it comes to his merits! But it's available for a penny on Amazon, so if my library doesn't have it, it might be worth having a read of it. Library is first port of call though! He'd certainly be helpful for me, if push comes to shove, since he's in favour of treating subclinical.

  • TUK library link... (TD25/26)

    thyroiduk.org.uk/tuk/suppor...

    personally I think he caved in to peer pressure & toed the line... I think he attended the scottish petition with Lorrainecleaver

  • Ah, was he more sympathetic to start out with and then became more mainsteam? I wasn't sure from the discussion because so many editions were being bandied about! If so, that's tragic. Hate to see a good man go down!

    Many thanks for the library link. I take it you have to be a member to use it?

  • don't think so, you're a member here

    (I don't know!)

    actually it's a book I would keep, I may give one to my GP one day - I lent my other one never to return!

  • So the best thing to do is track down the earliest copy I can find, for more of the real (sympathetic) man?

  • or pay him lots of money now he's private?

  • Hah! If only. Nope, unless he has a crisis of conscience and takes to providing for the poor, he'll remain on his pedestal looking at my suffering from above.

    We'll stick with the library or buying the oldest edition I can for a penny from Amazon. That's me - sticking it to the man.

  • I am not too keen on the word sub-clinical as indicated by blood tests. We read time and time again that the TSH test is unreliable ( research by Diogenes ) You can't be a little bit pregnant so how can you be a little bit Hypo - you either are or you are not. The rigid adherence to blood tests is keeping millions ill - both treated and untreated.....

    M :-)

  • Sorry Marz, I think I just addressed you as Marre on your other post. I'd like to say I am slowly going insane but I think it's happening all too quickly. If I can't find it and correct it, do forgive me! Either that or I've just confused Marre for you, or something. Dear God, is there no end to it...?

    I know exactly what you mean about the blood tests. Because the whole course of my research since I was diagnosed with TN has been based on blood tests, I have come to have a horror of them. Ironically, this is the only one that has shown a real problem, and even it doesn't have the decency not to be on the cusp! You'd think with all these cusp results it would kind of ring alarm bells that something's off with my health, but no, it just seems to mean I'm 'normal' and obviously neurotic. I suppose my TN is neurotic too - in which case they are giving me some mighty strong, dangerous drugs for neurosis.

  • Someday all the dot to dot puzzles will be completed :-) :-)

  • Ah, thank you for that uplifting thought. I only hope you are talking about my health and NOT the Swiss cheese nature of my brain.

  • According to what I have read, people diagnosed with hypothyroidism should be screened for B12 deficiency. B12 is a complex vitamin from animal products, absorbed through the stomach wall. Those with hypothyroidism usually are deficient in stomach acid which can prevent some nutrients from being absorbed, including vitamin B12. Sometimes the deficiency is very severe. My level when tested was less than half the recommended safe serum level. Interestingly, my B12 deficiency was discovered before my hypothyroidism. At the time, I was quizzed by my puzzled GP, who was convinced I had not been eating enough meat, fish, dairy and eggs. I explained to him very carefully that I was omnivorous and enjoyed daily amounts of animal protein. It was not until the hypothyroidism was diagnosed years later that I understood why I was B12 deficient. People with hypothyroidism should take B12 supplements, preferably sublingual drops or tablets placed under the tongue where it will be absorbed. You will find out more, if you type 'hypothyroidism, vitamin B12' into your search engine. Vitamin B12 is critical for nervous system health and severe deficiency can compromise brain function

  • Thanks, Mongolia, I am currently receiving B12 shots. I was diagnosed (by me!) before my doc. In fact my doc doesn't believe in the diagnosis because my tests were 'normal' (low, in the grey zone, but 'normal'). Perhaps my low thyroid will convince him I'm not as batty as he thinks, although I doubt it.

  • Yeah, I diagnosed 'me' too! After tingling and burning of my feet, getting progressively worse over a period of 6 years! About 2-3 years after the symptoms started, my doctor referred me to a rheumatologist who prescribed orthotic soles for my sore burning feet. Then I started to get dizzy spells and tingling started in my hands, Eventually, after going on an over 60's, 4 hours hike, (which left me nearly crawling on all fours), I looked up 'burning feet' on the internet. Realising what might be the matter, I demanded that my doctor test my vitamin B12 levels. Unfortunately, at that time I did not ask for copies of all lab reports, otherwise I would have known that my TSH level was elevated and there was a recommendation on that same lab report, recommending that my thyroid antibodies be tested. I did not find that out until I asked the laboratory for copies of all my past lab reports 2 years later! The tingling feet was peripheral neuropathy (dying nerve endings). It took two years of injections before the tingling eventually stopped, although I am still troubled with aching, sore feet. Since you cannot overdose on B12, I use sublingual drops as an extra precaution. My doctor did not initiate the request for an antibodies test, I did! Doctors are so myopically fixated on TSH, that they never bother with anything else!

  • That's atrocious, Mongolia. You know, really a lot of these docs should be sued, but if you've ever tried to complain about a medical professional you'll know how futile that idea is - it's like suing the government!

    By the by, I only just discovered the burning feet thing. I have terrible trouble with burning hot feet in bed at night, which keep me awake (that and restless legs sometimes), even although I keep them out the bedclothes. I wonder if that might be a thyroid symptom...

  • Yes Chancery, burning, tingling feet can be symptoms of B12 deficiency, hypothyroidism and type 2 diabetes. I also had burning feet during the night. I was referred to a neurologist who told me that, B12 treatment can take up to 2 years to fix the problem and that persisting symptoms after 2 years indicates permanent damage to the nerves. My problem dragged on for years before I eventually got a diagnosis and treatment But the neurologist was correct, because (thankfully) the nerves must have repaired themselves over two years, because now the burning and tingling has stopped (yes, it took that long!) For the first two months, I was on weekly injections. Then monthly injections, then two monthly injections. Now, nearly three years later, I have three monthly injections.

  • Well, Mongolia, that is good news. At least at the end of two years the damn thing might go away! Also good that you could stagger your injections to less and less. I'm on monthly injections at the moment and very afraid of the doc saying I can't have them that often any more. As there is no history to speak of of treating Trigeminal Neuralgia this way he can literally pull them when he feels like it. The only thing I have on my side is that B12 worked where drugs failed. I can always make him look like a moustache-twirling villain if he tries to pull them!

    But, of course, my burning feet could be a symptom of thyroid deficiency so maybe I won't lose them till I get that under control!

  • If you are hypothyroid, the B12 injections may be a lifelong need for you. You should at least be on them until all the symptoms disappear. When that happens, 3 monthly is OK. As an extra supplement you could do what I do...Every night, I place a sublingual drop of B12 under the tongue, absorbed through the mucus membranes directly into the blood stream. This gives me an extra 50mg a day. You cannot overdoes on B12, so I am puzzled by your doctor's attitude. I live in New Zealand, so I do not know what brands you have over there. I do know that sub-lingual disolvable tablets are available there. I have read that some people believe that the sub-lingual method is more effective than injections. To be safe, I use both. Your doctor would be an idiot if he believes that your inability to absorb B12 through the stomach wall will go away!

  • Ah Mongolia, I think I've already firmly established my doc is an idiot! Kidding, but he does take the breath away at times.

    Unfortunately my B12 deficiency has only been established through the fact that it's in the 'grey zone' and by the, as far as he is concerned, happy accident that the B12 injections sent my Trigeminal Neuralgia into remission. He thinks that's placebo effect - bless him. So as far as the NHS is concerned I don't have a leg to stand on. I'd like to believe my new subclinical status will make him reconsider, but I doubt it. He'd have to know that low B12 can go hand-in-hand with thyroid problems and I can't see that being on his general radar.

    I already have some sublingual drops from before I was treated, and I will return to those, or learn to inject myself, if I ever get axed, but I hope that never happens. The idea fills me with so much terror I prefer to be in denial about the possibility! Wouldn't it be lovely if doctors didn't wield such power over us?

  • I have weekly injections with Hydroxycobalamin and top up with Methycobalamin :-)

  • Do you give yourself the injections, Marz, or do you have PA and 'earn' them from the doc?

  • I live in Crete so buy them OTC - and on Mondays after one of my yoga classes here one of the girls does them for me :-) She was a nurse in Germany. Failing that I just pop to the clinic in the village and there is always someone there who does it without question :-)

    Some things about Greece are good - very good !

  • You are indeed blessed. And all with sunshine and free vitamin D too!

  • As well as Pub Med for researching, you could try Google Scholar :

    scholar.google.co.uk/

  • Thanks, humanbean. I've never used that. I'm going to give it a shot asap. Ta!

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