Martyn Hooper says B12 deficiency CAUSES thyroid problems?

I was informed that Martyn Hooper spoke at the last TUK (Thyroid UK?) in 2014 about how B12 deficiency actually causes thyroid dysfunction, rather than the deficiency being due to the more commonly assumed malabsorption issue caused by thyroid. Was anyone there who can remember what he said exactly? Or do you know anywhere I can read a transcript of this, or see it on video?

I did try to track down an email to write to him on his blog, but no joy. I don't use social media so I can't contact him through there. If anyone was there or knows how I can find out what was said, I'd be most grateful - thanks!

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  • I think that was me. He did say if Thyroid problems look to B12 first - or such like.

    It would be interesting to see Thyroid trouble from a different angle....

    There are some transcripts - not sure if Martyn's was recorded here... J

    thyroiduk.org.uk/tuk/confer...

    an interesting study

    ncbi.nlm.nih.gov/pubmed/186...

    Martyn's blog

    martynhooper.com/

  • Ah, thank you, Sparerib, I believe it was you. Thanks for the links. I shall go through them with a fine-tooth comb and see if I can find anything. Much appreciated!

  • Sparerib, any word on the posting of the videos? PR

  • Then most of India would be hypothyroid..........

  • I take it India has high B12 deficiency then? I'm afraid I'm ignorant on that score. I did think it was an odd idea, but not impossible. I just want to see what grounds he based the assertion on and see if I can find out anything further. I need to find out what came first, the chicken or the egg. No point treating one thing if it's really the other that's at fault.

  • Chancery, I had Hashimoto's and thyCa in 2011/12 and when B12 was tested in 2013 it was >300, so not deficient.

  • Was that a typo, Clutter? Did you mean >500? I'm sure I've read somewhere that the Japanese consider anything below 500 to be B12 deficient.

  • Jazzw, no I meant 300. NHS doesn't consider it to be deficient. I supplemented and retest was >700.

  • Your right about below 500. Another report said that below 600 can lead to dementia.

    b12anemia.org/b12-deficienc...

  • Not just dementia, Shaws. I got landed with Trigeminal Neuralgia, an incurable degenerative disease, and I was at 384. It's a sneaky, dangerous thing.

  • Chancery, I am very sorry you developed the above condition which sounds terrible.

    The horrifying fact is that the medical profession are ignorant of the fact that of what a devastating effect a B12 deficiency can have on our bodies, which then damaged, cannot rectify itself and, like you, there's no turning back.

    I have PA myself but, fortunately, it was found before any symptoms developed and was detected as my blood cells 'didn't look right' and I had a test for the instrinsic factor. The one symptom I have is premature white hair. I also take sublingal B12 as for some unknown, inexplicable reason (GPs said I was still in the 'normal range') my annual test showed a B12 at around 300) when I always had around 1,500. Nerve damage cannot be rectified.

  • No, you're right, Shaws. It's a very badly understood thing among doctors and that makes it even more unlikely to be understood by the layman, which puts them at risk. I knew zero about it myself and had messed about for years with vegetarian diets, and vegan latterly, without a clue of how dangerous they were for B12, especially if you are getting older and have poorer absorption.

    Even after I started loading dose treatment with my doctor, which I really had to fight for, he gave me Omeprazole for oesophagitis. I questioned the sanity of this but as he never really believed in the B12 deficiency he had no problem with it. Although B12 was the only thing that actually stopped the pain of my TN, he still thinks I'm having some phenomenally successful longstanding placebo reaction. Only someone who has never felt TN pain could imagine such a thing - bless him!

  • My mother also had PA. After many years her GP told her that she no longer needed injections as her B12 was now 'normal'. My sister and I said "that's great" , little did we know that was ahead - a prolonged death for our Mother who then developed stomach cancer. (I now wonder if the GP was developing Dementia or some other brain problem). So that's why I supplement as well as injections.

    We actually, as you have, suffered through an iatrogenic caused illness (caused by doctors).

    Are you still taking omezaprole?

  • Hi Shaws, no I took it for a month while my oesophagitis was particularly bad and then stopped it when it ran out. Although I was still suffering, it just doesn't make sense to me to be being given monthly B12 shots on one hand and then given Omeprazole on the other.

    I did query it with him, quite bluntly, but he just pulled his sardonic smile face, you know, the one that says "Silly patient, with their oversensitive notions about contraindicated medicines". Although this smile also said "I don't believe in her B12 deficiency anyway". I'd LIKE to think he wouldn't have given it someone with pernicious anaemia or some such 'critical' B12 condition, but hey, he was treating me for degenerative nerve damage in my brain, so you tell me!

    And I'd never heard the term iatrogenic before. I'd love to thank you for enriching my vocabulary but I just KNOW that damn word isn't going to stick in my now pea-sized brain. Shame, because it's a great word, and sounds so intelligent. Just the sort of thing I'd love to drop into a conversation! But at least now if someone uses it again I stand a 50/50 chance of recognising it, and you won't have to explain it to me!

    And your poor mother - how awful. I'm a member of the PA forum, and the amount of times you hear people STILL being told by doctors, or nurses, that they no longer 'need' injections for their PA is truly frightening. I live in fear of mine being pulled. I don't have PA, but they are the only thing that has worked on my neuralgia and the idea of going back to that pain and/or heavy medications is so terrifying I actually don't think about it; it's too monstrous to contemplate.

    My doc argues the 'your blood is over 2000' argument. Which is absolutely correct, of course. But the only trouble is B12 doesn't seem to work like that. However, last time I brought up the problem of how to argue back against this one, and the need for more frequent injections, on the forum, I started the most almighty argument and was accused of siding with doctors! I haven't dared raise the topic again. But it's a very real problem. What DO you do when you don't have PA and your bloods show serum over 2000 and the doc wants to pull injections? You know you need them but how do you convince him of that with blood tests that patently say you don't?

  • Chancery, how long after your B12 jab was your result >2,000? For reasons inexplicable to me, some doctors test B12 levels within hours/days of a B12 jab when it will, of course, be high. It would make more sense to test B12 before the jab.

  • Hi Clutter. It was about a fortnight, I think. Maybe not quite. It was too close, even he admitted it, but I got the two-monthly (as they were then) maintenance injections on the grounds that we would retest it to make sure the B12 wasn't going right through me. We had had a very big argument about me getting them at all, and then about frequency, so it was part of the 'deal'. But I realised afterwards it was a) pretty pointless and b) had only provided him with a fallback position of saying "Your bloods are over 2000" and he did indeed use it against me in another argument after that, so I was right there.

    But I did manage to get monthly injections out of him after that because my improvements were only lasting 3 weeks before the pain started to come back. However, all of this is on sufferance - I get them because he allows it. I'm not entitled by NHS guidelines. Because my condition is rare, I am completely out on a limb. There are studies about pain control in TN, using B12 successfully, and they are the only thing that swung it for me. I happen to believe they are actually curative, but I could be wrong. I think I've had better luck with them than other people because a) I went in aggressively and treated with injections, not low tablet supplements and b) I'd only had the condition for 10 months at time of first injection. Other people have tried OTC tablets 4 or 10 years into their condition. I think I caught it early. Not that I am off drugs yet, or in any way able to prove it won't come back, since remissions are normal and they nearly always fail eventually. Only time will prove or disprove that one.

    But I agree completely, it should really be tested again before an injection but the NICE guidelines say that once it goes over 2000 there is no need to retest, and we all know how doctors love a good NICE guideline!

  • Chancery, Something not quite right there. How do they know whether levels have dropped through the floor in between injections or after injections stop if they don't retest?

  • They don't, Clutter, but the thinking is that once it has reached 2000 in the blood, it's all moot. You are considered cured. It's considered superfluous to retest.

  • Chancery, Cured? Of what? PA and some forms of malabsorption aren't curable. As long as injections continue I don't suppose retesting is important but B12 being replete doesn't mean the cause of the original deficiency is cured.

  • You'd think. But when I suggested to him that we didn't know exactly what was causing my deficiency, so having 2000 units wasn't really relevant to injection times, he just kept repeating "But you have 2000 in your blood. That's more than enough." I was very flustered and upset by this point in our 'lively debate' but I do remember saying "But what if my body can't use it for some reason? What if that's what caused the deficiency in the first place?" and I seem to recall he just looked at his computer with his angry-sulky face. The conversation had got ugly by this point and we were just going round in circles. I think we finished up not long after that, after arguing about a few more things. He was running late by now so needed me out, but he was reluctant to let go of what, to him, is illogical, and the worst thing is I can sort of see his point (that's what got me into trouble on the PA forum!). The B12 is there, available, so what's the problem?

    I don't know - THAT'S the problem. And neither does he really. But he did let me have what I asked for after this, so he obviously thought it wasn't worth arguing over and humoured me. The trouble is though he can withdraw it on a whim, and I doubt he'd support me with a new doctor if I ever had to move house, but you never know. That's prejudging him, and it's not like he's ever said no - so far!

    But I do wish I had a GOOD answer to the 2000 argument, but one just doesn't exist. PA sufferers have a big advantage here, especially if they have clear-cut neurological damage, because even the NICE guidelines say they should get continuing treatment, but I do know from the forum that some people with extensive injuries still get refused. It's appalling.

  • Chancery, I'm not going near the B12 or thyroid levels replete but not getting into to the cells issue, too complicated for me and I think for a lot of GPs too. I suspect you need a haematologist &/or neurologist to determine whether B12 is being transported or not.

  • Well, the neurologist was no use. He had never heard of a B12 TN connection and looked it up on PubMed in front of me because he didn't believe me. However, after that he flatly refused any information or interest and said I'd "need to see a gastroenterologist". So as you can see, not a lot of help there.

    At the moment, I'm trying to establish whether I have a thyroid problem causing a B12 problem or a B12 problem causing a thyroid problem before I go the doc and 'present'. Have to be armed. But I am considering asking for a gastroenterologist to measure stomach acid and see what is really going on with my gut issues. Maybe establish if there is any autoimmune factors down there and also what damage has been done. And, of course, low stomach acid would be a big issue, if it exists. I'd like to know. I've had my fill of doctors' wild guesswork.

  • If you are taking other drugs this will reduce the stomach lining (the magnesium stearate or stearic acid attacks the lining of your stomach). so you know about the intrinsic factor being involved with the absorption of B12 this is tied in to your stomach lining.

    a good probiotic as well as organic sulphur (DMSO) which coats the lining of your stomach may help, you would also need to take B6 and B9 to aid uptake of B12, to absorb B6 you need to take riboflavin LOL and there is bound to be more you can only get this naturally from food or plants which are even better.

    Meditation has been proven to increase the size of the brain, there are herbs that make dendrites which are the pathways in the brain then you also need GLA, GLA maintains normal nerve function and forms part of the sheath that coats the nerve cells. this then helps the delivery of nutrients

    But you do need to be careful in how your brain reacts to certain foods as this can trigger a fit.

    what doctor would tell you this about all the interactions? this is why it is best to learn this stuff for yourself a daunting task at the start but it is so interesting.

    Also organic sulphur will clear your arteries out of the deposited inorganic calcium that they don't tell you about, we get this from dairy as the pasteurisation process breaks the carbon bonds in the calcium resulting in the calcium becoming toxic to us cheese is 10x the amount of milk and butter is 21 x the amount of milk so really try and cut this out.

    If you are going to try and fix yourself try a very small amount of DMSO just dip your finger in the bottle or drip one drop onto your skin

  • What IS DMSO exactly, Jinni? I've never heard of it.

  • Thanks, Helvella. It's basically a solvent and a faux cancer cure. Good to know.

  • Its only the pharma industry that can't cure it, it doesn't mean you can't cure it yourself by researching it there are some amazing cures that are completely hidden by the doctors & pharma, the industry would not earn any money if you were given the cures you are dealing and listening to a business don't give your life away just because you can't be bothered to research it. start here nad understand what you have got evenbetterhealth.com/multip...

    then move onto how to repopulate your gut bacteria and how to get the heavy metals out of you and what are the most bioavailable nutrients and what combinations you need to uptake them best so lets take selenium which along with tyrosine and boron all work on uptaking Iodine, the most bioavailable source of selenium comes from the brazil nut grown from manaus to belem in the amazon area.

    Also if you have got thyroid problems recorrect your breathing you must use your nose to inhale as when you breathe through your mouth you do not get the air at the right temperature which then unbalances the function of the thyroid,

    you also need tyrosine to uptake The Iodine.

    and remember the japs ingests through food about 12.5 mg a day and then they breathe in even more Iodine through the gasses it lets off in the sea we are way undernourished when it comes to iodine.

    and if you are B12 deficient that means the bacteria balance is not correct as good bacteria create B12 in your mouth and other regions of your body.

  • Hi Jinni, I appreciate the kind thought behind your recommendations. Unfortunately, they are too pseudo-science for me, and I could never believe that breathing through my mouth had done any damage to my thyroid. But I very much appreciate your concern for my wellbeing and thank you for your goodhearted efforts; it's just not for me.

  • Be careful of the words the pharmaceutical companies use to protect their business. if you were outside the box looking in pseudo science would be attributed to the medical industry I guarantee you this. there is no evidence that the pharma drugs work as 30% of people heal due to the minds control over the body they call it the Placebo effect yet it is the strength of your mind.

    have a look at how many people constantly have to take their drugs this is not healing people it is just controlling the symptoms but I can only show you where the door is I can't make you walk through it.

  • Well, there's a little evidence that the pharma drugs work, Jinni, in that some of them work! Without anti-convulsants, awful as they are, I would have either died of starvation or committed suicide before now. They were, literally for me, lifesavers. And I am not alone in that.

    But I agree absolutely that big pharma needs to be watched and treated with caution. Fortunately in the UK we are not subjected to the same advertising by big pharma as you are (I'm guessing) in the US. I marvel at how laypeople manoeuvre through the dangerous misinformation that big pharma offers in the US. Here, we just have to worry if our doctors are poisoning us! Again, in a bizarre way, our NHS, and its money-saving ethic, helps us, because they won't pay out for expensive drugs if the old, cheap ones work!

    But once again I thank you for your concern. It's very kind of you. I appreciate it.

  • well they work a little and yes they do save people yet the effects on other parts of the body are dubious to say the least

    according to one piece of research I read out of the 205 thousand pharma drugs 26 were meant to work how they were meant to.

    the problem with the pharma drugs is that they do the testing in laboratories where they have sterile environments the body is obviously contaminated with heavy metals, metals and minerals do not interact together hence the chinese using wooden chopsticks to eat and not metal knives and forks there is a brand of clay pots called xtrema and these are the only ones I know of that use an organic glaze

    and the anticonvulsants can be replaced by the right use of sulphur based foods these will slow the brain down and won't have the side effects that of the drugs they give us.

    there is quite a lot of evidence that the Linden tree is very good for epilepsy due to its sedative effects folk stories tell of just sitting under the tree when the blossom is out and having remarkable effects on controlling epilepsy or you could take DMSO if you are in a lot of pain you can get this from a vet only get the 99% one.

  • With respect, Jinni, when you're in the throes of a Trigeminal Neuralgia attack there is NO way you want "sulphur foods" or to sit under a linden tree. You need medication and you need it fast. Even when vitamin B12 started to work for me, it took me more than a month before I had the confidence to eat on the TN side of my mouth or even consider lowering my drugs. It's not an illness to mess with, nor would a vet be my first choice of call, but thanks again anyway, I appreciate the effort.

  • the body is an extremely complex thing you say your in pain and I recommend you take dmso then you try and change it to something to do with cancer it is a pain reliever,

    it also helps deliver nutrients deep into the body it is organic sulphur from trees. it clears your arteries out as well as doing hundreds of other things in our bodies.

    the ruling class have taken sulphur boron and iodine out of our diets in order to weaken our bodies and our minds most people do not have any critical thinking which Is why they trust a doctor which is a form of insanity in not doing the research yourself,

    this is not exactly hidden stuff you are in pain and the doctors have not been able to help you else you would not be in pain yes.

    you are pouring scorn on ideas that may or may not help you but you are not willing to go to a vets and buy some thing that is going to cost you about a fiver which has a better chance than anything of relieving your pain

    if you do not put your diet right how can you expect to get better you are feeding yourself toxins all the time you go and take the linden flowers in an infusion when they are blooming at the end of spring this is meant to calm your brain down you take the sulphur foods to calm your brain down and you will not get an epileptic attack

    Belief is fine but Knowing is a completely different ball game.

  • Again, with respect, Jinni, you have no idea about my diet, nor do you have any experience of my condition so you are not in a position to judge it or determine what works for it.

    While I appreciate your efforts to help me, it should now be apparent that we don't think along the same lines. I'm sure other people will find your information invaluable. It's just not for me.

  • Thanks very much for you good info. It is appreciated.

  • here is some literature on regenerating your nerves.

    Jala neti balances the sympathetic and parasympathetic system only get a yoga practitioner to use the string to clean out the nose salt water may not be good for the nasal cavity?

    Boron or if you can't get that use borax this has been classified as damaging for reproductivity in rats, animal testing means nothing to humans

    quercetin stabilizes the nervous system

    almanac.com/blog/natural-he...

    beneficialbotanicals.com/ti...

    knotweed kills lyme disease by interacting with the nervous system

    n-acetylaspartate.com/

    B6 Pyridoxine is involved with protein fat & sugar metabolism & ultimately the metabolism of nutrients that affect central nervous system you must take riboflavin to uptake B6 only ever take Folate, folic acid is synthetic

    enzymestuff.com/discussiond...

    The fourth and fifth studies show that opioid peptides actually exert strong development and regeneration of nervous tissue - they stimulate nerve growth. May have something to do with all this improvement some people see when they put dairy and whole grains back into their diets with enzymes.

    bankoffact.blogspot.com.au/...

    Dates are rich in potassium and reduced in sodium. This helps regulate a healthy nervous system

    ncbi.nlm.nih.gov/pmc/articl...

    ncbi.nlm.nih.gov/pmc/articl...

    silica cell salt (try and source through seaweed as all cell salts are pharmaceutically manufactured now)

    silica acts as an insulator for the nerves

    Hans Meyer thinks that calcium salts have a sedative effect on the sympathetic nervous system, and diminish the permeability of the walls of the blood-vessels. When they are withdrawn from the system (as in oxalic acid poisoning), the result is an over-excitability of the whole visceral and cerebro-spinal motor nervous system.

    Read more: chestofbooks.com/health/nut...

    en.wikipedia.org/wiki/Xanthine

    ncbi.nlm.nih.gov/pubmed/135...

  • Thanks, Jinni, there's a lot of stuff there. I'll have a look through it and see if there is anything of interest to me. Once again, thanks for your diligent research efforts. We may not see eye to eye on the science, but your generosity is without doubt!

    E.T.A. Had a look at these and some very interesting stuff, particularly the onion skins and the Hans Meyer material. It seems at odds with the way the calcium channel blockers I take work, but maybe I need to look into that more. Thanks again.

  • You're right, Jazz. The Japanese treat for deficiency below 500.

  • 300 B12 is very low Clutter, although a G.P./Endo would say normal. It isn't!

  • Margo, yes it was low but 8 weeks supplementing made a considerable improvement and I continue supplementng. My sister's B12 was even lower last year but she insists it is fine because her GP says it is and I doubt she read the B12d links i sent her

  • Oh dear Clutter, it is difficult for you to prove to your sister that you are right and the G.P. Is wrong.

  • Margo, you can lead a horse to water but you can't make it drink...

  • I'd be happy to give her a blow by blow horror story of my Trigeminal Neuralgia pain and the life-destroying effects of the anti-convulsant drugs I take, if you think it might help wake her up to her own danger. It's not just pins and needles in your feet you have to worry about. It actually can be life-destroying.

  • You were lucky you didn't have symptoms, Clutter, at only 300. Jazz is right; the Japanese treat at under 500, and B12 experts believe that the low limit should be set at 400. The US and UK limits are far too low. I am a case in point. Mine's was 384 when tested, but I was deficient, since I had developed Trigeminal Neuralgia, which went into remission after being treated for two months with B12 injections.

    One of the terrible things about B12 deficiency is often, if the damage is neurological, as mine was, it's too late to fix it by the time you get diagnosed, or your blood tests fall low enough to merit treatment. You had a close call. Unless, of course, Martyn is right - in which case maybe B12 deficiency caused your thyroid problems!

  • Chancery, I know the Japanese treat at <500 but nevertheless 300 is low but not deficient and while low/deficient B12 may affect thyroid function I doubt it causes autoimmune thyroid disease or thyroid cancer.

    300 was the level I had 18 months after completion thyroidectomy and 2.5 years after Hashimoto's diagnosis. It was the first time I had B12, folate, vitD and ferritin tested.

    At the time of testing I was 90% bedridden with a multitude of neurological and other symptoms and was also found to be severely vitamin D and folate deficient. Ferritin was very high above range which didn't surprise me as I was in so much pain.

    I suspected Levothyroxine was the problem and after clearing the build up of T4 over 12 weeks and stopping T3 for one month, completely clearing my system of thyroid meds ALL of the symptoms except some hip and knee pain resolved. Palpitations, tremors and breathlessness started again within hours of resuming T4. 2 days later I added T3 which calmed the adverse effects within a day.

    I started vitD loading doses and 5mg folic acid during my thyroid meds 'detox' but I didn't supplement B12 until neurolgical and other symptoms had resolved and after I resumed T4+T3. Hip and knee pain resolved when vitD deficiency was corrected. I'm certain the neurological symptoms I had were nothing to do with low B12 but were caused by intolerance to T4 only. 8 weeks after supplementing 1,000mcg daily B12 was >700. I supplement B12 to keep levels up and hope this will help me avoid development of neurological symptoms as I age.

    My sister is a worry. If her GP says something is fine there's no arguing the point. Her GP tells her to hand over my email saying what tests she should request and orders them. :-D She sends me the results for interpretation but it's a bit pointless if she doesn't act on the recommendations.

  • Well, we'll have to disagree on B12 deficiency levels, Clutter, since I was physically damaged at 384, but I would agree that what damages one person won't necessarily damage another. I reckon genetics is playing a part there. It's a bit like thyroid, there seems to be quite a bit of flexibility in what is 'normal' and if you have a genetic susceptibility, as sure as God made little green apples, that's where you will be struck down. I agree absolutely that it is unlikely to be playing a part in autoimmune or cancer, although as far as cancer goes it could be helping prevention, of course.

    But I'm most interested in your illness history. Did you have some kind of allergic reaction to synthetic hormones then? Or was it bad dosing or something that caused such a snarl up? What do you use now, since you have no thyroid at all, is that right?

  • Chancery, I was recovering on T3 inbetween thyroidectomy and RAI and was switched to T4 after. I was 'over-replaced' initially on 200mcg to suppress TSH and thought at first it was overmedication as FT4 and FT3 were high. Had to come off T4 for a month for a 2nd RAI and felt better and managed to gain some weight and felt awful again when I resumed 150mcg T4, over-replaced again with FT4 >34. Dose was reduced but symptoms were accruing and getting worse. Suggestions of fibro and COPD but no one listened when I said I thought it was T4 causing the problems. I must have been his only patient constantly begging for dose to be reduced. On 125mcg FT4 came into range but FT3 dropped quite low and fell below range on 100mcg.

    This had been going on for 15months so when I was told to continue on 100mcg and come back in 6 months I decided to self medicate with T4+T3. Brain fog and cognition improved but the physical symptoms didn't so I decided clear T4 by taking T3 only. 10 weeks later I wasn't any better and decided to see how I felt off thyroid meds. Couldn't believe how well I felt after a few days and by the 2nd week most symptoms had cleared. Weeks 3 and 4 were terrible and unnecessary. I think I was hoping the longer I stayed off meds the better I'd feel. As I said, resuming T4 caused adverse effects but this time I knew there was no build up causing problems and adding T3 calmed them.

    I had a spirometry lung function test that showed lung function was good and ruled out COPD but as the breathing problems stopped when I cleared T4 I wasn't surprised.

    I've been on T4+T3 for 15 months now and doing ok. Need to improve fitness and would like to gain some weight but the only time I gain weight is when I stop T4. The chocolate caramel eggs I'm scoffing should be worth a few pounds though :)

  • Good Lord, that makes you sound like a walking lab. I don't know how you keep track of all that or manage to make sense of it, and I can only admire you unsnarling it yourself when the doctors apparently couldn't see the problem.

    Good job you're assertive and used to being your own advocate. You could be crippled or dead by now otherwise!

  • Chancery, I had been very compliant up until I decided to sort it out myself. I didn't think anything could get much worse but it was worth the risk to see whether things improved. I kept note of my results on a spreadsheet and kept a symptoms diary so was able to track changes.

  • I have even more admiration - that's what I call organised. And to do that while ill - kudos. Most doctors aren't even that diligent!

  • Hope it's ok to butt in here with a question... Clutter, I'm fascinated by your account. May I ask what your current T4 and T3 dosages are? Do you think you may need to adjust them again?

  • Hillwoman, I'm currently on 100mcg T4 + 30mcg T3. Hard to say whether dose adjustment will be required in the future. I'm underweight so if I am able to put some on I don't know whether that will affect doses. It's unlikely I'll increase T3 as 40mcg shot me considerably over range last summer. If we get a hot spring/summer again it is likely I will drop the T4 to 75mcg.

  • Ah, interesting that you would drop the T4 in hot weather and not the T3. I've struggled to cope in the warm weather of the last two summers - the fluid retention I have all the time really goes into overdrive. I'm on T3 only, but if I reduce the dose I suffer in other ways. I'm glad you've found a balanced treatment.

  • Hillwoman, the beauty of the spreadsheet is it helps guide me. 75+20 doesn't suppress my TSH. I felt well on 75+40 but FT3 was too high. 75+30 TSH suppressed, FT4 around 14 and T3 4.5. Good enough if current dose is too much but I thought I could feel better. I won't have bloods for 100+30 until May.

    I stopped sweating a few years ago so found it difficult to cool down a couple of times last summer and reducing T4 helped. I didn't realise at that time that FT3 was considerably over range and it would have been better to reduce T3.

    I think I may be learning to sweat again though. A few weeks ago I woke early, unable to sleep and uncomfortable. Took quite a while to realise I was too hot and was perspiring very slightly. It's years since I was too hot in bed. Was also too hot in the small hours this morning. So maybe temperature control is improving and I can stop pulling the duvet over my head to get warm.

  • Why did you stop sweating? Like you, I used to struggle to keep warm, but now I have the opposite problem - menopausal sweats every single night for the past year, plus a rising number of super-hot flushes during the day.

  • Hillwoman, I had very early menopause but sweats weren't too bad although I occasionally had to change nightwear. Have you had B12 and folate checked? Low levels can make night sweats worse.

    ncbi.nlm.nih.gov/pubmed/252...

    ncbi.nlm.nih.gov/pubmed/252...

    I'd been feeling increasingly cold for years and bought ski gear to walk the dogs and garden and sleeveless padded jackets to wear around the house. I was sweating when I did heavy gardening but I became ill and unable to do much so didn't work up a sweat. I was sweating slightly during the hot months after thyroidectomy when I walked vigorously and was on T3 only but seemed to stop when I was switched to T4 and became increasingly inactive.

    Sensitivity to cold is improving slowly. I took socks off in June last year and didn't put them back on until late October and I haven't needed hot water bottles this winter. :-D

  • Gosh, you've been through a lot. Thanks for those links. As it happens, in December I started self-treatment for PA, so I've been injecting SC 1000 mcg methyl-B12 every day since, plus I'm taking 800 mcg L-methylfolate and about 6000 ius D3 powder. I had a very slight improvement in neuro damage after two weeks, but recently things have gone into reverse. I'm now boosting my iron and also taking a good B Complex to see if that helps.

    Thank goodness we had a warm autumn and a mild-ish winter. It's snowing today though. I'm alternating between tearing off my clothes and feeling so cold I need the heating on. Then I turn off the heating and....rinse and repeat.

    :)

    Edit: oops, meant to post part of this reply further down.

  • Hillwoman, Are you unable to tolerate any T4? Just wondering whether adding T4 to reduced T3 might help.

  • I've recently been advised by Dr M to add 25mcg T4 at night and to reduce my T3 during the day. She's now following Dr Blanchard in this respect, but as you suspect, I can't actually tolerate T4 at all. Not sure why Dr M recommended I do this. However, I see Dr P for any alterations to thyroid and adrenal treatments, and I'm about to update the saliva and urine tests for these. Something is seriously out of whack!

  • Hillwoman, have you tried adding T4 since you've been on T3 only? Clearing the build up of T4 is what enabled me to tolerate T4 with T3. If you haven't tried it may be worth a go. If you are intolerant to T4 it is likely you'll have an adverse reaction within a day or two and can stop it immediately.

  • That makes sense. When Dr P first advised me to try Armour instead of the standard synthetic T4, he had me stop all thyroid meds for a while - can't actually remember how long it was. When I started Armour I felt no better, and I worsened as the dose increased. Maybe I never managed to clear T4 from my system beforehand?

    When I've done the upcoming tests, if the results don't tell anything useful I may consider adding T4 after all. You know, if you hadn't described your own experience, I don't think I would have reconsidered Dr M's suggestion. Thank you! :)

  • Hillwoman, There are people who don't tolerate any form of T4 but it can take a long time to clear a build up of T4, 12 weeks in my case, so it may be worth a trial.

  • India is mostly vegetarian - so I think that is what gabkad meant :-) I think whatever your research reveals I am pretty confident your B12 being optimal will not cure the hypothyroidism :-) B12 like other vitals are needed to be optimal for the storage hormone - T4 - to be converted into the ACTIVE T3....

  • I know what you mean, Marz. This is why I am so keen to hear what he had to say. To me B12 is an essential vitamin, and that essential part is the important part, but I feel the hormone system kind of drives that rather than vice versa. That said, lots of body functions need B12, so perhaps it CAN impact the thyroid critically. After all, it started to destroy my brain when it was missing. Either way, I'm desperate to read/hear this. It's very frustrating to not know what was said, and where he got it from.

  • Have you tried contacting him personally - there is a phone number I believe on his website/blog...

  • Yeah, there's always the phone, but I am phone-phobic (I know, embarrassing) and while I can do basic stuff on it if I really, really have to, I can't chat. These medications I'm on have made this situation worse, partly because they cause anxiety and panic anyway, but mostly because they make me so fuddled in the head I get flustered easily.

    There, that's quite the most humiliating thing I've ever had to admit on a forum. I'd rather talk about my bowels...

  • If it's Martyn - he was such a sweetie at the conference - I would have no hesitation contacting if you know how - such a genuine guy - spot it a mile off....

    I know how you feel - yet bullied to talk to folk everyday - doesn't make it easier - but would if it helped with meaning... J x

  • Thanks, Sparerib, that's good to know. It's always an easier thing to do if you know the person at the other end isn't going to harry you in any way.

    That said, I'd still need to write it all out first. I'm much better in written form. I can edit and polish it so I sound half way articulate. Maybe I'm going to have to address him Queen's speech style, if push comes to shove. That should be worth a laugh or two...

  • Martyn is very willing to help and will call you back if you he's not at home - leave a phone message. It hurts him that people aren't being treated optimally or remain undiagnosed, like thyroid problems, with the resultant disasters.

  • Thanks, Shaws. I shall try and pick up courage and push myself to bravery! If I'm very lucky he maybe knows someone who has actually researched this. If it's real, it's something that should be in more common knowledge, both for thyroid patients and B12 sufferers. It makes a BIG difference when it comes to treatment that you are actually dealing with the causal issue.

  • another informative link

    b12d.org/book/export/html/1787

  • Good link, Sparerib, many thanks! It ACTUALLY states that B12 deficiency can cause damage to the thyroid. Unfortunately it doesn't mention specifics or go into it in much depth. But can you tell me where it's actually from? I can't tell from the URL which site it came from. I'd like to know more, to judge how reliable it is, and who I'm quoting, if I pursue it with my doctor.

  • just b12d.org/

    from a knowledgeable member's link Hampster - a lot will remember her.

    Dr Chandy championed the B12 cause (he saw it a lot in Indian vegetarians) but he got in trouble here... although B12 is harmless.

  • Ah, it's from Dr Chandy, thanks! I know his site and the information on it is sound, from what I can tell, so that's a good start. I can try writing to them and see if they can offer any more light on it as a theory.

    Yeah, he got in trouble with the medical council for giving B12 for exhaustion. He's banned from doing it now. Odd coincidence, I was thinking about that this morning. Even if it was just for exhaustion, is it any worse than giving multivitamins? Ah, they are strange in their ways, these ancient institutions of 'authority'...

  • Hampster1 is missed -she was so helpful to me.... :-( She's on FB - but I don't do that :-(

  • With you there, Marz - I don't do Facebook either. Life is too short!

  • The Fibro site say fibro is just fibro - they're not looking for a cause, just treatment.

    Those with PA and/or B12 deficiency will have their angle on their health - they know their cause and have even changed the guidelines.

    There isn't a Vitamin D site/lobby as such - well the council, but there should be a UK group IMHO! Or an iron deficiency forum?- so common I suspect not!

    Yet we are here from several causes - who knows which (could be the chicken or the egg). Yet here we are and here we WILL consider & debate everything - as lots of symptoms can be thyroid-related, as T3 is needed in each and every cell. It doesn't matter which way your egg is up or upside down - it's still an egg...

  • I know what you mean. On the Trigeminal Neuralgia site I belong to, lots of people are in so much pain and distress they don't give a damn about the causes of their TN, they just want pain control that works. I know when it first struck me, the devastation of the pain was so complete cause was the least of my worries, but as soon as I had that under control, just enough to stop the shocks, I HAD to know why it had happened.

    The fact that there is no why for TN, and no-one is really looking for a why, is a major stumbling block for me. I hate that. I NEED to know why. I also feel strongly that it is profoundly stupid not to get to the bottom of every illness, because if you don't you are heading towards more, and often bigger, disasters later on.

    Unfortunately, of course, it's seldom that clean-cut. It's often well-nigh impossible to sort the chickens from the eggs and you could die trying, but I do think Western medicine is far too cavalier about compartmentalising illnesses and thus often really screwing up people's health. They don't care whether your gallstones indicate an underlying thyroid problem, they just want to cut out your gallbladder. They don't care if your stomach pain is really an ulcer, they just want kill all your h. pylori. It's a sort of deal with one thing and we'll deal with the other when we get to it, but you WOULDN'T get to it if they just took care of the right thing.

    Preventative medicine is not what it's about. More's the pity.

  • Yep - I started out finding I'd got extra ribs....that must be causing all the extra pain - nope.. why would it if I'd already had them for 40 odd years?

    I don't really blame docs - they see how many patients a day for 10 allocated minutes? burn out with only one chance to recognise the usual or unusual ... not the chronic ones they see most weeks..

    One day I will make a double appointment - I will leave and wait to hear my name called a second time... I will be labelled mad and a time waster... c'est la vie! :D

  • Oh, please tell me you really DO have an extra rib and that's why you've picked that user name. PLEASE....

  • er.... yes, I have 2 cervical ribs (in my neck) found on x-ray, sent for mri & then thyroid anomaly found...

  • Well smack me down with a feather. I just assumed you were a fan of the 1970s feminist magazine!

    Cervical ribs, eh? I assume named after their cervical shape, and not because they have anything to do with the cervix? I've never heard of these - as you can tell - are they a birth defect or some such? Sorry for the rampant ignorance. It amazes me sometimes how little I know about the human body.

  • The cervical vertebrae!

  • Thank you, Helvella. I still had to look these up to spare myself any further shaming and yes, they do indeed look like the cervix, but no, they are not in any way odd or a defect, so now I'm baffled as to what was odd about Sparerib having them in her neck, unless it's the rib part? Are cervical ribs DIFFERENT from vertebrae?

    I think this would be a whole lot easier if I just Googled cervical ribs and stopped asking inane questions...

  • Yes cervical means neck - not other bits!

    Yes the feminist magazine & John Cleese.

    Yes a spare part - yet occasionally useful...

    Yes I used to be quite tasty... with a bit of sauce...

    If you have numb arms and it's not low B12 - you too could be a Toser like me! (hope you're not 'tho)

  • God, now you've set me a new brain teaser. Toser? Is that a spelling mistake or am I so far out of my depth I'll never see the shore yet again?

    You do know I take medication that destroys my cognitive skills, right? Or have you taken it upon yourself to save me from dementia single-handed?

  • Cognitive function is all in the mind.. I would love to save everyone from dementia - eliminate UTIs first - also recently heard of low salt causing havoc.

    TOS is thoracic outlet syndrome - no you don't need to know... trapped nerves mostly, well sometimes arteries & veins too - nerves tend to wrap around them... depends on other stressors... anyway...

    I designed a ribby T-shirt... 'got the T-shirt' hoping it was done & dusted - sadly it comes back to haunt me... when low Vit D.

    crawling to bed now - its 3 am Brit summertime :D

  • Ah yes, sorry. I actually saw the syndrome on Wikipedia when I was reading about the cervical ribs. See what I mean about the memory problem?

    I'll be up for about four hours yet - more joy of meds - but you have a good kip. Night-night!

  • pernicious-anaemia-society....

    Lots of information....

    :-)

  • Thanks, Marz - I already use this one. I discovered it when I first suspected B12 deficiency. Worth its weight in gold!

  • I posted it for the contact details - if you say you cannot speak on the phone then there is an address :-)

  • You know, I was just thinking about this yesterday, wondering if there was a written address. I could just write. Now that I know there is, I think that's what I'll do. Thanks for being the working part of my brain. I do get there, you know, but prompts from you surely do make it a lot easier!

  • :-)

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