New here and would appreciate some advice re B12 please

Hi all

I am new to this forum and wonder if you would mind giving me a little bit of advice?

I think I may have a problem with Vitamin B12, I am trying to address it with little or no help from my Endocrinologist and think that some of you on here will have a lot more knowledge and could maybe point me in the right direction.

I have very long term health issues dating back to my childhood when I became hyperthyroid, misdiagnosed, major problems followed and this is a pattern that has always followed me, I have lost years to this awful illness I am now hypo and have been trying to deal with this for a number of years.

I have suspected a B12 deficiency in the past but my blood tests have always come back normal, I think the last test showed it to be around 700 so I dismissed it as a possibility.

I have a number of symptoms that have pointed to a vitamin B12 deficiency but given the test results I have always thought it can't possibly be that. Most recently I had an MRI for my eyes, this came back and showed white matter changes. My Endocrinologist was not very helpful and because I have high cholesterol, blood pressure, diabetes etc says I need to go onto statins which I will not do.

The results of this test made me look more into the subject when B12 came up as a possibility. I know I should have arranged more tests but to be honest I was really freaked out and started taking B12, Solgar sublingual Cobalamin to start with then I moved onto Methylcobalamin as I understood this was the one to use (naturally the most expensive and hardest to source!)

Some of the symptoms I get are nerve like pain in my arms, neck and lower back, it seems to go in phases and then goes away again. Interestingly I have had a very sore tongue for a number of years, another symptom the doctors ignore - but since being on B12 this has improved 90% and gone from being a really bothersome symptom to very minor one.

I don't want to go on for pages so won't bore you with the long list of problems that seem to be beyond the NHS but I am convinced that B12 is at least part of my problem.

I now take the Solgar 5000 sublingual nuggets every day but am concerned as to whether this is enough to address a deficiency if I do indeed have this. I also wonder whether I should add Folic Acid and Biotin?

Should I request any tests or does the fact that I am taking B12 render them useless? I did request a Homocysteine test from my Endocrinologists but she said she had never heard of it!

I have such a long list of endocrine related issues that are very difficult to address but I do think I can improve things if I am right in this assumption regarding my B12.

I don't know if any tests would help given that I am taking B12, should I be trying to source injections? what should I do next?

Thank you for reading this, there's lots more to it but I'm trying to be succinct.

24 Replies

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  • Hi Throid, I am in your position exactly. I have had hashimotos hypothyroidism for 3 years. T4 medication and even dessicated made me worse. Turns out after having private blood tests done, i am toxic with mercury and deficient in selenium. Mercury binds to selenium making it inactive, which is a problem because selenium is vital for the transformation of T4 into T3 and reducing RT3. I hope reversing this will help me tolerate thyroid meds at last.

    I do take T3 but am still left fatigued. I discovered i have parietal cell antiodies which is pernicious anemia in the making. All my NHS blood results come back normal, and my B12 was 550 so like you i dismissed it. However the private blood tests say i have borderline B12 and very low folic acid. I also Used to get a painful tongue but only as i was falling asleep or waking up! ? I too am having pins and needles nerve symptoms, and confronted my GP with my theory today, but will not be swayed from the NHS test results.

    Check my last blog on Genova NutrEval test!

    High MMA and Homocysteine usually confirm Pernicious anemia, but mine were normal.

  • Hi, Throid, I too had low B12,167, but this was ignored by GP. Also hypothyroid but B12 had never been tested until I was exhausted.

    What worked for me was just buying Swanson's sublingual methylcobalamin 5000 x 60 tablets, about £9 on Amazon, and after about 4 months of pretty intensive dosing, about 25,000-30000mcg daily spread throughout the day, I had raised B12 to >1500. My understanding is folate is required to methylise B12 making it the Active B12, holotranscobalamin, usable by the body, but methylcobalamin is already methylised so folate does not need to be involved - theoretically! I would have supplemented folate if I had had low folate but the lab marked it with HH. All my 28 symptoms eventually disappeared, including a swollen, scarlet, painful deeply fissured tongue now normal. Injections are certainly the favoured means of delivering B12 in this country but B12 levels can be raised by sublingual tablets if anyone is desperate, as I was, and I read a paper somewhere that in Sweden about 70% of patients have oral B12. Indeed, there is a paper somewhere about the resistance of the medical profession to the delivery of B12 to a considerable percentage of B12 deficient patients by oral means.

    I also take Betaine Hydochloride with Pepsin to get the most out of food -borne B12. I hope.

    The forums on pernicious-anaemia-society.org are open to all, very educational.

    I use myrios.co.uk for private B12 testing ( £29 ) as I have no wish to experience again the utter contempt and anger I encountered from GP.

    Hope this helps you, remember, I am not a doctor, just a desperate person who was sinking fast.

  • Thank you both so much for your replies, it really helps to know I am not all alone battling this nightmare.

    I am pretty certain I have a problem with B12 no matter what the test might say, it simply beggars belief that something so cheap and easy to treat, that causes so much ill health, is ignored by so many doctors.

    I would like to think it is isolated but having suffered with 'irritable bowel' all my adult life, the past 20 years of which left me disabled and unable to go out, I know differently! I 'cured' myself (of this part of the illness at least) 18 months ago when I discovered I am lactose intolerant, bowel symptoms cleared up within days.

    I have been treating with Methycobalamin since July and my tongue is so much better, I don't know how long it takes for B12 to get into the system properly but the tongue getting better indicates to me that it will work.

    I am going to add Biotin and Folic Acid, I have a problem with hair loss and wonder if this might help, I will also take more of the Methylcobalamin too.

    Am I right in thinking there is no point in further testing as I am supplementing now?

    Once again, thank you so much for responding, I really appreciate the help and am desperate to be pointed in the right direction.

  • Hi, Throid,

    Perhaps this link might help you?

    martynhooper.com/2012/07/02...

    and perhaps also Kevin Byrne's dissertation entitled "The Enterohepatic Circulation of Vitamin B12" available from the Downloads section on the PAS site, in which he makes a very clear distinction between "oral" and "sub-lingual" and an explanation of why the sub-lingual method is to be preferred.

    I should say that re Luna's remarks about folate, mine are always top of the ref range, without supplementation.

  • Hi,

    Oral B12 rarely addresses the problem of ongoing B12 deficiency (PA) Even the Jarrow 5000 sublingual are not as effective as injections for many people. Any type of B12 that is being supplemented needs a good supply of folate, often people's test results for folate come back as well within the ref range yet time and time again, I read of people that need folate in the top end of ref range to feel any benefit from B12 supplementation. This is certainly the case for me and 2 years later, I still need to take high amounts of folate in order for my injections to work effectively. I inject 5 times per week and no matter how hard I try, I cannot cut back from this.

    Have you considered the active B12 test that is carried out at St Thomas' Hospital in London? This is a far more accurate assessment of the actual B12 that is being utilised at cell level in your body. For those that don't know, this is a private test that you pay for, you have to have a Dr's referral letter and they then send the results through to your Dr. I believe that they can also test MMA and homocysteine if requested. A lot of Dr's are not aware of this test or do not agree with it. Some people have sought the help of a private Dr for the referral letter as they cannot convince their GP.

    I am going to do this for my teenage daughter as her levels are 251 yet the GP Says that she is OK despite having horrendous symptoms. My serum levels when diagnosed were a pitiful 88, this is why I now self inject, I cannot survive on 2 monthly injections as recommended by my Dr, they said 2 months as I had and still have Neuro involvement. At least I am now living my life again.

    I am currently being investigated for HypoT as having one auto immune disorder puts us at greater risk of others, having HypoT puts you at higher risk of having B12 D. All Dr's should be investigating both conditions when one or the other is diagnosed but very often they don't as they don't consider these conditions important enough!

    I hope this may have helped you and good luck!

  • Hi Luna

    Yes, I'm aware that injections are the recommended route although there have been some studies that suggest sublingual can be as effective. I am considering the tests but having discovered the white matter changes am very reluctant to stop B12. I have requested MMA and Homocysteine but Endo not aware of either test!

    Auto immune disorders are a nightmare, I have suffered from this since I was 11, I'm now approaching 60 and the level of medical care has been appalling and doesn't seem set to improve. I really hope you don't have hypthyroidism on top as it's so hard to get any decent medical care or help for it, it's another nightmare as you simply can't rely on the tests for a diagnosis, when you do get your results do post them on the thyroid forum as I'm betting they will give you a better interpretation than the doctors will, beware the TSH test.

    Where do you get the injections and what type of B12 are they?

    I would like to say that I can't believe they didn't treat you with levels of 88 but sadly I just don't know what you have to do nor how ill you need to be before being taken seriously. These days I just thank God for the internet and forums such as these - a total lifeline.

    Fingers crossed for you, keep fighting!

  • I have just cross posted with you and would just like to say that if you are considering the private B12 test you will need to stop supplementing with any form of B12 for around 6/7 weeks in order to get an accurate result. I cannot go a week without B12 injections so this test would not be appropriate for me and I am probably as well as I am going to be anyway.

    B12 deficiency does cause gastric/bowel problems but if treated properly, very often the symptoms clear up. Many people think that they have, or are diagnose with IBS only to find that this isn't the case one deficiencies have been addressed. This was certainly the case with me.

    Regarding hair loss, have your ferritin/iron levels been checked? Very often low ferritin goes hand in hand with B12 D and being low could also cause thinning hair.

  • Can't face stopping the B12 just in case, so paying out for these tests would not be viable from what you say.

    For me the discovery of the lactose intolerance has been like a miracle, I wonder how many other people are suffering from lactose intolerance and being told they have 'irritable bowel'?

    I think I have had ferritin/iron checked but came back normal, I am going to supplement anway as I simply don't trust these tests anymore and I will do anything to restore the hair, anything!

    Thanks Luna

  • Hello, Could you please give me a reference related to the period of time necessary to be off B12 supplements prior to having testing performed? I'm not criticizing your response but have been searching all over for just this information for a friend who wants to be tested. Thank you so much. Leilanilea

  • Hi I am running tests if you live in the Lancashire area these include,

    Vitamin B1,Vitamin B2,Vitamin B3,Vitamin B6,Vitamin B12.

    Ferrum(Iron),Zinc,Selenium.

    Nicotinamide:Biotin:Pantothenic acid:Folic acid:Coenzyme Q10:Glutathione:

    Biotin Deficiency: In infants it hinders their physical and mental growth. Meanwhile, adults who have Biotin Deficiency may suffer from lethargy and/or depression.

    Pantothenic Acid is a component of Coenzyme A (CoA), which participates in the reactions that convert Carbohydrates, Proteins and fats you acquire from food into energy. Without enough CoA, your body will feel drained of energy and you can feel sluggish and disinterested in your surroundings. Lack of this can lead to excessive Stress and/or Insomnia. People often experience Chronic Joint pain and in time it can lead to Joint Deformation

    Physical and Mental Fatigue: Q10 is vital to the production of energy in the body. A deficiency can cause extreme Physical Fatigue. People with low levels of this enzyme may feel tired upon waking. People will also experience mood changes such a loss of enthusiasm, mild to moderate depression, irritability and a decreased ability to handle stress.

    I could go on and on my web site isn't up and running as yet so if you would like more information please e-mail me at the raoy@thequantumshaman.co.uk or call 077-878-477-97 between 1PM and 4PM Monday to Friday we not only test but we can give you advice on how to correct your condition hopefully the natural way.

    "I have no wish to experience again the utter contempt and anger I encountered from GP."

    I understand your feeling as I have had this treatment myself and it's not very nice,this seem's to be becoming the norm as I talk to more and more people a complete disreguard of the patients feeling and an unwilliness to listern.

    The complete package that's 14 test in all is £77.00 for an e-mail report or £100.00 for a written one.

    I Wish You Well.

  • Hi Thyroid,

    I am not risking being under diagnosed so am having the thyroid tests done privately which include free T4, free T3 and TSH alongside some thyroid antibody tests. I am also having a cortisol test as I understand that this needs checking alongside adrenal fatigue before I embark on any thyroid treatment, should I need it.

    Out of interest, I could not tolerate lactose or wheat for 6 months just before I was diagnosed with PA but after 1 year of treatment with lots of B12, I can now eat these things again. I was tested for coeliac and lactose intolerance but they came back negative. My Dr did treat me with loading doses of B12 and then once weekly, after lots of fighting on my behalf, for 6 months. It was when they felt that I could go o to 2 monthly injections that I came to my senses and started self injecting. A lot of people have had to resort to this on the Pernicious Anemia forum and they have never looked back. It was with their support that I took this decision.

    I buy my Hydroxocobalamin from Germany and get my needles, syringes etc from a UK company.

    I also saw a private Nutritionist who was a god send. She did a vitamin and mineral analysis panel for me and the results were truly enlightening. I was on various supplements to bring my levels up and they really helped.

    Are you taking a good B complex vitamin? Very often we become deficient in other B vitamins when we are taking a lot of one or two B Vits. These can make a difference to how we feel.

    I will post my results for thyroid when I get them on the forum. We always ask people to do the same on the PA forum as we know that results are nearly always misinterpreted by our Dr's.

  • I'm so sorry you are another one who has to pay out for tests we should all be able to get on the NHS, but I think you have no other option. I am also worried about my adrenals, I have an adrenal adenoma but the Endo doesn't take it seriously so am wondering about supplementing. Trouble is I'm taking so much at the moment and with adding in Biotin and Folic Acid as well I'm reluctant to add any more just yet.

    I was negative for Coeliac too as my symptoms also suggested this, would love to eat lactose again - miss cheese! but the health benefits are more than enough to keep me off it, mind you, if I can get the B12 right who knows?

    I was taking a high dose B complex but it seems to make the nerve like pains in my back and arms worse so I stopped it, no idea why it did this. I do get them in the multi vit though.

    Do keep us posted with your thyroid results, these things are so intertwined - we all know this - why don't our doctors??

  • Luna, would you be willing to PM me the German supplier of hydroxocobalamin and the name of the UK company for needles/syringes? I would be most grateful.

  • Hi Throid

    I had the B12 problem with a reading of 131 and like Raoy above, I addressed this very successfully by taking (Cytacon Tablets) the licenced form of Cyanocobalamin at 50micrograms twice daily, PLUS :- B1 - B2 - B3 and B6 all in a tablet made by Activis (Vitamin B Compound Strong Tablets) also taken twice daily, (morning and Night) available from your local chemist. The science behind this was that after taking tests for TTG, Intrinsic Factors and P/ Cell Antibodies which all came back (NEG), I decided that at 70 years of age I may have a cell penitration problem. Well the idea was that B2 is needed to activate B6 and again B6 is needed for the absorption of B12. Your sore and inflamed tongue could be due to a Vit B2 or B3 deficiency this can also cause cracked skin around the mouth along with mouth ulcers. Via the above method of B vitamin taking, I successfully raised my B12 level from 131 to 478 in under 8 weeks. However, I would state that although your serum level may be XXXXX you need to be aware that your active B12 level may still be very low. Talk to Guy's - St. Thomas Hospital, try ringing Denise Oblein on 0207 188 7188, she will help you reach the best Consultant for your needs. Good Luck, hope you soon feel better, but don't give up the fight.

    B12 Turbo

  • Thank you for this, I've been a bit wary about getting any tests given that I have been supplementing with B12 and think this may skew the results, is it the same with active B12?

    My Endo is retesting the B12 despite the fact I told her it was a waste of resources as I am supplementing with high doses of B12, so what will happen is that the result will come back high and on my notes will be written high B12 so no problem there!

    I could scream!

  • Hi Throid

    My research seems to highlight that you can take all the B12 you like and the serum reading can go up to zillions, but the active B12 can still be Ziltch and as I understand it, it's the active that really matters, you need to ring Guys Hospital talk to Denise Oblein and if possible see if you can get to speak with Dr Dominic Harrington, he is Guys Scientific Director. If Dominic will take your call, then he is the man with the answers if anyone has them. Whilst speaking to Denise, might I respectfully suggest that you offer to E-mail a comprehensive analysis of all your test results and details of your B12 intake to date, this will, if you are successful in getting Denise to put you through, then this will provide Dominic with a case history upon which to base his responses to you problems and questions. Oh! don't forget to include your personal profile, you know, age BMI how long you've had your problems etc. Best of luck B12 Turbo

  • I know this link is not meant for me but I hope you don't mind me piggy backing on this thread.

    I am new and have only recently come across your site. however the more I read on here the more I think I might have a problem with B12. I do eat lots of meat and dairy and docs tell us that if you do you can't be deficient...however I have been crashing periodically and getting less and less energy, I have severe indigestion, upset bowels, very ridged nails, loss of muscle ( which is scary), feeling weak all the time, very very tired and lots of pins and needles. I already suffer with hypothyroidism and vitiligo so autoimmune is obviously a running issue in my health. However am always blaming everything on hypothyroidism but am very well medicated for this (on a natural dessicated thyroid) and support my adrenals but still keep crashing. For the last two months have been taking B12 sublingual -the type you recommend- with a high B complex tablet which contains folate -It is only 1000mcg per day but after 2 months I feel a bit better and other people are noticing my improvement. Am able to go for a little walk now.

    i haven't taken a high dose of B12 but I would be grateful if someone could comment as to whether it will still skew my blood test results? Am not sure if I could give it up for weeks on end in case I deteriorate.... I was going to ask my GP to test for B12 alongside the tests for Coeliacs ( though I don't think this is now the problem).

    I rally would appreciate any advice, many thanks. x

  • I'm with you, I tend to blame all my ills on my thyroid which I've had severe problems with all my life.

    I completely cured all my stomach and bowel problems when I discovered my lactose intolerance so that aspect wasn't caused by my thyroid!

    I too have that loss of muscle thing, ridged nails, pins and needles etc. I am dealing with the dietary problems with alternate day fasting which is quite successful.

    I would like to know for sure if I have a B12 problem but like you am more than a little reluctant to stop taking it having only recently fully understood all the wider health implications of a deficiency.

    I guess I should check that my intrinsic factor is working but for me I think at the moment self treating is probably my best way forward, I no longer have any trust or faith in the doctors to help me through this.

  • Hi,

    I have the opposite problem to you. I am well medicated with B12 and folate plus multi B complex but appear to be having problems with my thyroid, it is never ending!

    Your symptoms do suggest B12 deficiency and you appear to be displaying classic deficiency symptoms. Muscle weakness/pain, bowel problems and pins and needles seem to be very common and I can entirely sympathise with you.

    If you have a malabsorption problem in your stomach then no matter what foods you eat your body won't be able to extract the B12 from food or OTC supplements that you need. Are you aware of parietal cell antibodies and intrinsic factor in the stomach? Even when tested for these 60% of people test negative as the tests are either not very accurate or the antibodies are only present at the very beginning of the disease. Both these are needed to be able to extract/metabolise B12.

    Any B12 supplementation, even a low dose in a multi Vit will skew any blood serum results that are taken. In order for you to get tested you would need to cut out all B12 and folate supplements for around 6 weeks. Folate is also very important as it is needed in order for the B12 to work. Most people with PA need a very high ongoing dose of folate, as I do.

    A much better and accurate test is the active B12 test done at St Thomas in London. This measures the active B12 at cell level rather than the useless stuff that is floating around in your blood. This cannot be metabolised by the body so therefore cannot be used. This is where the general GP's blood serum level is inaccurate as it only measures serum level and not active, hence Dr's often say we are fine based on those results when we are clearly not.

    I had coeliac and lactose testing alongside endoscopy and colonoscopy because of my awful stomach problems but all came back clear. In my case, these symptoms only cleared up when I got high amounts of B12 and folate.

    Have you looked at the Pernicious Anaemia society? They were a life saver for me and give very good advice and wonderful support.

    I hope that you get the help that you need

  • Isn't it miserable? endocrine problems seem to be never ending and so poorly treated, I have absolutely no time nor respect left for these doctors who seem to be quite happy to leave people with the most horrendous symptoms totheir own devices, what do they think we are going to do?

    I am waiting for Biotin and Folic Acid to add to the regime now, I really don't feel able to leave off the B12 for testing, I nearly had a blue fit when they told me I had white matter changes and don't feel able to run the risk of leaving this off.

    I too was tested for Coeliac and went through the colonoscopy nightmare, I've been luckier in being able to identify lactose as the problem, but again this is quite basic - why did the miriad of doctors I've seen through the years not test for this?

    Is there an easy test for Intrinsic Factor? I'm seeing my GP on the 3rd and intend to ask for some tests. I guess it's the same story for active B12 in that you need to leave off the supplements?

    I'm going to look again at the Pernicious Anaemia society website, I'm quite shocked to learn that people with thi condition seem to be getting as bad a dealfrom the medics as those of us with thyroid issues!

    Thank you so much for your support.

  • Hi thyroid,

    Intrinsic factor is a simple blood test for antibodies but you would need to leave off all supplements for at least 2 weeks before requesting the test and please also bear in mind that only 60% of people have antibodies that show in the test. The antibodies seem to be more detectable earlier in the disease. Dr's annoy me as I have read of some that will not give an official diagnosis of PA unless parietal cell and intrinsic factor antibodies are detected, yet we know that for the 40% of us that do not produce them, we still have PA as we cannot utilise B12 from our diet alone!

    Good luck!

  • Oh dear, doesn't seem to be a lot of point in doing this then. I will continue on the path I am on and hope for the best!

    Thank you!

  • Thank you Luna and Throid for your comments -it is all really complicated....all this thyroid and B12 stuff....lol So much to learn! this is exactly how I was when I was diagnosed with hypothyroidism..trying to work it all out as Drs don't' really help as they lack knowledge and skills on this -seems that this is true too of B12 deficiency...hey ho

    I think I might just leave the testing and carry on with my B12 supplementation -my symptoms are abating on my little sublingual top up. If I start to crash again or the symptoms increase then I will have to do what you said and stop the supplement for 6 weeks (funny that's the same period of time they tell you to eat gluten before you can be tested for Coeliacs....!!) and go through the blood tests. I gather the active B12 blood test is the best one.... I don't think I am Coeliac now as my symptoms of upset bowels- constipation, diarrhoea, rumbling, wind and indigestion are really stopping now -am amazed!! the only thing i can put this down to is the Methycobalamin B12 1000mcg which I pop first thing under my tongue and Lamberts high complex vit B50 which also contains a good dose of folate. Seems I hit on the right combination to support myself. And as the weeks go by I am continuing to improve. Will my GP listen if I go and explain?.....hmmm....I doubt!

    I did try to go on the Pernicous Anemia Society website but it won't let me access its info without paying a subscription fee of £20. As I don't know if this is my problem i was rather loathe to pay out -maybe this is mean of me but I am constantly buying stuff to get myself well....after ten years of this i sometimes wonder if this is a dream and the best i can hope for is more good days then bad.....lol

    Luna-Thyroid UK or TPA (Thyroid Patient Advocacy) are good websites too if you want more info on hypothyroidism and there is no subscription :) and they both have very supportive knowledgeable forums.

    Thank you, thank you, thank you :) :) -where would I be without great people like you on sites like this giving out good knowledgeable info..... xx

  • hi i have pernicious anaemia and on 3 monthly injections wasokay for a while but now getting numbness in hands and feet had a word with my gp who says i can go 10 weeks but noless in between injections. does nyone else have this problem

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