B12 journey

Well I have had loading doses. Six for 2 weeks every other day. The tiredness went straight away. The nerve damage and mental damage will take a little longer. But I no longer take IBS tablets I don't have obsessive thoughts as much, I feel I am in control of my mind. I did start researching being mindful and found this very useful. I got PA and b12 deficiency because of my under treated thyriod. But it's complicated. Now if anyone is still suffering on their thyriod journey then it's best to get your b12 and ferritin levels checked as I had very low iron also. Being b12 deficiency is very dangerous and needs to be treated. I was clueless about it.

45 Replies

  • Bravo! Congratulations on your new improved journey of life.

  • I too have just finished my 6 loading B12 doses over 2 weeks and felt the tiredness lift after a week and a half in. The foot tingling stopped and my eyesight improved. I'm hoping that this will be long lasting and will improve my T3 conversion.

    I'm glad to read that you had a similar result and that it's not imagined by me.

    Next dose mid November.

    All the best.

  • Yeah my next jab is 26th of November. Did you get diagnosed with pernicious anemia too. Your thyriod can cause these problems. People say that 3 mths is not enough but it depends on the person. We are very lucky I did get a really good book too it's called could it be b12 by Sally m. Pacholok. They simplifie it. The internet is good but books are better. Well good luck on your journey and hope you carry on getting stronger. No one understands the things we go through. Did you get physical anxiety too? X

  • Glad you were able to benefit from the advice on the forum....so pleased you are feeling better. I too have learnt so much from others here and find that my health has improved.

    Not sure it is the Hypothyroidism that causes the B12 deficiency or the other way round :-) Chicken or egg. I wrote a post about it once :-) As PA is auto-immune - do you Hashimotos as well ?

    Thanks too for updating us....

  • Am not sure what I had first but when at first tests a year ago my thyriod was border line in sep and didn't have anemia then. When started on the thyroxine in December my health was really bad and depressed. I started to get better. Am on Levo 75 now. But I get symptoms when level goes up. Things are settling now. I can read books again, going the gym and I am applying for a new job as not happy were I am. The doctor says that I coped really well with all the health problems. But the anxiety was crippling. But fingers crossed that might go too. It's much better thanks to this site x

  • Does under medicated hypoT cause P anaemia? As NHS mismanaged my hashimoto's and i ended up with p anaemia and always wanted evidence that that was what caused it - i know the 2 are linked but don't know how

  • Am not sure if they are. But the thyriod sucks up all your goodness. The doctor says they both go hand in hand. I think my thyriod gave me the b12 and PA. All not pleasant. But the shots make a huge difference to your health and it's life saving too. It is potentially life threating if b12 isn't medicated and I didn't know that x

  • Congratulation Happy-go-lucky. I hope to join you in this treatment but even getting my GP to refer me to a specialist is proving very difficult.

  • They don't listen. Am lucky to have had a good doctor who would listen to my symptoms properly. She knew straight away what it was and got the tests done that day. You have to have lots of other tests done to find out why you are b12 deficient. It takes a while before you get the jabs. You should get your ferritin levels checked to. I ended up in hospital and things got sorted much faster. Hope you get sorted it's a nightmare. I got a good book called could it be b12 by Sally m. Pacholok. It's an interesting read. X

  • I'm wondering if some of us have more trouble because finding out that we have PA so long after they labeled us with something like ME (26 years in my case) they are worried about possible repercussions.

  • If you have had PA for a long time the damage can be irreversible but the b12 can improve symptoms so it's worth looking into. Do you have neuro problems?

  • I get a tingling in my wrists, and and fingers but not all the time. Shortage of breath is one of my worst symptoms.

    I should explain that a GP let me have a single injection as a trial earlier this year. I felt soo much better after it but the effect only lasted two weeks, at which stage the GP pronounced that it was just placebo effect. (yes I know that I should have had the six injections to properly assess it)

    Four months later I am still battling!

  • Hi Hypopotamus

    I think you may be right considering the problems my sister has had in getting treatment after years of ME. I am wondering if it was B12 deficiency all along, especially being vegan (B12 being only obtained from animal foods).

    Don't give up trying to get more injections (they are not just a placebo) and, if you can, supplement with B12 sprays, tablets etc. but make sure it is methyl cobalamin, which is more easily absorbed. As everyone here has already written about, the consequences of permanent neural damage are too important to be ignored.

    Good luck.

  • Thanks again, and don't worry, I won't give up.

  • So pleased for you - hope the recovery continues. I too have very many of the symptoms of PA and saw my GP this week but because I have been told my B12 results (791 in May) are good they won't test for PA ('they will just throw them out' she said). She is, however, giving me a full blood test including coeliac, 'because there are many other things that could be causing these symptoms' - 'if the results don't show anything THEN we will consider a PA test'. I have been walking on numb feet for almost two years, I am unsteady on my feet, I have tingling in my arms/legs, tiredness, lethargy, can't get my head around things, sore mouth and tongue, change in taste but the most worrying for me at the moment is my eyesight. Lights/colours are very bright, once giving momentary blindness during recent sunny weather (Iv'e had my eyes tested 3 times in the past year but Optician can't find anything wrong, my eyesight is good). PA left untreated can cause blindness, and some nerve damage will never recover. I am 76 years old and have always kept myself active and up-to-date with things. I was diagnosed with Hypothyroidism 16 years ago and although not brilliant, Eltroxin suited me -although I was constantly at loggerheads with the doctors because I took 125mcgs instead of 100mcgs because I only felt well when I was on 125mcgs, but usual thing, they were only interested in blood results. Since Eltroxin was withdrawn I have struggled and am now trying NDT - my doctor knows this as she asked if I was still on 100mcgs of levo, but didn't say anything other than 'we will have to check your thyroid in a month's time'.

    While I was telling her about my symptoms she was tapping away on the computer arranging for the blood tests - what would they do without blood tests? - they certainly don't listen to what the patient has to say. 'Come and see me when the results are back and I will explain everything to you' she said. So we will see. She is the same doctor who, a few months ago gave me medication 'which will help with the tingling sensation you are having' she said. When I found they were anti-depressants I wouldn't take them.

    My husband is suffering from Myeloma and is on permanent chemotherapy (he's on a trial). He also had a colonoscopy 6 years ago for bowel cancer. I have to care for him too so can't afford to be ill myself.

    Sorry to unload myself but I feel very frustrated at the moment.

    Best wishes to you.

  • I am so sorry you are having such a difficult time fran5-tests.

    It is true that PA causes irreversible neurological symptoms if not treated urgently and Bluedaffodil is also right that PA and autoimmune thyroid are linked both ways. B12 is also more difficult to absorb as you get older.

    Our family has been battling to get B12 injections for my sister for some time. She had developed neurological and psychiatric symptoms after years of ME, Hashimoto's etc.

    We were told a similar story by her doctor about ruling out other conditions but a scan for Alzheimer's had already proved negative. I was shocked and frustrated at the surgery's attitude to trying B12 injections. I had read Martyn Hooper's book, "Living with Pernicious Anaemia", "The B12 Deficiency Handbook", and "Could it be B12", and recognised all her symptoms over the years. This and the fact that she had been vegan, with autoimmune disease in the family, made it vital to try B12 injections as soon as possible. The consequences of not doing so were already frightening as I had already discovered the neurological symptoms would be irreversible if not treated urgently.

    After much persuasion and pleading, including referring to the BNF and NICE guidelines, the surgery consented to trial three injections of 1 mg per week for two weeks, After that, I don't know, but we have already noticed a marked improvement in all of the symptoms. Communication from the surgery has been very poor, in spite of asking them to refer everything to the family as my sister was unable to understand or remember complicated information.

    A doctor friend told me that their surgery was not allowed to treat with B12 injections because it was not safe (they were afraid of overdosing and being sued !). All the books I have read stress that you cannot overdose and it is completely safe so I'm left wondering why they have been given this information !

    There is no comparison with the small cost of the injections and the health and social consequences of not giving it.... It is a fact that surgeries cannot survive without the income from the more expensive drugs and I cannot help thinking that this and relying solely on flawed tests for B12 and thyroid disease is contributing to devastating ill health, misery, loss of income, etc.


  • I am sorry to hear about your sister but b 12 shots are very cheap. They should of given her loading doses. 1 every other day for 2 weeks as this will stock her up and get levels up quickly and then 1 every 3 mths for life. If your still fighting for the right treatment then I would recommend you buy the jabs on line and learn to inject. It may be the only way. Good luck x

  • Thank you Happy-go-lucky. At present, she is supplementing with nasal spray, tablets and patches. She is trying to remember, but thinks she was told they would give another injection in October! We are worn down trying to get through to her GP, who only works one day a week. We will try the injections if she relapses but this week she was able to do a bit of gardening !

    Very best wishes for your continued recovery.

  • That's good so it's doing something. I think you can get injections on amazon. It's a huge company and a safe one to use. But I will carry on my research and do what can on here x

  • PS. I wasn't very clear but was trying to say in my last paragraph that PA is same battle people with thyroid disease are up against....the root cause is not acknowledged with the medical profession relying solely on flawed tests and not taking sufficient account of symptoms. The result is that patients are denied relatively cheap B12 injections and adequate thyroid medication(also relatively cheap) and instead prescribed more expensive antidepressants, tablets for hypertension, high cholesterol, etc.

  • So sorry to hear about your sister Polaris, but I hope she maintains her progress. She has a lovely supportive family - where would she be without you? She obviously could not fight the doctors on her own.

    Very best wishes to you and your family. x

  • Thank you fran5-tess. The same applies to your care of your husband. I wish you both the very best of health.

    Thinking about your husband's story after his operation, and you may already know this, but anaesthetic in surgery and dental injections inactivates B12 and will adversely affect anyone who is already deficient (from the "B12 Deficiency Survival Handbook"). This, and learning that B12 decreases with age, was what especially alerted us to my sister's deficiency...she was unable to drive herself home after a dental injection and all her symptoms became much worse.

    I really cannot understand the GPs lack of knowledge in recognising these important clues.

  • Thank you Polaris I didn't know that, but will keep it in mind. Because my husband is on chemotherapy he is not allowed to be seen by his normal dentist but has to attend hospital for any treatment.

  • You can off load your problems anytime hunny that's what we are here for. I feel very lucky I have only been on this journey for 12 mths. But have made a lot of progress. I didn't suffer with eyes. But when first got ill everything seemed brighter I had sensitive ears. I felt fast and had awful palpatations. I got all tests done came back fine. I had therapy for the anxiety. Was diagnosed with low thyriod in dec. was at rock bottom them. Always asleep, felt strange like was on drugs. I was put on Levo 25 things did improve. Then put on Levo 50. Felt ok. Then things went down hill last mth. I had always had the pins and needles in hands and feet, cold tired, brain fog, shaky, thinning hair, bad nails. But I went on holiday 1 mth ago and I felt awful with balance and anxiety. When I came home I just broke down crying 2 days after hol and said I couldn't cope anymore. So I went to hospital. I was told I was b12 deficient before I went away. But the hospital sorted it and I got the b12 loading doses in my surgery. I feel much better not 100% but better than was. Am always worse when due on my period. I really hope you get sorted also get the book could it be b12 by Sally m. Pacholok. It's an eye opener. Just keep going back and take that book with you. Take care x

  • Thank you Happy, I recently bought the Book Could it be B12 and am working my way through it. I agree it is an eye opener. I also 'Googled' PA and that was the reason I saw my doctor this week. People in the US have been awarded millions of dollars because they were not diagnosed with B12 deficiency early enough and were left with permanent disabilities. We don't want money, we want our health back. Its a simple test - easy to treat - not expensive - cannot overdose - if showing the symptoms why not try a course of injections to see if they help, surely that's not too much to ask.

    I would mention that when my husband had his colonoscopy and was home, he wasn't recovering as he should, he couldn't eat, wasn't sleeping - he was suffering from hallucinations and I asked the nurses coming in whether he could be suffering from anaemia; at first was told 'well he has had a major operation' I said yes, but he should be improving but he is getting worse. Anyway he had a blood test and within a couple of days his doctor rang to say he had a B12 deficiency and would be receiving injections every two days for ten days and should start to feel better after the fourth injection - which is what happened. How long this would have gone on if I hadn't asked the question who knows. He went in for a major operation B12 deficient, and it was missed. He now has injections every two months.

    Even when people's B12 results come back 'low' they are still not treated. Would these doctors let their own families be treated this way - I think not!

    How wonderful is this Forum - everyone is so helpful and supportive - I only discovered it last year and its been a life saver - can't thank everyone enough - I may not have all the answers yet but I will keep on trying.

    I hope your recovery continues and you soon re-gain good health.

    Take care too x

  • Oh good I glad you like the book. It's made me think how fortunate I was to get it sorted so quick. I just kept going back all the time. Don't get me wrong I get pockets of anxiety and feel strange but not like I did. I only just finished the. Loading doses this week. So just got to wait. It's dangerous that your husband had an op when he was b12 deficient. My walking wasn't affected but was always asleep, had aches, pains, couldn't eat just the smell and look of food made me bork, couldn't sleep properly at night at times. The ears are still ringing Maybe it's a neouro prob and will get better over time. But things are settling now. Am glad your husband is on the right track. Give him my love and take care x

  • Thank you x

  • This sounds very interesting! First I've heard of this, have you any more information please.? I haven't got PA ,but do take B12. Thanks Bev.

  • I didn't get any info I had to go off and research. I got books, went on the internet and chatted to people. I think I want to set up a group and help people through this horrendous journey. I have recommended a book to lots of people on here and it's like my life line it's called could it be b12 by Sally m. Pacholok. It's really interesting I got it off Amazon.

  • Thanks for info will order the book very soon. Bev.

  • My b12 is 370 but I have tingling in face and limbs, I'm seeing GP on Monday what tests did you have and were these NHS and what r the treatments you refer to are these NHS?

    Any more info be gratefully received. So glad you are making headway!

  • My B12 was lower than yours, sulamaye, but still within range. The medics maintain that all my symptoms cannot therefore be attributed to a B12 problem. I was told they had tested for pernicious anaemia (found out months later that they hadn't), so recently had a test (parietal cell?) to rule it out - they have told me now that I definitely do not have PA. The symptoms, like yours, are wrecking my life - I made a total nuisance of myself at the GP surgery recently, and they are referring me to a neurologist. The waiting list is ridiculous.

  • I had neuro tests etc done years before I even got m.e but nothing. However when I hit the m.e wall the tingling and thrumming went through the roof and when the dr slashed my thyroxine and t3 in June of this year the same has happened so my conclusion is that it is more likely linked to not getting enough thyroxine one way or another, and that perhaps all my m.e symptoms stem from this source with additional adrenal problems caused by the low thyroxine too! I have injected b12 when first ill and the tingling was the same, but I know stress eats b12 which might be why mine is lower than previously due to the stress to my body of having meds halved over night Beansmummy

  • I have no expectations from a neurologist, I think my GP was trying to placate me.

  • Important note. B12 deficiency can mimick ms and other conditions. It's something to think about. It's a silent killer and not to be snubbed by the medical profession x

  • This is a helpful site :


    An extract:

    "Vitamin B12 (cobalamin) deficiency is a common cause of macrocytic anemia and has been implicated in a spectrum of neuropsychiatric disorders. The role of B12 deficiency in hyperhomocysteinemia and the promotion of atherosclerosis is only now being explored. Diagnosis of vitamin B12deficiency is typically based on measurement of serum vitamin B12 levels; however, about 50 percent of patients with subclinical disease have normal B12 levels. A more sensitive method of screening for vitamin B12 deficiency is measurement of serum methylmalonic acid and homocysteine levels, which are increased early in vitamin B12 deficiency."

  • Thank you I will have a look x

  • You cannot overdose on b12 - there are some real ignoramuses in the nhs.

  • No you can't. When you get the jabs your liver stores it and realeases it into the body when it needs it. But if you take to much your body takes what it needs and flushes the rest out. So no risk no damage so why are the NHS so reluctant to help people x

  • Same old same old, they d rather believe I'm mad than think logically about my symptoms and get me back as a full time worker and mother! What is their problem? They have stopped using brains and started relying on 'science' too much. When I told an endo a couple of years ago that sometimes I'd measured by blood when feeling sugar crashy and it was 1,6 she told me those testers aren't accurate! Accurate enough of a type 1 diabetic to decide how much insulin to inject! Took me another year to discover reactive hypoglycaemia does exist as a condition! A proper science would have listened to my account of my symptom and wondered what was going on and why, they don't even believe the science unless they've conducted the test! Crazy

  • Do you know what your B12 levels were? Or if you have anti-gastric parietal cell antibodies?

    I have the antibodies but my B12 was 372 (range 200-900) and folate was at the indeterminate level so they don't treat me.

  • They wouldn't do a print out but said severe and tested positive for pernicious anaemia. I think if your level is 200 it's classed as borderline and they won't treat it. It's wrong in every way if you ask me. I hope you find answers. X

  • "The B12 Deficiency Survival Handbook", written by Dr Aqsa Ghazanfar, and "Could it be B12" both have information on tests and here is an extract from the latter:

    "we believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

    "For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

    I am shocked that the fact that you have antibodies has been ignored.

  • Wow, just noticed third paragraph re older adults needing to be near or above 1000 pg/ml in their B12 levels - mine are 791 (May) and my doctor was adamant that 'they' would not test any blood for PA because my levels were 'good' - 'they will just throw them out and I agree with them' she said!! I'm 76 and I told her I felt my life had been 'on hold' for at least two years as I felt so unwell. If I go shopping I just manage to buy what I need and then I have to come home - no window shopping for me - no days out with friends, I don't have the energy. I have missed out on my grandchildren coming to stay this summer for the same reason. They live locally, but they have always enjoyed coming for a 'sleepover'.

    It beggars belief that doctors have so much control over our health and we have no recourse to anything better unless we resort to going private - I have already spent nearly £600 in private doctors over the past year and am not much further forward. I dread to think what I have spent on supplements too.

  • My GP wont give me injections. Tested in Feb this year - serum vitamin B12 level was 829ng/L (180.0 - 1000.0) which looks healthy enough but the website mentioned above suggests a different test. Has anyone had this test as well and get a deficiency result when the serum showed up OK? Has anyone tried loading with oral B12?

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