Hello everyone. Same old story. I booked my 3 monthly b12 injection I've been having for past 15 years. Gp says no more & did blood tests. FBC normal apart from low WBC 1.3. B12 high but low iron. No idea why b12 injections were started in the first place just that my level was 130. I attach his reply to me. I've seen a gastroenterologist in the past (5 years ago) who thought I might have macro b12 which can give falsely elevated b12 levels because my b12 injections were stopped for about a year yet when he did a blood test they were still very high. He recommended fir my GP to recommence injections as I was having symptoms. I really don't know what to do - or how to approach the GP. Shall I try tablets - I've no idea what dose to take if I do.
Thank you so much again for your help - I'd be lost without you. I guess from the blood results that I haven't got Pernicious Anemia.
Here is the copy of the text I received today:
"Your latest bloods tests confirm that your vitamin b12 levels are high and that you should be able to absorb it from the stomach.
Thus you no longer need injections and can either increase b12 in your diet (meat mainly) or take an over the counter supplement (apologies for the mistype in my last message to you. it is NOW advised that patients buy vitamin b12 supplements rather than have on prescription.
You iron level is slightly low but you are not anaemic. Please can you reply to let me know whether you have much iron in your diet?"
I would add that I have a good all round diet which includes meat & plenty of veg!
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Irismay
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Hopefully somebody can help you. Not back on here until Friday. I do hope you are a member of the Pernicious Anaemia Society. So, you can ring or email them.
I do hope you have a copy of the gastroenterologist’s letter from 5 years ago. This :-
‘It is NOW advised that patients buy vitamin b12 supplements rather than have on prescription.’
It appears that it is the Usual Cost-cutting Exercise that is occurring in the Primary Care Networks.
Thank you so much fir your reply. I do indeed have a copy of the gastro letter. Maybe I'll try to get an appointment with my GP & talk it through as I am so confused! X
Thats is awful. . . . . . . . 15 years of jabs and off just like that. . . . . I can think of words fro those types.. . . . . Hope ye find some degree of success in your trials. . . . .
Do you know what your ferritin count is? You can have low ferritin without anaemia, a condition rather like B12D/PA which is not taken seriously by medics. Low ferritin can be very debilitating.
Hi - my ferritin level is 18 & GP just asked if I have iron in my diet. I do eat an all round good diet so I guess he'll say just take some iron tablets like he told me to take b12 tablets! Thank you for replying x
18 is much too low. Mine hovered around 30. At 30 you're regarded as ferritin deficient and action should be taken. I was taking oral iron for 9 months before that test so I concluded oral supplements were not enough. I had to pay privately to see a haematologist and have a ferritin infusion at my local private hospital. I have the face to face consultation next month and will post then. I have experienced a steady improvement over the last 6 weeks. I had been injecting EOD and had reached an improvement ceiling, hence my request for a private referral.
Thank you for that & I'm glad you are feeling better. I guess the only way to try & get my level back up is to try iron tablets & see what happens. That hasn't been suggested by my GP yet so I will include this when I suggest he reads the NICE guidelines which was helpfully suggested to me. X
I've learnt through experience and research that in a percentage of PA people there is a low ferritin issue. My GP had no idea about this whereas a haematologist may well. Mine did and was prepared to test my hypothesis by my having an infusion. I'm aiming for a level of 100. I have a blood test next week at my surgery to check the level.
It states quite clearly in the guidelines not to retest !..... nice.org.uk/guidance/gid-ng...
It is damned obvious your B12 levels will be high after 15 years of injections. This withdrawal of care has nothing to do with your health it's just another money saving scam. You have gut issues so your hardly likely to be able to absorb sublingal. Instead of ignoring your low iron your Gp should be treating it. Your Dr needs to be educated with regard to how to treat your deficiency. It's your health at stake here so be firm.
Thank you for your reply it is so much appreciated. I am going to drop a line to the GP with a copy to the surgery manager with a reference to the Nice guidelines. X
serum B12 can be high even when deficient, especially on hydroxy injections. It is because of antibodies to transcobalamin. Treatment should not be based on serum b12 levels. If at all, MMA, MCV and homocysteine can be checked.
In any case, you can either self-inject or take an oral. In my experience, cyanocobalamin oral works better than methyl ones. You may try either but if you find problems with one type, don't hesitate to experiment with another type.
Do you have any more info about antibodies to transcobalamin? I know that it can cause retention/ high blood levels but this is expected on injections and the issue is rarely mentioned here.
Essentially, those that develop these antibodies due to hydroxyB12 injection will ALWAYS have a high serum B12 levels, basically to compensate for the low transcobalamin in their blood (the B12 transport protein). I believe this also happens in some genetic conditions with low transcobalamin from birth, although this is quite rare.
Even in the absence of the antibody issue, if one is on any kind of supplementation, serum B12 goes up temporarily and many times, treatment is stopped by just checking these levels. Big mistake!
It is unfortunate that many doctors don't know about these things and mistreat patients just based on their serum B12 values :(.
Thanks. I had read that paper and note at the end that they found no untoward effects from the antibodies. A few people here have mentioned their levels are off the scale when tested and it is always stated that it’s normal when injecting but maybe if antibodies are produced it’s not always normal. I don’t understand the mechanism that keeps b12 levels so high with antibodies and I have never heard of high b12 levels compensating for low transcobalamin.
transcobalamin is the transport molecule. Antibodies to it would reduce it. Hence, to get the same amount of B12 to the cells, serum B12 has to rise proportionately.
As I said before, for all people, serum B12 rises temporarily but returns to normal after a while. However, in the "antibodies" group, it does not return to normal ever.
Testing for serum B12 once one has been on injections is pretty useless. They should test active B12, MMA or homocysteine to get an idea.
Interesting. That makes sense - I didn’t know that antibodies reduced the amount of transcobalamin and that was the reason for high serum b12. Where did you read that?
Does that mean then for some people loading doses over a fortnight initially are not a good idea? Because of the risk of creating antibodies?
Does b12 carry on rising permanently and what I wonder are the implications?
I have not read anywhere specifically, but "antibodies to transcobalamin" means that these antibody molecules attack the transcobalamin molecules, so these must be reducing.
Clinically, these antibodies and a high serum B12 value have not found to be relevant, as the body has adjusted by simply increasing the serum B12, leading to the same amount of B12 transported to the cells!!! Another example of the amazing adaptability and redundancy in biological systems!!!
These antibodies and their possible ill-effects (not known as of yet) are one of the reasons cited by the US Medical fraternity to stick to aqueous cyanocobalamin injections and not switch to other forms (there is also something called suspended cyanocobalamin that is retained in the blood longer and allows for more absorption, but that also leads to these antibodies).
I personally don't believe that the UK system of loading hydroxy injections followed suddenly by 3-monthly shots is the best. Hydroxocobalamin is retained very well by the body and much lesser frequent injections give very high B12 to the body. In my experience, the frequency needs to be gradually reduced and not abruptly. This is the schedule in the US: Every day for a week, then once-a-week for a month and then monthly - for cyanocobalamin.
The antibodies to transcobalamin do very gradually reduce but the person does become prone to them and most probably, he/she will have a high serum B12 for life. What are the implications? So far, studies claim none, but who knows? Let us not forget that a switch to hydroxy injections was done primarily to reduce the frequency (and cost) of administering injections and has nothing to do with a better efficacy compared to cyanocobalamin, so I would take such claims of "No implications" with a big grain of salt!
I will keep researching. I did see a study of a group of people whose levels were monitored monthly following a series of hydroxocobalamin injections and after a couple of years the results varied greatly. I had assumed high levels due to retention were a good thing.
Thank you for giving me factual info - you are far more knowledgeable than I'll ever be! Brain fog & concentration are my biggest problem at the moment! Just a quick question - Would you know how long it takes after stopping b12 injections for your levels to drop to normal? I has my injections stopped about 5 years ago fir about 6 months. In that time I saw a gastroenterologist because of severe stomach pains & my b12 was re-tested & it was above 1500. Would my levels have dropped in that 6 months of Would they still be riding high? Thank you again for your knowledge & help. X
Thank you very much for your advice about the b12 oral - I've no doubt I will have to take them eventually so that's really helpful. I'm pretty sure I won't be offered any further tests- the GP is pretty dismissive & quick to shut me down with any questions I ask.
just to add, 1000-2000mcg/day is suggested. Kuzminski 1998 experimented with 2000mcg/day of oral cyanocobalamin and got very good clinical response in almost all patients (takes 2 months to really kick-in). I may also add that I found that some brands don't work as well as others. Since these supplements are unregulated, I guess the quality is not maintained by some brands. We have tried Nature Made and Source Naturals with good results.
It’s maybe an idea for you to read the new nice guidelines and ask your doctor to read it too. When injecting testing levels is not appropriate as they will be raised- but this does not indicate that you should stop injecting. Testing for intrinsic factor is not always successful as false negative rates are quite high.
Neurological damage - non reversible - can happen when continued b12 deficiency occurs. Guidelines advised treat if patient symptomatic ….
Thank you replying it is much appreciated. I am going to politely ask the Dr to read the guidelines. The injections have worked for me for 15 years & I know weeks before it's due that I need it due to my symptoms. X
“Your latest blood tests confirm that your vitamin b12 levels are high and that you should be able to absorb it from the stomach.”
The only way the second deduction could be supported by a blood test is that it found you IFab negative, and the doctor has erroneously concluded that this means you don’t have PA.
It doesn’t.
We have given up on the doctor dance, which even at best would not give an adequate injection frequency, and now SI. Quite a jump for us, but we are now pretty slick at it, and it saves an awful lot of heartache and uncertainty.
I agree. I still have constant muscle & stomach issues even after my 3 monthly. Self injecting would be a huge step for me & I wouldn't know where to begin!
If I was you, Irismay , I would ask for a copy of your test results.
These are the tests that you may have had (or may want to have): all are available on the NHS but some are easier to access.
Intrinsic Factor Antibody test (IFab):
Intrinsic Factor is necessary for the body to process B12 but there can be antibodies that attack this. The presence of the antibodies can be found in this test only if they are at that moment active. The result would be given as either "positive" for the presence of antibodies or "negative". This test cannot be used to eliminate PA as the problem, since those with PA are only 40-60% likely to get a positive result. A positive result confirms PA however and cannot be argued against as it is 95% accurate. Martyn Hooper, founder of the Pernicious Anaemia Society, had to have three such tests before getting a positive result.
Parietal cell antibody test:
Intrinsic Factor is produced by parietal cells in the stomach. Gastric atrophy will prevent the production of Intrinsic Factor. 2 causes: 1) Helicobacter pylori bacteria and 2) antibodies that attack in this case the cells themselves (autoimmune atrophic gastritis).
This is also not a PA confirmation: although positive in 80% of those with PA, it is also positive in 10% of those who are "normal". For this reason, NICE do not recommend this test.
Methylmalonic Acid (MMA) test:
This test can be used as a secondary test for B12 deficiency (although not specific to PA) in those who have suspected B12 deficiency symptoms but with a borderline B12 test result returned. It is not easy to arrange for a GP, but most often seems to be available from secondary care sources - especially haematology.
MMA links with B12 in the bloodstream, so an insufficient amount of B12 reaching it will cause a build-up of MMA. This can be measured by a blood test. For those with B12 deficiency, this would be cleared by having B12 injections, giving the waiting MMA sufficient B12 to form links and continue to cell/tissue level - and alleviating symptoms. This would occur rapidly, certainly by the time that the 6 loading doses had been administered. This does not however cure the B12 deficiency nor identify a cause.
If both B12 and MMA are found to be building up in the bloodstream, this would indicate a malfunction in transportation. The patient in this case would have the symptoms of B12 deficiency, as the combined MMA/B12 is not getting to cells or tissues because they are not forging a link. This is called Functional B12 deficiency.
Ferritin, folate, vitamin D and thyroid tests:
All these can be affected if you have B12 deficiency. They should be monitored.
Difficult to distinguish one set of symptoms from another sometimes as there are overlaps and often simultaneous treatment. When I started having B12 injections, I was also given 3 months of treatment for both ferritin and folate. I was also given vitamin D and Raloxifene on prescription as I was found to have osteoporosis of the spine. Thyroid struggled at first but okay.
I was told by my GP that ferritin below 60ug/L can cause symptoms. Later I was told by an Oral Medicine consultant that he would prefer my ferritin to be above 80ug/L. Mine was around mid-30s and quite difficult to stabilise.
This will give you some indication of how low your ferritin result looks.
Thank you EVERYBODY for your time & valuable advice. I put together an email this morning incorporating bits & pieces from your messages & a copy of my gastro letter from 2019 & popped it off to my surgery. I have just had a phone call ftom my surgery to go in tonight for a b12 injection. No other communication & no doubt there will be a sting in the tail but I'm so grateful to get this today as I'm feeling rubbish. I hope to get some advice from someone about my low folate soon too. You are such wonderful advisors - thank you again 🙏.
"No idea why b12 injections were started in the first place just that my level was 130"
I don't know what the range is in the UK, but in the US it varies a little 198-500 so in the US 130 would be extremely low. Mine was 221 and my doc thought that was "in the tank" were his words. What kind of symptoms were you complaining about to make them start you on injections?
When you stopped taking b12 for that year, ( could never do that!) how long did it take for symptoms to return? I think THEY are confused and causing you undue stress and confusion. It sounds like you have some dots that need to be connected. Why are they saying you don't have absorption problems? Did you have an actual IFAB test? Or was that silly remark based on your B12 levels? If it was levels, then they are very wrong. Levels should not be rechecked after starting injections. Yet they all do it and freak out. 🌷
Hi - I wasn't ever told why my b12 levels were so low - it was 15 years ago & I can honestly say I don't remember what my symptoms were! I had an intrinsic factor blood test Monday & it came back negative. When my shots were stopped in that year I think I went on a gradual decline with stomach problems & general weakness, fatigue, nausea, muscle twitching. I feel that way a couple of weeks before I have my 3 monthly injection. They tested my folate Monday & it came back low but haven't suggested anything to help it yet. I 100% agree with you that they need to join the dots with this as I have been to a gastro who says I have gastritis, a rheumatologist who says ihave a connective tissue autoimmune problem & bone marrow edema & a heamatologist! I am so confused! Thank you fir your reply x
I'm in that situation myself right now. I have tests from all over the place with all these specialists but nobody's connecting the dots. Soon I hope to get an appointment at the Mayo clinic. My Doctor is going to put in a request to see if they can connect all the dots.When you had that IFAB test, how long before that did you have an injection? A negative IFAB test doesn't mean you don't have PA. If you had any b12 in your system, it could muddy the waters. If your symptoms come back weeks before an injection, it sounds like you need twice monthly injections. Many inject everyday, so if you need more, that is perfectly understandable. This doctor, after 15 years, should not have stopped your injections. The fact that you have been fine for 15 years says that they were working. I would show your gp the NHS guidelines. Or find a new one.
Also, low folate can mask a b12 deficiency. I have had 6 hematologist and not one of them knew what they were talking about B12. Every one of them tested my B12 levels and every one of them said they were too high and that I was injecting too often. That tells me they don't know what they're talking about.
Do you have access to a holistic nutrional specialist? I wish I did. I feel they would really know what my blood tests show.
Oh good luck with your appointment with the Mayo Clinic - that is a very high esteemed place! I hope they can get to the bottom of everything for you. When I had the IFaB it was exactly 3 months after my injection. Because of all the help I've had here I cobbled together an email & sent it to my surgery this morning with attachments & I now have an appointment this evening fir a b12 injection. I'm so relieved but I'm sure there will be a sting in the tail - they never give up that easily!
I did see a holistic practitioner a few years ago - she was fab & I had some meds made up & went gluten & dairy free which changed my life. My dear dad was celiac but I tested negative but I'm very sensitive to gluten.
Thanks so much for sharing your journey with me ' it sounds very similar. X
Ohhhh that is wonderful you got an appointment for an injection. You might consider treating yourself in the future, so you don't have to depend on anyone else and so you can inject whenever your symptoms return without having to wait. That is great you saw a holistic doc and they helped you.
Thank you very much. I was denied once at mayo but I didn't have anyone supporting me with it. Now my GP has said he will write the request instead of me. And include all my reports etc. If I find out anything helpful for anyone I will share it. If I get to go.
Celiac disease can cause b12 deficiency. I would not doubt that your dad was b12 deficient. I'm sorry he suffered from that. If you are sensitive, you should definitely be careful and they should not be arguing with you about B12d and injections. Why they do this after 15 years blows me away. Good luck with this. Yes, it seems we all have very similar stories. 🌷
Yes . . . . I been on B9 since before my first jabs . . . . I had cut the 5mg down to every other day few a couple months but did ask just the other day when I was in getting blood taken and got told to keep taking the 5mg as it was very important to keep the B9 in front of the B12 if you will. . . . She looked up my last bloods taken and said your B9 is fine. . . . . Others may say different .. . . . I have good doctors who treat many B12D patients so should have a fair idea about the complaint and all that goes with it. . . . . .
I'm taking the B12 pills instead of the injections my naturalpathic doctor wants me to and my blood levels are getting better now. I'll be getting my monthly bloodwork done next Monday and my levels should be going up more so I'm not worried about that. I'm hoping my homosystene level stays down like last time. And my iron level is still good but could be a little bit higher but I'll find out and the same for the anemia. I'm not going to worry about it
Have been reading your posts on Thyroid UK of 4 years ago, concerning your daughter. Do hope she is making progress ...
Am wondering if you have had your thyroid tested - ? Hashimotos can run in families and present with overlapping symptoms. I notice you have also posted on a heart forum. Again there is a connection with thyroid function and the heart...as well as B12/Folate. 🌻
Hi there- thank you so much for writing to me & following my stories - we don't sound like a very healthy family do we!! I can confirm my thyroid has been tested but only the straightforward TSH test. It was within normal limits! I always thought it might be my thyroid giving me troubles as my mum & daughter both have hashimotos, so though mum sadly is no longer with us.
I am happy to report my GP has now reinstated my b12 injections after reviewing my medical history 🙏.
I always try to read back stories before replying !
Testing only the TSH ( a pituitary hormone - NOT a thyroid hormone ) is inadequate. As you know from your daughters tests the FT4 -- FT3 - TSH and Thyroid antibodies TPO & Tg - needed to rule out auto-immune thyroid - aka as Hashimotos....
I know there's more to thyroid than our drs are prepared to go. I may well consider going to a private Dr in the future but they are soooo expensive - my daughter is buying a house & planning a wedding - say no more 😫! She is still struggling with her health issues & has a nodule on her thyroid which they keep an eye on. I have just started folate & iron - I really hope that will go some way to making me feel better 🤞. X
Private Testing available on-line - with Special Offers from time to time. Take a look at Monitor My Health on-line. A NHS lab within the Royal Devon and Exeter Hospital. Thyroid UK website will give you more options. No need for a private Doc - the wealth of patient knowledge/experience on TUK is worth exploring 🌻
Thank you so much - I will take a look. I remember doing lots of research for my daughter & ending up seeing a private Dr actually in Exeter but that was many years ago! Online testing is a brilliant idea. Thank you 💐
I have Hashimotos - diagnosed in Crete in 2005. Returned to UK in 2019 and refused the T3/Liothyrilonine treatment I was so helpfully prescribed in Crete. Self treated with T3 for the last 10 years. Self inject B12 weekly due to gut surgery. So many of us frequent this helpful Forum AND Thyroid UK. Perhaps your daughter would find it helpful to join TUK. I have been a member since 2011 and I am still learning 🌻
I'm glad to have helped you a little bit but like I said you should contact your neurologist and see what he says about the B12 and see what he says about the injections versus the pills. Good luck and I will let you know how my bloodwork goes. You can email me at gigrape@hotmail.com if you want tooKen Atwood
Hi Iris. Have you access to your own medical records on the NHS app by any chance. If yes , look through them all and try to find your initial diagnosis 15 years ago of low B12 and see whether you were tested for IFAB ( intrinsic factor antibodies) at the time . This test can help with a diagnosis of PA . If you have a copy of this it can prove you need lifelong injections. Unfortunately even if the test was negative it doesn’t prove you don’t have PA as the test is often negative in people who do have PA. A positive test however is a firm indication that you have antibodies to Intrinsic factor meaning you can’t absorb B12 through your stomach
Hi - thank you so much for your reply. I do have access to my nhs records & I didnt think they went back thar far so I checked!! I found in 2008 I had an Ifab test & it was normal. It just said cobalmin deficiency - level was 139 & They prescribed b12 tablet form. 2 years later I had another blood trst & my level was 141 so they started injections. In that 2 years I was back & forth to the GP with all sorts of symptoms & I think they must have labeled me a hypochondriac! Thank you again for your help- I have learned a few things today! X
Hi Iris, so next step ask at your GP for a second IFAB test. Just make sure you book it when you’ve had two weeks off any B12 . I had two IFAB tests the first was negative . The second positive. They were two years apart approx. Say that you believe you have PA and could they do the test one more time . There are papers that do mention the fact you can be Intrinsic factor antibody negative PA . Even the NHS info online states this so take a look . Good luck
I have reservations about it but there are some good bits.
Also track down the local B12 deficiency guidelines used by your ICB ( Integrated Care Board) in England (Health Board in Wales/Scotland) as your GP probably uses these.
Search online for
"(name of ICB) B12 deficiency guidelines" or
"(name of ICB) B12 deficiency treatment algorithm" or
"(name of ICB) B12 deficiency management"
Search forum posts here for "local B12 deficiency guidelines".
If you still can't find them, submit a FOI (Freedom of Information) request to ICB/Health Board asking which B12 deficiency guidelines they are using and for a link to or copy of them.
It's helpful to get the exact title of the document.
Hi Sleepybunny - I do hope you are recovering well from your injured arm & thank you so much for taking time out to help as always 💐. Your input & knowledge is always welcome.
I have managed, with help of the lovely people on this forum, to cobble together bits & pieces into an email & forwarded to my surgery. They have after further investigation decided to reinstate my injections 🙏. The GP said my ferritin & folate are low & to perhaps take some supplements - no advice on dosage etc! I went to my local health shop & purchased 400ug of folate (ithink this equates to 1mg a day!) & some liquid vitamins containing 4.8mg of iron per 5ml spoon. The reason for the liquid iron is that my stomach cannot tolerate iron pills. However since starting the iron supplement I have had terrible stomach pain & nausea. I haven't started the folate yet as I'm introducing things slowly to see what reaction I get - my stomach & bowels are so sensitive. My question is - if my stomach can't absorb B12 - can it absorb iron & folate? Sorry to be so vague - i really do not understand medical stuff! Do you think I should persevere with the iron?
Just as a bit of background my dad has celiac & we think his dad did too as he had a miserable life with his stomach problems. My celiac test came back negative but my autoimmune bloods were positive. I don't have dairy or gluten as I am highly sensitive to both.
A brief reply on your view of the iron & folate absorption if & when you get time would be much appreciated, I dont want you working when you're not well. Thank you so much xxx
"They have after further investigation decided to reinstate my injections"
Well done for standing up to them.
"My question is - if my stomach can't absorb B12 - can it absorb iron & folate?"
I'm a bit vague on the process of iron and folate absorption. Maybe you could search for "iron absortion" and "folate absorption".
You could post your question as a new thread which should attract some answers and I'm sure people would love to read the good news about your injections being reinstated. Good news stories are always welcome.
Posts on older threads often get missed.
I once spoke to someone who told me they were taking a water based iron supplement because they thought it would be gentler on their gut.
If interested, search for "water based iron sachets uk".
Fabulous - thanks so much. I'll do a bit more research on the iron & folate absorption & then post up if I can't resolve. All the best & thanks again for your help .💐
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Vitamin B12 levels
Help please!! 
B12 or Iron? advice needed please 
