Hello - I was diagnosed with B12 deficiency around 15 years ago. My GP at the time said that I had Pernicious Anaemia and was unable to absorb B12 from my food.
Apart from a gap in 2016 when my then GP said that I had too much B12 in my system, withdrew the injections for a year which resulted in my levels becoming critically low, I had 3-monthly injections until the 2020.
In March 2020, my current GP asked that I move to tablet form. I take 100mcg Cyanocobalamin daily.
Last week, I received a text from the pharmacist at the surgery. She has said that as my levels are now normal, I should in future purchase B12 over the counter. She has removed B12 from my repeat prescription list. I will now have to pay for medication that I would usually receive free. She has also recommended that I eat foods that are high in B12.
I have not yet responded - I wonder whether others had received similar notifications without explanation or discussion. Thank you
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Willow404
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I am sorry to read this. It may be a case of the pharmacists taking over the role of prescribing "to help the poor overloaded" doctors out and basing their decision on test results only without referring to the (old) guidelines which say that "once treatment has begun no further testing is necessary". The B12 levels in your blood are bound to be high.
Is the pharmacist aware of your P.A. diagnosis 15 years ago?
I am not a medically trained person but have had P.A. for 52 years.
Many many thanks for your reply and support. I will check my records re intrinsic factor readings over time and then see how far I get with the pharmacist before speaking to my GP. Nobody has asked me how I actually feel - I’m quite weary and achy - they will say it’s my age ..
My surgery have been doing that too! Luckily I have a positive intrinsic factor test, and each time I ring to make an appointment for a jab, they go away and 'check' if I am due.
They put everyone without a positive test on a trial of pills, re-test in 3 months, and if your levels are normal, then no more jabs. Seems very wrong, as we all know that intrinsic factor tests are unreliable, and just because your levels are normal at 3 months, doesn't mean that they will be in another 3 months or more, at which point you'd be feeling like pants and would have a real struggle to get jabs reinstated.
As for the ruddy pharmacist! The hospital wrote to the surgery years ago saying that it would be good to put me on a trial of a drug. G.P. said no, because she felt it was the wrong thing for me. Pharmacist recently took the hospital letter as gospel and put me on it. The result was not good. Pharmacists are not doctors, and shouldn't act like they are!
Thank you so much for your reply! I am going to formulate a response to the pharmacist but want to do it in a well informed way - your experience is really helpful.
I will include reference to the NICE guidance that I found on this site earlier.
It includes mis-prescribed medications as well as reactions.
Willow404 can report the oral 100mcg Cyanocobalamin daily from March 2020 because it is not 1 mg/ml of Hydroxycobalamin I.M.
Different dosage, different formula, different route into the body. Good that you, Willow have a plan and definitely worth going back to your G.P. to tell them the Pharmacist will not prescribe your cyanocobalamin.
I was diagnosed with neuropathy 9 years ago and it was from a side effect of harvoni for hep c. I wasn't told at that time that my B12 levels were low until I saw my naturalpathic doctor and he wanted me to have monthly bloodwork done. They found out that I had low blood levels of B12 and other things were low. He wanted me to start taking the injections but I am not taking them but I'm taking the B12 pills and my blood levels have gone up to 81. So I figure the next time I have my bloodwork done it will be a lot higher then I can ease down on taking them. Right now I'm taking them every day. Good luck with your doctor and the B12 pills and hopefully things will work out for you
B12 tablets are very cheap. But that's not the point. How on earth are you surviving on just 100 mcg of B12 a day? That is such a small amount. I have PA and have to take sublingual B12 which is 5000mcg. per dose and I take 3 doses a day.
Your blood levels are irrelevant, you have PA. So at very least you need high dose oral/sublingual, which 100mcg is not, not even close. I take approx 9000mcg daily. You had a return of symptoms in 2016 and you would seem to have a return now. I think I would be making a list of what I'd got rid of and what has returned or is starting to. Best wishes
I take 50mcg twice daily and my active b12 is 128 top of the range but my iron levels are at the bottomof a sc ale and iron tablets for about 3 months have made no difference
I haven't had tests since 2021. My level was over 1700 and my GP told me to stop taking B12 as my level was dangerous. This was before I found this forum so I took his advice. Three weeks later I had another 'episode'. I restarted B12 and haven't been back to see him since.
I have my bloodwork done once a month and my B12 is back up to 81. I've been taking my pills once a day and when I have my bloodwork done next week it should be a lot higher. I have it done by next Tuesday
It is not safe to transition to 100mcg oral B12 if you have PA since enough would not be absorbed. They evidently believe you had a dietary deficiency or an absorption issue which has now been resolved. Or they believe PA can be cured. I am wondering which it is.
100mcg is a fine dose for daily maintenance for vegans with working intrinsic factor. Not so much for someone with PA.
You were diagnosed with B12 deficiency. This isn't necessarily the same as PA, although the terms have tended to be treated as interchangeable, which is wrong.
If your GP was correct that you had PA all those years ago, it's highly unlikely that you would have recovered and no longer need B12 supplements. B12 injections are typically 1mg [1,000 micrograms], and on maintenance dosage, this is typically every three months.
Some people are able to absorb B12 orally despite having PA, but by no means all of them can. The typical dosage for this is 1mg [1,000mcg] orally, typically daily. In a year, this is considerably in excess of the amount that would have been injected, but for some, it can work.
The daily requirement for B12 in an adult is between 2 and 5 micrograms, [from memory]. 100 micrograms is clearly in excess of this, and if you were able to absorb, with intrinsic factor, [and therefore didn't have PA] then it would probably be sufficient. As it's water-soluble, any excess is excreted in the urine.
So, when you were diagnosed with B12 deficiency, you needed treatment. Injections were the way forward. Your GP said you had PA; this may have been correct, in which case, nothing should have changed.
Narwhal10's advice [as always] is sound. Your GP is there to manage your situation. Someone has taken a decision to change your treatment, and this seems to have been done without informed consent. You deserve better!
Maybe consider sending your gp the new guidelines and ask for an appointment. It is not up to the pharmacist to decide whether you have PA or another condition causing your symptoms. They are there for rashes and earache and general stuff.
Its all part of austerity imposed by the tory/LD coalition from 2010. The objective to cut spending by any means.
On 12 July 2010, Andrew Lansley unveiled a new health white paper (which eventually became law as the Health and Social Care Act 2012[ describing significant structural changes to the NHS under the Conservative and Liberal Democrat coalition government. Among the changes announced, PCTs were to be abolished by 2013 with new GP-led commissioning consortia, clinical commissioning groups, taking on the responsibilities they formerly held. The public health aspects of PCT business would become the responsibility of local councils. Facilities owned by PCTs would transfer to NHS Property Services. Strategic health authorities would also be abolished under these plans. Following widespread criticism of the plans, on 4 April 2011, the Government announced a "pause" in the progress of the Health and Social Care Bill to allow the government to "listen, reflect and improve" the proposals.
The Health and Social Care Act 2012 received royal assent on 27 March 2012 and PCTs were formally abolished on 31 March 2013. Some of their staff were transferred to commissioning support units, some to local authorities, some to clinical commissioning groups, some to NHS England and some were made redundant.
It’s all become so fragmented I know longer really understand how the system operates. I suspect that a diagrammatic rendition would look like a tangled web. With big holes in it.
This is a financially driven decision. The better you have received is because all areas are under pressure to reduce prescribing costs. One way to do this (which NHS England has endorsed) is to ask patients to buy food supplements where a poor diet is the cause of the deficiency.The pharmacist will be acting with the GPs approval. If your diagnosis of pernicious anaemia has not been clearly coded on your records, then the multi disciplinary team of health care professionals will not be aware of it. This will be further compounded by your b12 dose not being consistent with a diagnosis of pernicious anaemia, so there is nothing there to make them look further for a reason for your tablets.
I absolutely think you need to speak to a member of the team, but I urge you to go in calmly. Tell them what your symptoms are, when you were changed to tablets, that your understanding is that you have pernicious anaemia and therefore you should be on injections, not tablets.
I am one of those awful good for nothing pharmacists in general practice who are apparently only good for rashes and such. If someone consulted me with that attitude they wouldn't be getting what they wanted. In contrast, I am working my way though a lot of patients and starting B12 injections. I may be over stepping the mark to some of your eyes, but I specialise in pain management (amongst other things) and therefore view this as a core part of my job.
If someone shows me a rash, I pass then on to a nurse or doctor (never been trained to manage those).
I also have pernicious anaemia, so come at this from both sides. My mission is to work from inside the system to improve management for patients.
I like to read down to earth honesty. . . . . . The NHS is in bad shape and austerity should been ended years ago. . . . .. No need for it to continue in the UK but the Gov is milking it for all its worth. . . . . . I think your advice of going in lightfooted is good. . . . Not all staff are at fault but all staff are under pressure and not being paid for such and the last thing they want to see is someone who is going to sweep the floor with them as we'd say here. . . . . It wasnt you by chance spoke at the PA conference in Bristol a few years ago???. . . . I get 3 monthly and could have monthly here but choose to DIY and just every 3 months to tick thier box and my own box. . . . . I am really happy where I fond myslef and dont mind a few euros per month although I only have a small pension . . . Acyually costs less than the diesel to go the nurse. . Better my health first as holidays etc. . . . .
Yes but I am not in NHS land. . . . . I would never receive what I have here if I were still in NHS land. . . . . I think I'd be either dead or bedridden by now had we stayed there. . . . . . . . Completely undiagnosed after years of illness . . . . . One mention to my GP here and its. . .Let me see your hands/nail. . . . Scalp . . . .Tongue . . .Family history. . . .Blood tests and that appointment was during the 1st covid outbreak . . . . I goyt my first jabs during the 2nd outbreak. . . . . Couldnt be more thankful. . . . . Never had to take an antidepressant ever since . . . . .
Not really apart from not being able to do much would get ye down a bit. . . . . . I had something like anxiety as in my body would do fight or flight maybe once an hour but my head/mind was not in panic. . . . . Mirtazapine maybe helped a bit but a bit would be the right word . . . . . All the physical symptoms but few of the mental ones. . . Very exhausting . . . . . I have anxiety now on occasion but more like something everyone has I feel . . . . Since SI I have not had same in years. . . . . . I had several physical symptoms too. . . . . Scalp was seriously itchy . . . Nails split with one thimb nail split since early 2000s at least. . . . I used epoxy every few days as it was not really livable with without the epoxy. . . . One big toe split similar. . . . . Lips would splt and coreners of mouth bled a lot of the time and worse in cold. . . . . Had to manage the rest. . . . My hands tingled such I could burn myslef . . . . Thigh was so numb it was like it didnt belong to me if anything touched it. . . . B12 stopped a load of t but not quite all . . . . . B6 put paid totally to the lip problems and helped the scalp tp near normal. . . . . At least I dont have to take to it with both hands like crazy . . . . . Both improved with B12 but were not cured . . . . . Lips have not split in severla years . . . . .The brain fog was the worst . . . . . . I will never be normal but I am as close as I going to be now. . . . . .
I really appreciate your reply and your advice and respect your profession.
I definitely have a deficiency that is not related to my diet. When B12 injections were withdrawn in 2016 (after a test that showed high levels), my levels plummeted and I was taken ill whilst abroad.
I will speak to the GP and approach the matter calmly. I appreciate the information that I have received on this site which will help me to ask the right questions.
For some people, supplements work. But you should have at least 1000 mcg daily. For others it does not. It worked for me for awhile and then it did not. I need injections now.
I;d agree with ye. . . . . . In my 40s I crashed . . . . . Nothing wrong with me apparently . . . Good business to attend to but could barely get up. . . . . . Anyhow . . . Somehow I learned that if I took loads of supplements as in 6x more than the RCA and I had a craving for roast beef or similar I started to feel better. . . . . . That lasted I think 7 years until I had sore toes and NHS GP told me to stop eating red meat. . . . . . Walla .. . . . Down again. . . . . As best I read the IF system if you will does not always fail with a bang and for a period oral will suffice like we had family who ate liver but some still died young as in their 40s and the oral route will be temporary. . . . .
I was craving eggs and ate tons of them (2 per day) and the yeast in the beer in Belgium seemed to help me a little bit. But I still slid downhill in spite of getting a lot of B12 in my diet.
I managed over 7 years but I was always going down too . . . . . I was using an awful lot of supplements and the cravings were fierce . . . . . I'd stop in a shop every morning for roast beef slices and they'd be gone by 11am and lunch would always be cooked and involve beef. . . . . . Today I barely want the stuff at all. . . . . . . Pea's and spuds and whatever greens particularly brussel sprouts. . . . . . I have lost interest on carrots but I'd eat parsnips instead. . . . . . . . Never lost the taste for meusli first thing though.. . . .
It is interesting how we both had cravings for food with B12. I kept eating eggs for many years after but have cut back on them now things are going smoothly because of the injections. I wonder if it is because those foods made us feel a tiny bit (but not enough) better.
I could not care less I never seen beef but I did crave it. . . . . . . If you have close contact with animals such as goats which are a good example and one takes not well let it out into any overgrown place like forestry or scrubland and I'll bet she comes out goof as new in a week if at all possible and def as good as any vet will do, , , , , Goats are not so man bred as some other animals . . . . . So I think that cravings are not bonkers as long as it is not for refined foods . . . . . I think our body is telling us things. . . . . I am not much in favour for all this quackary as I see it with Dr Berg,, eating herbs and god knows. . . . . We are often trying to tell ourselves that we have seen or read others using eating because thos does this and that does that when mostly ye have little need of whatever latest hoowong dirtweed fashion is on the go. . . . . Good wholesome food. . . . . . . I have became fasinated with spuds and pea's . . . . . No odds what else is coming there has to be spuds and peas on the plate. . . . .
It will be a standard letter/text, sent as a blanket to all patients prescribed the 100microgram tablets as this is national policy.The problem has arisen because you were changed to the 100 microgram tablets at the start of the pandemic when we were trying to reduce face to face contact so we could maintain services. The ongoing problem is that we haven't identified the people that were changed to tablets to put them back on injections.
It suggests that your diagnosis of pernicious anaemia is not clear in your records, because if it was, you wouldn't have been changed onto tablets, and certainly not 100microgram tablets (to be fair, at the time we were changing people's over, nobody had told us what size to use, so initially we just had to do the best we could).
You just need to contact your surgery, explain the problem calmly, and that should be sufficient. If you know the date that your diagnosis was made, and the gp's mane who made the diagnosis, that will help someone find the information in your records.
If it isn't sorted with the polite approach, then you write to the practice manager and explain the problem again.
The fact that you've managed this long with only 100microgram tablets suggests that you are able to absorb some b12 orally, although since you are describing symptoms again (achy), presumably not enough for your needs.
Unfortunately I see it as a sign that the NHS is crippled and about to collapse.
Sorry for the doom and gloom but it really is what we're looking at right now. The fact they think a cancelled prescription for an inexpensive vitamin will help is what boggles the mind but it's also why they resist B12 injections since the weight of the cost on nurses time is far too high for their budgets.
The way things are going at my local surgery, it's all about cryogenic injections and this sort of BS. Stuff they probably get paid for and can gloat about 'fixing' knee problems by blocking pain.
I'm sorry but the NHS is a joke now. Self treatment is the only way to go as far as I'm concerned.
I predict that, eventually, the NHS will be run down and most likely we'll have to pay some contribution towards our healthcare.
I don’t think a contribution to healthcare costs is a problem. What constantly strikes me as absurd is the ridiculous and cumbersome way the NHS operates. They seem prepared to spend any amount of money to prevent you from seeing a gp in person and if you do you are restricted to discussing one problem only.
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