I was diagnosed with PA approx. 5 years ago which came about after I moved G.P. My previous G.P. was treating my concurring headaches and lethargy down to stress. Bearing in mind the headaches were severe enough that I went to bed with one and woke with one in the morning. Referral to a general medical specialist also mentioned stress. My new G.P. immediately identified my headaches, cracked fissured tongue and history of thyroid problems and arranged blood tests for folate deficiency and then hence a diagnosis of PA.
My doctor has now told me, (new G.P to the practice, past 3 month ago) I need a B12 "holiday" saying my readings are high! Since then I've experienced canker sores in my mouth, cracked tongue, extreme tiredness, chest pain, stomach pain, irritability and brain fog, oh, and weight gain. I work a 12 hour shift pattern and I am struggling... to say the least.
I have read on here that the doctor should not stop the B12 injections and treat the symptoms and not the readings. I'm seeing a different doctor of the same practice today so I intend to ask for injections to be re-started.
I wondered if anyone has had similar experiences? Do you seek referral for symptoms to see a specialist if need be? Thanks xx
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linw_123
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Hi clivealive I have read a little of your history and can see the wealth of knowledge you must have regarding P.A. I have inherited hypothyroidism as well as P.A. and it can be very debilitating for me. I have been overwhelmed with symptoms since being told to stop B12 injections. It was only yesterday when I'd read some posts on here that I knew I shouldn't have been stopped the B12 injections. I just feel a little foolish to have allowed it to happen but I'd trusted my G.P. who apparently has a duty of care for his patients?
Today, I was reinstated on a loading dose of B12 by a more senior G.P. at the same practice that stopped them. She could not answer why her partner had stopped injections and said she hadn't seen anything like it before. The culprit junior doctor had made an entry saying '12 month break B12.' I was close to breaking down in tears whilst talking to my G.P. today but other symptoms of complete fogginess and confusion overtook everything. Why would a qualified G.P. tell you to stop taking something you so desperately need? I don't get it sometimes. Luckily, I returned to make sure the wrong was put right. I feel for those people who do not and who take the G.P.s word as gospel.
I will continue to use this site as it has been so helpful and will join PAS also. I am intrigued to understand more of P.A. and become more knowledgeable to help others as you have me.
well done to you, and well done to the senior GP and let's hope the junior one will now never ever do it again. I don't get it either sometimes and I've been doing this for 11 years. We just keep going and inform as many drs as possible; it's all we can do.
Hi linw_123 I am so pleased the senior partner in your practice has reinstated your injections and sincerely hope she will remonstrate with, educate and severely reprimand "the culprit junior doctor" for their dangerous and potentially fatal actions.
Imagine what would happen if culprit junior doctor considered a diabetic's insulin level too high one day and told the patient to take a "12 month break"...!
Sadly, this episode has caused you a lot of distress, but hopefully culprit junior doctor will have learned a valuable lesson.
PAS tel no 01656 769 717 Office open 8am till 2pm every day except sundays and soem holidays,
Has your GP read teh "BCSH Cobalamin and Folate guidelines". I gave my GPs a copy. I also read the whole document myself. The document makes it clear that PA treatment is for life. I found page 8 and page 29 very useful.
I also gave my Gps a copy of Martyn hooper's latest book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" which is up to date with UK guidelines.
Have you read the pinned posts on this forum? there is some very useful info including a summary fbirder compiled from various B12 documents.
Thank you for your advice Sleepybunny. That's, just how I feel right now, doing my third 12hr night shift for the NHS, who sadly have let me down just recently!. There seems to be a lack of awareness of PA conditions by some G.P.s after reading various threads on here. Stopping B12 shots I can see is extremely dangerous and can lead to detrimental long term neurological defects. I am so pleased I returned to the G.P. and have my shots reinstated as the junior doctor I initially saw wanted me to have a B12 HOLIDAY for 12 months. I don't think I would be here to be quite frank as my returning symptoms on stopping injections were just horrible. I will also join the PAS as you have mentioned. Thanks again.
after supplementation B12 serum results mean nothing unless they are low. You should not have had your B12 maintenance shots stopped.
Unfortunately your experience is far from uncommon - no idea why GPs want to kill us all with their ignorance. You have had PA diagnosed - they should treat it properly - you don't need a further referral just proper treatment.
Can you see another GP at the practice and may be write to the GP calling his attention to the fact that treating PA and B12 deficiency isn't about treating the numbers in blood tests - it is about treating the symptoms as it isn't the amount in your blood that causes the symptoms it is your what happens at the cell level ... and it isn't necessary to have any anaemia to have symptoms so that can't be used as a justification for stopping treatment. Look throught he pinned posts for materials you can use.
Most people are able to store large quantities of B12 in their liver and release it into the ileum in bile for reabsorption but if you have an absorption problem like PA then this doesn't work and it is just a leaky bucket.
If you can't get through to the GP yourself then see if the PAS can help eg by pointing you at specific materials - you will need to join them though
Thank you so much Gambit62 for your advice. I intend to write a letter to my G.P. practice and enclose the NICE and bcsh guidelines. Today, I have had injections reinstated by another G.P. after a four month 'holiday' I was told to take by a more junior doctor. I am now beginning a loading dose and I hope to feel the benefits of B12 once again. I feel starved.. Thanks, again
The GPs should have access to a copy of the BNF (British National formulary) on their bookshelf. My understanding is that info about treatment(page 8) in the BCSH Cobalamin Guidelines is based on BNF Chapter 9 Section 1.2. I believe this page in BNF includes mentions of lifelong treatment. Page 29 of the BCSH Cobalamin and Folate Guidelines also mentions lifelong treatment.
"injections reinstated by another G.P. after a four month 'holiday' I was told to take by a more junior doctor"
I do hope there are no permanent effects from the "B12 holiday" that one GP gave you and that your letter to GPs will have a beneficial effect for you and other patients at the surgery in similar situations.
Perhaps the GPs would be interested in the section on the PAS website for medical professionals.
There is also an app about the BCSH Cobalamin guidelines from which GPs can obtain Continuous Professional Development (CPD) portfolio credits. See Link below.
I have today finished my loading dose of 6 injections after my G.P. stopped the injections for a 'holiday of 12 months.' I had them reinstated after 4 months, authorised by a more senior G.P. who said 'She hadn't seen anything like it before.' Well done to her I say..
I feel alive again already! The fog is slowly lifting, although they tell me it could take a few months to feel the full benefit again.
The culprit G.P. who had stopped them phoned me yesterday to ask how I was and to say he 'Stood by his decision.' He said that because my blood test reading was high he had to stop it because,.. 'did I know that high readings can cause heart disease?' My reply was stopping the injections also causes neuro symptoms which are irreversible if left untreated and told him what my other symptoms had included since stopping injections.
He said he had a clash of interests with the other doctor who had re-started me and that he has given other patients a long break to stabilise the high blood readings. I referred to the PAS guide that you treat the symptoms and not the results to which he didn't really offer an answer.
The practice manager and nurses I have seen query why this happened to me. My worry is for the innocent individuals with P.A. who do not stand up for themselves, do not research symptoms and take some 'professionals' word as gospel. Why aren't the G.P.s singing from the same hymn sheet on this one? What is this heart disease he mentions with raised blood test readings? Any advice is welcome.
Oh dear I feel so sorry for you, what a palaver, I'm opposite to you! Diagnosed also 5 yrs ago, but since October last year I was not getting the usual wee day or two energy surge at jag time ( 8 weekly) at end of July my gp arranged a reload of my B12 still not feeling as I believe I should so I see nurse on Monday to have bloods re-done. before I got the reload (6 jags over 2 weeks) levels should be between 200 & 800 my level was 298 but I was unable to function at that, something you said has raised a question I hope you don't mind me asking, does your intrinsic factor work? Mine doesn't so I can't absorb B12 from my food or oral medication hence the jags, you say your levels too high so maybe you can still absorb B12 from food etc so that on top of your jags maybe reason level so high worth asking about xx
It sounds like a bad time you're having of it all. Your level of 298 is pretty dire after having the reload. I hope it has improved some. I feel for you. That's one thing us sufferers can empathise with one another.
Thanks for the suggestion that it could be my intrinsic factor still working which could be giving me a high read. I have been summoned back to the G.P. as I have had my 6 uploads and they have tested my blood level again. Don't know at this stage if its high or low. I just don't know what I'm going to do but like you just feel like I'm functioning barely. I feel that the doctors are quite clueless when it comes to monitoring B12 and I will take the print outs from PAS for doctors guidance. Failing that I will ask for referral to see a specialist. Fed up, springs to mind xx
Good morning Linw,I hope when you go to your Dr they find some answers for you, there is nothing worse than feeling as bad as we do, I feel like we are just existing, I just hate feeling this lethargic, I push myself to go swimming on a Tuesday I also go out for a walk (not long) on two days meet a friend for coffee another day, my blood results came back after reload as in the 600's & my thyroid is perfect, Dr suggests it's my lifestyle !! so she has done a referral to fitness for me, so waiting to hear from them, I also have an appointment for the pain clinic 22nd of October so hoping that this will have a positive impact for me. let me know how you get on at Dr's wishing you well, take care xx
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