Hi try to bombard you all with long story so will try to be brief 10 years on b12 injections every 3 months at first then every 2 months as symptoms returned. Fast forward to 2024 I had a Tumour removed from my spinal canal and while I was stressing over survival and dealing with recovery I went nearly 5 months without b12 infection only dawned on me after I started to get all b12 deficiency symptoms. At first thought it was the operation but these came 3 months post op so unlikely ,I received 1 injection 17th Dec24 from GP surgery and symptoms came back after 6 days , I have been fighting to get a top up before my next one is due on 17 feb25 and it’s opened up a can of worms a young gp has picked my getting b12 to peices and wants me to have a blood test to check values and I know they will be high as they always have been being injected for 10 years and has already offered me pills and says there is no record of PA which I know I have , and was told I have it ,my last blood from my rheumatologist was 1500 does everyone have high values when tested while still having B12 injections thanks for any reply’s
vee25: Hi try to bombard you all with... - Pernicious Anaemi...
vee25
The B12 values can be very high when you are getting injections. That is why it is recommended that you do not test them. If you get tired of your struggles with the system, there is info on this forum on where to get B12 to self-inject. Very best wishes! I am so sorry you have to deal with this. It sounds like every other day might be a good idea at the moment and then you can try to space them out more later after you have gotten rid of the symptoms.
Thank-you for your reply I was thinking that as well it’s so difficult trying to do the right thing I will do every other day and try to get to doing it once monthly after symptoms go 🙏🏻
mine are normally around 2000 if someone insists on doing a test I always warn them that the results will be high for B12 as I inject every month
I told the dr that if he tested every one in the surgery who has been years on b12 injections they would have high readings , but he still insists this is how he can tell if I’m deficient in b12 so I know what is coming next if I do the test he will stop my infection he already offered me pill yesterday to take and then told me all my symptoms. (classic symptoms of b12 deficiency) are nothing to do with it 🤷🏽
My Oral Medicine consultant was becoming worried about my B12 results - as I self inject twice a week, my results if tested are always above the level that can be measured (over 2000 ng/L).
His concern was that, beyond the very limit of measurement, how can one ascertain whether the B12 is continuing to increase ? It seemed a fair question to me. In his next report, he asked my surgery to help me reduce B12 injections by monitoring and supporting me during this attempt.
[Nothing was said to me by the surgery, and I wasn't about to push them !]
I saw him again a few years later, and he told me that, based on advice from some colleagues during a discussion, I should now ignore his previous concerns, that my body needed that amount to function properly, and that tablets would not work for me.
He said this in front of a group of his students, which gives me hope for the future. Teaching should stem from a lifelong love of learning, shouldn't it ?
I am happier to continue self-injecting twice a week than I would be to risk a return to a life of confusion, memory loss, cognitive issues, sensory overload and exhaustion- and would expect any medical professional to respect that this was still a difficult decision initially.
I would imagine that my total serum B12 level has been over this measurable amount now for eight or nine years, because of the frequent injections necessary for me to get a life back. There have not been any recognisable adverse side effects to this for me.
Thankyou for your reply this helps a great deal I am going to inject myself as the Gp seems more interested in not giving me anything till I have a b12 blood test which I told him it will be high it was 1,537, in September he is totally disregarding my symptoms I saw one of the drs yesterday who has recently joined practice and he even said my symptoms don’t relate to b12 deficiency and I have all the classified symptoms 🥺 it’s so exhausting trying to to battle for your health
The problem remains that there is no definitive list of symptoms for B12 deficiency that all can agree on: patients, nurses, GPs and consultants.
It becomes very clear once you have read a few posts that the symptoms we have, the severity of them and the length of time we have had them differs wildly. There seems to be many odd symptoms that you think to yourself can't possibly relate to anything else .... and yet GPs remain unable to recognise the cause. We are beyond tiredness, that's for sure.
If we only had some visible symptom, shared by all, that could not be written off as belonging to any other condition. But that isn't the case.
Testing to see that what was injected remains in the bloodstream does not give any indication of whether that B12 is active or if any of it has made its way to cells and tissues. It is a waste of time and money.
It is exhausting battling for your health, well said! I’m sorry this is occurring. Fully support you.
hi also can you tell me where you buy your vials from please i thought I’d text this already so forgive me if I have , I find the chat forums great but I get confused who I’m sending replies too 🤔🤣
wedgewood often gives out the latest details re suppliers - have a look at todays posts, I think there is an answer there.
Hi,
Just seen your thread.
"it’s opened up a can of worms a young gp has picked my getting b12 to peices"
Might be some useful info in these threads I started.
They have links for people struggling to get adequate B12 treatment in UK.
Patient Safety
healthunlocked.com/pasoc/po...
Is this the tip of the iceberg?
healthunlocked.com/pasoc/po....
I'm not medically trained.
Soooo confused!
LowB12 and iron
Symptoms not improving
B12 injections been stopped
