Hi all. About a year ago now I was found to have a B12 deficiency, and as a meat eater the GP couldn’t see why I should have such low levels if I was absorbing correctly from diet so put me on the injections. Since then I’ve moved homes and found a new GP who has said that as it’s been a year I should be having another blood test to make sure they’re working / my levels are correct. Possibly unnecessarily I am now worried this will lead to the new GP saying I don’t need the injections anymore. I used to have some serious neurological symptoms and felt generally awful so I’d be quite scared if they decided to do this as I’ve gotten used to feeling so much better for them. I’m waiting to go for my blood test when I’m nearly due another injection as I worry having one straight after will obviously show an inflated amount in my system.
Has anyone else’s GP done the same thing RE new blood tests a year later, and then still continued their injections anyway? Think knowing this would probably stop me from panicking a bit. Thanks in advance!
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Greenandpink
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Print them out and highlight the bit on page 501 that says...
Maintenance treatment for patients presenting without neurological deficit is with hydroxocobalamin 1000 lg i.m. every 3 months. Those with initial neurological deficit should receive hydroxocobalamin 1000 lg i.m. every 2 months. No further testing for cobalamin levels is required
Having had demyelination years ago, am I entitled to 2 monthly injections . Originally I was getting one monthly, this was stopped and onto 3 Monthly. (Now back toMonthly for the time being)
Would GPs know the recommendations set by Haemtology departments ?
A GP can use their own judgement which should be led by the patient's symptoms. Which is why B12 serum tests after injections have started are not required.
My cousin has B12 deficiency which has been successfully treated for a long time now with injections every 6 weeks.
My GP was told by a consultant to give me three injections a week until I could not improve further and then one every month for life.
A Metabolic Diseases consultant told me that if a rare functional problem is found, their advice is for twice-weekly injections. She also told me that some GPs ignored these reports. So as you can see, some GPs are deciding on a treatment frequency - even where it goes against advice given based on a patient's own DNA !
Your GP seems to be trying to re-establish a frequency that will manage your particular symptoms .
There is not much point to a maintenance dose that serves only to maintain a poorer quality of life than could be gained. Or one that allows you to get incrementally worse over time.
Since evidently none of us are the same, the real point to these guidelines must be as a suggestion, to ensure that GPs do not give less than a patient needs. First, do no harm.
Our worst fear is going back . If the medical profession could only recognise what a nightmare that would be for us, they would stop with these ridiculous personal theories and anecdotes :
"B12 is highly addictive"
"B12 is toxic"
"B12 is carcinogenic"
"I understand about the euphoria of self injection"
The above are all from consultants.
My own favourite though is this one from a highly suspicious nurse, when I was put on the correct frequency of injection for those with neurological symptoms:
"Did you ask the doctor for this -or did a consultant advise it ?"
" I should be having another blood test to make sure they’re working / my levels are correct. Possibly unnecessarily I am now worried this will lead to the new GP saying I don’t need the injections anymore"
I think you are right to be wary about the GP testing your B12 levels.
There have been forum members whose injections have been stopped after they recorded a high B12 level. Some have had their injections stopped when they recorded a normal range B12 result despite having typical B12 deficiency symptoms and in some cases a confirmed diagnosis of PA (Pernicious Anaemia)
My impression is that there is ignorance about B12 deficiency among some health professionals.
I am quite cynical and I suspect that reviews of patients receiving B12 injections are sometimes done with the hope of saving the GP practice some money if injections are stopped.
Some links that may be of interest if your GP is unhelpful.
Testing B12 during treatment
In UK, national guidance suggests that testing B12 levels after treatment has started is irrelevant. See links below.
May be worth drawing GPs attention in any letter or conversation to the neurological symptoms you suffered in past and to the increased risk of permanent neurological damage including damage to spinal cord if B12 deficiency is untreated or under treated. See links below.
Point 1 is about being under treated for B12 deficiency with neuro symptoms.
Point 5 is about being symptomatic for B12 deficiency with an in range B12 result.
Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.
Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.
When a letter is sent to GP, worth including a request that GP practice sends written confirmation to letter writer that they have received letter.
Proof a letter was received may be useful in the event a formal complaint is necessary.
I included a request in letters that a copy of letter was filed with medical notes.
My understanding is that in UK, letters to GPs are supposed to be filed with medical notes so are therefore a record that an issue has been raised.
Useful to have a paper trail in case there is a need for a formal complaint over treatment in future.
Letters could contain relevant test results, date of diagnosis, brief family and personal medical history, extracts from UK B12 documents, requests for referrals to relevant specialists eg neurologists, haematologists, gastro enterologists.
Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.
If you get proof of diagnosis eg positive test result/letter from specialist confirming diagnosis etc keep a copy in a safe place in case needed in future.
Each CCG/Health Board/ NHS Hospital Trust will have their own local guidelines on treatment/diagnosis of B12 deficiency. I suggest you track down the local guidelines for your area of UK and compare them with BSH, BNF and NICE CKS links above.
If all else fails, some forum members choose to self treat. There are threads on the forum about this. My personal opinion is that this is a last resort but sadly some have no other option.
I've written some very detailed replies with more B12 info eg more B12 articles, b12 websites, B12 books etc
Any chance of internal parasites eg fish tapeworm?
Do you ever eat raw or uncooked fish eg sushi, smoked salmon etc?
There are other internal parasites that can lead to B12 deficiency besides fish tapeworm.
Best advice I ever got was to always get copies of of or access to all blood test results and medical records. Can be very interesting to see what GPs have written.
There is no point checking B12 levels in your blood as they will appear sky high due to the injections. I'm not sure of the bodily mechanism that requires them to stay high to get any recovery - but it does. I was told years ago it was because it was hard to get it across into the nervous tissue that needs it to mend. But I have been told on here it's just slow though that doesn't account for needing to keep the level so high. Don't let him undermine your progress.
If it's any help, you're not alone in going through this. I am about to embark on my own journey through this after a nurse I've never met before put a note on my system saying I "needed a blood test before my next injection".
As you can guess it's come back sky high after being on injections every 3 months for 8 years, so now the doctor wants to have a word before giving me my next one, and I may have the "conversation about being moved onto something else".
All I can say to you, is I hope your new GP is understanding about what you've been through and makes no changes to your treatment.
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GP asking for blood Test after B12 injections
Want to self-inject but no GP referral
GP wont prescribe Hydroxycobalamin until further blood tests conducted despite neuro involvement.
GP will only agree to 3 monthly injections unless I have a blood test showing low b12 levels.
Why would Active B12 blood test not be recognised by GP when I have lots of symptoms?
