Hello everyone.
Just received these 2 letters from my gp, one of them saying that he's reducing my b12 injection to 2 a year instead of monthly! ( aparently my levels are 1800).
Please help me with information so I can convince him I need it more often. Even monthly is not enough...my symptoms come back after 2 weeks and I have to self inject.
Thank you!
Hi Gumball77
Somehow show the article below to show your GP that you cannot "overdose" on B12
stichtingb12tekort.nl/weten...
I wish you well
These letters being sent is awful. What is going on?
All the information is on here.to try and get them reinstated
I'm sorry this has happened. The stress given is unforgivable
Just seen you have a diagnosis of PA . They can't do that.
serum B12 levels are not a good guide to managing B12 post injections - it is a good test for identifying an absorption problem (best used to identify significant drops over a period of time).
the metabolism of B12 is extremely complex and varies a lot from one individual to another.
Significant numbers of people respond to raised serum B12 levels (an inevitable result of B12 injections) in a way that means they actually need much higher levels of serum B12 for enough to be able to get through to the cells where it is actually needed post injections meaning that the only way of really managing an absorption problem post injections is to go by symptoms.
Do you actually feel okay at the moment?
BCSH guidelines do not recommend retesting of B12 levels post loading injections unless there is suspicion that treatment is not being complied with - not explicit why this is but I believe it reflects many factors, including the impossibility of really using serum B12 to manage a B12 absorption problem.
onlinelibrary.wiley.com/doi...
This article also discusses, towards the end - the treatment of patients who report needing more frequent B12 injections
bloodjournal.org/content/bl...
Sorry to hear about the Type 2 diabetes. There are a number of forums for diabetics on HU that you might find helpful if you aren't a member already
Hi .
Thanks for your reply. No, I don't feel ok, that is the problem.
Unbelievable!!! I can't believe what I just read!
Our attempt to provide our doctor with some of the valuable backup documentation referenced on this site resulted in a barrage of impenetrable jargon coming back. I think he was replying honestly (or at least I will give him the benefit of the doubt here).
So our strategy now is as follows:-
(a) You say you are largely following the BCSH guidelines
(b) We think we’re in this box
(c) We are not getting the treatment indicated below this box
(d) Why not?
Possible answers are (a) no we’re not and (b) no you aren’t (answers we can at least understand), to which the follow-up questions are (a) what guidelines are you following then? and (b) what box are we in then?
Unfortunately, the only answer we have had so far is ‘we do this’, with no indication of what guidelines it might have come from.
But we persist.....
So sorry to hear this Gumball. Its am afraid a consequence of doctoring by numbers aka painting by numbers!! Honestly it is dreadful as it will cause you irreperable harm.
I would write formally to your GP practise requesting an explanation from them with medical evidence that two injections per year are proven to give you optimal treatment. (they wont be able to provide medical evidence of this as it doesnt exist)
I would enclose copies of the guidleines and articles about the known effects of lack of b12. Pubmed is good for medical research.
I would state that two injections per year will cause you irreparable harm.
I would then request that not only are your injections reinstated but they are given fortnightly.
I would request an answer withing three weeks and state you want your letter placed on your medical record.
By doing this you are prewarning them of the harm they will cause you. I think they are ignorant and so your letter should worry them as they will be liable if they continue down this route so they should think twice. If they refuse, approach other surgeries via the practise manager to establish their treatment protocol and then move!
This is all being generated because surgeries are individual businesses & its all about saving money!! Sigh......
Your doctor only cares about your numbers and doesn't give a damn about the symptoms you are suffering from.
Doctors think high b12 levels are harmful, they are if your not supplimenting with anything, if you are supplimenting high levels are quite normal.
He's another idiot by the sounds of it .
I don't believe he knows what level your B12 stores are at. A serum B12 test does NOT reveal stored B12.
Hi,
Have you contacted the PAS to discuss the letter?
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
PAS tel no 01656 769717 answerphone
PAS support groups in UK
pernicious-anaemia-society....
If you're already a PAS member then may be worth contacting nearest PAS support group to see if anyone else has had a similar letter.
Probably worth joining PAS if you're not already a member.
pernicious-anaemia-society....
Help with writing letters to GP about B12 deficiency
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Your local MP may also be interested in your story.
I have been having an ongoing struggle with my go surgery to have my injections as frequently as I feel I need on my last visit my gp actually admitted it was all down to cost ie cost of the nurse to inject. Said would I consider self injecting I agreed but although she prescribed ampiules and a sharps box when I enquired about needles I was told the partners had overruled and said they did not allow self injection. I am back to square one but at least I am getting injection every 2 months. I wonder can anyone tell me if they have tried B12 drops as a between injection boost? Do they help
Hey Monbretia. I self inject and my GP supplies me with the needles & syringes. Separate Needles and syringes are not on the list that GP practise can prescribe anymore on prescription...lol. So my surgery gets them from the hospital. The heedles & syringes costs the surgery nothing that way. My b12 vials are on prescription.
Self injecting is done subcut. This is the same method that diabetics use so its a nonsense to tell you its not allowed. Of course it is! My surgery were fine with this & it saves them the cost of the nurse to inject me every other day. So its a massive saving for them.
In your shoes I wpuld contact your GP practise manager to discuss. I suspect the issue is the supply of the seperate needles and syringes which stopped things for you.
Hi,
Do you have any neurological symptoms eg tingling, pins and needles, insect crawling sensations (formication), tinnitus, migraine, memory problems, balance problems, word finding difficulties (nominal aphasia), restless legs syndrome, muscle twitches plus others?
Might be worth pointing out to GP, possibly in a letter, that under treatment of B12 deficiency increases the chances of developing permanent neurological problems including spinal damage.
Neurological Consequences of B12 Deficiency
PAS news item
pernicious-anaemia-society....
PAS article about SACD, sub acute combined degeneration of the spinal cord, access to PAS members only.
pernicious-anaemia-society.... See page 2 of articles.
Blog post from Martyn Hooper's blog, mentions SACD
martynhooper.com/2010/09/21...
Two injections a year is not standard treatment in UK.
See BNF, BSH and NICE CKS links below for details of recommended UK treatment.
UK B12 documents
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
BMJ B12 article
Emphasises need to treat patients who are symptomatic even if their B12 level is within range.
BNF
bnf.nice.org.uk/drug/hydrox...
BNF guidance on treating b12 deficiency changed recently.
pernicious-anaemia-society....
NICE CKS
cks.nice.org.uk/anaemia-b12...
I would be asking for a copy of the guidelines they are using ( may need to write formal request to practice manager) and then I would ask them to point out where it says to reduce jabs to 2 a year if B12 levels above a certain point.
Some parts of UK have local NHS guidelines for treatment of B12 deficiency and these local guidelines are sometimes very out of date
.
Suggest you track down local area guidelines and compare them with national guidelines.
If in future a diagnosis of Type 2 diabetes is confirmed, I hope your GP is aware that metformin, a diabetes drug commonly used with Type 2 diabetes, has been associated with B12 deficiency.
ncbi.nlm.nih.gov/pubmed/271...
Warnings....
1) B12 deficiency is not always well understood by GPs and specialists so it pays to be well prepared for any appointments.
2) Some GPs are not able to cope well with assertive patients so be prepared for GP/patient relationship becoming strained and have a back up plan eg another GP surgery to go to.
nhs.uk/common-health-questi...
I am not medically trained.
Hi.
Thanks for the extensive information.
I will have a proper look when I get a minute. Yes, I have all of the above symptoms and yet he chooses to ignore them.
I am shocked at how ignorant GPs are in this matter!
Sadly I'm not shocked any more....I'm more shocked when someone says they have a GP or specialist who understands b12 deficiency.
Has your GP got a list of all your symptoms? Especially all your neurological symptoms?
I think your best bet is to speak to PAS soon. Best to phone. PAS office is open Tues am and several other mornings.
pernicious-anaemia-society....
I'm sure Martyn Hooper, chair of PAS, would like to hear about GP surgeries reducing jabs to 2 a year for someone who has confirmed PA.
You would need to be a PAS member to access support.
Next time you're with GP, may be you can point out to them ( or put it in a letter) that
1) PAS website has section for health professionals. It is free for them to join PAS as associate members.
pernicious-anaemia-society....
2) PAS website has useful leaflets eg
"An Update for Medical Professionals: Diagnosis and Treatment "
"Treatment is for life"
pernicious-anaemia-society....
Some on forum pass these to GPs.
3) May be possible for PAS members to arrange for their GPs to speak to Martyn Hooper, need to discuss this with PAS first though.
Thank you everyone for your replies. I have printed every resource you have given here and I am going in to my next appointment ready to fight for my health!
Good luck,
I'd suggest you consider following up your appointment with a polite brief letter outlining concerns. Letter could contain list of all symptoms (especially all neuro symptoms), relevant test results, relevant personal/family history eg when diagnosed with PA, extracts from B12 documents eg treatment pattern from BNF for B12 deficiency with neuro symptoms.
According to letter in title post, I assume GP has reduced your b12 jabs to 2 a year due to high levels in recent B12 test.
Suggest you consider putting extract from BSH guidelines that indicates retesting of B12 levels after treatment has started is unnecessary, in letter.
There is a useful summary of b12 documents in 5th pinned post which addresses issue of retesting B12 levels after treatment has started.
I reckon some of the print-outs I gave one set of GPs were filed in the bin...
Letters are supposed to be filed with medical notes so less likely to be ignored.
Hopefully your GP will listen and immediately reinstate your jabs to recommended level. If your symptoms have deteriorated, GP might be persuaded to give a second set of loading doses.
In some cases, PAS can intervene by writing letters on behalf of members so worth talking to PAS.
CAB NHS Complaints
citizensadvice.org.uk/healt...
Right, I will write a letter as well, thank you for the suggestion. I've just become a member of PAS, I might ask for their help if the GP doesn't back down..
As you are now a PAS member, might be worth ringing them and leaving a message about your situation. Someone should get back to you within a few days.
If you speak to them before your next appointment or before you send a letter, they can hopefully suggest things to discuss with GP and useful info to pass to GP.
Might be worth mentioning risk of SACD, sub acute combined degeneration of the spinal cord, if under treated in letter to GP .
It might help to concentrate their mind about why restricting your injections to 2 a year when you have neuro symptoms is not a good idea.
Most GPs have a BNF book on their shelf/desk.
Info on treatment pattern for B12 deficiency with neuro symptoms is in Chapter 9 Section 1.2
BNF info is also online, maybe GP can look it up on their screen at next appointment.
Are you keeping a symptoms diary?
People on forum use them to track changes in symptoms over time.
Blog post about how PAS supports members whose injections have been stopped
I didn't think the B12 blood test was even used as a yardstick to judge the B12 status of PA patients anymore, I have monthly injections and would be horrified if a GP suggested reducing these to just two a year, I know I would get ill, as I did on three monthly injections. Good luck Gumball77 I hope this doesn't happen to you, it seems to be driven by a lack of undrstanding of PA not science.
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