Good Morning can I ask how I can try explain to my GP that having blood tests for b12 is pointless and not necessary as I have PA diagnosed 2015 been having my b12 every 8 weeks she won't let me have any injections till I have a blood test Luckily I do source my own as well but what if I didn't or able too I've not been able to book any injections from surgery since Sept I've had to do my own how do I get through to her injections are for life i don't need testing
Dr stopped my b12 injections - Pernicious Anaemi...
Dr stopped my b12 injections
Read more about...
35 Replies
•
Point 2 of treatment pitfalls here : b12-institute.nl/en/diagnos...
B12 Institute is one of the most respected B12 expertise and treatment centers in the world, but perhaps your doctor knows something they don't (sorry... poor joke)
• in reply toTechnoid
Wish I could send this to my GP I said to her in an email to look up BNF guidelines for P A 7 years I've had them and she decides she wants me to do blood tests the every 8 weeks isn't enough as it is it was stopped once before with the other GP but after talking to him he started them up straight away can't get appointment to talk to her so have to go thro reception staff 🙄 hard work I can't always rely on getting sourcing my own
Since the above excellent article is from the Netherlands, I would stick to quoting from the medical guidance currently in use by GPs in the UK -
The British National Formulary (BNF) which is supposedly the "Doctor's Bible"
The British Committee for Standards in Haematology (BCSH) who quote from the BNF in their guidelines regarding treatment
The National Institute for health and Care Excellence (NICE) - this one has a revision due out next year (one that, among others, Martyn Hooper from the Pernicious Anaemia Society has been involved in )
The BNF advises patients presenting with neurological symptoms should receive an injection every other day (EOD) until there is no further improvement and injections every two months thereafter. NICE advise the same.
There is discussion about a review of the EOD treatment after three weeks - but I would imagine that this should be used to check that improvements are actually occurring, and NOT that they would expect that years of nerve damage will have completely repaired at this juncture ! (This is mentioned in the BCSH guidelines as a recommendation from the GWC- but not found in NICE guidelines.)
No further testing for cobalamin levels is required (Guidelines for the diagnosis and treatment of cobalamin and folate disorders: v. Devalia et al on behalf of the BCSH pub. British Journal of Haematology Aug 2014)
They end with this: There are arguments against the use of oral cobalamin in initiation of cobalamin therapy in severely deficient individuals who have poor absorption especially due to PA.
Finally a warning: Care must be taken if low dose supplements are prescribed, as such an approach risks the suboptimal treatment of latent and emerging PA with possible inadequate treatment of neurological features.
Sleepybunny and Gambit have already kindly provided links to all three of these guidelines and more above. They all seem to be in agreement regarding effective treatment - and your GP would be unwise to ignore that.
• in reply toCherylclaire
Yes I will do Thank You @
Fantastic article
Hi,
Some links that might be useful
Are you a PAS member?
PAS membership is separate to membership of this forum.
PAS (Pernicious Anaemia Society) can offer support and pass on useful information.
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
PAS website has lots of useful leaflets/articles and a page for health professionals that you could point your GP to.
pernicious-anaemia-society....
pernicious-anaemia-society....
Two PAS leaflets that I think could be useful are
"Treatment changed - What can you do?"
"Treatment is for Life"
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Link has letter templates that cover a variety of situations linked to B12 deficiency.
NHS Complaints
patients-association.org.uk...
Care Opinion website
People can leave reviews of their health experiences and sometimes GP surgeries/hospitals etc respond. Reviews can be anonymous.
MP
Have you thought about contacting your local MP or your devolved representative?
I hope they would be interested in talking to someone whose necessary treatment was being withheld.
Their website should have an online contact form/tel no/list of advice surgeries.
Going to the Press/other media
Likely to permanently change GP/patient relationship but can be effective.
Newspaper article about patient struggling to get B12 treatment in Scotland
eveningtelegraph.co.uk/fp/i...
And a positive follow up story
eveningtelegraph.co.uk/fp/b...
I suspect your GP either
1) has some wrong ideas about B12 deficiency
2) or has been asked to review patients on B12 injections by practice management or by ICB (Integrated Care board) or Health Board
or possibly both apply
Misconceptions (wrong ideas) about B12 deficiency
B12 article from Mayo Clinic in US
The Many Faces of Cobalamin (Vitamin B12) Deficiency
ncbi.nlm.nih.gov/pmc/articl...
Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.
Misconceptions about a B12 deficiency
(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)
stichtingb12tekort.nl/engli...
UK blog post that mentions misconceptions about B12 deficiency
b12deficiency.info/a-b12-se...
Diagnosis and Treatment Pitfalls
(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)
b12-institute.nl/en/diagnos...
"she won't let me have any injections till I have a blood test"
It would be really helpful if you could get the GP to explain in more detail why she thinks you need a blood test and why she thinks your injections should be stopped.
UK Blog post about help if injections stopped
b12deficiency.info/are-your...
UK B12 documents
Apologies if you've already got these but I suggest reading them carefully and looking for quotes to use in a letter to GP/practice manager.
NHS article about B12 deficiency and folate deficiency (simply written)
nhs.uk/conditions/vitamin-b...
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
Summary of BSH Cobalamin and Folate Guidelines
pernicious-anaemia-society....
BNF Hydroxocobalamin
bnf.nice.org.uk/drug/hydrox...
NICE CKS B12 deficiency and folate deficiency
cks.nice.org.uk/topics/anae...
There are currently new NICE guidelines in development for Pernicious Anaemia and B12 deficiency. These should be published in 2023.
nice.org.uk/guidance/indeve...
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment.
Local B12 deficiency guidelines
Have you got access to or a copy of the local B12 deficiency guidelines for your ICB or Health Board?
If you can't find them online, I suggest submitting an FOI (Freedom of Information) request to ICB or Health Board website asking them what B12 deficiency guidelines are being used locally and ask for a link to or copy of the guidelines.
Read blog post below if you want to know why I suggest finding out what's in local guidelines.
b12deficiency.info/gloucest...
I think it's important to protect your privacy but if you are happy for people to know which UK country you are in, I can probably post links that are relevant to Wales/Scotland/NI.
thank you Sleepybunny for always taking the time to look after us especially when you are unwell yourself x
• in reply toSleepybunny
Thank You so much!
Hi again,
Apologies for the deluge of information but I get so riled up when yet another person posts on the forum to say their injections have been stopped.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Some of the info will be specific to UK.
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
I am not medically trained.
This is a link to a thread I started on Patient Safety.
Should be lots of useful links in the thread.
healthunlocked.com/pasoc/po...
I think leaving someone without necessary treatment is a patient safety matter.
If GP surgery does not reinstate your B12 injections, it may be worth discussing SACD, sub acute combined degeneration of the spinal cord in letters to/conversations with GP.
I'm not saying you have SACD, I'm not a health professional. I am saying that your doctors should be aware that SACD is a potential consequence of B12 deficiency if treatment is delayed or inadequate.
Mentioning SACD to them may make them sit up and take more notice of you.
PAS article about SACD, sub acute combined degeneration of the spinal cord
pernicious-anaemia-society....
Petition
Thought you might be interested in this petition to get injectable B12 available over the counter in UK.
change.org/p/dr-june-raine-...
Tracey Witty of B12 Deficiency Info has campaigned on this issue for 8 years.
• in reply toSleepybunny
Thank You for all your information I have now rang my local ccg I think it's called something else now the lady said if my Dr does not reply to my emails or I can't get to speak to her she will email them as to why she hasn't replied and if its the case and I have a certain health condition to treat appropriately so I'll start with that
Sleepybunny• in reply to
Hi,
CCGs were replaced by ICBs (Integrated Care Boards) in July 2022.
ICBs in England
nhs.uk/nhs-services/find-yo...
You might want to find proof of your PA diagnosis in 2015.
There have been forum members with PA who challenged a decision to stop B12 injections and were told there was no record of their PA diagnosis.
If you can't find proof in your online records, may be worth requesting access to your written records. If you've had hospital appointments/admissions in past then may be worth accessing hospital records.
Retention of UK medical records
bma.org.uk/advice-and-suppo...
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 the future.
I really think it's worth trying to find your local B12 deficiency guidelines as your GP is likely to refer to these when treating you.
Threads from Health Unlocked can appear on NHS website.
If you want to change your thread to a more private setting so only visitors to this forum can read it
1) Go to original post, click More then click Edit.
2) Scroll down post to Share, click Community only then click Post.
Some forum members turn to treating themselves if NHS treatment is not enough for them. I see this as a last resort.
I hope you will let the forum know how things turn out.
"how I can try explain to my GP that having blood tests for b12 is pointless"
NICE CKS B12 deficiency and folate deficiency includes the statement
"Measuring cobalamin levels is unhelpful as levels increase with treatment regardless of how effective it is, and retesting is not usually required. "
cks.nice.org.uk/topics/anae...
PAS article "Testing B12 during treatment"
pernicious-anaemia-society....
Has some useful quotes.
Article from Stitchting B12 Tekort , a Dutch B12 website
(units, ref ranges, treatment patterns may vary from UK)
Testing B12 during Treatment
They need to save money and don't understand about B12
I worked for a company that sold hydroxcocalabin.It was less than £6.00.Hardly expensive.They pay for the nurse to give the injection, that's what they are cutting back on?
• in reply toLindylou123
Quite happy to do myself they supply the b12 but no can't do that not allowed to I have sourced my own but it shouldn't have to be like this and can't rely on always sourcing my own b12 I have told her please look at the guidelines for PA treatment but no discussion no reply no nothing
Yes the cost of the nurse to do it is around £50
No . I don't think so.A band 4 or 5 woujd give it. .
Yes self injection should be encouraged.
Needles still hard to prescribe though.
I get b12 prescribed but buy my own needles !
Gambit62Administrator
Suggest asking them to look at the BCSH guidelines which clearly state that injections are for life
onlinelibrary.wiley.com/doi...
if this is the result of doing a serum B12 test and finding your levels were high then this article is a useful illustration of why testing post injections is so useless
casereports.bmj.com/content...
• in reply toGambit62
Good Morning, I do have the very first blood test results from 2015 after I had the blood tests confirming high instrinct factor and also other letters at the time I was complaining of numbness n tingling in my feet but I only got the loading doses every other day for two weeks then 3 monthly I kept on complaining as my feet were getting worse 2017 I'm sent to see a nuerolgist who said no nerve damage bit did no proper tests roll on 2021 finally diagnosed by doing the right tests but now it's in my legs damage is done but they can't find a reason the reason was back in 2015 and only having loading doses I was ignored at the time at the same time double vision for 2 years all came about together Hashimoto's I already had vitiligo my double vision was so bad I had to go to moorfields in the end in 2018 there's only 2 Gp's at my surgery now one does 2 days a week the other does 3 days and the male Dr isn't very good isn't nice either the lady one is better and knows me but it seems now so much has changed since covid and they still use the same rules same ansaphone the country is taking measures etc etc Impossible to get an appointment or a reply to my emails or a phone call back to discuss it I know it will be a blood test then it will show high b12 her excuse will be you have enough b12 it's why she is doing it and she knows I have these 3 auto immune conditions I have stated in my everything in my emails to her but no reply I can source my own but it shouldn't be like this
show/send here] the second article. It shows that it is possible that high serum B12 is because the B12 is bound to a protein that stops it being bio-accessible.
Sleepybunny• in reply to
Glad that you've got proof of a positive IFA test.
"I know it will be a blood test then it will show high b12 her excuse will be you have enough b12"
Maybe you could show her this article
Treatment with high dose vitamin B12 been shown to be safe for more than 50 years
Sorry you're going through this.This almost happened to me recently, but when I attended the appointment they made to discuss results, armed and ready for a battle, I saw a different GP to the one who had requested bloods.
He agreed with everything I said, and changed my 3 monthly to 2 monthly injections.
Is there another GP you can see to discuss?
You'll always get some GP's who are educated about B12, and some who aren't that will try stop your injections when B12 levels obviously comes back high after testing.
Good luck.
• in reply toRitchie1268
Hi There you were very Lucky I have no chance of seeing another Gp the male one isn't nice and not very good and does 3 days a week the lady Dr only does 2 days and she knows me well enough to not be doing this they are still in covid measure days
Ritchie1268• in reply to
Sorry to hear that.Is changing surgery an option for you?
Failing that, if you're a member of the PAS - Pernicious Anemia Society, contact them and they can advise, they have been known to contact GP's to get injections reinstated after many have been in the same position as you.
good morning. So sorry to hear of your plight. So many of us on this forum myself included come across this all the time.
It’s hard enough getting on with our lives with B12 deficiency without doctors with so little knowledge trying to stop our lifeline injections. I play Russian roulette every time I go to the surgery to avoid a nurse who wants blood tests and to reduce my injections from 4 weeks to 12. Even though I’ve had PA for over 40 years.
Fortunately we can self inject and have so many caring, knowledgeable people on this forum.
Being a member of the PA society has been invaluable to me too.
My advice would be to try to see a different doctor at the practice if you can who will hopefully be more understanding. I wish you well.
Sorry you are going through this. I am in the same boat but no way of getting off as I'm in France and doctors are god. I have been without my injections now for over a year now after the doc made me have a blood test which came back through the roof. She actually said high levels of B12 are toxic???? My only hope now is when I have another blood test my levels are low again so she puts me back on them. I've been asking for another test but keep being told that it's too soon. I haven't been feeling great and been put on anti anxiety tablets and last time anti dep tablets which I didn't take for long because they made me feel worse. I have showed her the letter I received from the hospital in England years ago after I was diagnosed saying I would need injections for life but she just shrugged and said my levels weren't that low then. I'll ask again for another test when I go back but it's like banging your head against a brick wall and I think she just thinks I'm a pita now. It really gets you down and even thinking of going to see her now make my anxiety levels go through the roof as I just can't stand the fight.
• in reply toGill567
How awful for you to have to be made to feel worse it makes me so angry and to keep having to fight is exhausting my levels in 2015 were very low I'm stuck with nerve damage now ill persevere as I want her to reply to me no excuses not too
Just to show you are not alone Gsd2011,
Have a look at this blog post from Martyn Hooper's blog about PA.
The Worst Explanation Ever for Withholding Treatment…..
martynhooper.com/2022/02/22...
There are some comments under the article.
You are not on your own I still think it's financial that's why I told my GP to forget it I would look after myself in future.Sadly I can remember when GPS were really good!
Get face to face appointment with MP. Take NICE Guideline re retesting B12 - highlighter pen the relevant bit. Also take any proof of PA you may have eg screenshots of blood tests or letters.
You shouldn't rely on sourcing from abroad which I think Doctors actually want us to do to save them money. Private supplies are first to dry up when shortages occur/pharmaceutical industry concentrating resources on vaccines etc/or politics get in the way.
Good luck!
I've had exactly the same thing now they say my levels are ok which of course they are going to be whilst having the injections I argued this but was told the injections were stopping so I now do my own which I'm very angry about but they just don't listen I hope you get sorted
Hi,
No doubt Sleepybunny has listed these. Just highlighting them because they are concise and come with footnotes from medical journals..
stichtingb12tekort.nl/engli...
stichtingb12tekort.nl/engli...
stichtingb12tekort.nl/engli...
All the best to you.
Thank you!
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