I been having B12 injections since 2013 every 85 days and my Doctor has told me she would not give them to me until she done blood test. My B12 came back 1028 and she has said I am fine and have no deficiency. I feel terrible tired breathing problems and all usual problems when we dont have our injection. I was diagnosed 2013 with prenicious anemia. HOW does she have the right to do this and now just leave me. What can I do?? Surely after 7 years of injection my level will show pretty much ok isn't that the whole point of the injections?
My Doctor has stopped my b12 injectio... - Pernicious Anaemi...
My Doctor has stopped my b12 injection after 7 years!!
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Debmac123
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Debmac , that is nothing less than shocking . You have a diagnosis of Pernicious Anaemia , and should be receiving injections FOR LIFE ! . You will get help here to get them reinstated . Your doctor has shown a high degree of ignorance of P.A. She should know that once injections for P.A. have commenced , testing blood for B12 is an unnecessary waste of time . Your levels will be high, and must always be high if you have P.A. You must write a letter to the surgery manager, saying a mistake has been made , and you must have your injections reinstated . You must say that your P.A. symptoms are returning . You can give quotes from NHS guide lines ( sorry I haven’t got them , but other members will quote them) . You must have your injection ASAP . The letter is important, as it will be put on file .Keep a copy . As a member , the P.A.S. will intervene on your behalf, if you do not succeed .
We have had many cases like yours . It seems that doctors are using this difficult time of the pandemic to try this on. It is truly more than outrageous . I will also send you precise instructions for how to self inject . Many members have to do this when they can’t get injections often enough . I do it myself as I need weekly injections to keep symptoms at bay .. Don't despair , you are with friends here . You will get your injections reinstated , and feel well again . Your doctor should know what PERNICIOUS means . Best wishes .
Dear Wedgwood please don't despair they are WRONG to do this to you. I changed doctors some months ago and the same happened to me after 10 years of monthly injections. As I have chronic stomach problems I see a consultant a few times a year. I contacted the consultant and he was shocked thst they even tested my B12 it took 3 letters from him to the GP before it was reinstated. Good luck and follow advice from this forum xxx
Your very kind reply should be addressed to Debmac123 . I have to look after myself , and I self-inject weekly to keep well . Thank you for your kindness - we love people like you on this forum ! 👍😀
Write to your GP Practice Manager and outline the negative effects the withdrawal of B12 injections have on somebody with PA. Also remind them that the level in the blood has no bearing on your absorption rate and the level within your cells. Finally point out that PA sufferers are advised to try and maintain a 2000+ level to saturate their system.
Hi, do you have a reference for the 2000+ guideline? I’ve not heard this before. I fear I may be about to face the same battle, having been made to just have a blood test, which will no doubt show levels within or above normal! Thanks 🦊
I would like to see a reference on this as well.
I can't remember where I saw it, sorry. It was either the PAS website or one of the forums. At my last blood test my B12 level was 1609 and I still got my monthly B12 injection without any problems.
Thanks, oh to have your GP! 🦊
Thank you for advice
Your doctor is incompetent and should be reported if you di not get your I jections back in the first instance
Gambit62Administrator
There was an awful lot of contradictory and confusing advice that came out in relation to B12 injections during the last few months.
I suggest, as others have that you write to the GP with a copy to the practice administrator highlighting the following
a) if you have a diagnosis of PA then injections are for life.
b) the serum B12 is extremely difficult to interpret at the best of times and almost impossible post loading shots. Testing is not recommended as a basis for deciding on on-going treatment in the current standards produced by the BCSH (British Council for Standards in Haematology). These were altered in 2014 but many local guidelines still don't seem to have caught up with this.
onlinelibrary.wiley.com/doi...
and I would also suggest pointing them to this part of the PAS website which has links to the latest advice on treating PA during COVID-19 produced by NICE and BCSH
stichtingb12tekort.nl/weten...
Scroll down to #4 and #5. I don't find this paper overly aggressive in nature for any doctor to read.
Hi,
So sorry to read about what you are going through.
Just some quick thoughts
Have you thought about joining PAS (Pernicious Anaemia Society) who can offer support and info.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
CAB NHS Complaints
citizensadvice.org.uk/healt...
MPs and devolved representatives in Wales, Scotland and NI may be worth speaking to if struggling to get recommended treatment.
There is a leaflet "Treatment is for Life" in library section of PAS website. You would need to be a PAS member to access it.
pernicious-anaemia-society....
As some of the other replies have suggested, may be worth putting your concerns into a letter to GP and copied to practice manager.
In UK, my understanding is that letters to GP are supposed to be filed with medical notes so hopefully less likely to be ignored.
Useful to have a paper trail in case there is need for a formal complaint in future.
Potential Consequences
May be worth drawing GPs attention in any letter/conversation to the risk of permanent neurological damage such as SACD, sub acute combined degeneration of the spinal cord if untreated or under treated.
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....
B12 article from Mayo Clinic (US)
ncbi.nlm.nih.gov/pmc/articl...
Suggests successful treatment should not be stopped
I wrote a very detailed reply on another forum thread with links to B12 deficiency symptoms lists, causes of b12 deficiency, info about PA tests, B12 books, B12 websites, UK B12 documents and other B12 info which you might find helpful.
healthunlocked.com/pasoc/po...
If you're in UK, be aware that the pandemic is impacting patients' B12 treatment.
Many UK forum members have reported injections being stopped/delayed
/frequency reduced or swapped for oral tablets.
I left a detailed reply about impact of pandemic on B12 treatment in UK in next link.
healthunlocked.com/pasoc/po.....
I am not medically trained.
Thank you so much for all the information and advice it's very kind of you.
Both my husband and son had this problem and they are under different surgeries. They both asked to speak to the doctor and asked for a printout of blood results, then said they would need tests to find out what is wrong with them as they have been told it's not PA, in both cases there B12 injection has been reinstated.
She is 100% wrong. That is very cruel and ignorant. It’s hard to fight for your rights when you are feeling so ill. Follow the advice of the experienced people on this forum. Good luck. You are right your dr is ignorant - of course your b12 will be high if you are having injections - that’s the point of them.
Best wishes
I'm glad you agree it makes me feel I am not over reacting thank you.
Hi again,
"and she has said I am fine and have no deficiency. I feel terrible tired breathing problems and all usual problems when we dont have our injection"
Does your GP have a list of all your symptoms?
Worth including a list of symptoms in any letter especially every neurological symptom.
Symptoms of B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/...
Peripheral neuropathy
nhs.uk/conditions/periphera...
Doctors often look for symptoms of peripheral neuropathy (PN) in relation to B12 deficiency so worth mentioning any symptoms suggestive of PN.
Symptoms Diary
Are you keeping a daily symptoms diary that tracks changes in symptoms over time and if and when any treatment is received? Symptoms diary can provide evidence of deterioration or improvement in symptoms that GP or other specialists may be interested in.
If you have increasing neurological symptoms, have you requested a referral to a neurologist and haematologist?
I used to request referrals in a brief, polite letter to GP along with evidence that backed up request eg symptoms, test results, extracts from UK B12 documents/articles, personal and family medical history, PAS articles etc.
Sadly like some GPs, some specialists are lacking in their understanding of B12 deficiency but hopefully you'll be lucky and get one who has good understanding.
Could be worth asking GP to contact a local haematologist by letter for advice...see NICE CKS link below.
NICE CKS
cks.nice.org.uk/anaemia-b12...
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....
Proof of Diagnosis
Might be worth getting access to or copies of medical records to see if there is proof of PA diagnosis but be warned that some people on forum have tried to get proof only to be told that there is no record of their PA diagnosis in records.
Access to Blood test results (England)
nhs.uk/using-the-nhs/about-...
Thank you for your advice I will certainly do this.
Hi,
I would follow Sleepybunnys advice, printout the information and give the copy to your doctor. This will help you and the others at your surgery to get the treatment that you should be getting.
However the easiest way is to just ignore your doctor and self inject (if you are up to it). It is easy, painless and cheap. All supplies you can get from Germany within the week!
There is plenty of advice on this forum. That may help you, but do inform your doctor and tell him why you are going to do it, that may help others.
This is very worrying. I had a long telephone conversation with my GP, which I recorded, and found out that there will be a practice-wide audit at our surgery and she said I will probably go back on 3-monthly injections. I am on monthly at the moment. Audit being carried out by the very doctor who suggested I go on 6-weekly (!) and at the time she made me an appointment with my own doctor who actually let me trial monthly, 5 years ago, and I have been on that ever since. My GP said, 'it is a new NICE guideline, at least I think it is NICE'. I wrote to the Pernicious Anaemia Society as I am a member and they said :
There is no new guideline coming from NICE as due to Covid the new guideline on Pernicious Anaemia has been postponed. There will be a new BSH guideline coming but we do not know when, but it will not be shortly. Other than that, some CCG's have taken it upon themselves to create new guidelines. So no, it is not individual surgeries, but it is also not NICE/BSH. It is coming from other organisations in between, CCG's and regional governments. You could ask your GP which guideline he is referring to as it is not NICE/BSH? We are working with our experts to address the situation as it is very confusing that there are multiple guidelines and they are conflicting. We are of the opinion NICE and the BSH should be followed but there is a large lobby going on from somewhere to put as many patients as possible on tablets and they are taken the current crisis as an opportunity to push this through. It is all about the costs, and very worrying. However, if you have a diagnosis of PA, injections should not be stopped. Some CCG's are retesting B12 (which we know is useless) and antibodies intrinsic factor. If these have ever been tested and found positive there is a clear diagnosis and retesting is not needed.
I have a PA diagnosis. The GP contradicted herself as she said she doesn't think my neuropathy is due to B12 deficiency, and yet read out a letter from the original neurologist saying the neuropathy is most likely B12 related. I have written a letter but not posted to the GP yet as I don't know whether to pre-empt the letter that will be coming or wait till it comes. We must all fight as much as we can, even if we can inject ourselves (like myself) as this will have disastrous consequences for people.
I also wrote to NICE as I wanted to know if the guideline for every other day treatment until no further improvement was active 12 years ago when I was diagnosed as I did not have this treatment even though I had neuropathy. They told me it was as they checked with Clarity Informatics, so I was treated wrongly in the first place.
I do hope you find the help you need on here.
All these posts of fellow sufferers is great support to hear that I am not alone thankyou.
It is so sad that we are sick and have to use what precious energy we have to advocate for ourselves with our doctors. Here is the US, being chronically ill, I dread going to the doctor. I do not see doctors that I trust to give me the best care. I have to “handle them” and their giant egos to get what I know I need. Having been ill for decades, I now find myself accepting a very poor quality of life because I don’t want to deal with the medical system.
You CAN, and you WILL, win this one. You just have to take a deep breath and go the distance. This doctor doesn’t have a leg to stand on! This is a great place for you to get the help and courage you need. It’s just too bad you have to do anything at all but keep getting your shots.
My Niece developed a severe petechiae rash so had blood tests. Came back very low B12 and that she needed injections for life but totally refused to provide them and told her to sort her own out. She has found somewhere local that provide and administer the injection for £10. I was diagnosed with lifelong B12 deficiency 4 years ago and was having 3 monthly injections, then went to 6 months, but have not been offered any for 12 months. I guess I am going to be told to provide my own too.
The CKS summary guidance clearly says that once B12 treatment is given levels will rise in the blood irrespective of efficacy and NO further testing of B12 is required going forward.
Injections are for life. Write back and complain. It is disgusting that PA patients are treated like this
Good luck.
Have a look at these articles from Dutch B12 website.
Reference ranges and units of measurement may vary from those used in UK.
"Testing B12 during treatment"
stichtingb12tekort.nl/weten...
"Treatment with high dose vitamin B12 been shown to be safe for more than 50 years"
stichtingb12tekort.nl/weten...
"Misconceptions about a B12 deficiency"
stichtingb12tekort.nl/weten...
"Serum B12"
stichtingb12tekort.nl/weten...
Should be some useful quotes you can use in any letter in BSH Cobalamin and Folate Guidelines (link in one of my reply up page).
Debmac123 just wondering if you managed to get your injections restarted? And if anyone has had any look going to a private GP? My quarterly injections were stopped c6months having been on injections for c5years and as each month of battling to get them reinstated goes by I feel worse in myself and my energy to fight for treatment is deminishing 😟. My GP too tested my levels and said they were fine and no long deficient. I pointed out that I had just had my injection so surely you would expect them to be high (which he didn’t really seem to acknowledge) but he did concede to testing me again mid way between injections (so after 6 weeks) and my levels were still within range (but not as high as first test). Surely from both a logical standpoint this is what you would expect? He said he is not convinced I have B12 deficiency (I have changed GP since initial diagnosis) and have referred me to General Medicine at the hospital but due to Covid I can’t get an appointment in the foreseeable!
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