A Woman I know was diagnosed with PA 8 years ago. She was getting B12 injections every 8 weeks til last year when she was changed to the highest dose of oral B12 due to Covid. She’s not been feeling great and has lots of symptoms so called the Dr to ask for her injections to be reinstated. He’s come back and said she’s plenty of B12 stored in her body so not needed. Today he’s now told her she doesn’t have PA, just low B12!
Any advice as to what to do next? I’m new to this but have helped her with the knowledge I know and seen on here.
I’ve also given her some of my B12 so she can at least do some SI to get some B12 into her body.
We are both at the same medical practice but different Drs. I was diagnosed in October and have already given up on my GP and been doing EOD injections since middle of December.
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Bamboo71
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Hi, so sorry to hear your friend is suffering. I’m sure more, knowledgable members will advise. But I too have come up against the same frustrations with GP’s, I know how upsetting it is.
I found this website a great source of information and advice. Hope it helps.
As your friend has a diagnosis of Pernicious Anaemia, she must receive injections FOR LIFE ! Our Chairman Martyn Hooper objected to the NHS instruction to substitute b12 injections with tablets , and the instruction was successfully withdrawn for P.A. patients . They can now get their injections again . B12 stores in the liver are not active B12 stores , but need the addition of The Intrinsic Factor when the inactive B12 is released into the digestive system . Pernicious Anaemia patients do not have the Intrinsic Factor, so the B12 passes through their bodies without being absorbed . Her doctor cannot say she has ONLY B12 deficiency if she has a diagnosis of P.A. SHE CANNOT ABSORB ORAL B12 . She must write letters to her GP , the practise manager , her M.P ,and the local press, asking for her injections to be reinstated , due to the latest ruling , and the fact that her symptoms are returning . If that doesnt work , she could ask the PAS for help if she is a member .
Its important that your friend gets her B12 injections reinstated ASAP .Dangerous symptoms will return , and become irreversible if the situation continues for too long .
Goodness, the ignorance & arrogance of some doctors is astounding when they could at least look at what NICE guidance say (as arbitrary it is on many areas e.g treatment frequency) says:
"Maintenance treatment with hydroxocobalamin 1 mg intramuscularly every 3 months for life — where B12 deficiency is not thought to be diet related.
Maintenance treatment with oral cyanocobalamin tablets or a twice-yearly hydroxocobalamin 1 mg injection — where vitamin B12 deficiency is thought to be diet related."
How should my management vary when considering the possibility of COVID-19?
Non-dietary vitamin B12 deficiency
Discuss the need for intramuscular (IM) hydroxocobalamin with each person.
Ask people who require IM hydroxocobalamin COVID-19 screening questions before they attend GP surgeries.
Explore alternatives to attending GP surgeries for administration, such as local pharmacies or home administration by district nurses.
Offer oral cyancobalamin 1 mg per day as an alternative until regular IM hydroxocobalamin can be resumed — aim for the shortest possible break from regular injections.
Advise people to monitor their symptoms and contact their GP if they begin to experience neurological or neuropsychiatric symptoms, such as pins and needles, numbness, problems with memory or concentration, or irritability.
People who are already self-administering IM hydroxocobalamin should continue to do so.
Switching to self-administration during the COVID-19 pandemic is not recommended as instruction is likely to be difficult.
Unless there is an obvious diet related caused e.g your friend is a vegan or vegetarian - oral B12 is not an appropriate treatment as the problem is clearly due to issue with either absorbing it, properly utilising it or it gets converted to a form the body can't use e.g nitrous oxide exposure.
"He’s come back and said she’s plenty of B12 stored in her body so not needed. Today he’s now told her she doesn’t have PA, just low B12!"
I can't remember the source (so someone else correct me if I am wrong on this) Intrinsic Factor is need to utilse the bodies own store of B12 from the liver.
Then the highest dose of oral B12 the NHS would prescribe is 1mg cyancobalamin a day & someone with pernicious anaemia would at best absorb about 1% of that via passive diffusion although it would be interesting to know what effect 100 mg oral B12 would have and I think there is a obvious conflict of interest for GPs to free up nurses than to ask questions like this or properly get feedback from their patents bmj.com/content/365/bmj.l18... and since the schilling test is no longer available the exact cause of the low b12 which is not technically the same thing as pernicious anaemia not caused by diet is probably unknown so 1mg cyancobalamin will probably help someone who can produce some Intrinsic Factor that they can absorb enough from a oral supplement but just not from food but to presume it will help everyone is absurd.
"Any advice as to what to do next? I’m new to this but have helped her with the knowledge I know and seen on here."
I think both of you should contact you GP to ask why they have ignored the nice guideline & join the pernicious anaemia society and calling the helpline as I might be worth both writing a letter to the practice manager.
Are either you or your friend a vegan or vegetarian?
How were both of you diagnosed with PA was it due to test or symptoms? Was a Intrinsic Factor Antibodies test ever done?
My friend thinks it was when they were testing her for crohns that they told her she’d PA, that was about 8 years ago and she’s had B12 injections since until they stopped last June due to covid and put on orals. Now she’s requesting her injections she suddenly doesn’t have PA now just low B12 so they say the orals are fine
Perhaps a fight can be avoided- by asking questions, putting the onus back on the doctor to explain change of diagnosis (and historically effective treatment).Worth a try, at least.
Has she got a copy of the original diagnosis of PA ?
If I had that, I would frame it !
Ask the GP by letter:
What prompted GP to change original diagnosis of PA ?
If not PA and not dietary either, what caused the B12 deficiency (what is the "new" diagnosis) ?
Since NICE has made the distinction between dietary and non-dietary B12 deficiency in terms of treatment, surely the GP would have to be certain that the cause was dietary before altering long-term treatment permanently ?
See also ncbi.nlm.nih.gov/pmc/articl....:
"If you miss having your injection, the level of vitamin B12 in your body will go down further. This may make your health problems worse."
(note: "will" go down further, not "might" - so no need for B12 serum test to confirm worsening health problems!)
SallyRees has provided a link that will take you to Tracey Witty's website - she has advice on writing to your GP and other information that could help. Being a member of the Pernicious Anaemia Society could also provide support and useful information.
Thank you, I’ve asked her to do an eConsult to get the date she was diagnosed with PA from her notes. She’s sure she wrote it in her diary so will try to find exact date as was 8 years ago. I’ll pass that information on to her. Will look into doing my own to try & get more frequent injections, I like many get 12 weeks but I’m SI EOD until no change in my symptoms.
Glad to see someone is following the correct medical advice given to doctors for those with neurological symptoms !
Wiley Online Library: British Journal of Haematology: Guidelines for the diagnosis and treatment of cobalamin and folate disorders: Aug 2014:
"treatment of cobalamin deficiency:
.....The BNF advises that patients presenting with neurological symptoms should receive 1000ug i.m. (intramuscularly) on alternate days until there is no further improvement"
NOTE: "cobalamin deficiency" - not specifically PA-diagnosed cobalamin deficiency- nerve damage being nerve damage either way.
My GP was one of the very few I have ever heard of who actually followed this treatment pathway inasmuch and for as long as she was able. This was because I was responding very poorly to the B12 injection every 3 months (which is what everyone else at the surgery was receiving) and she found that my methylmalonic acid (MMA) was still raised. You only find what you look for and you first have to be aware that it exists to look for it. Even then, access to MMA testing can prove difficult for a GP - she had to try three times to find a lab with this facility.
I was given six months of 2 injections a week: I finally felt an injection for the first time 10 months after my first loading injection ! I was visibly improving for a good while - until I again deteriorated, and GP sent me on to consultants. There was certainly opposition and reluctance from nurses giving a frequency that they'd never encountered. I'm sure it was also becoming difficult for my GP to justify continuing treatment at this frequency to her peers especially after I had deteriorated. My injections were reduced to 1 a month.
I started self injecting every other day when, 5 months later, Haematology told my GP that I should not get more than 1 injection every 2 months. I was going downhill and needed to get back to work on a phased return or else give up my job. I had no choice.
I made this decision over a year and a half after my first loading injection for B12 deficiency. It took over two years before I felt able to reduce frequency from every other day to every three days.
We are all different - although this fact often escapes the medical profession, it is evident to those who read posts on this forum. In order to determine precisely why that is, the Pernicious Anaemia Society are currently involved in research into the cause of the difference.
A recent slow recovery from covid, with symptoms very difficult to distinguish from those of B12 deficiency, has meant a temporary return to every other day injecting. It seems to be helping. Whether because at my worst I was unable to self inject at all or because lingering covid symptoms respond to B12, I don't know.
I feel very lucky and relieved.
Keep trying: it takes time. I hope you are both having folate, ferritin and vitamin D monitored, and have had thyroid thoroughly checked. These can also be low/erratic for a long time too. Good to keep a diary, list of symptoms, daily chart recording frequency of symptoms and response to B12 injections. Helps in appointments -especially if suffering from memory/ cognitive problems. You have been very supportive to your friend. Best wishes to you both.
I take folic acid and as my weight keeps creeping up I got my thyroid checked. My GP said it was normal but I posted it on the thyroid page and they said it wasn’t & further testing was required. I’m in the process of changing my GP as he’s a complete waste of time! Once I know I’ve been moved I’ll request more testing 🤞🏽
I think that the Thyroid Forum would say that NHS tests are generally just concentrated on TSH - sometimes TSH and FT4 - and usually stop there. So not in fact GP's fault - at least in this case.It is possible to get further tests : FT3, also anti-TPO and anti-TG which are the auto-immune tests. But not generally available on NHS. I did this once via Medichecks -as a home testing kit by post and online results. Think it was £60 which made it around £10 each test done. The Thyroid Forum can help with interpreting results.
Do you know if it was the GP who diagnosed the pernicious anaemia or was it a gastroenterologist? Was diet (vegan or vegetarianism) ever asked about?
Have either of you had an Intrinsic Factor Antibodies test done? Since a positive result almost certainly mean you have pernicious anaemia but a negative result doesn't rule out pernicious anaemia.
A GP diagnosed both of us. My friend had an intrinsic factor antibodies test which was negative. Neither of us are vegetarian/vegan. She said she was diagnosed 8 years ago when they were also doing tests for crohns. Her B12 was 149 then and was told by that GP she had PA. I was tested last October and my B12 was 148, from this I was told I had PA. I asked about further testing but my GP told me as my levels were so low I most definitely have PA.
I gave up with Gps....really sorry to here this.... it's a ruddy nightmare!
Until your friend feels a bit better perhaps right now would be a little bit to much to fight a battle with GPs and instead advise on SI until she feels better.
None. All blood tests for B12 are affected by supplementation. According to Specialists in this area, you would need to be off all B12 supplements for 3 to 6 months to give unaffected results . This is not recommended. The guidelines provided by the British Society of Haematologists take the pragmatic view that the key factor is that if symptoms are relieved treatment should continue .
Thank you, I didn’t think they was a test after supplementation but wanted to check. My friend is currently battling with her Dr after being diagnosed with PA 8 years ago, this Dr is saying she’s not got PA just a B12 deficiency 😡
There are some factors which might help tip the scales toward PA being the cause:Other autoimmune conditions, such as psoriasis, vitiligo and autoimmune-related thyroid conditions: Hashimoto's. Grave's disease.
A strong family history of autoimmune conditions including diagnosed PA.
With diagnosed PA, it is still the B12 deficiency which causes all the symptoms, so "just a B12 deficiency" is a nonsensical position to take- and is certainly not a diagnosis.
There is always a cause for B12 deficiency - but it's not always found.
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GP stopping my B12 injections. Replacing with oral B12
New here and desperate for advice on B12 deficiency
How will more frequent b12 help?
B12 patches
