I was diagnosed (by my GP) with PA about 2 months ago and so far I’m on the ‘standard’ NHS protocol having had my 6 loading injections of B12 and awaiting the next injection in 2-3 months (this period seems a bit hazy). To be honest, my GP appears to be ‘simply’ following the prescribed script so I’m wondering whether the treatment and management of PA should be under a medical specialisation, and if so, which one bearing in mind the myriad of symptoms? Should the lead be taken by Haematology as it’s an anaemia, or perhaps Neurology?
My GP has reached out to Haematology for advice and guidance but has had nothing back more than following the standard protocol, but as I was seeing a Neurology consultant before my PA was diagnosed they have in effect deferred to that specialisation.
I’d therefore be interested in hearing from others in the UK being treated under the NHS to see how their PA is being handled.
Like all things PA related, I suspect there is no simple or single answer!
Thanks in anticipation.
(One further question, once you’ve had the 6 loading injections should there be a further blood test to check B12 levels? There seems to be conflicting advice on this.)
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Pa234aw
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I’m in the UK too, low B12 and folate deficiency. My doctor prescribed a loading dose of four b12 jabs and to start folate 5mg tablets after day 2. I’ve got neurological symptoms but the Go was adamant I could only have another jab after 3 months.
A loading dose of B12 should consist of 6 injection's on every other day ! I also have the neurological symptoms so requested the injections to be given 2 monthly instead of three - worth a try asking. My Gp was adamant until I pointed out the guide lines. She wasn't happy but I didn't give a 💩 it was my life she was playing with.
I wonder why you were only given 4 injections as a loading dose ? Cut backs no doubt. 🤬
I had six loading shots of one every other day, then like most was given 3 monthly. Due to ongoing symptoms I asked the Dr for 2 monthly which after a battle she prescribed and been on 2 monthly injections for the last 3 years.
Your Dr got it wrong ! You said in your previous post you received a loading dose of 4 when it should have been 6.
A Dr who abides by the guide lines and gives injections every other day until the neurological symptoms improves is a very rare find.
I just had a thought maybe if we find such a clinician we can clone him and produce a few more - that way we might get these wretched symptoms actually treated. 🤔
The burning sensations in the feet and legs is enough to drive you nuts especially during the night. ☹
Nackapan, thanks for the comments and advice. Do the guidelines state what neurological conditions dictate the possibility of every other day injections? The possibility of more injections has never been raised by my GP.
My GP did request a 7th injection about 5.5 weeks after my last loading dose but the nurse practitioner was very reluctant to give it at anything less than 8 weeks. I did get that extra jab but only once the nurse got the OK from her supervisor. It goes to show that there is some reluctance within the NHS to go ‘off protocol’ but such protocols seems to vary by area from my investigations.
I am sorry that you are feeling a little overwhelmed and underwhelmed by the care you are receiving for your B12 deficiency. Sadly you are not the first and won’t be the last. To describe the treatment you may receive from the NHS as inadequate is an understatement.
It would be useful to post your bloods so folic acid , B12, vitamin D etc as you will receive more specific advice.
The NICE guidelines indicate that you should receive B12 injections every other day when neurological symptoms exist but few patients receive this.
Like many on this forum I saw a specialist privately and chose to self treat as I could not manage on the paltry 12 week offering from the NHS.
Keep asking questions as you begin and plan your health recovery journey. The forum will help you all it can as they have helped me and many others.
No further testing of B12 once 1 mg/ml Hydroxycobalamin is started . Do NOT have blood tested. If called for blood tests, ask which ones are you taking then state, Please write on form DO NOT TEST B12. Only then roll up your sleeve and offer arm which is implied CONSENT.
This is when you have opportunity to Educate. You are saying NO but doctor are misinformed because of poor training. It is your body after all.
You may need thyroid, vitamin D, Full Blood Count, folate at some point. If you have Functional B12 then Cherylclaire is best to advise. I am unsure what the protocol was for that.
The only problem is getting folate tested without B12.It's done at the same time which is great for the first blood test so you csn treat b1e if needed before folate.
That happened to me wanting folate tested. The same assay.
It is a message to the people in the laboratory. They have the bottles of blood. Then they extract them, spin them, put them on slides and look down the microscope. They will not run the test. It has nothing to do with the doctor. If you look at a hard copy of a blood result, it will have the name of the requesting doctor and the person who analysed it. 😉
Often, on the ward, I would saunter over to the laboratories or bleep them to say I needed urgent results. After I left working on the wards, I worked in a laboratory with Microbiologists and Biochemists. They were very funny.
There are 330 careers in the NHS. It really is knowing the system.
They retested my blood after the loading dose to see if my levels went up which is feasable. After that it is pointless testing because you are now on treatment and it is common sense your levels will be high.
PA is handled very badly with many Drs and consultants alike not understanding the condition. Some are refered to heamatologists but not all specialise in B12. My heamatologist hasn't a clue with regard B12deficency and only deals with antigoagulation ( thinning of the blood ). Other's are sent to neurologists, I scratch my head as to why wnenthe Gp refuses to treat our neurological symptoms with every other day injections until symptoms improve. The neurologist I saw refused to acknowledge my B12 symptoms and if honest he was an utter swine in his approach.
If not diet related the first port of call should be a gastrologist to find out the underlying cause.
First of all congratulations on having a GP that diagnosed PA. Very rare. My GP hadn't a clue - and still doesn't - so I had to help myself.
However, from what you say, he/she doesn’t have much idea on how to treat you. IMO treatment of B12D is in it's infancy. There is no 'one size fits all'. Most of us find injections every 3 months nowhere near enough.
Luckily this forum exists with masses of information and experience on B12D/PA. You will find most answers here.
Cheers charks. As for ‘diagnosed’ it was from a parietal cell auto antibodies (positive) and intrinsic factor antibodies (negative) blood test which, from what I’m reading, isn’t 100% accurate and open to interpretation. I’ve never been quite happy with that diagnosis, hence wanting to get specialist attention. Especially as my B12 levels went from off the bottom of the scale to just over the lower end of the scale (a bit confusing as the tests labs used different scales) before I had any B12 injections which suggests either errors in the tests or that my body was in fact absorbing B12 from my diet. It’s a long story but those 2 blood tests were 3 months apart and those months were the healthiest I’ve felt all year. I’ve felt worse since I had the six B12 loading injections. There is no question that I’ve been B12 deficient for whatever reason, but whether it’s PA related remains a question.
I think you got better treatment because you are male. Most of us females get dismissed as hysterical and get offered anti depressants. My partner is much more forceful with his GP which is why I take him to my GP appointments. And also because when I get anxious I get very tongue tied. Which I think is another B12D symptom as it never happened to me before.
Whether you have PA or B12D the symptoms and treatment is the same. As to specialist attention - most of us find it sadly lacking. Often the specialist knows less than the patient.
I am just as poorly treated by my GP and last time I looked I was definitely male. The problem is that none of the serum tests are reliable enough and it leaves the medics in a knowledge free limbo. These days they are supposed to be entirely science based when thats impossible - the best primary care doctors are highly intuitive and base their work on the symptoms. That gives them another problem as it appears there may well be several factors that result in B12 deficiency and we haven' worked that out yet. I am experienced and qualified in human physiology etc. and I suspect I get a hard time from my doc as his self defence mechanism from my knowledge despite my having no medical training. In the New Year I am going to change tack and lay off the science and concentrate on rebuilding my personal relationship with him. It appears we share an interest in cabinetmaking so thats a start.
A timely post as my frequency is now being challenged as they had lost the letter from my B12 consultant!! Despite my prescription quoting the exact wording from his letter !!
So my history / treatment was as follows :
Initially diagnosed with PA, positive IFAB, B12 level of 35, HB on the floor. Couldn’t walk up the stairs without SOB.
Loading dose of 6 jabs in a fortnight, followed by 3 monthly jabs, made a slight doffeeence but B12 still sub 200. Self prescribed another loading dose and added my one single injection between the 3 monthly regime so in effect every 6 weeks.
Many arguments with GP surgery, one particular HCA did not like the fact that I k ew more about PA than her, suggesting that self injecting was illegal and that my wife should be struck off by the NMC for permitting it in her house 😀😀
Changed surgery and went private for gastroenterologist and haematologist, had an iron infusion and also aforementioned covering letter from consultant to GP requesting folate and ferritin checks every 6 weeks, prescription of folic acid and more importantly B12 every other day “while symptoms persist”. Current symptoms are now only tingling arms and hands so I’m going to be moving to every 3 days after Christmas.
GPs currently prescribe hydroxobolamine every other day but have just been contacted by the pharmacist who requested a copy of the lost letter, this has been sent so will await updates and take it from there.
It is a battle but you can get the right treatment from your GP with enough persuasion although it is always a pen tick away from being changed!!
I was told that you should be on EOD injections for one month for every year that you were undiagnosed.
Thanks Jason. It’s a nightmare! You mention your ‘B12 consultant ’. Which medical speciality are they from please? It seems that the majority of GPs won’t prescribe more frequent B12 injections without some instruction from elsewhere, and from what you are saying even then it’s questioned, often by the person giving the injection. I had that a few days ago having finally managed to get my GP to OK an extra jab roughly midway between the standard 3 months cycle. The HCA was far from happy giving it and only did so reluctantly with agreement from their manager.
I had a consultation with Dr Klein at the Cambridge Iron Clinic, he’s a haematologist with an interest in B12 and iron deficiency.
It has been a nightmare, last HCA wouldn’t jab me because I was refusing B12 bloods.
Following our complaint she had to go away and do some reading 😀😀
I am off the 3 monthly ones as they know I’m SI at home and are happy for me to do so. The referral letter is definitely the key as if they have somebody else that has already made their decision they are usually quite happy to defer to their judgement imo, one less thing for them to have to do.
I would very much like to know who said EOD for a month for each year B12D undiagnosed. I believe I was deficient for the best part of fifty years. So that means EOD for 4 years. Sounds about right to me. So far I've done a year if I don't count the NHS protocol one year false start!
That was from my haematologist, sounds about right as I think I went about 6 or 7 years undiagnosed and feel pretty much almost there now after 5 and a bit months of EOD.
No side effects at all, in my simple reasoning it’s naturally occurring and I’m not absorbing that much anyway !
I know some people are on multiple jabs per day though so all good.
I’m pretty high functioning at the moment I think, sport 4 or 5 times a week , average 100k steps a week, something I couldn’t have imagined a few years ago.
This, they had lost the letter from my B12 consultant. Please find out the name of the Data Protection Officer in your Integrated Care Board, NHS Trust or Health Board and email them to tell them your data has been lost by GP Surgery or whoever.
You can also report it to the Information Commissioner’s Office via their website.
If you enter your gas or electric meters readings on-line, the Company does not turn around and say, We lost the readings, so we made them up, you now have to pay this much.
Took 5 yrs to get my daughter diagnosed and then the GP told me to buy her a multi vitamin with B12 in it!!
Luckily another GP in the practice had B12 deficiency and I managed to get her the loading doses of 6 injections then 1 every 3 months.
We resorted to buying our own supply from Germany and she probably injects once or twice a week now, more if she has a virus and every day for 2 weeks after she had a general anesthetic last year (no one cared about her b12 deficiency and she couldn’t walk up the stairs the day after the op she felt so weak and breathless).
The GP doesn’t know she self injects. She still goes every 3 mths to get her one off the NHS to keep it on her records. The fight to get her diagnosed was so hard it was just easier to sort out treatment ourselves once we knew what was wrong. I was pushing her round in a wheelchair 4 years ago on holiday and now she has a full time job, goes out at the weekends with friends etc If Id listened to that first GP I dread to think what state she’d be in now.
Unfortunately there is no specialist of Pernicious Anemia. I've searched the universe and I've found maybe two our three mostly in the research field that are experts in various parts of this very systemic disease. Most GPs are not going to be helpful. They're too busy pushing patients through on 10 to 15 minute visits.
A hematologist will only address the B12 or megaloblastic anemia but PA being but a symptom of Autoimmune Gastritis is so much more than B12 deficiency. It really is a disease of the immune system attacking the stomach. So it would seem a gastroenterologist would be the right specialist but I've yet to meet a Gastro that thoroughly understands the digestive process. They are too busy pushing patients through also and erroneously prescribing PPIs. Here in the US you can find them mostly in the OR performing endoscopies and colonoscopys as that's where they make their money. I refer to these as endoscopic technicians a much more fitting title. Don't get me wrong on this as we definitely need good endoscopists!
Neurologists will sort of look at you cross-eyed run some tests, MRI of brain and spine and soundly declare you've brain atrophy or Subacute combined degeneration (SCD) of the spinal cord, grunt a few times and scribble some notes then there's not much for them to do after that.
To address all of this, personally, I've assembled a team of specialists and I sort of act as my own GP. to do this I have a private Naturopathic medicine doctor (ND) who is very interested and fascinated by my antics. then I have these specialists:
Gastroenterologist (Gastritis and cancer surveillance)
ENT (chronic cough caused by laryngeal sensory neuropathy)
Allergist (food sensitivities)
Oncologist (surveillance of my PA Gastric Intestinal Metaplasia, associated gastric cancer)
I must say I have gone through about 20 doctors and 4 years into this I've settled on these 7 who had no experience with PA or AMAG prior to me. They are interested in learning though, which is a superb quality, and every time I visit I provide them with additional material.
I'm in the US so I'm not at all sure this is doable with the NHS in the UK?
Wish you luck on your journey and always here to help, Rexz
To address all of this personally I've assembled a team of specialist and I sort of act as my own GP. to do this.
Yes, I told one doctor, I am my own patient. At my second appointment with a private dietician, they said I must admit I am quite intimated by your knowledge. For 6 months, I lay around and slept with big medical books, zoom seminars and a university course. Many years ago, I designed my own Medical Chart, when you start recording stuff, you see patterns occurring or Trends.
To answer the question by PA234aw, which specialty ? Well, P.A./AMAG/B12D originates in the gut. It is found by blood so haematology, it has neurological involvement and it impacts every system. So, it is systemic. Therefore, all specialties should know but it is barely taught to the Medical Students. How do we influence getting it back on the Syllabus ? There are 44 Medical Schools in the U.K. Simple, write to them, synopsis of journey. PA Society leaflet and donate a book to the library.
re: (One further question, once you’ve had the 6 loading injections should there be a further blood test to check B12 levels? There seems to be conflicting advice on this.)
From a purely medical perspective, my personal opinion is YES. The reason is that depending on how deficient you are to begin with and how long you've been deficient it "seems" (I've no proof other than observation) that someone, like myself, who was extremely low at 70 pg/mL (range 232 - 1245) and was untreated for years. My serum B12 after 3 months of treatment only raised to 189 pg/mL still very low. It took another three months for it to raise to 2000 pg/mL which is the highest reading at the lab I use so it was maxed. After this was reached we stopped testing B12.
BUT from what I hear about NHS where they want to stop treatment if your serum B12 is normal or "to high" I would maybe adhere to Narwhal10 advice and make sure they do not test for B12.
So maybe that was sort of a non-answer but I gave it a go... 😜
Standard treatment in the UK for those presenting with neurological symptoms :
every other day (EOD) injections until no more improvement is possible by doing so, thereafter every 2 months.
Nerve damage can take a long time to heal and this should be recognised, as well as the decision on when a plateau has been reached being better made by dialogue, given that not all B12 deficiency symptoms are visible (or recognised as such).
NICE, BCSH and BNF have all produced medical guidelines.
I was given 2 injections a week (although 3 were requested) for six months. The improvement was undeniable.
The decision to move to one a month at this point was an error. I have taken it upon myself to rectify this !
If you have time, look up the UK document "NICE CKS Anaemia - B12 and Folate deficiency".
NICE is the National Institute for Health and Care Excellence.
In the management section of this document, there are treatment guidelines for UK.
I'm not medically trained.
"so far I’m on the ‘standard’ NHS protocol having had my 6 loading injections of B12 and awaiting the next injection in 2-3 months "
Your GP appears to have you on a treatment pattern for those without any neuro symptoms.
If you have neurological symptoms eg tingling, pins and needles, tremors, twitching, migraine, memory problems, brainfog, trouble finding words, incontinence (and there are many others) then my understanding is that you should have had a B12 loading injection every other day for as long as symptoms continue to get better (could be weeks or months of every other day injections) then a B12 injection every 2 months.
If GP is unaware of this then you could ask them to look in their BNF book Chapter 9 Section 1.2 or at online BNF.
If you can, try to find the local B12 deficiency guidelinesfor your ICB (Integrated Care Board) in England or Health Board in Wales/Scotland and compare them to NICE CKS document.
Some local B12 deficiency guidelines are not as helpful as they should be. See blog post below.
Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.
Lots more B12/PA info in pinned post "Various PA/B12D resources". Pinned posts are on right hand side of screen if on computer. Scroll up or down to find them.
Sleep bunny, Thanks for the very comprehensive reply. I am a member of PAS and have read much of their guidance and materials.
Having read the numerous replies to my original post it just adds to the overall lack of clarity on how best to handle the condition and the challenges of finding someone in the UK NHS that is prepared to take a lead on treatment and management.
It’s clear that GPs are largely out of their depth and are simply following the basic NICE guidance, or a localised version of this. No one I have seen so far has raised the possibility of EOD injections for neurological symptoms, including a neurology consultant I saw yesterday. Whilst he acknowledged my B12 deficiency he wants to explore other areas that could be causing the symptoms, such Parkinson’s Disease, with yet more head scans He was of no mind to increase B12 injections and suggested I need to see haematology. I came away with the clear view that he really didn’t have understanding of B12 deficiency or PA, despite having some suitable symptoms. I will now explore haematology through my GP and/or consider seeing a private neurologist.
My own experience of trying to get additional injections also highlights that the NHS is not joined up on this. I managed to get my GP to prescribe an extra shot roughly midway between my last loading dose and the standard 3 month jab (about 6 weeks) but the nurse refused to give it as it had not been at least 8 weeks (2 months). I managed to persuade her to do so but only after she got cover from her management line. She was from out of the area so was possibly following a different version of the guidelines.
"I will now explore haematology through my GP and/or consider seeing a private neurologist."
The UK document "NICE CKS Anaemia - B12 and Folate deficiency" mentions in Management section when a patient with B12 deficiency should be referred to a neurologist/haematologist/gastro-enterologist.
If GP won't refer you to a haematologist then might be worth asking them to write to local haematologist for advice on treating you.
Does your GP know that if treatment is delayed or inadequate then there is an increased risk of developing permanent neurological damage? In severe cases the spinal cord can be affected.
May be worth showing them this PAS article on SACD, sub acute combined degeneration of the spinal cord.
Sadly I experienced ignorance about B12 deficiency with virtually every specialist doctor I saw. If you have gut symptoms, might be worth trying to get a referral to gastro-enterologist. I paid a lot of money for private tests and appointments and feel the money was wasted.
I was forced to treat myself as NHS refused to treat me at a time when I had over 50 typical symptoms.
Many UK forum members turn to treating themselves when NHS treatment is not enough. Some get extra B12 injections from private GPs or beauty salons (expensive), some try high dose oral B12 (1000mcg or higher) and some as a last resort turn to self injection (SI).
There is a type of gastritis associated with PA, AMAG auto immune metaplastic atrophic gastritis. Where gastritis is in the gut can give a clue to the cause.
Just curious, were you ever checked for coeliac disease?
This can lead to folate, b12 and iron deficiencies.
A person with coeliac disease can get a negative result in tTG IgA test (usual test for coeliac) if
1) they have IgA deficiency
Did you have a Total IgA test?
2) they were not eating enough gluten prior to test.
A person with suspected coeliac disease who has already gone gluten free should be referred to a gastro-enterologist.
By GP has requested advice & guidance from haematology but they deferred to neurology as I already had an appointment coming up (earlier this week). But as I mentioned above, that neurologist has effective gone down a different path based on my symptoms and is not taking a lead on B12D/PA. I’m now back in touch with my GP to get a refersal to haematology. So going round in circles.
I note your comments about Coeliac disease but I’ve never been tested. It’s something I’ll raise with by GP. I have a ‘normal’ diet. There is very little I avoid other than through personal taste. A referral to gastroenterologist would seem appropriate too.
I’m also keen to look into my folate and iron levels. I’m not currently taking any supplements for them but my GP did initially prescribe folic acid once the B12D was identified but before my PA diagnosis. Unfortunately a folate blood test was about 3 days after I’d started taking folic acid. Another GP mistake?!
I’m taking 1000mcg oral b12 as a precaution but have no idea if it’s being absorbed.
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