I'd be grateful of any advice to help me be prepared with the correct information before I contact my GP surgery. I've already received invaluable information from Forum members and the Pernicious Anaemia Society have been a lifesaver. Please excuse my long story and any over sharing of information.
I managed to persuade my GP surgery to start me on B12 injections in September 2020 (6 loading doses) after many years of chronic tiredness and me being told my blood results were normal. My paternal grandmother had pernicious anaemia and had monthly injections, some of her sisters also had PA. One of my paternal aunts had Vitiligo and the other thyroid problems, not sure specifically what but I think she had her thyroid removed. I don't know if they were ever tested for pernicious anaemia. My father certainly wasn't tested for PA, he did lose the feeling in his hands and legs while in his 80s after many years of back problems, He did have a back injury from a slipped disc though, which most likely the cause but doesn't rule out him having PA.
I recently obtained blood test results from my GP after taking the good advice I'd received from the forum. In August 1993, I had recurrent respiratory infections so my GP did a blood test, he didn't request a B12 test but the results of my Haemoglobin test was 9.9g/dl (reference range 11.5-16.5) and microcytosis hypochromia is listed on the result. I went to hospital as they suspected internal bleeding, but all tests for Crohn's or Coeliac disease came back as clear. I was given a prescription for either Ferrous Sulphate or Folic Acid and it was left at that. Throughout the following years I've yearly visited my GP surgery with tiredness and pins and needles in my arms and I've been given either Ferrous Sulphate or Folic Acid. Subsequent blood tests show my Hb in 1995 as 10.2 and in 1999 11.4. In 2000 my B12 levels were tested and were 243 (Reference Range 150-1000 ng/l), Hb was 11.4. In 2010 my B12 levels were 229 (Reference range 211-911 ng/l).
Over the years I've struggled with what was labelled as IBS, which in February 2020 got much worse and via a phone call my GP diagnosed acid reflux. He prescribed Omeprazole and after taking it for 4 months I still had reflux and in addition feeling exhausted and nauseous, I was struggling to walk up stairs. B12 blood tests in July 2020 was 209 and in August 2020 was 263. I changed to H2 Blockers in October 2020 and since February 2021 have stopped taking H2 blockers and manage my acid reflux with big diet changes.
In August 2020 my GP let me have an IFA test, which came back as 2 (reference range 0-24). I've had no explanation from anyone from the GP surgery to say what that means apart from a nurse who said it showed I could absorb B12 orally. Though clearly I don't because I've never been a vegetarian or vegan and regularly ate red meat and dairy products.
In July 2020 I had a B12 test result that came back 209 (reference range 211-911) and was having an increase in migraine headaches (I've had these since I was 9 years old), pins and needles, horrible mental fogs, chronic tiredness, burning mouth and some loss of bladder control, I asked if I could have B12 injections. I had loading doses of B12 ( 6 injections over 2 weeks) in September 2020. They were going to review me in 6 months but as I felt an improvement after the injections and many of the symptoms subsided, I asked if I could have injections every 1 or 2 months. I was told as a compromise the surgery would let me have them 3 monthly. I tried to go for 3 months but started experiencing symptoms earlier so each time I emailed GP surgery requesting an earlier injection and was allowed to bring it forward. At first they insisted on doing blood tests at the same time as the B12 injection, after my 6 loading dose of B12 (2 months later) my levels 658ng/L. Four months later after loading dose in September and another injection in November my B12 level was 1510ng/L. They've stopped doing blood tests now. I asked to bring forward my injections from June to May 2021, which they did GP has said my injections will be every 10 weeks instead of 12 weeks, but still not 8 weeks.
I'm not sure how to proceed with my GP and how to approach them, as I'm a bit worried they'll stop my B12 injections altogether. I feel a bit like Oliver Twist asking for more! I've read Martyn Hooper's book 'What you need to know about PA and B12 deficiency and am midway through 'Could it be B12' by Sally Pacholok and Jeffrey Stuart. I definitely feel that I suffer from a deficiency of B12, because I feel so much better after having the injections and then symptoms start coming back before the next injection is due. I'm wondering if low stomach acid is what I'm struggling with rather than too much acid. I'm not keen on self injecting, but I'm keeping that as a last resort. Going on my past medical history does it seem as if my problems are low B12, I've struggled with migraines, respiratory infections, tiredness and retaining information most of my life. I've never been a vegetarian or vegan and eat red meat. I did eat dairy products until last year when the acid reflux started. I've had to stop eating dairy products because I react to it and my digestion seems to be very sensitive to certain foods. I've lost over 2 stone in weight in a year and have not been able to regain it. I had a CT scan, endoscopy and sigmoidoscopy last year which showed nothing remarkable. I've got a video appointment with a GI consultant in a few weeks, but I'm finding the medical profession are not very informed about PA or causes of B12 and have preconceived ideas. I'm a lot more informed than I was, with the help of the Pernicious Anaemia Society and the Forum, but it is very wearing trying to get medical professionals to listen and help. I feel, that sadly my GP surgery would prefer to prescribe medication to mask symptoms but never find the actual cause. All the GPs at my surgery are part-time so I don't have a designated GP, just whoever picks up my email as we're asked to email not phone. There are no other GP practices in the village, where I live. I'd be very grateful for any input anyone has, thank you.
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autumngreen
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Your lowest b12 result was when taking omeprazole which wouldve depleted it even further. Your levels are low but we all function at different levels and it's nor am exact test. So I'm glad they are not testing again.
It does take years for levrks to drop. With your history the gp should test more as well.
It sounds as though your surgery are listening to you at last. My daughter has just got hers to 10 weeks rather thsn 8.
Keep a symptom diary and keep writing to your gp.
It dies take a long time to get a frequency that serns to keep away alot of symptoms.
Some chooses to buy b12 and inject between prescribed b12 injections.
Keep pushing though as you are doing well.
Do keep getting tests for other things too.
So many things overlap.
Thyroid
Low ferritin
Low vit d
Low folate ect
Thyroid tests ect
Take a multivit too.
I found I hD to stay on a frequency fir quite a while to try and get a bigger picture of progress.
Your digestive issues might be helped by adding a bit of acidity to your meal.
I have cider vinegar on food or acidic juice
An elimination diet csn help discover what 'uosets' you.
Many have found prbiotics to help or enough b12.
My daughter used fodmap which takes alot of time but has really helped her.
Sounds like regular blood checks a good idea with as much on as possible.
I request these.
Hope you will get benefits from regular injections now.
Link has letter templates that you could base your own letters on.
Point 1 in above link is about being under treated for B12 deficiency with neuro symptoms.
Point 5 is about being symptomatic for B12 deficiency with an in range serum B12 result.
Why a letter?
Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.
Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.
When a letter is sent to GP, worth including a request that GP practice sends written confirmation to letter writer that they have received letter.
I included a request in letters that a copy of letter was filed with medical notes.
My understanding is that in UK, letters to GPs are supposed to be filed with medical notes so are therefore a record that an issue has been raised.
Useful to have a paper trail in case there is a need for a formal complaint over treatment in future.
Letters could contain relevant test results, date of diagnosis, brief family and personal medical history, extracts from UK B12 documents, requests for referrals to relevant specialists eg neurologists, haematologists, gastro enterologists.
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 you need it in the future.
You mention in the past that you were prescribed ferrous (iron) supplements and folate.
Treating folate deficiency without treating a co-existing B12 deficiency can lead to neurological issues. See BSH guidelines above.
If your GP is reluctant to give you injections more often, you could
1) Draw their attention in any letter/conversation to the treatment pattern in BNF Hydroxycobalamin link for those with "neurological involvement" (neuro symptoms).
GP can find this info in their BNF book Chapter 9 Section 1.2
2) Draw their attention to risk of permanent neuro damage including damage to spinal cord if B12 deficiency is under treated or untreated.
Each CCG/Health Board in UK will have its own local guidelines on treatment/diagnosis of B12 deficiency. I recommend you find the local guidelines for your CCG/Health Board/area of UK and compare them with BSH. NICE CKS and BNF links.
Some local guidelines are unhelpful which might explain some of the difficulties you have had with GP. Some of these local guidelines have been posted on forum so you could try searching forum posts.
I've written some very detailed replies in the threads below which hopefully have B12 info you will find useful eg books, articles, UK B12 documents, B12 websites along with a few hints about managing unhelpful GPs.
Thank you for your good advice and input, very much appreciated. All the information I've gained from Forum members and Pernicious Anaemia Society have really helped me to feel more confident to ask for the correct treatment.
first thing first. ditch the gp.SELF CENTRED, KNOW IT ALL, UNCOOPERATIVE IDIOT/-S NEEDSA LESSON,HOW TO WELLREPRESENT A GP'S and maintai a good re3putation.
i am NOT medically trained. do you normally suffer from an acid reflux, daily needing a pill.? Why am I asing. my late husband all his life had it HENCE ANY PRAZOLES MEDS affect absorption of vit b. and b12 is a bcomplex, I have a neuro condition.I AM STAGGERED YOUR DAD HAD PINS AND NEEDLES and NOT DIAGNOSED. it cld hv been a myriad of reasons for it.from a vitb problem to a neuropathy.question.diabetic or NOT, he, you....important...
Thanks Coat2003, yes it's hard when our medical professionals are more of an obstacle than a support. Unfortunately, all the GP's in my medical practice seem to be ignorant of B12 issues and there isn't another medical practice in the village that I live in. I weaned myself off off ppi's and H2 blockers and now manage my 'reflux' with diet changes, which have helped.
Yes, I wish I'd been more informed about low B12 when my dad was alive and I'd have pressed GP to carry out B12 tests on him. I'm not sure why medical professionals wilfully ignore the possibility of low B12 in patients. My dad had a crushed, leaking disc in his back so that was seen as the cause of his symptoms and as far as I'm aware, they never tested him for low B12 despite his mother (my grandmother having pernicious anaemia). Thanks for your input, much appreciated.
that is very unfortunate, a restricted choice. I might move from my place now, but it looks like I am keeping the same practice...more for telephone advice, have a skin condition, unless extra infection, for what my gp NEEDED TO SEE ME IN PERSON, I'd rather travel 30 mins by car driven by my friend, as I AM VERY AWARE TO SWAP AND CHANGE, nNOT advisable...Rarely I find so helpful surgery all the staff.incl. docs, nurses, admin staff.Some so called docs DON'T HAVE INTEREST, there is NO SUCH A THING AS A family gp anymore.as my late husband often talked about, knew it all eg genetics is important.monika x had a broader knowledge, knew father so cld forsee kids...and ailments.
Some years ago I was tested for coeliac disease, but they came back as normal then. I'm having a video appointment with a GI consultant on 2 weeks so have a list of questions to ask and will ask about coeliac disease too. My problems definitely are related to something wrong with my digestion. Thanks for your input, really helpful.
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I don't think I have PA but I would appreciate the benefit of your advice please?
Doctor Appointment Tomorrow. Advice Much Appreciated!!
Any advice appreciated as losing faith in my Dr! 
B12 injections will alleviate pernicious anaemia symptoms 
