I was diagnosed with pernicious anaemia in nov last year . I am 65 years old and also have hashimotos thyroiditis for 30 + yrs. I had been under my gp for low b12 and folate for over a year ( just given folic acid) as my b12 was not low enough to start injections. PA runs in our family though. In the end as I felt so ill I paid to see a private consultant who did the necessary antibody blood tests and started me on b12 injections (showed me how to self inject) he said to take 5mgs folic acid on day of injection only.I have now been on alternate day injections ever since, some neurological symptoms have improved but by no means am I back to 'normal'. My question is about the folic acid as I have read on various groups it can be dangerous in high doses, while other groups advocate daily doses of 5mgs . I have every confidence in the consultant I saw, and have had blood tests since to keep an eye on my iron levels , no acknowledgement from my gp regarding the letter the consultant sent to them.and to be honest have lost all faith in them. I feel a little worried and wondered if anyone could share their thoughts /advice?
Advice on folic acid: I was diagnosed... - Pernicious Anaemi...
Advice on folic acid
It's terrible that your GP let you suffer for over a year because your B12 wasn't 'low enough'. It just shows how ignorant most GPs are. Luckily you had enough money to pay to go privately. And even luckier that your consultant seems to know what he's doing. A lot of consultants don't. I think you will do well following his guidance. I would write to your GP and make sure that they have updated your medical notes to show you have PA.
Honestly I don't think your GP will be much help. The likely scenario is that they will give you another B12 test, find out that your levels are high, and say you don't need any more.
Does your consultant gives you a prescription for EOD injections? In which case it may be worth staying with him/her if you can afford it. Otherwise there is a wealth of information on this forum and you could DIY treatment like most of us.
Whatever you decide good luck.
Thanks for your reply, I couldnt really afford private treatment but was at my wits end and almost bed ridden,thank goodness for credit cards ! I still get the folic acid privately and the first 2 months of b12 was from him, but the consultant then pointed me in the right direction re syringes needles etc. I literally thought I was dying before I started treatment, its awful to feel so ill and the one person you could turn to for help (gp) was constantly telling me they have to abide by the guidlines! My poor sister has suffered with PA for 40 years and is STILL undertreated.
Perhaps the private clinician will inform your Gp by letter.I think this has to be done .
If your Gp follows their advice you might well get an NHS prescription.
Get your Pernicious anaemia positive result on paper for your records and get copied into the letter sent to Gp which shoukd include that diagnosis.
If it was a private neurologist you saw Gp shoukd take note.
As for the 5mg of folic acid .
Its short term .
Then a blood test for level.
Then a maintenence dose.
Most do fine on 400mcg daily.
Some need less.
I had bloods repeated every 3 months then 4.
Then 6 monthly.
The NICE guidelines state every other day b12 injections until no further improvement.
I had to quote this to my GP.
It takes time . Keep going .
Maybe you can get your sister to visit this forum. Lots of support here.
Hi,
I'm sorry to read that you're worried about your treatment.
Sometimes if you've been ill a long time, it can take weeks or even months to see improvements. Some forum members report that they feel worse when they start treatment before starting to feel better.
Have you considered joining PAS (Pernicious Anaemia Society) which can offer support and pass on useful info?
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
PAS membership is separate to membership of this forum.
PAS support groups in UK
pernicious-anaemia-society....
Some forum members have found B12 Info.com website useful (formerly B12 Deficiency Info).
My understanding (I'm not medically trained) is that treating a folate deficiency without treating a co-existing B12 deficiency may lead to neurological problems.
UK B12 and Folate deficiency documents
NICE CKS (Clinical Knowledge Summary) - B12 deficiency and Folate deficiency
(aimed at health professionals and patients)
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 Nov 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.
BNF (British National Formulary) folic acid
(aimed at health professionals)
bnf.nice.org.uk/drugs/folic...
BSH Cobalamin and Folate Guidelines
(aimed at researchers and health professionals)
b-s-h.org.uk/guidelines/gui...
I urge UK forum members to find out what's in the local B12 deficiency guidelines for their ICB (Integrated Care Board) in England or Health Board (Scotland/Wales).
If you can't find the local B12 deficiency guidelines for your area online or by searching forum posts here then best bet is to submit a FOI (Freedom of Information) request to your ICB or Health Board asking which B12 deficiency guidelines are used locally and for a link to or copy of them.
Might also be worth finding local folate deficiency guidelines.
Coeliac disease
Just wondered if you were also tested for coeliac disease.
NICE guidelines for Coeliac disease suggest that anyone with unexplained B12, folate or iron deficiency should be tested.
More info on Coeliac UK website
coeliac.org.uk/information-...
Sleepybunny - I have just had a look at the timeline for new NICE guidelines publication, and seems to be on track for 1st November 2023. There was a date (24th March 2023 I think) for draft guideline completion - and wondered if this is available to read or not, do you know ?
There was a detailed Consultation and draft scope stakeholder comments and NICE response published in 2021 which gave a good idea of what may be covered in guidelines. Would be interested to see how this has been used to feed into next-stage development.
Don't know but will do a bit of online digging.
Thanks, Sleepybunny !
Haven't found anything.
There is a email address in this link that might be worth contacting.
nice.org.uk/guidance/indeve...
Worth a try ! Thanks, Sleepy.
"and to be honest have lost all faith in them"
I wish I could say I was surprised by your comment but I suspect that many of us end up on this forum for that reason.
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 films, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs. I suggest taking at least a week to read through it all.
Some links I post may have details that could be upsetting.
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
Link to thread about Patient Safety, has useful links for those in UK having difficult health experiences.
healthunlocked.com/pasoc/po...
Thankyou so much for your helpful reply, I joined the PAS on the advice of the consultant I saw. I will have a read over the next few days. I cant retain info that well anymore, some days cant even remember how to spell ! The consultant said I have probably been deficiant for years, but I put all the symptoms down to other things, it was in march last year I became really unwell. The list of symptoms was an eye opener for me, I could tick nearly all of them, thanks again for your help. As far as my sister goes she is trying to get more frequent injections through her gp, quoting the advice I have been given. I dont hold out much hope she has other health issues too so its overwhelming for her 🙄 p.s I had tests for chrohns and ceoliac disease as my other sisters have this too, but after colonoscopy was told just diverticular disease, which flares from time to time and I'm treated in hospital. That pain in my gut I had almost constantly has now stopped since b12 injections plus the other more unpleasant symptoms in that department 😁
Self Treatment
Some UK forum members turn to treating themselves when NHS treatment is not enough. Some get extra injections from private GPs or beauty salons, some try high dose oral B12 but this doesn't work for some people (didn't for me) and some as a last resort turn to self injection.
Your sister might find it helpful to put queries about her treatment into a letter to GP and copies to practice manager as well.
Harder for GP to ignore letters and they should be filed with medical notes so are a record that the issue has been raised. Always keep copies in case there is a need for a formal complaint in future.
How to write letters to GP about B12 deficiency
b12deficiency.info/writing-...
GUTS UK is a charity for people with various gut conditions
It's possible for people to have both coeliac disease and diverticulitis.
Did you have a gut biopsy to check for coeliac disease?
I just wondered if it's worth keeping coeliac disease in mind as you have a relative with it.
My understanding (I'm not a health professional) is that a colonoscopy looks at the large intestine but that gut damage from coeliac disease shows up in the small intestine. I'm wondering if your small intestine was looked at.
I also wondered if diverticulitis could mask the gut damage from coeliac disease.
Coeliac UK has a helpline number and maybe you could ask questions about this.
coeliac.org.uk/glossary/hel...
Some forum members here find they benefit from going gluten free even if they haven't got coeliac disease.
Hi I did have biopsies of colon, plus ct scans, and they did blood tests and stool samples, I was told I had inflammation but again it was within these 'referance ranges' I was given omeprozol for acid reflux, but I've since discovered I actually have low stomach acid, so I stopped taking it once I discovered it stops you absorbing vitamins. The private dr thinks the damage to my gut is partly to blame as some of the pockets are in the terminal ileum which is where b12 is absorbed! As I also have autoimmune thyroid think this is also a problem for me, a lot of symptoms cross over. As I kept trying to explain to gp the fatigue and weakness I felt was far worse than any I had suffered the past 30 years with hashimotos. Let alone the loss of balance, dizzyness, eye sight problems, pins and needles, strange sensations under my skin, urine incontinence the list goes on and on, all he did was repeat blood tests and the final straw was tell me I had sleep apnea, so time and money was wasted referring me for that, I havent got sleep apnea, just had the results ! I had covid dec 2020 and ended up in hospital with multiple clots on my lungs, so all in all I feel I've had a lot to cope with, the private dr was the only dr to help me, I now self treat and will continue to do so. Thanks for the support and in formation, I have a lot of reading to do 💜
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