Hi all, first time here needing some advice on my B12 results and how to approach this with my GP. I was first diagnosed with B12 deficiency Jan 20 and my GP prescribed B12 & iron tablets.
Tests done
B12 187
Ferritin 6
Anti intrinsic factor Negative
Gastric anti parietal Negative
From those test my GP said I couldn’t have Pernicious anemia due to test results.
I had more blood test done in November 20 as I was still feeling unwell. My B12 was 201 and I was prescribed more tablets for B12, iron and folic. Although I was having a lot of B12 deficiency symptoms my GP said this couldn’t be related as I now didn’t have anemia and refused to give B12 injections.
I stopped taking the folic tablets after a month but was still taking B12 and iron until July 21.
None of my symptoms have resolved and if anything I feel worse so I asked for my B12 to be checked again.
24th August 21
B12 180 (200 -883)
Rechecked on 28th September 21
B12 175 (200 - 883)
I’ve had a call from my GP receptionist to say the GP has done me a prescription for B12 tablets to take for a month then have my levels checked again. I’m now waiting for a call back from my GP on Monday to explain why I’ve been prescribed oral B12.
I feel I probably need B12 injections as there’s been no improvement using oral B12 but how do I convince my GP.
Written by
MissyY
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The IFA test is unreliable in that it gives false negatives in people with PA half the time. So a negative result doesn't mean that you don't have PA. However, a positive result is a sure-fire, 95% certain indicator of PA.
Go back to your doctor and suggest you are tried on a course of injections as from all your test results and ongoing symptoms the B12 supplements are not being effective,
I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for nearly 50 years.
I wish you well.
Read the guidelines on treatment and quote them to your doctor
Especially
"Treatment of B12 deficiency in people with neurologic involvement should include:
Seeking urgent specialist advice from a haematologist.
If specialist advice is not immediately available, initially treating with hydroxocobalamin 1 mg intramuscularly on alternate days until there is no further improvement, then hydroxocobalamin 1 mg intramuscularly every 2 months should be considered."
I forgot to say - also, get yourself tested for the MTHFR gene mutations/variations too. Have a read up on that as well (see Dr Ben Lynch's stuff all over the internet if you haven't already) because often with those variations, those people have difficulties absorbing/methylating B12 & folate, so they then need to take specific kinds like 5-MTHF (methylated folate) & B12 in the forms of methylcobalamin, adenosylcobalamin and/or hydroxococbalamin. Apparently: "Methylcobalamin is used much more efficiently by the liver, brain and nervous system".
I'm taking a tri-blend of liquid B12 orally atm and although I never test low in B12 (I eat a lot of meat but as I say, I have inflammatory bowel disease so I'm pretty sure I have malabsorption issues because I've had it for over 20 years now), I've already got more energy. So just imagine what the injections would do for you! 😉
One certainly has to be ones own doctor if one has Pernicious Anaemia! It’s truly outrageous ! It’s one of the step- children of the medical world .. Trouble is that there’s not any research done on PA. because there’s no money in it . B12 is a vitamin ,therefore no patent rights on any B12 medication .The “big boys “ don’t manufacture it ., only small companies . P.A.S, is doing some research , but it’s obviously expensive and progress will be slow .
Thanks, I hadn’t really thought of writing to the GP and I will definitely give this a try. I’m not vegan but the GP has suggested it’s a dietary issue without even discussing my diet. I’ve made it clear to them I’m not vegan or vegetarian but the advice is always eat more food containing B12.
Now I have to be asking why hasn’t more than a year of taking oral B12 and iron helped.
In fact my B12 is lower now than when I started my treatment.
My last results
Ferritin 29 ( 15-200)
Folate 3.1 (3.1-20.0)
Thyroid function test
TSH 3.08 mU/L (0.35-5.00)
Free T4 11.6 pmoL/L (9.0-210)
Thyroid test done due to having most symptoms of hypothyroidism.
Excellent advice so far and you could also find Sleepybunny and Foggyme 's excellent replies on the subject by going to their profiles by double clicking on their names and looking under the heading "replies".
I think you do need injections, I would pretty much hazard a guess that you have PA - and you probably should've been given an iron infusion too.
Just wow. Doctors
Do you have inflammatory bowel disease or anything like that? (I have Crohn's). B12 injections will never do anything bad to you, they'll only test to see if you feel better - or not. But you should inject every single day for a little while to test the theory, and then inject according to how you feel - as needed.
Have you read this guy's stuff/site? (please see link below). I'm in Australia and we just ordered the B12 from this site/place (in the UK), and I am going to test myself whether all my symptoms are PA related or not, which I think they are. As I say, you can do no harm by trying them.
This guy's site is so amazing & SO informative! Have a read of it - and you can order from him/them too if you need to
Best of luck and I hope you (and we all) feel much better soon! 💜
If you feel that you have to have Methylcobalamin B12 , it’s best to administer it using single use ampoules . There is always a danger from contamination when a quantity of powdered Methylcobalamin is reconstituted, and kept for future use. That powdered Methylcobalamin thats mentioned in the link you provided (from Israel ,) is very expensive . oxfordbiosciences.com supply it at much lower prices .
The best B12 I’ve ever used ( I’ve tried them all ) is Hydrocobalamin single use ampoules obtainable from some German online pharmacies .
£25.00 for 20 mg + P&P . £32.00 for 40mg + P.P from oxfordbiosciences . ( (to illustrate how expensive that Powdered Methylcobalamin is from Regev Elya .)
As others have said, a well written letter often gets better results. I think you may well have PA, if you can possibly convince your GP to trial b12 injections and your symptoms improve they should agree to continue. Your ferritin and folate are also low so you need to continue with these, you probably will have low vit D as well, has it been tested?
UK guidelines indicate that patients with the symptoms of B12 deficiency should be treated even if serum B12 results are within range.
From personal experience, I can tell you it is possible to have severe B12 deficiency symptoms with results that are well within range.
Apart from one result that was below range, most of my B12 results were between 300 - 500 ng/L, well within normal range and I deteriorated to the point of dementia symptoms and spinal symptom, with over 40 different symptoms affecting multiple body systems.
"Anti intrinsic factor Negative
Gastric anti parietal Negative
From those test my GP said I couldn’t have Pernicious anemia due to test results."
Have you considered joining and talking to PAS who can offer support and pass on useful info?
There are many possible causes of B12 deficiency besides PA.
What's your diet like?
Do you eat plenty of B12 rich foods eg meat, fish, shellfish, eggs, dairy, foods fortified with B12?
If yes to B12 rich diet then any deficiency is more likely to be due to an absorption problem in the gut eg PA, Coeliac, Crohn's disease, internal parasites eg fish tapeworm, damage to terminal ileum (part of gut where b12 is absorbed).
Other possible causes include exposure to nitrous oxide, some medicines eg metformin, a diabetes drug, PPI drugs, excess alcohol intake etc.
"GP has suggested it’s a dietary issue without even discussing my diet"
Have you considered writing out a typical weekly diet, food and drink for GP so they can see you are eating B12 rich foods.
Have you asked GP to explain why they think it's a dietary issue?
Emphasises need to treat patients who are symptomatic even if their B12 level is within range.
Low dose cyanocobalamin tablets 50mcg are sometimes prescribed for dietary deficiency.
My understanding of UK B12 guidelines is that B12 deficiency with neuro symptoms present should be treated with IM injections even if cause of B12 deficiency is dietary.
There are moves across UK to put move more patients from IM (intra muscular) B12 injections to high dose 1000mcg oral cyanocobalamin tablets.
Although this is often promoted as easier for patients, cynical me suspects a cost cutting measure.
There are people on this forum who manage by using high dose oral tablets but others, including myself, who report that high dose oral B12 tablets are ineffective.
Each CCG/Health Board in UK will have own local guidelines on treatment/diagnosis of B12 deficiency. Worth tracking down local guidelines for your CCG/Health Board and comparing them with BNF, BSH and NICE CKS links above.
Some local UK guidelines have been posted on the forum.
Try a search of forum posts using term "local guidelines" or an internet search or submit a FOI (Freedom of Information) request to your CCG/Health Board asking for a copy of local B12 deficiency guidelines.
I hope you are not in the UK area discussed in blog post below which has a poor reputation on this forum for how B12 deficiency is managed.
GPs don't usually like to be put on the spot when a patient asks difficult questions so may be worth putting questions into brief letter to GP before an appointment so GP has time to think about answers.
Point 1 in above link is about being under treated for B12 deficiency with neuro symptoms present.
Point 5 is about being symptomatic for B12 deficiency with an in range serum b12 result.
Link has letter templates that people can base their own letters to GP on.
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. Proof a letter was received may be useful if there is a need for a formal complaint in future.
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.
Links below are to forum threads where I left detailed replies with lots of B12 info which you may find useful eg more B12 books, B12 websites, B12 articles and a few hints on dealing with unhelpful GPs.
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