Advice please

[Looley]

Hello all, I wonder if anyone can offer advice please. My partner was diagnosed with b12 deficiency 9 months ago following many years of numerous symptoms and a b12 level of 106. Treatment has been good up until now and is slowly feeling better. However go had referred to haematologist who cancelled appointment and stated no need for any further treatment without even seeing her. Gp has referred to neurologist now but states she will be unable to continue treatment. We are very angry and disappointed...what can we do if neurologist says the same???

[GavinUK]

Looley,

Sorry to hear of your experience. It was actually the neurologist I was referred to who found my B12 recently by requesting the test, so you may find that it works out.

However, if not, then you need to make your GP aware of the NICE guidelines, as well as the British National Formulary (BNF) which are both clear that you do not just stop treatment.

Do you know if there was a test for IF antibodies, and therefore a confirmed diagnosis of Pernicious Anaemia? It doesn't really matter as the guidelines refer to B12 deficiency in any case, but it may help to guide the best approach. Particularly in terms of others tests you may need to request or suggest to your GP.

Unless the B12 deficiency came from diet, or from a couple of other issues that can be resolved (a particular infection), then the treatment should be for life, either every 3 months or 2 months (where there is nerve involvement). That may be something the neurologist will be helpful with.

Others with longer experience will have good advice I am sure, but the pernicious anaemia society (pernicious-anaemia-society.... has some very useful information on its pages, and so does b12d.org.

The best advice I can give is to get enough information to go armed to the neurologist appointment - and perhaps put things in writing to your GP or the practice manager if you find it difficult face to face.

Good luck

Gavin

[Looley in reply to GavinUK]

Thankyou Gavin....hopefully neurologist will be helpful. IF was negative but already know this test is unreliable. Thanks for your time

[Sleepybunny]

Hi,

If you're in UK, I'd suggest reading BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines when PA and Antibody Negative PA can be diagnosed.

Has your partner had tests for PA, an Intrinsic Factor Antibody test?

b12 books

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Martyn Hooper is chair of PAS (Pernicious Anaemia Society). Book is up to date with UK B12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12; An Epidemic of MIsdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive book about B12 deficiency with lots of case studies.

Unhappy with treatment?

letters to GP about b12

b12deficiency.info/b12-writ...

CAB

citizensadvice.org.uk/healt...

HDA patient care trust

hdapatientcaretrust.com/

[Ryaan]

Depends if you had neurological symptoms due to low B12 and if your body's able to absorb B12 orally. If you're eating a good diet and your B12 still drops it means you're unable to absorb it.

If you were on B12 injections and your symptoms improved a lot or disappeared and they stopped treatment that's not good for a GP to do, because it normally means injections for life so it's a long route to take for you to not to take injections and let your symptoms come back and your levels to drop just to prove that it's the B12.

I can understand your anger as the same was happening to me and I was only allowed 1 injection every 3 months which was not enough and my symptoms kept returning in the 3rd week after my last injection so I decided to buy B12 injections and self inject every 2 weeks.

Please don't be put off by what I said but in most cases GPs don't treat you properly for low B12 especially for absorbtion problems or PA.

So you've had a good reply from a couple of people. To know the NICE guidelines for B12 treatment and take that info to your GP or haematologist and fight it.

In my case I found all this to be too much and too long to wait so I decided to purchase B12 online and self inject and take the daily recommended dose of 400ug Folic Acid daily.

I think you should go armed with enough info as possible to your next appointment as someone mentioned ( print it out and show them) and then make a decision from there if you wish to self inject if they still decide not to listen.

B12 is easy to get online without prescription and cheap. (I bought 100 x 1ml B12 ampules from a good established German company for about £56.00).

I just inject 1 every 2 weeks or even 1 monthly sometimes. (This is only if you know B12 is the problem and you can't absorb from food or oral tablets and you need injections).

You need to know your Folate, Iron, and Vit D levels as these are most commonly the cause and need to be in good range. A Thyroid test also if you haven't had one as symptoms overlap.

The worst case is (if it's the B12), that you'll just need to buy and self inject.

I don't know much about your symptoms etc but this is last resort and injecting is easy.

I'm not a professional, just someone who has B12 absorbtion problem for unknown reasons and found it difficult to get proper treatment from GP and decided to self inject following the proper guidelines for treatment.

I personally injected 1 per week for 3-4 months then reduced to 1 every 2 weeks, then 1 per month which is less than the recommended dosage of 1 injection every other day until no further improvement if you have neurological symptoms.

1 per week is good as you feel improvement gradually over 10-12 weeks and it's not overdosing and then you can reduce to 1 every 2 weeks or 1 per month.

This is my personal opinion and I'm not a medical professional and it all depends on your symptoms so please seek medical advice from a professional.

Hope you find a solution and best wishes.

Hope this helps.

[Gambit62 Administrator]

Are you UK based?

Have you seen the exact wording in the letter from the Haematologist? Is it possible that the GP may have misunderstood as saying no further treatment is needed would seem to go against the BCSH guidelines which they really should be following if based in the UK.

[Looley]

Thankyou all for taking the time to respond....I'm very grateful🙂