allowed injections

[lindabre]

Hi all .recently visited endocrinologists and he has agreed I can get B12 injections,my Gp said I didnt need them as my level at 185 was fine and to take 1000 mg capsules. I rang my Gp surgery after the endo wrote to her and was told to come in for injections,I was delighted initially as yeah here was my chance to get better .I went to the nurse and she said I was to get one injection for next four weeks and then to come back on a three monthly rotation.On reading posts here and looking on multiple sites i see that more doses are needed..can someone advice me

[clivealive Forum Support]

Hi lindabre ,

I see you have a number of posts here and elsewhere but I cannot see if you have an actual diagnosis relating to B12, Depending on the range used i Ireland I would say that at 185 (after having been taking tablets per previous posts?) is definitely low.

I'm not medically qualified but would be interested to know why your B12 is so low.  Are you vegan, vegetarian?

[lindabre in reply to clivealive]

Hi .I have no diagnosis relating to low B12.I am not vegan or vegetarian. How would I get a diagnosis and why would I need it.I just thought if it was low it needed supplementing.Doctors seem very odd around this subject which is unusual as I can get sleeping tablets,pain mediation etc with no problems and these are toxic with tons of side effects.

[Lilnicki]

If you have neurological symptoms then you need alternate days until no further improvement...... If this is the case then the consultant needs to spell this out in a letter so there's no misunderstanding from your nurse or GP.

[jillc39 in reply to Lilnicki]

yes, you really need more backup from the consultant,

[Sleepybunny]

Have you had an IFA test?

This can help diagnose PA. It is not always reliable and people with a negative/normal result may still have PA. The "BCSH Cobalamin and Folate Guidelines" mention Antibody negative PA on page 29.

Link about testing. Some test results may be affected if you are already supplementing with b12.

b12deficiency.info/b12-test...

b12deficiency.info/what-to-...

Have you contacted the PAS (Pernicious Anaemia Society)? Lifetime membership costs £20. They have members from around the world. In some cases they can intervene on behalf of members and can point people to useful information and local support groups.

pernicious-anaemia-society....

01656 769 717

Other b12 websites

b12d.org

martynhooper.com/

Useful B12 books

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

Could it be B12?: An Epidemic of Misdiagnoses by Sally Pacholok and JJ. Stuart

I did read on an old HU thread that Ireland has no national guidelines on treating B12 deficiency. I don't know if this situation has changed, the PAS might know the answer.

I am not a medic just a patient who has struggled to get a diagnosis.

Gambit mentions the UK neqas b12 alert, here's another article Gps might find interesting.

bmj.com/content/349/bmj.g5226

Fbirder has compiled useful summary of mainly UK b12 documents. If you search for his posts or pm him, i'm sure you'll find a link.

[lindabre in reply to Sleepybunny]

Thank you so much for your detailed reply.I just have a pain in my brain trying to understand all info and then how to explain to my gp in a way that won't get her back up as I am not a DOCTOR like her.linda

[Gambit62 Administrator]

Treatment regimes vary depending on where you are based.  Republic of Ireland follow different protocols from UK and even regionally things can vary.

Please contact the PAS and see if they can intervene with your GP.

It might also be useful to make sure that he is aware of the limitations of diagnosing a B12 deficiency purely based on serum test results - this UKNEQAS alert may help

ukneqas-haematinics.org.uk/...

[lindabre in reply to Gambit62]

Appreciate you taking time out to comment on my post,it's so deflating that things are so difficult when all I want is me back

[MariLiz]

The usual loading doses are six over a fortnight, then you go on to three monthly ones. I can't understand why your doctor isn't following the guidelines?

If you have neurological symptoms, then you should be given an injection every other day until symptoms improve. I have to say my GP didn't follow this one, but I knew nothing about low B12 at the time, and didn't realise I should have pushed for more injections.

My level was 176 when my treatment began.

Best wishes

MariLiz

[lindabre in reply to MariLiz]

I don't know why she has decided this and I am not wasting 55 euros to find out

I am thinking about self injecting and taking care of myself as every time I find a reason for feeling bad a wall is thrown up.😡😡😡

[Sleepybunny]

Lindabre,

Perhaps your local MP may be able to help if you need to find out information.