Peniel

[Peniel]

I have been diagnosed with pa .GP have loading dose of 1 b12 injection per week for three weeks and now on 3 monthly injections. I find all the symptoms are better apart from feeling weak and tired constantly

[clivealive Forum Support]

Are you in the U.K. Peniel ?

If you are and do have Pernicious Anaemia your loading doses should have been every other day for two weeks or until there was no further improvement in your symptoms and the maintenance injections should then be every eight weeks according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

or

bnf.nice.org.uk/drug/hydrox...

Has your Folate level been tested?

I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 46 years.

I wish you well.

[Peniel in reply to clivealive]

I did mention the nice recommendation for loading doses,but he did not agree with me.

He did give me a blood test and the b12 had gone up from 127 to 1027 and therefore I did not need any more b12. I have decided to self medicate as there is no point in arguing or begging with the GPS .He did say that tiredness will stay and I just have to live and cope with it.

Yes I do live in the UK

[clivealive Forum Support in reply to Peniel]

If you have a definite diagnosis of Pernicious Anaemia B12 injections are for the rest of your life and your doctor should know this.

How long after an injection was the test taken?

I suggest you join the Pernicious Anaemia Society click on the link below and scroll down

healthunlocked.com/api/redi...

They may intervene with your doctor on your behalf.

It costs £20 for a year's membership and you will find lots of valuable articles on the site.

[Peniel in reply to clivealive]

Thanks will do as you suggest

[Cherylclaire Forum Support]

GP seems to be making own rules up, and not following guidelines at all. This is not an easy thing to live with, especially if your GP is unwilling to be supportive or unable to follow professional advice. No you don't have to give up trying to improve and just live with debilitating symptoms as your GP seems to believe.

Your blood level was low. Flooding you with B12 and then remeasuring your blood level is not useful. Under these circumstances, a corpse would also have a high reading- but would still be dead.

So, flat tyre with air pumped in = no solution to problem.

How many 3-monthly injections have you had ? Enough to be able to know if this is an effective maintenance dose for you or not yet ?

I think that if I was you, I would also not want a long-term battle with a GP who is already ignoring NICE guidelines: is there no-one else at the practice who may be more helpful ? Who might listen ? I would also suggest keeping daily records: list symptoms, severity and frequency- over time a pattern might emerge. This might help your case.

This is quite difficult enough and will take time. Get yourself a GP who is not so willing to give up on your long-term health.

B12, folate and ferritin: get your blood test results especially these. Post on here with units of measurement used and ranges. People here, like clivealive , know how to help you because they have lived with this condition- not just survived.

[Peniel in reply to Cherylclaire]

Thank you will take all suggestions on board