B12 blood tests

[babs67]

Having had b12 injections 3 monthly for 4 years my docter says i should start having them 6 monthly as my blood tests read at 1100. Tried waiting longer but felt awful. Its a battle with my doc. What do you suggest as I am seeing my doc again this week.

[Lisahelen]

If your gp is unmovable regarding how you are treated then i think you may need to consider finding another way. self treating will give you more control of your own health.

Unfortunately there are quite a few other medical problems which give the same symptoms, perhaps you could politely force them to try to address your symptoms by asking if it is just the b12d which makes you feel the way you do and not something else which is perhaps being missed ie. Thyroid.

I suppose much of the information you were given on your original post still applies.

[babs67 in reply to Lisahelen]

Thank you for replying I have had blood tests for no end of conditions and all ok

[Gambit62 Administrator]

Suggestions:

draw your GPs attention to this site

pernicious-anaemia-society....

draw your GPs attention to this alert on the limitations of the B12 serum test

ukneqas-haematinics.org.uk/...

ask your GP what he knows about functional B12 deficiency

or as lisahelen suggest - try to find another GP or start treating yourself.

Treating a B12 deficiency based on test results after supplementation has started is also out of kilter with all the guidelines out there in the UK at least.

[Sleepybunny]

Have you contacted the PAS? They can sometimes intervene on behalf of members.

pernicious-anaemia-society....

01656 769 717

Lifetime membership costs £20.

martynhooper.com/

There may be blog posts relevant to your situation.

In your earlier thread a few weeks ago I included some links that may be helpful.

[babs67 in reply to Sleepybunny]

Yes thank you I am a member

[sweetnessandlight]

Your b12 should never be retested once you have started injections for this very reason- the result will always be high. In fact, that information is printed on the test results from our lab to remind doctors who are as ignorant as yours.

[MariLiz]

They shouldn't be taking any notice of your blood test results once you are on injections. This information is available to doctors from the Pernicious Anaemia Society website. We can have plenty in our blood stream, but it may not be getting to our cells.

[Polaris]

Your GP is not well informed about PA/B12def. and risking your health.

The BMJ research document, as well as BCSH guidelines, states that further testing of these levels is not required after treatment with injections is already in place - see bottom of page 4 under:

'How is Response to Treatment Assessed - "

"Cobalamin and holotranscobalamin levels are not helpful because they increase with vitamin B12 influx regardless of the effectiveness of treatment,24 and retesting"

cmim.org/pdf2014/funcion.ph...

For further information in a summary of BCSH, NICE, etc. guidelines and BMJ research on B12 deficiency: 

frankhollis.com/temp/Summar...

I hope you are able to convince GP Babs but, if not, as others have suggested the PA Society may be able to help.

[littlecarol]

He is wrong!!  I was on 6 weekly hydro injections last year and it still was not sufficient... i remember going to see my doctor in desperation because I felt so weak and had no voice... he told me my B12 results were in the 1000's so it was not that and sent me for more blood test..which all come back as normal.   I told him I had ordered methyl b12 patches off amazon and asked his opinion....but he did not comment.  After putting the patch on at 8pm I went to bed shattered.....but the next morning when getting ready for work I felt so different...normal even!  I could not believe the difference that methyl patch made in just 1 day.   i came home from work after 9 hours and for the first time ever went for an hour long walk with the dog...and was still awake at 11pm!! Needless to say that I have used patches ever since and my life is better than ever.  i still need my hydro injection but need them every 2 weeks .....i must get different benefits from the different forms..... I have resorted to self injecting as I cant wait 6 weeks .  After years of always being unwell I feel I am getting there at last!!      Dont rely on the doctors....listen to fellow sufferers on here who have battled for years with the "professionals"!!    listen to your body... its is a vital vitamin... we r not drug addicts..but sometimes it makes u feel like that!!  good luck...

[babs67 in reply to littlecarol]

Been to docs today and finally after 6 months of tests they have agreed to 3 monthly injections b12 now reading at 910. What a stressfull time. But got there in the end. Worth fighting your battles