To be treated or not be treated – that is the question

How do you know if you have Pernicious Anemia?

My Grandmother had it badly, my uncle has B12 Deficiency, I have had low B12 numbers but my GP is so uninterested he diagnosed MS

I know the symptoms for PA but how the hell do you get a test out of your GP?

They don’t even seem that keen on a B12 deficiency

I found the following e-petition calling for research of and treatment for Vitamin B12 deficiency to be funded

petition.parliament.uk/peti...

Any kind of help seems to be thin on the ground with the GPs here!!

[Gambit62 Administrator]

This site may be of use

b12deficiency.info/

lots of information and tips on dealing with GPs

[Allyson1]

Could you point out your family history to your doctor and ask specifically for the antibody test for PA? You deserve to get the care you need!

[Hidden in reply to Allyson1]

My GP is well aware of the family history, just not interested

I filled out the B12 deficiency check list on the PA website, 9 of the 5 points were ticked, technically all 3 or the 2 points (although I've had tinnitus since I was 12 due to chlorinated swimming pools), and a goodly number of the 1 pointers.

Do I take it the antibody test is a specific test? I've only ever had the full blood count (and rarely giver more than 'you're B12 is a bit low'. You have to ask for the numbers.

Is Glandular Fever connected to B12? Had that when I was 17 and never really got over it

[Gambit62 Administrator in reply to Hidden]

There are two tests for antibodies associated with PA - but neither of them is particularly accurate - PCA is generally no longer recommended as a test because the results are so erratic and complicated to interpret - IFA is frequently done and people are told that it is negative so they don't have PA when infact the test is only at best 50% accurate - and in reality getting a positive result is the only one that really means anything.

[Hidden in reply to Gambit62]

I know my Grandmother had a lumber puncture and it didn't do her any good at all. My Dad said she used to have to carry a bucket round with her because the PA was so bad she couldn't keep any food down.

I don't think I have got PA. I did have trouble with my stomach a couple of years ago but it's been pretty stable for the last year.

I was given omeprazole to calm it, whether that did anything to my B12 I don't know.

[Sleepybunny]

My top tip would be to phone the PAS. You can leave a message and they will get back to you. It may take a day or two.

pernicious-anaemia-society.... 01656 769467

"but how the hell do you get a test out of your GP?"

In the past I have shown GPs lists of my symptoms especially those that are neurological in nature as the treatment for B12 deficiency with neuro symptoms is more intensive.

pernicious-anaemia-society.... I used the symptoms list.

b12deficiency.info/signs-an...

I have also shown GPs current articles and research.

1) Has your GP looked at the advice in the BNF (British national formulary) . The info on b12 defic. is in Chapter 9 Section 1.2. All Gps will have access to the BNF. I believe members of the public can subscribe but not sure what it costs. You can also buy a copy.

bnf.org/

2) has your GP seen the following?

ukneqas-haematinics.org.uk/...

bmj.com/content/349/bmj.g5226

Google "BCSH CObalamin and Folate Guidelines" A lengthy document but well worth reading. I found page 29 useful, a diagnosis flowchart. There ia a summary of this document inthe PAS library section.

I'm a bit tired today but if you look on my recent posts there is more info.

[pvanderaa]

If any doubt treat it as a B12D. You can't overdose. It is water soluble and you might just get an energy burst.

It is nice to know if you have PA but don't waste time trying to figure that out if you are already exhibiting neurological symptoms. The cost of delaying treatment are very severe.

[Hidden in reply to pvanderaa]

I have had numbness but I have a big problem with my back. My legs have been numb for all but 2 weeks since December. I don't really know whether it is causing all the burning/prickling, or if it is something else.

My GP sent me to see a neurologist, who sent me for an MRI. Lesions and demyelination showed and he sent me to an MS neuro.

Trouble is the first neuro didn't believe that I'd had a scan back in 2002 which probably showed the same amount, due to optic neuritis. I understand that can be connected to B12D.

Anyway, I had a copy of the letter the MS sent to the first neuro, he said it's most likely spinal. Whether that means the issue I have or something else I don't know.

[Polaris]

Thank you for posting this petition Snuffle. I've signed and sent it on to my MP with a letter and the latest questions in the House of Lords, not that I'm hopeful it will do any good. I'll probably get a 5 page answer from Jeremy Hunt as before re. thyroid treatment with T3 - full of b...s and gobbleygook .

[clivealive Forum Support]

I'm now the 363rd signature.

Only 9,637 more required to get any action

[Hidden in reply to clivealive]

That's true. but they only give the petitions 6 months now so I really can't see it going anywhere