Doctors appointment

[bigredz]

Got my first doctors appointment this Friday since my last blood test that shows that my b12 and serum Folate where on the lower levels. 238 b12 and 3.4 for Folate. I'm a bit worried that because these are just above the limits he will not give me any treatment for them, even though I have a lot of the symptoms of pa. Is there anything I can print out etc that I can take with me to show him that I still maybe need b12 injections despite being above the limits? Did find out since my blood test that my mother has been having b12 injections for quite a few years now. I now know that P.a can be inherited so I'll make sure I tell him this, but I don't think it'll be enough to start me on the injections.

[Gambit62 Administrator]

Best bet is probably the BCSH guidelines - assuming that you are UK based

bcshguidelines.com/document...

Start with the summary on p2

there is also the introductory paragraph on p3

the section C on p8 which makes the distinction between loading regimes where there isn't neurological involvement and those where there is.

Good luck

[Secondchance]

Also google NEQAS B12 alert and take that along- suggest treating symptoms even at normal levels

[Sleepybunny]

Recent documents such as the BCSH Cobalamin and Folate guidelines make it clear that patients symptomatic for B12 deficiency should be treated even if their B12 levels are "Normal".

Your GP might like a copy of the summary points of this article.

bmj.com/content/349/bmj.g5226

It stresses the need to treat symptomatic patients to prevent neuro damage.

My top tip would be to phone the PAS. You can leave a message and they will get back to you. You don't have to be a member. They are helpful and sympathetic.

pernicious-anaemia-society.... Head office: 01656 769 717

The library section on the PAS website has some useful info. You need to be a member to access some documents.

I gave my GP a copy of the PAS symptom list below and ticked every symptom I suffered.

pernicious-anaemia-society....

This website is also helpful.

b12deficiency.info/

[bigredz]

Thanks for all your replys. Really hope I get some help this time as I can't stand feeling like this more much longer.

[bigredz]

Well, that went OK. Starting a course of five b12 loading injections on Monday. Didn't put me down for anymore tests etc, but a good result I think. Hope they do the trick.

[Sleepybunny]

Is the GP going to give you an IFA (Intrinsic Factor Antibody) test?

IFA tests can be unreliable eg you can test negative and still have PA (Pernicious Anaemia).

"Didn't put me down for anymore tests"

That's surprising as I would have thought your GP would want to know why your B12 is at the lower end. Besides IFA test, there are MMA, Homocysteine and Active B12 tests. These can be obtained privately if the GP won't order them.

"Starting a course of five b12 loading injections on Monday"

This is probably the standard treatment for B12 defic or PA without neuro symptoms. The treatment if you have neuro symptoms is more intensive. I have a feeling that the BNF says a course of six injections not five but might be wrong.

Has your GP checked his/her copy of the BNF (British national formulary)? The info is in Chapter 9 Section1.2.

Patients with neuro symptoms, should receive loading injections until they stop improving (which could mean loading injections for several weeks or months) then they should have an injection every two months.

For patients with neuro symptoms there is a small window of opportunity to put things right before these symptoms risk becoming permanent.

Have a look at these symptoms lists

b12deficiency.info/signs-an...

pernicious-anaemia-society....

Some patients with neuro symptoms find their GPs do not give the correct treatment.

Your GP might find page 29 from the BCSH Cobalamin and Folate guidelines helpful. This is a diagnosis flowchart that refers to treatment for those with and without neuro symptoms. Well worth having a look at.

The PAS are sympathetic and helpful. You can leave a message/ask a question and they will get back to you.

pernicious-anaemia-society.... Head office: 01656 769 717

useful books

Could It be B12 by Sally pacholok.

Extensive, very interesting book in my opinion

Pernicious Anaemia; The Forgotten Disease by Martyn Hooper

Living with Pernicious Anaemia by Matyn Hooper

[bigredz]

Thanks for the reply sleepybunny. Think my next course of action will be to ask my doctor for the tests you mentioned and a few others when I've finished the b12 injections. Other wise, I'll not know for sure what the problem is. My doctor didn't seem to know much about PA, so it was a good job I'd read alot before I went. He spent most of the time looking at his computer!!

[Sleepybunny]

Good luck with finding answers, bigredz,

"My doctor didn't seem to know much about PA"

Sadly that's not uncommon. As in Martyn Hooper's book "Pernicious Anaemia; The Forgotten Disease" it seems to be a disease that a lot of GPs have forgotten about or are not taught about in detail in their training.

Martyn Hooper's third book is published later this year.

The PAS website has a section for health professionals that your doctor may find helpful. Link below.

pernicious-anaemia-society....

I assumed you were in the UK.