Newly diagnosed - should there be referral to haematologist?

[Stumpyaura]

Hi all, my sister is newly diagnosed with B12 deficiency and had the antibody testing for PA which she was told was a 'weak positive' (unsure what this means)

She's been very run down for a long time and suffering extreme tiredness etc. Other symptoms: dizziness, heavy legs, irritability, confusion, brain fog. She saw the GP weeks ago who just did a full blood count test and no follow up - other than prescribing iron tablets as she was slightly anaemic. She went back two weeks ago as practically crawling and asked them to test her B12 levels - her reading was 80 (200-800)! She was injected there and then, and given 6 over two weeks and then to go on to 3 monthly.

My question is, at her GP appointment next week should she push to see a haematologist? Reasons being: extremely low initial test result, some neurological symptoms, no improvement at all yet in symptoms, discuss/explore possible causes/links to other conditions/treatment plan or it normal to be fully dealt with by the GP?

[JanD236]

If neurological problems your sisters GP should have continued with injections every other day until no further improvement as per guidelines. That could take several months. I would pursue with GP initially.

[Gambit62 Administrator]

I wouldn't push for a referral to a haematologist personally. The week positive on antibodies - IFA presumably - is what is needed for a diagnosis of PA and that is all really that the haematologist would be doing. PA isn't a blood disorder - it's consequences (can) include haematological problems - generally macrocytosis in which red blood cells are rounder and larger than normal - but this isn't present in 25% of people presenting with the B12 deficiency that is caused by PA .... and the effects of B12 include neurological symptoms.

PA is an auto-immune condition in which the body attacks the mechanism that allows your body to absorb B12 from your food and leads to B12 deficiency which is where most of the symptoms come from - some gastric problems and problems absorbing other minerals and vitamins - such as folate and iron - are more related to the auto-immune attack.

Many haematologists know next to nothing about B12 deficiency andaren't aware of most of the elements of the BCSH guidelines on diagnosis and treatment of cobalamin and folate disorders. GPs just as bad, if not worse.

onlinelibrary.wiley.com/doi...

here's link to symptoms of B12 deficiency

pernicious-anaemia-society....

if your sister has neurological symptoms then she should be asking her GP to follow the more aggressive treatment regime - loading shots 3x weekly until symptoms stop improving, followed by maintenance doses every 2 months (though even that isn't enough for many of us.

[lifegems]

Hi. I’m sorry to hear about your sister. For myself when I was first diagnosed I had a count of 50. The drs were pretty disinterested and the nurse told me my injections could stop once my b12 was back up. I had the same initial treatment as your sister but without the same urgency. In the end I decided to take matters into my own hands and now I SI. I found it a waste of time trying to sort what I needed from my Drs. I now take iron folate good multivitamin and SI b12. I’m still far from the person I was in terms of fitness and strength but it’s better than relying on a. Dr. With little interest or understanding. I did however have to have a colonoscopy and endoscopy to ensure all ok.. which it was. Good luck.

[Mandymoos8]

Hiya thank you to my sis for posting my concerns x

Lifegems can I ask how you go about self injecting should I need to consider this in the future ?

Just looking into what extra vits I could take also.

My first b12 reading was 119 and my doc said “hmm if it were me I wouldn’t want injections for the rest of my life so let’s leave it a month and see” he didnt even ask or was vaguely interested in my symptoms. Took it upon myself to get a blood test via another doc the next day and the reading was 80. and that doc acted immediately thank goodness.

Thank you for all your advice

[Cherylclaire Forum Support]

I would say that by the time you actually get to see a haematologist, it is quite likely that all they will do is measure what your sister has in her blood - which hopefully by then will be plenty of B12 !

It might sound like a weird thing to say but she has done well so far in that she has secured a positive PA result and has got a very low B12 level recognised before treatment starts, -when it can be all too late unless you deliberately deteriorate for whatever the next specialist might be.

She's also lucky in that she has such a supportive sister. Stay that way, she might need you to be there for her. Fairly often, people get worse before they improve. For some, it is a very long way back, and can be disheartening.

Gambit62 is right: unfortunately, one injection every 2 months is not always enough, and one every 3 months is not the correct frequency if there are neurological problems.

Let's hope your sister has a GP who will read the guidelines and not wait to see further proof of her condition after 3 months. I think I learnt more about vitamins in Domestic Science at school than some of the doctors, nurses or even specialists seem to have absorbed during training.

....Find one in the practice who didn't throw a sickie on vitamin day ! Luck with that.