GP is insisting I see a Haematologist as not improving on B12 injections. Any recommendations for Yorkshire?

[Rett713]

Hi, having decided no point in seeing a haematologist, my GP has now insisted that I do get referred to one as I'm now on my 10th loading injection (Have PA) and have seen no improve in any of my symptoms including neurological and they are worried I'll overdose on B12 (now rpinting out tommnes of research for her/info as obviously not well informed). They also want to do a serum B12 blood test whilst still on loading injections! Also my serum B12 has always been 400-500 before and after I was taking oral supplements so I'm one of those people whose antibodies must give a higher B12 reading, as if you go my the blood test range I'm 'normal'.

I also have hypothyroidism (seeing nice endo, though bloods look good) and having stomach problems so seeing a gastro next week. Also have low ferritin.

Anyone have any experience of seeing a haematologist around York, Harrogate, Leeds etc.? My edno and gastro are in Harrogate although I'm closer to York. Anyone have an opinion/experience on whether it's better to see everyone at same hospital or does it make no difference. It's just if I don't have an info/recommendations for Harrogate might just go to York as the travel to Harrogate is getting difficult as don't always feel well enough to drive.

Thanks

[Sleepybunny]

It took me months to see definite improvement when I started to treat myself (had tried for years to get treatment from NHS).

Perhaps you are someone who needs a different form of B12 (Cobalamin). The NHS generally uses hydroxycobalamin and sometimes cyanocobalamin. Some people respond better to methylcobalamin but I don't think injectable methylcobalamin is licensed for use in the UK. There is also adenosylcobalamin.

b12deficiency.info/b12-trea...

Link about forms of cobalamin

Some people have benefitted from B12 infusions. Are you a member of the PAS? They might be able to tell you more about B12 infusions.

pernicious-anaemia-society....

01656 769 717

[Rett713 in reply to Sleepybunny]

Hi Thanks for comments. Yeah I've just read Martyn Hoopers latest book (very good and informative) and am member of PA. They said go back to them (PAS) if no improvement after 5 weeks. Would like to keep GP on board but can't believe how ill informed they are - though they do often state they don't know rather than pretend they do and get it all wrong. They are nervous about carrying on treatment just because the practice have never done loading injections for this long before which seems odd I would have thought in a large practice someone would of had PA with neurological symptoms before or they haven't been treating it correctly. I think they want guidance from a specialist, so if the gastro or haematologist say fine carry on they wouldn't question it.

I've persuaded them to let me carry on with loading injections until 7 March and then seeing them again. Hopefully they will read all the stuff I'm sending them on B12 blood tests etc as I fear if my B12 serum level is normal they will want to stop treatment. Will self treat if so or will in anycase once I speak to PAS to see what other forms of B12 the recommend/which regime.

Off now to take them all the info and a copy of Martyn's book!

[Chocolate41]

Good luck let us know how you get on.

X

[sweetnessandlight]

I live on the Leeds/Bradford border and my gp arranged an e consultation with a haemo at Bradford. She wanted it to be a Dr Agnew who has given talks on b12d. Unfortunately being the nhs someone else picked up the referral and came to the conclusion that it is a b12 deficiency- I was diagnosed 5 years ago - so that's no revelation and that I should have the standard treatment of 3 monthly hydroxycobalamin. Took no notice of my worsening neuro symptoms and macrocytosis. So I haven't a lot of confidence in haematologist. Hope you have better outcome!

[Rett713 in reply to sweetnessandlight]

If I do get better results I'll post on here. I'm not holding my breath though. Just hoping the gastro I'm seeing next week is good and might be able to help. I basically think if any consultant told my GP what to do give more injections or stop they would do it. They just don't have a clue and what to be told what to do rather than look at any of the research together with my symptoms etc. and make up their own mind. So looks like I'm now in the hands of a gastro or haematologist whoever gets back to GP first.

[hendry]

Try not to despair. It took me ages before I began to see any improvement. I started on methylcobalamin and it did nothing forme. However the minute I commenced Hydroxycobalamin injections I felt a difference. It still took probably at least a year before I really started to think there was nothing really wrong with me. I still have injections around every 10 days and this keeps me well. I also believe that giving up gluten and probably latterly milk have helped. All this despite the fact that I never had any gastric symptoms mine were neurological and breathlessness.

Hope this helps

[Rett713]

Thanks for post. I've had 12 Hydroxycobalamin injections now and absolutely no difference, have got to give it another week before I call the PA society again. I just thought the fatigue might have improved by now if nothing else. Just worried GP is going to stop injections altogether as they haven't made a difference yet. They ignored everything I told them/sent them re alternative blood tests and have ordered just a B12 Serum one again.