Advice on diagnosis please

[poppym09]

Hi, I'm having monthly b12 jabs with Hydroxocobalamin but as yet don't have a PA diagnosis. I'm diagnosed with ME/CFS and saw a huge improvement in energy levels over time with the jabs as well feelings of depression and terrible brain fog. So that was all good. The b12 was prescribed by a neurologist I saw privately, and my GP was happy to follow his advice. I don't see the neuro anymore (it was just a one off appt and way too expensive to continue seeing). His advice was weekly jabs for 6 months and monthly jabs (1mg in 1ml ) for a further 6 months then stop. So these should have ended a while back but the surgery hasn't realised this and so a bit sneakily, I continue with them! So I've never had b12 levels checked and never had IF checked either. My mum had PA, so there is a strong genetic link, but now a b12 test would be pointless I suppose, and also the IF can't be tested accurately after supplementation? Is that right? So how would I go about getting a definitive diagnosis now? Also I've never had folic levels checked and don't supplement...

[fbirder]

The current situation seems ideal - and certainly much better than what may possibly happen. Let's examine some scenarios -

You carry on and 'forget' to mention it to the surgery. You get treatment that seems to be working. When they spot the error then you can ask for an IFAB test.

You have the IFAB test and it shows positive. You now have a definitive diagnosis of PA. The doc may continue of your present regimen or may switch you to that described for PA - one jab every three months.

You have the IFAB test and it shows negative. You may have PA, you may not. But the doc may interpret the result as 'not' and stop your jabs completely.

As for the folic acid - I would take 400ug a day. It's highly unlikely to do any harm and may do some good.

[clivealive Forum Support]

Hi poppym09 am I to understand that the neurologist advised B12 injections for your ME/CFS and its symptoms or had you been diagnosed with B12 Deficiency?

I'm interested because my 40 year old stepdaughter Zoe has had ME/CFS since she was a teenager and she really struggles sometimes coping with two children under six. I have in the past suggested she get her B12 levels checked but she has omitted to do so.

I would welcome any advice you may be able to give as to the effects B12 has had on you.

[wedgewood]

Just my personal experience , but 2 years ago I had been supplementing like mad with sub linguals and patches as I was desperate. I was then diagnosed with PA in spite of sky - high B12 levels ( positive to Intrinsic Factor antibodies. ) I don't know if it was a particular test . I was truly covered in the patches when I was tested . But they didn't help me one scrap . Blue horizon do tests ,and you can go to Nuffield hospital Z and consult a GP privately , and he/she will do a test for you .

[poppym09]

Hi, thanks so much for the replies.

Fbirder, yes those were my thoughts, that it may be best to stay without a formal diagnosis and continue as I am....If they ever stop the b12 I can self medicate with a bought supply.I was a bit worried that to supplement with the folic acid maybe harmful if not needed, but will now go ahead with a 400g dose daily.

Clivealive, no I've never been tested or diagnosed with b12 deficiency, just the ME. I Put off starting the jabs for a few months after it was suggested, as I really didn't like the sound of a jab....and took a b12 supplement until I was told it was not so bioavailable like that. It really has helped with stamina, brain fog etc.

[Sleepybunny]

I suspect a lot of people who are diagnosed with ME/CFS are suffering PA or another cause of b12 deficiency.

b12deficiency.info/misdiagn...

pernicious-anaemia-society....

martynhooper.com/2015/08/04...

[poppym09 in reply to Sleepybunny]

Yes Sleepybunny, that's what I thought, but the GP's and specialist teams just don't bother to check for it. It would have saved me years of illness!! Will read the articles you've linked to, thank you.