Pernicious Anaemia Society
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Intrinsic factor antibodies

So my Intrinsic Factor Antibodies test has come back as a 1. I believe this is normal or "negative". So no enlarged RBC, B12 at 402 in January and now this. Feeling just as bad...terrible neuropathy and neuralgia today. I just know that this will be one more weapon the GP will add to his belief that I am a middle aged hypochondriac. I really don't know where to turn now. Does anyone know of a haematologist or neurologist in the UK that has LISTENED to them and that they have actually got anywhere with? I'm not able to work ( self employed too ) or drive or function properly. I feel so desperate now :(

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I'm saddened to read you are feeling so down Jesswoozer1

Are you a member of The Pernicious Anaemia Society? They may be able to offer you advice and help. It costs £20.00 for a year's membership.

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Yes...joined recently :)

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What is it that makes you think that your symptoms are caused by a B12 deficiency? There are are a lot of possible causes of peripheral neuropathy, B12 being just one.

You could always ask your doctor to give you a trial run of B12 injections. If they make you feel better then you'll be happy, he'll be happy (because you won't be 'wasting' his time any more) - everybody wins.

If they don't make you feel better then you promise never to mention it again. He wins this way as well. You're still no further along to finding the problem, but you'll have ruled out B12 and can concentrate on looking for the real cause.

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It's not just neuropathy...but I can't list all my symptoms each time I post! I have tachycadia (svts diagnosed by cardiologist) shortness of breath, pallor, dizziness , balance problems,difficulty passing urine, poor concentration, memory problems, restless legs,mood swings , depression and functional neurological disorder ( diagnosed by a neurologist) I'm unable to work or drive. I can barely function.

My Dr won't entertain the idea of B12 injections because he doesn't think I have a B12 deficiency ......that's the whole issue sadly! He won't consider a trial because I have no diagnosis! If ONLY he would.

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My feeling Jess is that the only way you are going to find out is by self injecting. The problem is even with a trial of injections from GP you often feel worse before you get better ( reversing out syndrome) . I am SI a lot of neurological symptoms improved quite dramatically but I've still extreme fatigue and other symptoms. Just riding it out at the moment. What do P A society think? You could also go on Dr Chandy B12 deficiency site and fill out calculator then speak with him

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I would agree that self-injection seems the best route.

I wouldn't bother with Dr Chandry. Do a search in this site and you'll find sensible info on how to source real B12 from Germany and needles/syringes from the UK.

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Why not Dr Chandy he has heaps of experience

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I've just written him an email... I thought he seemed very experienced too. I don't think it will hurt to get more advice. Meanwhile GP again tomorrow....hopefully a different one, for one last go, before I write to the practice manager. Thank you.

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Good 😄

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Well- he diagnosed me on my symptoms and family history alone ! about to embark on self injecting as soon as it all arrives !

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That's great Jesswoozer I'm going to the support group tomorrow 😄

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Where is your local one ? I am in West Wales. Think there is a South Wales branch....

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Hi it was in Sunderland in north east. They were lovely and I met DR Chandy 😄

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Soozysoosop I did the calculator and got 100% and still my GP doesn't believe me! I'd laugh if I didn't feel so rotten!!

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Snap!!! So so disheartening, when you least feel like a battle!

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This is exactly the problem I am having!

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AmyG- have you read Martyn Hooper's book "What you need to know about pernicious anaemia and vitamin B12 deficiency" ? It's so helpful and informative- I got mine second hand off Amazon. Helps you feel you are NOT going mad!

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Jesswoozer1 Yes I have, it was amazing! I have also spoken to him a couple of times on the phone, he's so helpful.

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Oh that's brilliant!

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Oh that's really helpful to know..thank you. I will have a look at that tomorrow. .that can be my mission! It's any straw to clutch at!

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Hi,

Have you had your calcium and parathyroid levels checked? This can also cause all of these symptoms.

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Not as far as I know...but will push for that too. Thank you !

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