Hi,does anyone know of a PA specialist in Hampshire?

[Jenkinsaj]

Saw a gastroenterologist but he wasn't interested in the PA, am assuming a haematologist is probably the way to go, any advice gratefully received, thank you.

[wedgewood]

I don’t like to tell you , but I don’t believe there are any Pernicious Anaemia specialists in the whole of the U.K. We have had this question before , and nothing came of it .You would think that an Haemotologist was the obvious answer. I went to an Haemotologist , and he actually told me that Pernicious Anaemia didn’t interest him at all because it was such a simple subject .

But it was a Gastroenterologist who gave me some information that helped me . He told me that P.A. patients have low /no stomach acid ( Hypochlorhydria/Achlorhydria ) which leads to problems similar to IBS . He said there was no treatment , but I found that a liquid probiotic helped me (Symprove) unfortunately expensive . Raw organic sauerkraut is a marvellous help

also .

I hope that you get a positive answer to your question .

[Jenkinsaj in reply to wedgewood]

Thank you so much for that. I appreciate your time. That’s incredible, you’d think there would be someone who has a vested interest. The PA society has been very helpful though along with Martyn Hoopers latest book.

[wedgewood in reply to Jenkinsaj]

There is no money in PA for the “big boys” of the pharmaceutical industry . And they wield enormous power. (Read the book “ Bad Pharma” by Ben Golacre , research fellow , Oxford University .) . The only treatment for PA is a vitamin , B12 , which cannot be patented. Very little research has been done . No one has a vested interest in PA. GPs surgeries get rewarded for diagnosing certain conditions . PA is not one of them .

Yes , thank goodness that we have Martyn Hooper, and that he started this Society . At least we can help each other . I get very passioate about the treatment of P.A. So many people are suffering out there .

[Jenkinsaj in reply to wedgewood]

Thank you again, all very interesting. Having battle with GP and now very confused. MyB12 is within normal range (had been taking supplements) but was told that intrinsic factor antibodies were abnormal score of 2.1 so started B12 injections only to be told yesterday that actually it's normal not raised as previously thought by one GP (who I believe is right) little information on reference ranges for intrinsic factor. Ahh constant battles.

Many thanks, really appreciate your help.

[wedgewood in reply to Jenkinsaj]

I had an awful battle 3 years ago , when three monthly injections left me struggling . I joined PAS , and found many people with same problem . I now have to self inject . I get B12 ampoules (Hydroxocobalamin) from German online pharmacies. Needles , syringes etc from Medisave.uk — I’m now a different person ! Bear in mind that you need vitamin B9 (folic acid , folate ) alongside B12 .

[Jenkinsaj in reply to wedgewood]

You're a star wedgewood. Thank you so much. Was told yesterday don't have PA, am at the end of my tether, each Dr says something different. My B12 levels are good it was the intrinsic factor antibodies (2.1) which made one gp agree it is PA but yesterday when I went in for injection nurses refused to do it and spoke to yet another gp (been through 6 in 2 weeks!) who said as B12 normal not PA, when questioned about intrinsic factor said I think was within range, have tried to look up ranges but not helpful, one site did suggest if over 1.53 it is positive. Help I'm at a total loss. Will ring the PA society later as I believe they are open on a Saturday for nutters like me to pester them. So sorry to ask. Many thanks 🤗

[wedgewood in reply to Jenkinsaj]

I was diagnosed with PA but not by my GP . I paid for a private GP at a Nuffield hospital . So my GP then gave me the loading doses of B12 and one injection every 3 months which was not enough to keep symptoms at bay , plus o had totally numb feet which GP said were “idiopathic “ !! So self injections helped my feet . which now only burn like hell , but at least I’ve got the feeling back. Having high blood serum B12 doesn’t mean that it’s getting into your cells ! You need to find out how often you need injections by trial and error . I know someone who injects daily . I know someone who has one injection every 3 months . ( PA patients ) Were are all different . Doctors will not acknowledge this . I don’t know why . For most people who need more than the bog-standard amount . It’s a terrible struggle, which is overwhelming when you are feeling so unwell .

Best wishes and good luck 🍀🍀🍀💉💉💉

[Jenkinsaj in reply to wedgewood]

Bless you thank you so much. There's such a lack of knowledge out there, all a minefield. Good luck with the self injections, terribly that people have to do that. Take care. 🤗

[Mandymoos8 in reply to wedgewood]

Hi wedgewood I hope you don’t mind me jumping in on this convo, but do you think 200mg of folic acid is enough? Thank you 😊

[wedgewood in reply to Mandymoos8]

Personally I take a 400 mcg tablet daily . I think you have mistyped — 200 mg is a huge amount . Micrograms -mcg —- and Milligrams - mg . Unless you are severely deficient , 400 mcg is fine . You will also be getting some folate from your food - which is really superior to folic acid as you get other nutrients in vegetables and fruit . Green leafy veg , broccoli, peas , citrus fruit all good for folate which is the natural version of folic acid . Best wishes .

[Ajane]

If you pm me, I can give you the name of a sympathetic haematologist in Southampton. Not an expert but he sanctioned more frequent injections.

[wedgewood in reply to Ajane]

That’s good information. But you know that your GP is not obliged to follow advice from a consultant ? Seems awful . I only know this because of s member posting on this subject .