Pernicious anaemia and vitamin B12 deficiency debate

[editfmrt]

Don't know if this video about B12 deficiency has been posted before but it might be easier to listen than to read the many papers on this.

news.bbc.co.uk/democracyliv...

It is dated March 2012 and things have moved on but useful all the same as so many thyroid people seem to suffer from B12 deficiency or have trouble getting GPs to acknowledge it let alone treat this.

If only we could petition in the same way about the poor thyroid diagnostic tests and poor treatment......

[Hidden]

Hello Edit,

Many thanks for posting this. It's very interesting and I know will be of interest to a friend of mine. I heard the words "availability at cellular level" being used, and as you say this has much resonance with thyroid issues.

We did look earlier in the year into having a similar petition regarding thyroid function raised in Scotland, and I think had difficulty finding someone to put it forward. However, it is a very good idea and maybe something we have to look at again.

I hope that you and your sister are OK - you know what I mean I'm sure - when your life is governed by thyroid issues everything is relative.

Best wishes

Jane x

[editfmrt in reply to Hidden]

Thanks Jane. I wish I was more in a position to help petitioning etc but if I'm honest it really isn't an option yet until things are more stable with my sister. I'm looking forward to the time when I can hopefully contribute more and I'm storing stuff for when that day comes.

Although there are definitely signs of improvement it is still a roller coaster. As soon as I think YAY, I can't wait to post this good news, something happens to send it crashing down. If I posted chronologically you would all think I had Jekyll and Hyde Syndrome. Much more positive than this time last year though.

Thanks for asking it is so nice of you to remember us when you have such a dreadful situation yourself. If only the same solution worked for all of us.

Warmest regards xx

[Hidden in reply to editfmrt]

You're already doing the most important job of all. x x x

[helvella Administrator]

The GP MSP went on about seeing patients who had pernicious anaemia but nonetheless had adequate B12 in a blood test - and hence the hope for the active B12 test. But we keep see people with symptoms failing even to be allowed a test - even when pointed out to the GP.

Thanks for posting.

[shaws Administrator]

It was a good and informative video. As he says it is only available in England in Guys/St Thomas'.

I was advised by the PA society and asked my G.P for a referral which he denied as he'only uses serum'. I now have a copy of the Active B details for him so we will see what he says when I next see him. I have Pernicious Anaemia diagnosed before any symptoms occurred.

[NaamiSue]

......and of course there is autoimmune B12 deficiency.......it was suggested that this is what I have by the lead consultant of nuclear medicine at Kings College Hospital....sadly it was not mentioned in the follow up letter........

if PA is not being recognised and treated adequately good help those AI B12 deficiency or anything less!

When I pointed out to my GP at the beginning of this year that left without B12 shots for another 2/3 years I was certain I would have full blown dementia, he was not a happy bunny! I find it incredible that they only want information on their NICE QED terms........

Rant over LOL!

[siskin]

The problem Is e gov petitions need 100,000 sigs.

[Hidden in reply to siskin]

It's different in the Scottish Parliament apparently.

Jane x