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[PoDundee]

I am getting the opportunity to put a question to the Scottish health minister next week. I want to raise the issue of the dangerously low levels of normal B12 set in the UK. Can anyone post me some references which show research that clearly shows these levels are dangerously low, and should be raised considerably please? That would be really helpful.

Thanks.

Pauline

[Gambit62 Administrator]

Not sure that the problem is really the 'normal' as that is just coming out of statistics so much as GPs being aware of the fact that the stats really need interpretation in light of clinical results.

Following may be of use

BCSH guidelines - summary

bcshguidelines.com/document...

UKNEQAS alert on importance of looking at clinical presentation

ukneqas-haematinics.org.uk/...

There are similar problems with a lot of other conditions though the level of variation on how people respond to B12 does seem to make it one of the worst.

You might also want to look at/refer to guidance used elsewhere in the world - eg in Japan they tend to start treating at much higher levels than the UK based on treatments.

In the US where litigation culture is so prevalent most labs actually have a quote on need to refer to clinical presentation and I actually think that suggesting this might be a more successful tack to take.

Wish you all the best though

[Sleepybunny]

I heard someone in Scotland put a petition before the Scottish Government about B12.

Hopefully teh Scottish health minister will be aware of this petition.

See links below.

scottish.parliament.uk/Gett...

himsps.org.uk/2012/03/speec...

[PoDundee in reply to Sleepybunny]

Thanks for that.

[Ajay999 in reply to Sleepybunny]

Thank you so much for this information - really helpful for me.

[Ajay999]

Hi PoDundee,

Good luck with your time with the Scottish Health Minister - hope you get some good engadgement on the subject.

I also live in Scotland (Ayrshire) and would love to ask...

- Why are Haemotologist (and GPs) refusing to follow the British Journal of Haematology guidelines (I.e clinical picture is the most important factor in diagnosing patients).

- Why do Haemotologist believe that if your B12 in your blood is "normal" (200+) then you are not b12 deficient despite research proving this to be untrue. Ironically it also states that this is untrue on the NHS website (ref Functional B12 deficiency).

I wouldn't want to hijack your questions however if you can ask these questions I would be really interested to hear their views.

Hope all goes well and would love to hear their feedback on why there is a lack of understanding on this subject.

Regards

[PoDundee in reply to Ajay999]

I am happy to take any suggestions. And references. Thanks

[Ajay999 in reply to PoDundee]

Hi - Thanks for the feedback and sorry to "hijack" your thread however I think the following is really important as it might help you to explain this crazy situation that we are all in as it is a real live example that I'm living and breathing every day. Might be also worth sharing it with the Health Minister.

I will of course supply any further info, if required - please pm me if you want to discuss further.

Gambit62 has referenced the latest Guidelines issued from the British Committee for Standards in Haematology (BCSH) as follows;

healthunlocked.com/api/redi...

These form the update in the British Journal of Haematology (vol 166 issue 4 pages 496-513) which is also referenced here;

onlinelibrary.wiley.com/doi...

(I also have the Pages in PDF should you require a copy)

The NHS website (to functional B12 deficiency) is here;

nhs.uk/Conditions/Anaemia-v...

So latest guidelines state that the clinical picture is the most important factor for diagnosis and also comments that the tests are unreliable. The NHS (web site) recognises that you can experience problems relating to B12 deficiency despite having "normal" b12 levels.

My Grandfather and Father had PA and my father had b12 shots for 25 years. I have presented x16 symptoms to my GP over the last 12 months, all of which can be directly linked to B12 deficiency. I have been for about 14 appointments, 4 different tests (colonscopy / ECG etc.) and all have been ok. I have also tested positive for GPC antibodies. I have tested my DNA privately and I have gene mutations in the Methylation Cycle which have been proved to cause cobalamin deficiency. I have repeatedly requested to see a "specialist" however the response I have from a Haematologist, that has never seen me, and I quote is;

"I do not think Mr x needs further investigation at the present time. The bottom line is that he has a normal blood count and b12 level (400) and certainly does not require intramuscular Hydroxycobalamin at the present time". I have this in writting should you wish a copy of this.

So at ground level the GP's and "specialists" are ill informed and contradicting not only their employers but their governing bodies as well.

Meanwhile, we are all confused, suffering and begging to get a shot of B12 just to keep us from deteriorating further - Oh and at the same time holding down a professional job and paying taxes to pay for the people that are denying us treatment - you couldn't make it up and it is 2016 isn't it ?

Good luck and hope all goes well - if you need any further info. from me I would be delighted to supply it ahead of your meeting.

Best Regards

A.

[Sleepybunny]

Hi Podundee,

Perhaps Martyn Hooper of the PAS would have some good advice for you.

pernicious-anaemia-society....

01656 769 717

Office open between 8am and 2pm

martynhooper.com/

[Allyson1]

If no one has mentioned b12deficiency.info, this site has lots of information and does a great job of framing the discussion.

Then there is Sally Pacholok's b12awareness.org and Dr. Chandy's b12d.org.

My two big concerns are:

1) doctors are generally quite unaware of the signs and symptoms of b12d, so they miss the diagnosis in its early, most treatable stages. Meanwhile patients suffer from incorrect interventions.

2) Patients have to haggle and beg for what is actually a very cheap injection. Why are doctors so stingy?

Best of luck!

[Poppyfields65]

There a YouTube video called "Diagnosing and Treating Vitamin B12 Deficiency. " (Sorry I haven't been able to copy the link in.)

Maybe you have seen it. It gives alot of information on how doctors routinely mis read blood count results due to the high folic acid in our diets in the modern world and how this can disguise b12 deficiency in results. I realise it is an American video but I'm sure it's the same everywhere. If you haven't seen it I think it would be worthwhile.

Also the new active b12 test only costs about 12 pounds, why is this not routinely done?