Doctor recommendations

[vlc2]

Hello All

I know the PAS and its members have done great work in educating doctors around the country.

I'd be grateful if you could recommend a good doctor that I could see, privately if necessary, that would properly diagnose and treat B12 deficiency, IF that is what I have.

My serum B12 is 188 ng/L.

Please understand, I am not seeking more information to persuade my own GP, as I consider her a lost cause. Nor am I looking to educate myself further as I have read a great deal of useful information. I will not consider self treating at this stage. I would consider private blood tests if I felt I could take the results into the hands of a doctor who could interpret them reliably.

I would happily accept that I do not have a deficiency if that opinion came from a doctor whose opinion I trusted because their knowledge was sound. I accept that levels such as mine are inconclusive and any symptoms I have may be attributed to other problems. I am not looking to confirm a self-diagnosis at any length. I would just like to rule things out or in with a degree of confidence.

I live in Cheshire.

Thank you

[Polaris]

Therein lies one of the problem vic2. It is very difficult to find a private doctor, who will admit to giving B12 injections, and even the b12d. org site cannot recommend anyone, although they will give advice and provide B12 for injections from donations. This is also why many people have to buy B12 from Germany and self inject.

I was told by a GP that their surgery do not give injections as they were afraid of overdosing and being sued !

[vlc2 in reply to Polaris]

Thanks for replying.

There must be some doctors who have given diagnoses to members. I can't believe every member lacks a diagnosis and self-treats.

A doctor who doesn't stray from the BCSH guidance would have nothing to fear.

I am not judging self diagnosis or treatment but it is not what I am seeking.

I understand reluctance to share doctors names publicly and perhaps this happens privately instead.

Nevertheless, even if many doctors are ignorant of B12D (like your GP referring to B12 overdose), they cannot ALL be the same.

I'm not suggesting anything underhand here! Merely that, say, if I have private tests done that strongly suggest PA, that I can take them to a reputable doctor who will diagnose entirely in accordance with National Guidelines. As opposed to my GP, who is both ignorant of guidelines and reluctant to be educated too.

If subsequent blood test results did not strongly suggest PA, I would not pursue a diagnosis further, regardless of symptoms.

[Polaris in reply to vlc2]

Yes, of course, many people do have NHS GPs who recognise and treat B12 deficiency and, perhaps someone nearby can recommend one near you? I thought you were asking about private doctors.

It was not my own GP who referred to overdosing but a friend's GP daughter.....

[Polaris in reply to Polaris]

Ps. You probably know that one of the more reliable tests is the MMA urine test.

[vlc2 in reply to Polaris]

I wasn't aware that many doctors did the MMA urine test? I have been considering the PA test package from privatebloodtests but it is a huge expense and pointless without a doctor prepared to look at the results.

[Sleepybunny]

Hi,

My personal view is that unless you have a positive IFA (Intrinsic Factor antibody) test, clear evidence of macrocytosis or high homocysteine, low active b12 then it is difficult to get a diagnosis of B12 deficiency.

b12deficiency.info/b12-test...

A UK doctor who helped many people with B12 deficiency was prevented from giving B12 to his patients.

Can the PAS help you?

pernicious-anaemia-society....

01656 769 717

If you leave a message they will get back to you within a few days.

[Sleepybunny in reply to Sleepybunny]

If you are a member of the PAS you can search their section on local support groups but I don't think there are many in the UK. Perhaps a local support group close to you would have info on helpful Gps/private doctors.

There is a support group associated with this charity.

b12d.org/event

[vlc2 in reply to Sleepybunny]

I have spoken to Martyn Hooper.

I have lots of information on B12D. And I am very grateful to those who have signposted this information.

With all the best will in the world, what I need, and what I don't have....is a doctor's name, in a reachable travelling distance.

Isn't there a 'Doctor Chandy' elsewhere? I am aware he had to defend his treatments but my B12 level is already below the BCSH suggested cutoff of 200. I don't think I'm an especially difficult case to justify, especially if further tests (active b12 etc) point to the same conclusion.

[vlc2 in reply to Sleepybunny]

To be fair: if i get tested and I don't have a positive IFA (Intrinsic Factor antibody) test, clear evidence of macrocytosis or high homocysteine, high active b12

then I will drop the whole thing and I will not be seeking to get a diagnosis of B12 deficiency!

I don't mind abiding by the recommended standards of diagnosis. I doubt I'm a special case.

[Sleepybunny in reply to Sleepybunny]

Apologies, I realised that I should have said low Active B12 (not high Active B12) in post above.

[engels in reply to Sleepybunny]

For clarification, perhaps you could edit your original post? Click on the little down arrow to the right of the "like" button and select "edit".

[vlc2]

Sorry I was unclear. My preference is definitely an NHS doctor but if I had to I would go to a private GP just to get this over and done with.

I'd prefer not to change GP practice entirely as I live rurally and this is by far the nearest. But if I had a reliable medical opinion that my GP continued to ignore I would reassess my options.

[fbirder]

You could try getting a private test for holotranscobalamin (Active B12) - bluehorizonmedicals.co.uk/P...

[n52h]

I have seen a private doctor in London (nutritional and environmental medicine) who did a number of tests (including the more sophisticated ones for b12) and identified other deficiencies as well as the b12 and iron deficiency anaemia I already knew about. Some of the symptoms would have been overlapping with B12 deficiency symptoms.

Prior to seeing her I was self treating with huge doses of sublinguals as well as the few injections I was getting through my GP but was still very symptomatic long before an injection was due. She wrote to my new GP ( I changed as the previous one was terrible) and as a consequence the better GP surgery taught me to self inject and also increased my injections.

I self inject much more frequently (additional stocks from Germany), which means I no longer need the sublinguals. I had been reluctant to self inject prior to checking what else might be going on and I'm glad I did as it means that the other deficiencies (and the root of them) are being treated also. It is quite a regime of supplements and diet/lifestyle changes.

Most of these doctors have waiting lists (5-6 months in this case) and the whole regime is not cheap. However for me it is working and it was such a relief to find a doctor so knowledgeable about nutrition and what might be causing my multiple malabsorption.

I don't know how to send a private message but if you can work out how to send one to me I'll give you the doctor details if you'd like them.

[deniseinmilden]

There is a "good doctors list" available to members on the Facebook Pernicious Anaemia / B12 deficiency support group. For some reason my new phone won't let me post the link to it but you can find it in my past posts if you need to.

Your result definitely shows low B12 and it suggests to me that you need treatment, especially if you have symptoms. Not everyone who is B12d ever tests positive for PA. I suggest you don't rule out treatment just because you can't get a medic to confirm a diagnosis: the treatment is safe whereas not treating is harmful and eventually deadly.

Good luck in your quest.

[Sleepybunny]

"Not everyone who is B12d ever tests positive for PA"

I agree with denisemilden. I have never tested positive but am highly symptomatic.

Recent documents suggest symptomatic patients should be treated even if results are negative/normal range. I wasted a lot of money on getting private blood tests and then found that the results were probably not reliable because I was already taking B12.

b12deficiency.info/b12-test...

active-b12.com/frequently-a...

bmj.com/content/349/bmj.g5226

ukneqas-haematinics.org.uk/...

BCSH cobalamin and Folate Guidelines

"I am not seeking more information to persuade my own GP, as I consider her a lost cause. "

The problem as I see it with not getting an NHS diagnosis is that in my case I am faced with self treating for the rest of my life and the expense that that entails.

Can you see another GP? You might be lucky and find one who has read the "BCSH Cobalamin Guidelines"