Can anyone recommend a good haematologist?

[LMF1]

Hello everyone,

My GP has agreed to refer me onto a haematologist but I need to identify one who understands the serum chemistry of B12 - could anyone make a recommendation? I am prepared to travel anywhere in the UK for the right treatment, as I could waste more time and resources with the wrong specialist and get nowhere than I expend on travel to the right one. I live in northern England but can travel anywhere.

SHORT SUMMARY OF THE BACKGROUND:

I suffered a wide range of symptoms back in 2010 which my GP could not ascribe to anything. As I am a PhD scientist, it comes naturally to me to research things on the web and I self-diagnosed as B12 deficient. I do try to be dispassionate about things but could not help becoming excited at reading about brain fogs, which I recognised so clearly but hadn't even complained to my GP about, as I thought it was just premature ageing and slightly embarrassing for a person who had been considered intellectually very sharp! Also, on subsequent discussion with my parents, I discovered that 2 grandparents and 1 great grandparent had pernicious anaemia.

In 2010, my B12 serum level was at the low end of the reference range but within range, so my GP said he couldn't prescribe any treatment. I self administered methylcobalamin sublingually (1000 mcg daily) which worked very well indeed. I have no doubt that the methylcobalamin addressed my symptoms. It even addressed symptoms that I had not identified as symptoms. I hope that makes sense - I had deteriorated subtly in so many ways that I didn't even realise.

I had a follow up test in 2012, out of scientific curiosity as much as anything else. I find it very poor scientific practice to self-administer a substance and not monitor the level in the bloodstream. This test showed a B12 serum level above the measurement range of the test. I reduced my B12 intake to 2-3 doses per week and my level dropped to the high end of the reference range after 3-4 months.

I had another B12 test in August 2014 which again showed the level to be above the measurement range of the test. At this point, the GP instructed me to take no further B12 supplements. I was happy to do this until I felt any effect.

In April this year, I asked for a re-test as my health was bad but in different ways to those experienced in 2010. The one symptom that is shared between now and 2010 is ringing in my ears, which is constant. The B12 level was again over the measurement limit. The current GP seems quite panicy about it, as there is lots of literature about elevated B12 being related to cancer or liver disease etc. We have done basic tests which appear to preclude these.

I have held off from taking any B12 as I would like to have a full range of meaningful tests run at this point to fully understand "What the hell is going on", as D Trump might say. However, trying to get this current GP to rationally discuss tests for MMA or homocysteine is impossible. I have persuaded him that as he feels out of his depth, I should be referred to a haematologist. He has written twice to the local haematology consultant but I have the feeling they know less than I do based upon the replies. This is why I would like to know of any consultants that understand B12 and pernicious anaemia in depth. As a scientist, I'd love to understand what is happening in my blood - my instinct tells me it is some form of immune reaction and that I cannot get adequate B12 despite the high serum levels. There is also a slight chance I have a serious condition such as cancer or liver or kidney damage.

I have 2 job interviews coming up in the next few weeks for intellectually demanding, senior jobs. I fluffed in a recent interview for another role and partially blame this on brain fog. I may be tempted to load up with B12 before these interviews and ruin my scientific study of blood serum levels in a person who has not taken supplements for nearly 2 years!

I will use a pseudonym as it could be very difficult for me if an employer (or prospective one) thought I had brain fog, as I am employed for my brain power!

Best wishes

Max

[jillc39]

when my gp agreed I could see a haematologist I telephoned 7 different secretaries to ask if the haematologist had a special interest in b12 deficiency and PA - NO came the seven replies. my daughter eventually found one on the web and we travelled quite a distance to see him privately. it was worth the work we put into it.

[Withattitude]

Hello there. Yes, I'd be frustrated if I were you. I think many of us are.

I recently read a paper published 4September 2014, in the BMJ about Vit b12 deficiency. I've pm'd you the name of the consultant on the paper.

[wedgewood]

First of all , it will be very difficult to find an haematologist with any good knowledge of B12 deficiency . The pharmaceutical companies are not interested in it -----there is no money in it ---A vitamin can't be patented. There is very little research done on it.

Secondly do not worry about overdosing on B12 . I have seen 2 scientific reports that state that B12 is not toxic in the slightest even with huge doses . One is a Dutch Health Service report and the other was an E.U. Report. I cannot find the references for you but fbirder has them . If you have grandparents who have had Pernicious Anaemia , then it is possible that you do too. . The best treatment for P.A. Is B12 injections

Your symptoms do point to P.A. You can have a B12 serum blood test for antibodies to the Intrinsic Factor which proves P.A. Unfortunately it is only about 50% accurate . The antibodies don't always show up. I suggest you read the books that our chairman Martyn Hooper has written or a book called Could it be B12? by Sally Pacholok (all at Amazon )

I have read that if you do have P.A. Your levels need to be at least 1,000 thingies to keep symptoms at bay .

You will glean a lot of knowledge from reading comments on this site We have all had to try to find our way through the quagmire of the symptoms of P.A. It is no doubt a very complicated subject . We are all different , and require different amounts of B12 to keep well. For example I hear of PA patients who find sub-lingual Lozenges and nasal sprays helpful. Buy they did absolutely nothing for me at all. I inject weekly to keep well, Others inject daily . Some people find once every 3 months adequate ( All one is able to get from a G.P.) . I think that it might have something to do with how long one has had the condition before it was treated , but I don't really know. You might have to treat yourself.

I do wish you all the best in your quest for good health.

[fbirder]

Some time ago somebody posted about high levels of B12 being associated with various cancers. I did some research, looking at the actual papers themselves, rather than abstracts or titles.

It turned out that there was a correlation in some cancers. However, correlation does not mean cause. Sure enough, the conclusion in one paper was pretty emphatic in suggesting that it was the cancer that caused the high B12 and not the other way around.