B12 specialist?: Hello, Can anyone... - Pernicious Anaemi...

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B12 specialist?

NuttyJam
NuttyJam
51 Replies

Hello,

Can anyone recommend a B12 expert at all? Obviously there are some out there, but I can’t find details of anyone online at all.

Sue

51 Replies
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Nackapan

No I can't either. Do they exist??

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NuttyJam
NuttyJam
in reply to Nackapan

Besides Dr Chandy I am beginning to wonder

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Nackapan
Nackapan
in reply to NuttyJam

The neurologist I last saw has b12 defiency. Despite this and as his was caught in time and b12 injections cured him. He simply said oh well if your treatment was delayed damage could occur. Great!

Lucky him.

Still no actual diagnosis as to what damage/ my symptoms mean and how to help.

However an improvement on last one who thought I was poisening myself with too many injections on the Nhs. Fortunately he didnt put that on letter to Gp.

So it's finding someone with a 'special interest. ??? How I'm not sure

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NuttyJam
NuttyJam
in reply to Nackapan

They must be out there. I’m considering trying an M.E. clinic. My friend went when he was diagnosed with ME and he’s had a great recovery (his ME wasn’t due to B12)

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Fl17
Fl17
in reply to Nackapan

lol

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fbirder

I don't believe there are any.

The doctors I've seen who knew the most about B12 were the gastroenterologist who first diagnosed me, the neurologist who told me that my neuropathy wasn't B12 related and my GP (but only after he'd read Martyn Hoopers book that I gave him).

The person I've seen who knew the least about it was a haematologist who told me I didn't have PA because I hadn't had an Intrinsic Factor antibody test (not that the test was negative - that I'd not had one done).

You might find some doctors who advertise themselves as experts on the interwebs - they aren't.

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NuttyJam
NuttyJam
in reply to fbirder

Oh noooooo. If we weren’t all so tired we could become drs ourselves

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fbirder
fbirder
in reply to NuttyJam

I'm afraid we are all experts because we've spent years studying one little bit of medicine that doctors spend one wet wednesday afternoon studying. And they have to study PA on the same afternoon as other vitamin deficiencies with much cooler names - scurvy, beri-beri, pellagra.

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cquadros
cquadros
in reply to fbirder

I'm a doctor and I agree with you!

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Sleepybunny
Sleepybunny
in reply to fbirder

I got far further working out what was wrong with me by myself, than with any specialist or GP I saw including multiple neurologists.

I am not aware of any doctors with a specialism in b12 deficiency in the UK.

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NuttyJam

So frustrating!!!

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Sleepybunny

Hi,

Personally I'd be wary about ME clinics although probably fine if you've had a recommendation from someone close to you who's been a patient.

In parts of UK, ME/CFS/Fibromyalgia is treated more as a mental health condition and people sometimes get pushed down the mental health route .

Once I got labelled with ME/CFS all efforts to find a physical cause of my problems stopped.

Luckily I was very persistent or desperate or both and made a polite nuisance of myself. If I had accepted a diagnosis of ME/CFS I would had deteriorated into dementia and spinal damage.

My GPs at the time were quite happy that they had stuck a neat diagnostic label on me, ticked their boxes etc and weren't happy that I was still asking for further tests and referrals.

Blog post from Martyn Hooper's PA blog about ME/CFS

martynhooper.com/2018/02/10...

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NuttyJam

That’s exactly what these guys don’t do. My friend had 9 months treatment on the NHS telling him it was MH. These guys looked at nutrition, intolerances, bloods etc. to find the cause for him and they did find it. They list B12 as something they look at but I wand a further chat with them to find out their stance on B12 before I commit to anything.

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Colorado76

I was just told by my GP yesterday that I can't have PA because my B12 is normal. She didn't even address my concerns with my high MCV, not one word. And in all fairness, I may not have PA, but for her to just give me the brush off and not even look at the fact that there is SOMETHING causing my abnormal MCV is just so disheartening and upsetting. And this is after having MANY symptoms for the past 4 years, with the most recent being tingling in arms and legs. Again, she didn't affrey that either.

Obviously I need a new Dr and that's a whole other headache to try and find a good Dr who understands anything about B12 defeciency.

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Sleepybunny

You could consider joining PAS; they have some members in other countries as well as UK. They may be able to pass on useful info.

Have you considered writing a brief letter to your GP that expresses your concerns?

I feel it's harder to ignore a letter.

Letters to GPs about B12 deficiency (mainly UK info)

b12deficiency.info/b12-writ...

You may not have PA but I can tell you from personal experience that it is possible to have severe b12 deficiency with an in range B12 result.

Has your GP heard of Functional B12 Deficiency; where there is plenty of b12 in the blood but it's not getting to where it's needed in the cells?

ncbi.nlm.nih.gov/pubmed/191...

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

Blog post about how PAS can support PAS members seeking PA diagnosis

martynhooper.com/2017/06/24...

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Colorado76

Thank you so much for all that info! It's funny you mentioned about a letter; she called me to inform me that my blood work all came back 'normal', so I went online to look at my blood work for myself, then took my blood work to my thyroid specialist who saw the high MCV, knew it was B12 defeciency and started treating me immediately.

I decided to to write my GP an email through a messaging system that goes to her office. In a nutshell, I said my MCV has been above normal range since 2015 and that is would seem to indicate a B12 defeciency, and that would explain my symptoms (which align perfectly with low B12) for these past years.

I attached 3 articles for her that people have so kindly shared with me from this forum. One about how often low B12 is misdiagnosed, and another about how you can have b12 defeciency even with normal blood serum levels. She said that I can take my concerns to a hematologist. Lol. Ok then, thanks!! So she doesn't believe it's low b12 and doesn't care to investigate it further. I'm sure many people here have the same story.

So sad... Just a simple shot of a vitamin were lacking can change our life. It's not even a super rare expensive drug we require, it's a VITAMIN! My insurance company won't even cover it. So many backward things. I'm just so grateful I found this site and so many wonderful, generous people! And finally I realize, I'm not crazy!

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Sleepybunny

Link about "What to do next" if B12 deficiency suspected

b12deficiency.info/what-to-...

Some info in above link may be UK specific.

Other B12 websites

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

B12d.org holds support meetings near Durham, UK

b12d.org/event

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

For anyone reading this thread who's in UK.; read articles below

UK B12 documents

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines process for diagnosing PA and Antibody Negative PA in UK

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

BNF

bnf.nice.org.uk/drug/hydrox...

BNF guidance on treating b12 deficiency changed recently.

pernicious-anaemia-society....

BNF Children

bnfc.nice.org.uk/drug/hydro...

NICE CKS

cks.nice.org.uk/anaemia-b12...

UK B12 Blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book does not show updated BNF info.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

Below are mainly UK links so units and reference ranges for blood tests may be different if you're in another country.

Blood tests

b12deficiency.info/b12-test...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

High MCV can be caused by folate deficiency, B12 deficiency, a mixture of both and other causes.

Folate Deficiency

patient.info/doctor/folate-...

Iron Studies

labtestsonline.org.uk/tests...

I am not medically trained.

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Colorado76

Thank you sleepybunny!

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NuttyJam
NuttyJam
in reply to Colorado76

Exact same story here. So frustrating.

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Colorado76
Colorado76
in reply to NuttyJam

😕 unbelievably so

1 like
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NuttyJam
NuttyJam
in reply to Colorado76

I wouldn’t mind if they were looking into what it might be but they just kept dismissing the issues as if they don’t matter

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Fl17

Sorry, don't know of any.

Drs Mindi Pelz, Pompa, Berg, Axe, may have info on gut, absorption, as well as B12 info.

Fasting, even intermittent, may help with certain issues, check with your qualified Dr. Of course.

You may want to look into autophagy. Also, Snake Diet's Cole R. does discuss some science in his ' discussions' lol ..

Best Wishes

..

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CyclingDog

My endocrinologist (I have hyperthyroidism) said that haematologists are specialists in B12. Other than his expertise in one field and being a clinician - a good one at that - I have no way of verifying that.

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NuttyJam
NuttyJam
in reply to CyclingDog

My Haematologist is definitely not an expert in B12 in any way. Her repeat response to me is ‘but you aren’t deficient as your levels were fine’ although I’ve told her repeatedly that I was on oral supplements at the time. She also pretty much told me that although my MCV is high it isn’t high enough for the GP to have sent me to see her (despite my awful symptoms).

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Colorado76
Colorado76
in reply to NuttyJam

That's just insane! What was your MCV, if you don't mind me asking?

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NuttyJam
NuttyJam
in reply to Colorado76

101

1 like
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Colorado76
Colorado76
in reply to NuttyJam

Mine has been 101-102 for 2 years and I honestly don't know if my GP didn't even see it, or saw it but thought I'd wasn't that big of a deal! Meanwhile my life is falling apart, can hardly get out of bed some days and tingling started in arms and legs. Its astounding how incompetent these "Drs" are 😕

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NuttyJam
NuttyJam
in reply to Colorado76

Yup they keep saying ‘it’s not very high’. I’ve just got restless legs for the first time. It’s awful.

1 like
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Colorado76
Colorado76
in reply to NuttyJam

So sorry about that! Keep fighting 😊

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NuttyJam
NuttyJam
in reply to Colorado76

I was prescribed betahistine for vertigo and that might have triggered it. I’ve never felt more of a mess.

1 like
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Colorado76
Colorado76
in reply to NuttyJam

So sorry, that's awful!

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jamjar67

There is a Functional Medical GP in Leeds called DR Aisla Care she writes a lot about B12 and seems very passionate about what she does...she has a fb page - I haven’t been to her but am considering going.

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NuttyJam
NuttyJam
in reply to jamjar67

Interesting! I’ll look her up. Not near me but I do have family in Leeds, so not impossible

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pitney

I think if you found one we would all love to know :)

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Leils

This is obviously part of the problem.

Aren't there some haematologists at Guys and St Thomas with B12 background?

There is a medical researcher called Nithya Sukumar who wrote the 2019 paper in the BMJ about B12 deficiency but is a lecturer not a doctor.

The most detailed work I saw was by an American haematologist in Blood journal.

It shows how woefully lacking the UK is on this subject. The Netherlands has it's own Institute of B12!

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NuttyJam
NuttyJam
in reply to Leils

Oh it’s so dire. 🤦‍♀️

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Heidiv

There is a "B12-kliniek" in the Netherlands, Amsterdam. The specialist is a haematologist, dr. Auwerda. He started this clinic because as he was working for a hospital he noticed there were many patients coming in with symptoms of B12-deficiency, but who were never tested for it. He does Skype-consultations, but not sure how it would work with the bloodwork/B12 ampoules he prescribes. I had bloodwork with borderline (220) serum vit. B12, but based on my long list of symptoms over many years, he decided to treat me. It's been less than 4 months now, so still early days, especially with the damage done over 20 years. He told me about 50% of his patients respond immediately, the other part (usually those who have had symptoms for a longer time) don't and often get worse before getting better (I belong to this category). But I'm glad it was caught because I was going downhill so fast since a stressful move to a tropical climate (Singapore).

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NuttyJam
NuttyJam
in reply to Heidiv

Interesting!

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AVB773
AVB773
in reply to Heidiv

Does he do high dosage treatment? Just curious how his protocol may differ. Thanks :)

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robert1957

Please research Methylcobalamin and adenosylcobalamin

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NuttyJam
NuttyJam
in reply to robert1957

May I ask why?

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fbirder
fbirder
in reply to robert1957

I have done. b12science.com/B12Science/D...

Even more importantly, so have these three doctors - ncbi.nlm.nih.gov/pmc/articl...

"We conclude that supplementing MeCbl or AdoCbl is unlikely to be advantageous compared to CNCbl. On the other hand, there are obvious advantages of high parenteral doses (1–2 mg) of HOCbl in treating inborn errors of Cbl metabolism."

There is a massive amount of rubbish written on the interwebs about methylcobalamin.

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robert1957

Proper B12

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NuttyJam
NuttyJam
in reply to robert1957

For oral supplements or injections

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robert1957
robert1957
in reply to NuttyJam

Oral

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robert1957

Please research celery juice it will increase your hydrochloride acid in your stomach and improve your b12 absorption

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NuttyJam
NuttyJam
in reply to robert1957

Thanks good tip. I hate celery but I’ll try it nevertheless

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fbirder
fbirder
in reply to robert1957

Nonsense.

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robert1957
robert1957
in reply to fbirder

Lol

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Zebra20

The celery juice treatment has been debunked.

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