Private haematologist in London - any recommendations?

[ProfessorMcGonagall]

My GP wants me to see a haematologist to do the active B12 test and see if I should be having injections more often.

Luckily my health insurance will cover the cost, so can anybody recommend a private haematologist? I’m in London.

[JanD236]

If you are already having injections I understand that both the serum and active B12 test results will be skewed. It would be far better if your GP were to treat you on symptoms instead. Hopefully someone can guide you towards some authority for this but certainly if you have any neurological symptoms you should have been offered loading doses followed by injections every other day until no further improvement in those symptoms.

Just to mention though that my active B12 level was tested by my GP. I’m in North East Surrey.

[deniseinmilden in reply to JanD236]

For lots of information on getting more frequent treatments see replies from Sleepybunny

[ProfessorMcGonagall in reply to deniseinmilden]

Thank you, I will take a look.

[ProfessorMcGonagall in reply to JanD236]

Thank you, that’s interesting - I hadn’t thought about how the results would be skewed.

My GP didn’t seem to know anything about the active test!

[toph]

Visit guy's and st. Thomas's Hospital in London where you can walk off the street and they will take the sample for you and do the test it's called viapath if you want a B12 active test done it will cost £40 I think you're lucky to be based in London because up here in Scotland you need to find a GP that is willing to take your blood and then post it down to viapath in London

[ProfessorMcGonagall in reply to toph]

That’s very helpful, thanks! And yes it does help being in London, must be much harder to deal with these things without the resources.

[Sleepybunny]

Hi,

I'm curious to know what GP thinks has caused your B12 deficiency.

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

How often are you having injections?

How many loading doses did you have when first diagnosed?

Do you have neuro symptoms?

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

1) Recommended UK B12 treatment for B12 deficiency without neuro symptoms....

6 B12 loading jabs over 2 weeks followed by a jab every 3 months

2) Recommended UK B12 treatment for B12 deficiency WITH neuro symptoms

A B12 jab every other day for as long as symptoms continue to get better then a jab every 2 months

My understanding is that in UK, a patient with neuro symptoms eg tingling, pins and needles, tremors, memory problems, balance issues, tinnitus plus other possible neuro symptoms should be on second pattern of treatment.

GP can find this info in their copy of BNF (British National Formulary) book Chapter 9 Section 1.2

See following documents for more info on UK B12 treatment.

UK B12 documents

As you're in UK, I'd suggest reading all of these documents.

BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

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

NICE CKS

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

"GP wants me to see a haematologist "

NICE CKS link above suggests that GPs should seek advice from a haematologist if patient with b12 deficiency has neuro symptoms.

B12 deficiency is not always as well understood as it could be even amongst specialists so be well prepared for any appts.

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 is up to date with UK b12 guidelines. I gave a copy to my GPs.

"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.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 in above link is about under treatment of B12 deficiency with neuro symptoms.

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and medical treatment.

hdapatientcaretrust.com/

"I hadn’t thought about how the results would be skewed"

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

b12deficiency.info/b12-test...

PAS (Pernicious Anaemia Society)

Based in Wales, UK. If you think PA is a possibility, may be worth joining and talking to PAS.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS support groups in UK

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

UK B12 Blogs

May be relevant stories on these blogs.

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

Other B12 info

Link about What to do next if B12 deficiency suspected

b12deficiency.info/what-to-...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

Folate Deficiency

patient.info/doctor/folate-...

NICE guidelines Coeliac Disease (2015 version) suggest anyone with unexplained B12, folate or iron deficiencies should be tested for Coeliac disease.

nice.org.uk/guidance/ng20/c...

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord, available to PAS members only.

pernicious-anaemia-society.... See Page 2 of articles/leaflets.

Blog post from Martyn Hooper's blog, mentions SACD

martynhooper.com/2010/09/21...

Help for GPs

1) PAS website has section for health professionals

pernicious-anaemia-society....

2) PAS leaflet "An Update for Medical Professionals: Diagnosis and Treatment " available to PAS members. Some forum members have passed this to their GPs.

pernicious-anaemia-society.... See Page 1 of articles/leaflets.

More B12 info in pinned posts on this forum.

I am not medically trained.

[AndrewWiseman in reply to Sleepybunny]

Hi, I saw a guy who seems really good, he is based in Milton Keynes. So if your in north London not too far. I was pretty impressed with him... I saw him through Bupa - so I know he is fee assured through them

Note: Edited by admin to remove name: if you wish for more details suggest that you use the 'chat' function to send a private message to AndrewWiseman

[ProfessorMcGonagall]

Sleepybunny, thank you, that is very thorough and helpful.

I was diagnosed with pernicious anaemia 30 years ago, as a child, and have had injections ever since.

I’m currently having them every 12 weeks but trying to get them more often.

It’s difficukt to treat just on symptoms as I also have lupus, a prolapse, and some hyper mobility so I have a lot of symptoms which could be caused by those issues. I’m hoping more frequent injections would help!