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.
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.
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.
For lots of information on getting more frequent treatments see replies from Sleepybunny
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
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
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.
"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 +44 (0)1656 769717 answerphone
PAS support groups in UK
pernicious-anaemia-society....
B12 Deficiency Info website
UK B12 Blogs
May be relevant stories on these blogs.
Martyn Hooper's blog about PA
B12 Deficiency 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.
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
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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!