Hi, please can somebody post a link to the NICE guidelines for PA management.
My sisters new GP is now refusing to treat her because her levels are normal. Some nonsense about high levels being toxic! So frustrating to go through this every few years. Myself and my sister have been living with PA for nearly 20 years now.
There are no NICE guidelines. The PAS is in the process of helping get some written. I believe it's at least three years away.
Nice do link to the BNF guidelines. But they don't include the information you require.
Your best bet is to send the doctor this - stichtingb12tekort.nl/engli...
What an amazingly detailed and informative article. Drs should learn that in medical school.
There are some guidance notes but they are rather confused/confusing but they do say about no need to monitor levels once on injections
cks.nice.org.uk/topics/anae...
There are also the BCSH guidelines copy of which can be found here.
onlinelibrary.wiley.com/doi...
Oh my what is this nonsense of taking b12 tablets instead of injections as a pandemic measure???!!!! Honestly do they know ANYTHING about the condition???
I agree the advice is confused and misleading and clearly has been written ny someone with knowledge and understanding. I thought it had been recently amended? Ive just discovered the GP who backed my b12 injections has retired so goodness help me if my new GP tries to run my treatment on these "guidelines."
waveylines, please note that high dose oral can be okay for some people - before injections it was actually all that people had, in the form of eating lots of liver - much less palatable than the tablets that are now available.
Well I am truly glad it works for some. I tried and had very very high doses much higher than the nhs is recommending......even tried Methylcolabamin and tablets did not relieve my neurological symptoms even though I have not been diagnosed with PA due to negative intrinsic factor test. Topping up with high dose sublingual methyl on top of the injection does help. My worry is that doctors may think high dose colabamin works ans is sufficient......especially as they are saying high dose is 1mg the same as an injection!
They are trying to get people to switch to tablets to save nurses' time. That's going to be even more important now that nurses have had another pay cut.
Of course, it would be easier if they taught people how to inject themselves.
100%!
Totally agree fbirder!!
As for the nurses so called 1% derisory pay rise -The government have shown their true colours, my GP nurse told me they havent had any of the other so called pay rises because GP surgeries dont have to give them as they are classified as a private business so not required to follow any pay awards so havent upped their pay! Disgusting!
Bit like teachers -though the review body reviewed teachers salaries two years ago the government removed the statutory duty for employers to award their employees any of the pay rises so many havent. Of course the public dont know this! So putting a pay freeze on teachers wages is a joke to be honest as even if awarded we dont get it. This country treats its public workers like scum. They already have a chronic teacher and nurse shortage so the situation will only worsen.
The government allege they have many new people applying to teach.....what they dont say is over 60% will leave within three years due to poor pay, long hours, poor working environment, constant monitoring of their performance and excessive work load causing work related stress and burn out.
Do you (or anyone else) know of other conditions where people are taught how to self inject other than diabetics as I never got why people with Pernicious Anaemia aren't taught how to inject themselves?
Yup.
People with some Neuroendocrine Tumours (not gastric ones) need to have injections of somatostatin analogues. During the pandemic, some have been taught to do these themselves. ukinets.org/2020/04/covid-1...
Stupid Doctor!
You can purchase vials of b12 from a chemist in Canada. Learn to do it yourself. It’s only muscular, so not to tricky. Wishing you all the best!
Hi,
Some links that might be useful.
I've assumed you're in UK.
Unhappy with Treatment (UK info)?
1) Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Point 5 is about being symptomatic for B12 deficiency with an in range serum b12 result.
Point 1 is about under treatment of b12 deficiency with neuro symptoms present.
Link has letter templates that cover various situations to do with B12 deficiency.
Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.
Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.
When a letter is sent to GP, worth including a request that GP practice sends written confirmation to letter writer that they have received letter.
I included a request in letters that a copy of letter was filed with medical notes.
My understanding is that in UK, letters to GPs are supposed to be filed with medical notes so are therefore a record that an issue has been raised.
Useful to have a paper trail in case there is a need for a formal complaint over treatment in future.
Letters could contain relevant test results, date of diagnosis, brief family and personal medical history, extracts from UK B12 documents, requests for referrals to relevant specialists eg neurologists, haematologists, gastro enterologists.
Keep copies of any letters sent or received.
Retention of UK medical records
bma.org.uk/advice-and-suppo...
Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.
If you get proof of diagnosis eg positive test result/letter from specialist confirming diagnosis etc keep a copy in a safe place in case it is needed in future.
Accessing Health Records (England
nhs.uk/using-the-nhs/about-...
england.nhs.uk/contact-us/h...
patients-association.org.uk...
2) CAB NHS Complaints
citizensadvice.org.uk/healt...
3) Local MPs/devolved representatives may be worth talking to if struggling to get appropriate treatment.
Has your sister considered joining and talking to PAS who can offer support and pass on useful info?
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
PAS website has a variety of useful articles that PAS members can print out. Some articles can be accessed by non members.
pernicious-anaemia-society....
UK B12 documents
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
Above link has useful diagnostic flowcharts.
This next link is to a summary of the BSH document above that indicates that patients who are symptomatic for B12 deficiency should be treated to avoid neurological damage, even if their serum B12 is within normal range.
pernicious-anaemia-society....
BMJ B12 article
Emphasises the need to treat patients who are symptomatic even if their B12 level is within range.
BNF Hydroxycobalamin
bnf.nice.org.uk/drug/hydrox...
See section for those with "neurological involvement" if she has neuro symptoms.
NICE CKS
cks.nice.org.uk/anaemia-b12...
Local Guidelines
Each CCG/Health Board/NHS Hospital Trust will have their own local guidelines on treatment and diagnosis of B12 deficiency.
I suggest she tracks down the local guidelines for her area of UK and compares them with BSH, BNF and NICE CKS links.
I hope she is not in the area of UK discussed in the blog post below.
b12deficiency.info/blog/202...
Vital to get adequate treatment.
Untreated or under treated B12 deficiency can lead to permanent neurological damage. See links below.
Neurological Consequences of B12 Deficiency
PAS news item
pernicious-anaemia-society....
PAS article about SACD, sub acute combined degeneration of the spinal cord
pernicious-anaemia-society....
May be worth drawing her GPs attention to the risk of permanent neurological damage.
Useful B12 books
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).
BNF treatment info in above book is out of date...see BNF link in this reply for up to date info.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)
Very comprehensive with lots of case studies.
B12 article from Mayo Clinic in US
ncbi.nlm.nih.gov/pmc/articl...
Table 1 in above article is about frequent misconceptions about B12 deficiency.
Perhaps your GP would find this interesting?
Treatment during pandemic
If you or she feels that treatment has been affected by pandemic, I suggest reading the following links
Blog posts from B12 Deficiency Info website
PAS news items
pernicious-anaemia-society....
See news items from 2/11/20 and 25/4/20.
I've written some very detailed replies with more B12 info eg causes of b12 deficiency, symptoms, B12 books, B12 articles, hints about how to deal with unhelpful GPs etc that you may find of interest.
See links below.
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
I am not medically trained.
Low stomach acid
GP asking for blood Test after B12 injections
Not sure whether to ask GP for more tests?
