A family member has a vitamin b12 deficancy. Has done for over 2 years. She has only ever been given tablets. She has pushed for injections but the response is always that they are completely unneccessary. She had a blood test recenty showing that after 2 years, the tablets have finally got her to a 'normal' level of blood b12 despite it still being very low (<500). The doctor says this means she has enough and is fine. She is taking around 5 50mcg tablets a day.
I'm very worried because she is experienceing issues with her memory and when she first saw a doctor her feet were completely numb. Myself and several other close family members all have PA and are on injections. Just reading the NHS page on B12 deficancy shows that how she is being treated is completely incorrect yet her doctor refuses to accept that he is wrong. I don't want her condition to get worse but I don't know what I can do.
My understanding is that with the severity of her symptoms, she should be on injections every other day till the symptoms improve, then every 2 months. What can I do? Can the PA Society assist with talking to the doctors if she joined as a memeber?
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Kodey
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See another doctor. It may be worth paying to see a private neurologist.
I would start with writing a letter asking for proper treatment as described by the British Committee on Standards in Haematology - onlinelibrary.wiley.com/doi...
Print that out and include with with your letter. Highlight the very first bit in the Summary of Key Recommendations -
The clinical picture is the most important factor in assessing the significance of test results assessing cobalamin status because there is no ‘gold standard’ test to define deficiency.
Plus this bit on page 501
Current clinical practice within the UK is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form (outlined in the British National Formulary, BNF, medicinescomplete.com/mc/bn... megaloblastic-anaemias.htm). Standard initial therapy for patients without neurological involvement is 1000 ug intramuscularly (i.m.) three times a week for 2 weeks. The BNF advises that patients presenting with neurological symptoms should receive 1000 ug i.m. on alternate days until there is no further improvement.
And the algorithm in Figure 1.
In your letter you should say that you want to be given B12 injections, as recommended by the BCSH. You also require a referral to a neurologist.
Don't put too much else in the letter - just those two points.
I would also cc: to letter to the practice manager, your local MP, local press, TV and radio.
Pretty much confirms what fbirder has stated but this is what I was sent when I protested about my injections being stopped and being offered a oral substitute. I spoke with two GP’s, 3 nurses and the practice manager. I wish you and your family good luck🤞
Point 1 is about being under treated for B12 deficiency with neuro symptoms present.
Point 5 is about being symptomatic for B12 deficiency with an in range B12 result.
Link has letter templates that people can base own letters on.
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.
Most medical records are deleted after 8 years so 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.
Can be useful to get past blood results ( to prove a past deficiency). Some people get copies of complete medical records. I think most GP surgeries have online access to at least a summary record.
Can be very interesting to see what GPs have written about a patient.
Patients can ask to have notes inserted in records if they are unhappy about something in records. GPs have to correct mistakes such as wrong names, wrong date of birth in a record. They do not have to change a diagnosis just because a patient disagrees with it.
If your relative is struggling with doctors, it may be possible for someone to access her records if she has the capacity to agree to this or to intervene with GP on her behalf. She may need to give signed written permission for someone else to do this.
Symptoms such as memory issues, numbness, tingling, pins and needles, strange gait (unusual way of walking), brainfog, confusion, eyelid flickering, muscle twitches, muscle fasciculations, electric shock sensations, insect crawling sensations (formication), burning sensations, water trickling sensations, difficulty getting words out when talking (nominal aphasia), tinnitus, clumsiness, dropping things, walking into things, dizziness, vertigo, restless legs, migraine, proprioception problems are usually considered to be neurological and there are many other neuro symptoms that can be associated with b12 deficiency.
Proprioception sense is awareness of where the body is in space.
Two neuro tests that can help test proprioception are ....
1) Romberg test
2) Walking heel to toe with eyes closed
These tests should only be carried out by a doctor at medical premises due to risk of injury from loss of balance. I stupidly tried the second one at home and veered into a wall.
Balance issues when it's dark, eyes are closed or view of surroundings is blocked then this is suggestive of possible proprioception issues. For example I used to fall off the pavement if someone walked directly towards me and blocked my view.
If neurologist does not carry out any tests with the patient's eyes closed then it's likely that proprioception sense has not been fully tested.
Has she ever been referred to
1) a neurologist?
2) a haematologist?
NICE CKS link suggests that GPs should seek advice from a haematologist for patients with B12 deficiency with neuro symptoms. Has GP done this?
If GP won't refer her to a haematologist then may be she can persuade GP to write a letter to local haematologist asking for guidance on how to treat her.
3) a gastro enterologist if gut symptoms present?
A gastro specialist should be able to spot signs of gut damage from PA, Coeliac, H Pylori infection etc.
Don't expect wonders if referred to a specialist...there is sadly a lot of ignorance about B12 deficiency among GPs and specialists.
Folate deficiency can also lead to neuro symptoms.
Treating folate deficiency without treating a co-existing B12 deficiency can lead to neurological problems.
If GP is reluctant to consider appropriate treatment then may be worth drawing their attention to the risk of SACD if a person is under treated for B12 deficiency in any letter/conversation.
Link about "What to do next" if B12 deficiency suspected
Table 1 in above article is about frequent misconceptions about B12 deficiency.
Has she got blood results for B12, folate, ferritin or other iron tests and for full blood count (FBC) tests?
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). BNF treatment info in book is out of date...see BNF link in this reply.
"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.
"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD
Stichting B12 Tekort (Dutch website with English articles)
Units and reference ranges may vary from those used in UK.
I absolutely agree with fbirder and hope that you can make some progress. To me the tablet dose seems low - if you cannot get injections, it might perhaps be worth trying a different type of oral/ higher dose. We have lots of PA and B12D in the family but no-one would treat my father. He uses Better You B12 Boost, and it has made a huge difference, very noticeable when he runs out. Best wishes
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