Diagnosed with PA in 2013 - no loading doses just 1 injection and straight onto 12 week injection regime. After a few months experienced severe withdrawal type symptoms - drained of energy, headaches/migraine, confusion, memory loss etc. which were affecting work and personal life. Eventually Dr allowed me to have injection every 10 weeks but was very difficult to achieve. Improved but for the last year or so all previous pre-injection symptoms have returned with a vengeance! I have discussed this on several occasions at prescription reviews with my GP but he has always been adamant that he is following NHS guidelines and is not prepared to reduce the time period between injections.
Last week- having started withdrawal symptoms at roughly weeks 6/7 and being completely overwhelmed by tiredness (was sleeping the majority of the day and night), lethargy when I was awake, completely unable to concentrate or function at work I visited my GP again (which wasn’t easy to do based on past experiences).
I had barely started talking about how I felt when he said ‘we have talked about this before’ ‘there is no evidence to support any claims relating to the existence of B12 withdrawal symptoms’. He then went on to say that if I was experiencing any improvement of my symptoms following my injection I would probably feel the same if I had been injected with water. He was not prepared to listen to anything I had to say and his last statement to me was that there was a term for what I was experiencing - somatization.
I left feeling upset, shocked and angry.
I am a mature, educated, confident woman and on this occasion I was feeling so unwell I went to see my GP for help - instead what I experienced was patronising and disrespectful delivered by someone who should know better.
It’s over a week since this happened and as I am still in a pre-injection state (injection on Monday) I just want to forget about it but the stronger part of me feels I should address this with the GP practice manager.
Sorry for the length of this post but I needed to write as part of my process for dealing with it.
Any suggestions regarding appropriate evidence to accompany my letter to the practice would be welcomed.
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Paribell
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Some parts of UK are using out of date local guidelines on treating B12 deficiency which may explain your GPs reluctance to increase injections. Reluctance may also be due to financial constraints.
If you think it's due to budget constraints; nurses time is expensive, actual b12 jabs are not, perhaps you could ask to be shown how to self inject stressing the financial saving to GP practice?
Worth tracking down your local area guidelines and comparing them with national guidelines eg BNF, BSH and NICE CKS links.
Have a look at these threads on the forum where I have posted detailed replies which should have some useful info you can use in your fight to get adequate treatment.
You've mentioned migraine, confusion and memory loss.
Do you have any other neurological symptoms eg
tingling, numbness, pins and needles, burning sensations, insect crawling sensation, tinnitus, muscle twitches, muscle fasciculations, flickering eyelids, restless legs syndrome RLS, vertigo, clumsiness, dropping things, bumping into things, strange gait (unusual way of walking), word finding problems, balance issues, brainfog, proprioception problems (problems with awareness of body in space) etc?
Does your GP have a list of all your symptoms, especially any neurological ones?
In relation to B12 deficiency, GPs often look for signs of peripheral neuropathy PN especially signs of sensory neuropathy so worth mentioning signs of PN.
If yes to neuro symptoms, in UK people with b12 deficiency with neuro symptoms are supposed to be given more intensive treatment. See BNF, BSH and NICE CKS links for more info.
1) UK recommended treatment for B12 deficiency without neuro symptoms is ...
6 B12 loading jabs over 2 weeks followed by a jab every 2 or 3 months
2) UK recommended treatment for B12 deficiency WITH neuro symptoms is ...
A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months
My understanding is that with neuro symptoms present, you should be on second treatment pattern.
Link about writing letter to GP if under treated for B12 deficiency with neuro symptoms
I feel it is more effective to put queries about treatment in a brief as possible, polite letter to GP. Letters to GPs in UK are ,as far as I know , supposed to be filed with medical notes so harder for GP to ignore them.
Letters could contain symptoms list, test results, relevant personal and family medical history, extracts from UK B12 documents, any other supportive evidence.
Worth mentioning that GP can find treatment info in their BNF book Chapter 9 Section 1.2
although possible that some GPs may be using an out of date BNF book.
You could draw your GPs attention to consequences of under treatment.
With neuro symptoms present, have you been referred to
a neurologist?
a haematologist?
NICE CKS recommends that GPs seek advice from a haematologist for patients with b12 deficiencyw ith neuro symptoms. if GP won't refer you, they could at least contact a local haematologist by letter and ask for advice.
Don't expect better treatment from a specialist, ignorance about B12 deficiency exists among specialists. I just hope you are lucky and get one who knows about B12.
If gut symptoms present, have you been referred to a gastro enterologist?
"went to see my GP for help - instead what I experienced was patronising and disrespectful "
I had years of this. My experiences included being shouted at and my pleas for them to consider the possibility of B12 deficiency were ignored, pressure was put on me to leave one surgery.
It wasn't just GPs it was also specialists eg neurologists.
Do you have someone supportive who can go with you? Even better if they have read about B12 deficiency.
It's my impression that GPs are kinder if a witness is present.
If all else fails , many on this forum choose to self treat. I had to in the end but i do feel it is an absolute last resort and I only did it when all chances of NHS treatment had been exhausted.
Help for GPs
1) PAS website has section for health professionals that your GP may find useful.
It is free for them to join PAS as associate members.
You would need to be a PAS member to print these out.
Warnings....
1) B12 deficiency is not always well understood by GPs and specialists so it pays to be well prepared for any appointments.
2) Some GPs are not able to cope well with assertive patients so be prepared for GP/patient relationship becoming strained and have a back up plan eg another GP surgery to go to.
I am already a member of the PAS and have access to the documents etc you mention so when my brain is more receptive I will check out your links.
It was a neurologist who flagged my B12 deficiency back in 2013 - I was referred because I had lost my sense of taste and smell. Don’t think my GP was too impressed to be told to test for PA by the neurologist - even then he completely dismissed my concern and gave me no information. I only found out about loading doses when I found and joined the PAS.
During 2015/2016 I experienced repetitive occurrences of debilitating vertigo - I was referred to ENT and Neurology - diagnosed with vestibular migraine and attended vestibular rehabilitation. I still have mild attacks of vertigo but find I can lessen the symptoms using the Epley maneuver.
My doctor seems to be unable to join the dots which connect my various symptoms to PA and when I try to point this out I am considered to be inventing symptoms and wasting his time.
I will take your advice and contact the PAS for advice on pursuing this with the medical practice - I don’t doubt that they will close ranks if I launch a complaint.
Have heard mixed reviews of above charity. They are usually quick to respond to enquiries.
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. I cried when I read this as it was as if I was reading about myself.
"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".
Also plan to read "Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD.
There is a useful summary of b12 documents in fifth pinned post on this forum.
"if I was experiencing any improvement of my symptoms following my injection I would probably feel the same if I had been injected with water. He was not prepared to listen to anything I had to say and his last statement to me was that there was a term for what I was experiencing - somatization"
I suspect that your GPs is one of the ones who thinks that B12 jabs have a placebo effect.
fbirder might be able to better explain a placebo effect than I can.
I am horrified he said that, when you have a diagnosis of PA. I would have handed him a copy of the BNF book open at Chapter 9 section 1.2 and said I don't think it suggests treating PA patients with water in here.
With a GP like this you need to consider changing GPs
If he gives you a label of somatization (it happened to me) it can make it very difficult to get appropriate treatment or even any treatment or for any GPs in future to take you seriously.
Somatization is also known I think as psyshosomatic symptoms and medically unexpalined symptoms (MUPS) and is related to otehr disorders such as hypochondria.
I would not see a GP like that again without having a trusted, supportive person with me.
"the stronger part of me feels I should address this with the GP practice manager. "
Be warned that if GP practice senses the possibility of a complaint they may become very protective of the GP. It shouldn't be like that but from personal experience it can be.
Pressure was put on me by one GP surgery to leave.
I would urge you to speak to PAS about your experience first before tackling GP and practice manager.
It’s a personal decision but self injecting and finding the right injection frequency has, for me, given me my life back. I now have freedom from what you perfectly describe as ‘pre injection state’ and live my life on an even keel.
Other benefits include no longer having to arrange my time around nurse appointment availability nor being in fear of my GP reducing my injection frequency.
"He then went on to say that if I was experiencing any improvement of my symptoms following my injection I would probably feel the same if I had been injected with water. "
Lord have mercy.
It is in these moments that I realize that I have an evil side. As my imagination goes so many places in replying and visualization. Insert smile and big wink.
Please please let it go. I know easier said than done. And like you writing it out is part of that process too. This has nothing to do with you. I am sure most of us have been there, some multiple times.
At first I wanted to change the system and educate, educate, educate. Now I realize that I need my sanity, my strength back, my recovery first. I can't get worn down dealing with erroneous medical information/decisions. I decided to self-inject. And I decided to see a naturopathic doctor who understands the issues at hand with b12 deficiency (will still see my GP when/if needed and will continue while with her to counter any protocol that I don't understand or I view as erroneously informed).
And please don't think my words mean don't fight for what you need. That is priority #1. You must. Just adding there are other options as well to lessen that load - self-injecting if you're up to it and/or if you get too worn down.
When I feel whole I will get back to fighting back, educating, and changing the system. But not a moment sooner.
I am so very sorry that I made your post about me. Your doctor's responses and you taking them in (normal) got me going!
So So sorry you are being treated like that. I suggest you write yourself a plan of action on how you will deal with the patronising little shit.
My first inclination would be to make an appointment with a different doctor in the practice (preferably one you’ve had positive dealings with in the past). That should give you some indication of whether they will close ranks if/when you complain. It may be that another GP will be more receptive and understanding, not to mention more knowledgeable. I would also suggest having a little recorder or recording the consultation on your phone.
If you have no joy there, contact the neurologist who initially suggested you be tested.
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What do I do??!!
Really need some help with GP practice and blood test please
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