I feel I am none the wiser about my B12 deficiency and why it is being caused. Ive had quite a few blood tests, but reading through the forum im finding things that arent being looked at.
The symptoms really affect me a lot - im a teacher and the brain fog and tiredness really make life difficult.
I get words mixed up, forget words and people's names, my hand writing and even spelling are affected, i sometines find it difficult to recognise things like apps on my phone or it is difficult to go shopping due to not being able to think clearly, i have fatigue, confusion, low mood, my appetite is affected in that i dont want to eat. I get pins and needles and cramps, i havd foggy/blurred vision in the mornings and im not completely happy with my bowel movement.
The gp is happy to give b12 treatment but wont follow guidelines and wont refer me to a haematologist as my symptoms arent neurological enough - i have no problems with balance he said. Another family member in medicine said if the injections didnt work, then i should see a haematologist. Im not sure.
Also he said he simply wouldnt let me get injections every two months as that would entirely have a placebo effect and could result in way too much b12. I feel he wasnt fully honest with me and just wanted to fob me off.
I feel there is no follow up - i see the gp, he sets tests and then they seem to be ok online so no follow up appointment. I dont know why they stopped the treatment after only two three month injections (i had the 6 injections in two weeks at the start last year).
Im now restarting the two week intense injections. I cant wait until they kick in! Previously, the three month wait was not enough, I was firmly back to square one by about 8 weeks.
Some questions - is it important to know why i have this deficiency, and if so, what tests might i be missing?
How can i make the gp increase injections based on symptoms returning?
Thanks!
Written by
Luac
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First he needs to be told that the recommended dose for hydroxocobalamin has recently be changed from 'every 3 months' to 'every 2 to 3 months'. Ask him to check the online BNF. That means that there is no good reason you cannot have injections every 8 weeks. After all, if nobody needed 8 weekly jabs, then why change the recommendations?
"but wont follow guidelines and wont refer me to a haematologist as my symptoms arent neurological enough"
Have you considered putting your concerns into a letter to GP? Letter could contain symptoms, relevant family/personal medical history, test results and extracts from B12 documents?
List your symptoms especially every neurological symptom.
You mention
pins and needles (look up neuropathic symptoms)
brainfog
confusion
get words mixed up, forget words and people's names ( look up nominal aphasia)
Do you have any of these below ?
Tinnitus
Numbness
Weakness in limbs
Insect crawling sensations (formication)
Muscle twitches
Limb jerks
Tingling
Restless Legs Syndrome
Clumsiness, bumping into things
Dropping things
Balance problems
vertigo
Problems with proprioception ( awareness of body in space)..harder to explain but do you lose balance if your eyes are closed, or it's dark or you lose sight of your surroundings eg when your view is blocked.
Might be worth pointing out that untreated or under treated B12 deficiency may lead to permanent neurological damage and you would prefer to avoid this....
Might make GP take notice although sadly may just irritate them.
"I'm now restarting the two week intense injections"
At least you are having repeated loading doses but your GP does not appear to know that loading doses for someone with neurological symptoms are more intense than this.
UK B12 treatment for B12 deficiency WITH neuro symptoms is...
A B12 loading jab every other day for as long as symptoms continue to improve (could mean weeks even months of every other day jabs) then a jab every 2 months.
GP can check this in following documents, GP likely to refer to BNF. The info on treating B12 deficiency with neuro symptoms is in Chapter 9 Section 1.2 I think if GP using BNF book.
Don't feel you have to be loyal to a particular surgery: it's your health that's at risk.
I stayed far too long at one GP surgery, deteriorating to the point of dementia symptoms and spinal symptoms. I feel so angry with myself for staying there and angry with the GPs for the way I was treated.
There are a lot of links on your first thread on this forum that should be of use especially if you're in UK.
If GP is not keen to refer you, how about putting request for referral into a brief, polite letter along with evidence that supports request eg extracts from UK B12 documents. GP does not have to agree to request but it is harder for them to ignore if it's in a letter. I occasionally offered to pay for the referral which I think shamed them into referring me.
Are you in a position to go private? Although this is no guarantee of better treatment.
See HDA patient care trust link above who may be able to offer free appointments with specialists.
Haematologist
You could mention that NICE CKS link (below) indicates that GPs should seek advice from a haematologist for patients with B12 deficiency with neuro symptoms. Even if GP is unwilling to refer you to haematologist perhaps you could request that they write a letter to haematologists at local hospital asking for advice ( and ask for a copy of any response from haematologists).
Have you asked to be referred to a neurologist as you have neuro symptoms?
Sadly some specialists lack understanding of B12 deficiency so be well prepared for any specialist appointments.
Gastro enterologist
Do you have gut symptoms? Gastro specialist should be able to spot signs of gut damage from PA, Coeliac , H Pylori infection and other gut conditions.
Support
If possible I suggest taking a supportive friend/family member with you to appointments, even better if they have read about b12 deficiency and understand what you are going through.
GPs are sometimes kinder, in my opinion, if a witness is present....
PAS
If there's a chance you might have PA, I suggest joining and talking to PAS.
Did you have tests for PA?
If you're not sure, I suggest getting copies of all your blood test results and checking.
Best advice I ever got was to get copies of everything.
Any chance of internal parasites eg fish tapeworm. Do you ever eat raw fish eg sushi, smoked salmon etc?
Are you on any medication that can interfere with b12 levels ( and/or folate levels) eg PPI drugs, metformin ( a drug used to treat diabetes), some anti-epileptics eg gabapentin etc...
Link about "What to do next" if B12 deficiency suspected
Ive just had the last of my 6 injections and the nurse said ill get blood tests in 3 months to see if I need to continue. There is no follow up, no questions regarding whether health has improved or not. I havent been tested for PA nor have iron levels been tested. It's clear to me that they are not following updated procedures. I will write a letter this week.
If you're going to write a letter, I suggest two things....
1) Consider joining and talking to PAS first. Best to phone. They can sometimes intervene on behalf of their members and at very least can suggest useful info to pass on to GP.
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). I think book does not show updated BNF info.
"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. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".
There is also a book written by a doctor associated with B12d.org but I haven't read it yet.
"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD
I agree with fbirder that your GP needs educating.
Help for GPs
1) PAS website has section for health professionals. It is free for them to join PAS as associate members.
2) I believe PAS may have access to a GP who understands PA. It may be possible for your GP to speak to this GP. You would need to be a PAS member and liaise with PAS.
May also be possible to arrange for your GP to speak to the chair of PAS, Martyn Hooper.
3) PAS website has useful leaflets/articles that some on forum have passed to GP eg
"An Update for Medical Professionals: Diagnosis and Treatment"
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Neuro follow up
Help with self-injecting
high b12 high mch and mcv
Update following GP appointment. 1 Month down the line.
Haematology done with me: what next? Confused.
