I’m so frustrated, I had B12 levels of 179 and was given the 6 injection loading dose at the end of June. I was told I’d need injections every 3 months afterwards. I felt alert for the first time in ages afterwards but started to feel tired again a few weeks ago. I went back to GP who to see about more frequent injections and was told they would do blood tests to look for iron levels and also B12 again which I know from this forum is not likely to produce a helpful result (my levels were 1500 after loading doses - they did blood tests then too). I decided not to rush to get blood tests because I don’t think they’ll be helpful and today rang to see if they would contact me for B12 injection or if I needed to make an appointment. The receptionist said that they won’t do anything until after blood tests because I might not need it. I told her it was my understanding that the protocol was to continue with 3 monthly injections without re-checking and asked her to check with GP. She was going to send a note through on their system but I don’t know how long response will take.
After reading the messages on here this feels like a well worn track and I expect the next step is for them to tell me I don’t need it. Can any of the wise people on here point me in the direction of resources that will help me make my case?
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Yogijo
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Thanks. This forum is great because whilst it’s frustrating to see how difficult people find it to get appropriate treatment it’s nice to know that there are people here who understand what it’s like!
Any chance of internal parasites eg fish tapeworm? Do you ever eat raw fish?
There are other parasites that are associated with B12 deficiency eg Giardia Lamblia.
"B12 levels of 179 and was given the 6 injection loading dose at the end of June. I was told I’d need injections every 3 months afterwards"
1) UK recommended treatment for non dietary B12 deficiency without neuro symptoms is ..
6 B12 loading jabs over 2 weeks then a B12 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
You appear to have been put on the first pattern; for those without neuro symptoms. This pattern of treatment changed recently; it used to say a jab every 3 months and it now says a jab every 2 or 3 months. Your GP may not know about this change.
Do you have any neuro symptoms eg tingling, pins and needles, tinnitus, restless legs syndrome RLS, muscle twitches, memory problems, balance issues, word finding problems, migraine, insect crawling feeling (formication) etc?
If yes to neuro symptoms, my understanding is that you should be on second pattern of treatment. See BNF, BSH and NICE CKS links.
"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.
"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".
I also hope 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.
If there's a possibility of PA, worth joining and talking to PAS.
If neuro symptoms present, have you been referred to
1) a neurologist?
2) a haematologist
NICE CKS link suggests GPs should seek advice from a haematologist for those who have B12 deficiency with neuro symptoms. Has GP done this?
3) gastro enterologist if gut symptoms present?
Gastro specialist should be able to spot gut damage from PA, Coeliac, H pylori etc.
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.
1) PAS website has section for health professionals . It is free for them to join PAS as associate members.
2) PAS website has section with useful leaflets/articles eg " An Update for Medical Professionals: Diagnosis and Treatment " which some forum members pass to GPs.
I’m not vegetarian or vegan and I think my diet contains enough B12 rich food. I did have a blood test related to intrinsic factor which the GP seemed to think was ok although I don’t know what the result was. I haven’t been given a reason why I might be deficient but initially was told the treatment was the same regardless (injections). I asked if it could be related to the fact that I’ve fairly recently been diagnosed with Sarcoidosis but was told it was unlikely. However, Sarcoidosis isn’t well understood either and although at the moment my condition appears limited to my skin who knows what other effects it could be having! It took 12 months for that diagnosis following investigations for two seemingly unrelated things which were eventually linked when I had biopsies. It was the blood tests during the investigations that identified the low B12.
"haven’t been given a reason why I might be deficient"
My personal view is that it's worth knowing why a person is B12 deficient as some causes are potentially reversible
eg if cause is Coeliac disease then gluten free diet may allow gut to heal enough for B12 absorption to improve, potentially removing need for B12 jabs
"I did have a blood test related to intrinsic factor which the GP seemed to think was ok although I don’t know what the result was"
The best piece of advice I ever got was to always get copies of all blood test results. I learnt to do this after being told everything was normal/no action and then finding abnormal and borderline results on the copies.
These days I don't believe what I am told about results unless I have a copy of them in my hand or on screen.
As well as having online access to a summary of results, it's my understanding that patients can request access to paper records.
If GP thought results of IFA Intrinsic Factor Antibody test were okay, it suggests that the results were negative or normal range.
However results of IFA test are not particularly reliable; it can give both false positives and false negatives . See links in my other post about IFA test and also BSH Cobalamin and Folate Guidelines.
Does your GP know that it is possible to have Antibody Negative Pernicious Anaemia?
Flowchart from BSH Cobalamin and Folate Guidelines
Is there any chance of taking someone supportive with you to any appointments that might be challenging? It's my feeling that GPs are kinder if a witness is present.
Even better if that person knows about B12 deficiency and has read about it and can intervene on your behalf.
"I asked if it could be related to the fact that I’ve fairly recently been diagnosed with Sarcoidosis but was told it was unlikely. "
Thanks. I agree with your comment about it being worth knowing the reason and I did ask. The GP I see is usually pretty helpful and has requested a number of tests in the past to help me get a diagnosis for a couple of things that weren’t really clear to begin with e.g. Sarcoidosis. I felt fairly optimistic that this would be similar but now feel maybe I need to provide more information to try get appropriate treatment.
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