Just returned from a visit to the doctors this morning to ask if I could have my injections monthly instead of every 3 months as I was feeling no benefit from this and my symptoms had gotten worse in the last month to the point where I've been unbearable to be around. I cant concentrate, cant focus on anything, my vision is constantly blurred/shaky. I go from feeling fine so sobbing the next minute. and i'm extremely sensitive to loud noises, the slightest loud noise sends me into a rage. I explained i'm at the point I cant continue this way as it's really effecting my work/life.
as soon as I said monthly or two months I was told absolutely not they are not allowed to do it something about guild lines?? . at this point I butted in and said no I've spoken to many people (on here) that have theirs monthly and also self inject!
he advised against self injecting and said after a while id feel no benefit from it apparently. and has prescribed me tablets to take (Cyanocobalamin 50 micrograms) 3 times a day after I have my next injection and begin to feel down again.
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laurporr
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Have you been diagnosed with Pernicious Anaemia? If so the tablets will have no effect. If not, are you a vegan of vegetarian? Or do you take PPIs for reflux? Or any of the other medications that deplete B12?
The PAS office is closed for a week but people can leave phone messages.
Do you get copies of all your blood test results? I learnt from experience to do this after finding out that what i was told was normal was not always normal on the copies. Some UK patients can access records online.
I get copies of Ferritin, Folate, B12 and the full blood count(FBC).
"haven't been diagnosed with PA, I'm not vegan and no other medications"
Has your GP explained why you are receiving B12? Some people on this forum have found out when they got access to their complete medical records that they were diagnosed with PA in the past but were not told......
Have you ever had an IFA (Intrinsic Factor antibody test)?
This can help to diagnose PA but is not always reliable as in soem cases peopel can still have PA with a neagtive result in IFA test. The "BCSH Cobalamin and Folate Guidelines"mention Antibody Negative PA. I read the whole BCSH Cobalamin document and gave a copy to GPs.
"as soon as I said monthly or two months I was told absolutely not they are not allowed to"
Current guidelines for people with b12 deficiency and neuro symptoms mention loading injections every 2 days for as long as symptoms continue to get better then injections every 2 months. See BCSH Cobalamin document page 8. i also found page 29 useful. How many loading injections did you have at the start of your treatment?
The doc obviously gives you injections because they are the most effective method of delivery. Then he proceeds to give you tablets when the benefits of the injection wear off. It doesn't make sense. It is obvious that you have neurological symptoms, and the guide lines for that is very 2 months . Down load the guide lines , and give them to him.
Thanks for your reply! I did say this to him that the neurological symptoms had gotten quite bad in recent weeks and its really effecting my work i cant concentrate on anything. Im changing to my local doctor next week so might be worth downloading these guidlines and booking another appointment!
It is possible to have high levels in your blood but little or none getting through to cells where it is needed - functional B12 deficiency. For some this may be down to an auto-immune response to high levels of B12 in serum that basically shuts down the mechanisms that deliver B12 to cells - you will be okay whilst you have so much B12 in your blood that there's more than your body can block but once it goes under this level - which could still be really high- or off the measurable scale - you start to deficient at the cell level. I was actually going backwards for over a year after I started being treated and it wasn't until I really started treating myself that things started to improve. I get through large amounts of B12 and permanently have levels well in excess of the top of the scale - can't say i've noticed that I'm needing more and more and I've been doing this for a couple of years now.
My mother appears to be in the same boat after starting on B12 injections. My brother and aunt both find supplementing B12 useful but neither has a formal diagnosis and they both use a nasal spray that is going to raise B12 levels but nowhere near as much as injections - both of them only need relatively small amounts of B12 compared to the amount that I need, which might be co-incidence but ...
I really would seriously consider not seeing the GP that prescribed the 50mcg tablets as they obviously have no understanding at all of how an absorption problem works ... Whilst some MS patients receiving B12 report that upping their dosage doesn't help it is not something that I've ever seen mentioned in relation to treatment of an absorption problem. There are some theories about different forms of B12 clogging up the system that i've seen discussed on other fora but I've never come across any specific studies.
As well as giving my GPs a copy of the BCSH Cobalamin and Folate guidelines, I also gave them a copy of Martyn Hooper's latest book which is up to date with guidelines.
"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency"
Your Gps might be interested in these 2 documents/articles
Fbirder has compiled a useful summary of mainly UK B12 documents. If you search for his posts you should find a link to summary. I plan to give a copy of his summary to my GPs.
Time is of the essence if a person has neuro symptoms associated with b12 deficiency. I have read that there is a window of opportunity for recovery from B12 defic neuro symptoms and that non treatment or inadequate treatment means that there is a chance the neuro symptoms may become permanent.
Have you ever been referred to a neurologist? My experience sadly, is that there are neuros who know little about B12 deficiency but some people are luckier.
Another B12 book I found useful to read was "Could It Be B12?" by Sally Pacholok and JJ. Stuart. it's very comprehensive with lots of case studies. I have Martyn hooper's other two books about PA and B12 deficiency. "LIving with Pernicious Anaemia and Vitamin B12 deficiency" has some case histories....made me cry with recognition reading other people's stories.
I'd urge you to contact the PAS or leave a phone message. In some cases they can intervene on behalf of members. Lifetime membership costs £20. the office is open again from 15th June I think but phone messages can be left.
"I havnt had an intrinsic factor antibody test "
I'm surprised about this. Have a look at page 29 in the BCSH Cobalamin and Folate Guidelines. This is a diagnosis and treatment flowchart and I think it mentions the IFA test.
"i am receiving b12 because my levels were very low and i had trouble with absorbtion "
Have they tried to find out what is causing your absorption problems?
Coeliac Disease
Have you ever had a Coeliac test? Coeliac disease can affect the gut and can sometimes lead to deficiencies in some nutrients including B12. It is possible to have Coeliac disease even if test for Coeliac antibodies is negative.
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Neurologist says there is no scientific reason to inject more frequently 
Test for intrinsic factor antibodies - when to do?
Really don't know what to do about B12 
Had enough
Confused blood test
