Thank you to those of you who gave me such great advice. I had a letter written for my GP with all the points and advice included but decided to wait until after I was seen at a hospital clinic for ongoing chest infections today. And then today I was seen by a hospital doctor who had familiarised herself with my recent GP blood test results before I went in. She asked me all the questions about my symptoms that my GP should have asked and she was shocked at my response that they had not been discussed before I was told what my injection regime was to be. She checked my reflexes, phoned the haematology consultant in the hospital and said that I should have been put on EOD for at least a month. She told me the GP bloods showed I had IFactor antibodies and that I should have been referred to Gastroenterologist and for an MRI. She said I had ongoing neurological symptoms and she was happy for me to self inject. She told me to change my GP! I cannot believe I am finally being taken seriously. She said B12 and folate testing was routinely used by her to rule it out on ward patients and she was genuinely shocked that at my levels the GP had not followed me up. Not even to tell me my diagnosis.
I am grateful to this blog for being able to talk coherently about the last two years struggle in my health. Unbelievably I have been seen by a doctor who understands my condition and I am now hoping that as a result my health will improve. Good luck to all of you out there.
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Skimmingstone226
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Really pleased that you managed to be seen by a good doctor who understands how serious B12 deficiency can be. Glad to hear as well that she routinely checks for both this and folate deficiency on wards. It shouldn't ever be about luck though, should it ?
I hope you have kept a printout of the positive Intrinsic Factor antibody test. Please make sure you do that for "just in case".
I so agree with you and Cherylclaire. She has given me a letter for the doctor and it says on it about my neurological symptoms and that the treatment is according to BNF guidelines. I doubt if he’ll even care. Thank you for your support and knowledge. This forum is truly a life saver. It has given me such great knowledge. I thought initially B12 was just a little issue about a vitamin. It’s a travesty that it is not better understood in the medical profession.
So glad for you. It looks like the information is starting to get through to some medics. This can only speed up if we keep up the knowledge pressure. There is more to do as I suspect that much ageing, including severe physical and memory problems may well be due to B12 problems. I cannot get my GP to accept that the BNF guidelines mean precisely what they say - no ifs - no buts.
I am so pleased that things are looking more hopeful.
Is the doctor you saw going to write directly to your GP?
I would expect her to point out to GP in a professional way the appropriate treatment pattern and that you should be referred to a gastro enterologist and for an MRI
You should be able to get a copy of any letter hospital sends to GP.
There is a chance I guess that if your GP learns a lesson from this, they may be more attentive towards you in future.
There is no guarantee that changing to a new GP will mean better experiences but I hope you will be looked after well if you do decide to change.
May still be worth writing a letter to your GP requesting gastro and MRI referral.
The fact you have neuro symptoms and that the hospital doctor suggested MRI may mean that she thinks it's necessary to exclude the possibility of damage to your spinal cord.
B12 deficiency may lead to white matter lesions in brain which in turn may cause neuro symptoms so hospital doctor may think it's necessary to exclude this possibility.
Article below is aimed at researchers and medical professionals.
Cobalamin Deficiency: Clinical Picture and Radiological Findings
If you have an MRI in future, I suggest you get a copy of image and report.
I agree with Cherylclaire that it is a good idea to keep a copy of positive IFA test just in case you meet ignorance about PA and B12 deficiency in future from other health professionals.
I'm assuming the treatment the hospital doctor referred to is that found in Chapter 9 Section 1.2 of BNF book (British National Formulary).
See section for patients with "neurological involvement" in link below.
If you haven't already done it, I suggest tracking down local guidelines on treatment/diagnosis of B12 deficiency for your CCG/Health Board and comparing them with BSH guidelines, BNF link and NICE CKS links below.
Please be aware that if you move areas in future that different CCGs/health boards may have local guidelines that vary greatly in how B12 deficiency is treated.
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.
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