Hi, I really need information on the other tests that can be done other than the stantard B12 and IFA (I was negative for IFA). I have been having loading doses for last 3 weeks, this is my 4th week of 3 loading doses. I was referred to a haematologist after a neurological examination arranged by the Dr surgery, I was never sent any communication or saw the haematologist, I simply recieved a call to say the Dr recieved a letter from the Haematologist ( I have not seen him or been given a name), stating that I should have loading doses until there is no further improvement and then should have injections every two months. It also briefly said that some patients are helped with sub-lingual lozenges and in some cases may be an alternative to injections. This was mentioned to me by the nurse, I said "no, that would not 'replace' the injections and most sufferers have to use these things in between just to help keep them going until the next injection. I attended for my jab yesterday and was told that the Dr wanted to re-test me, I pointed out I was not happy to be re-tested as it is pointless as it will show high after loading doses and was a false high as it does not show the actual 'active B12'. I was then told that if I refused the test, she had been told to tell me that the injections were to be stopped! I was given no choice. I am scared, I have just started to feel less fatigued and have some energy. The fuzzy vision is better and tinnitus is far less, but I have severe and long-standing neurological damage already. I have damage at the top of my spine which was put down to arthritis I think about 2007, I was only about 44 years old and no-one wondered why. I could do with some information on the other tests that can be done so I can ask for them or have them privately if necessary and also any help to write a letter to my Dr. with links to the guidelines perhaps or any material which might help him to understand he cannot stop my treatment. I feel I am not believed, that the Dr is ignoring the neurological issues and thinks I am making it up, he would not refer me until I had seen a neurologist and I was subsequently referred by the neurologist but now he seems to want to ignore that. I was refused a copy of the Haematologists letter. I am also concerned that I was 'threatened' with withdrawal of treatment if I refused a re-test.
All help gratefully recieved.
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Galadriel1
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- MMA (waste product that builds up if body isn't able to process B12)
- homocysteine (another waste product that builds up if body isn't able to process B12)
- active B12 (generally not available on NHS- and definitely not suitable if you are in the middle of loading shots.
Do you have a friend or family member that you would trust to go with you next time you go to the surgery? - sometimes it helps to have someone there, particularly if you are very stressed - as it can be really difficult to communicate if you are stressed and I'd imagine that what is going on is making you very stressed.
I would ask why they aren't allowing you to see the letter from the haematologist - legally you are entitled to full access to your medical records so not legal to obstruct access. They are entitled to make an administrative charge to cover administrative costs but that should not be prohibitive and cannot be punitive.
There is a lot of advice on writing to GP etc on the B12Deficiency site
It is possible that they may just be checking that the blood test is about confirming that your levels aren't still low and that the injections are working in that sense but it would be totally inappropriate to withdraw treatment on the basis of levels in your blood being high. If this happens then it would be appropriate to make a formal complaint - especially in light of the guidance your GP has received from other specialists.
Actually sublinguals are sufficient for some people - but by no means all - this is partly because 1% of B12 is absorbed outside the ileum but is probably also affected by the fact that malabsorption doesn't actually mean no absorption. Also, the idea behind sublinguals is that the absorption isn't generally happening in the gut but is happening through membranes in the mouth. In terms of amounts of B12 it wouldn't be as efficient but it can be as effective for some - but by no means all.
I think page 8 in the BCSH Cobalamin guidelines mentions it is not necessary to retest B12 levels once B12 treatment has started. page 29 is a diagnosis flowchart I found useful as it has guidance on tretament and diagnosis for those with and without neuro symptoms.
"I was then told that if I refused the test, she had been told to tell me that the injections were to be stopped!"
Have you rung the PAS? They should be able to point you to useful info before your next appt. I think the chair of the PAS would be interested to hear about the threatened withdrawal of injections and withholding of haemotologists letter. In some cases they are able to intervene.
I think Gambit's advice to take someone with you is good especially if they are supportive, understand your conditon and hopefully are up to date on B12 guidelines etc. My experience is that medics are usually better behaved if a witness is present.
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