About five weeks ago after much cajoling I got my Doctor to agree to giving me B12 Injections. He was very reculant as my levels where borderline but all my symptoms related to B12 deficiancy. After the injection the pains in my hips, shoulders, knees etc eased off a bit and wern't as severe up until last week. Then the pains came back with a vengance. Ah I thought. Im having these injections for three months then I have to see the doctor. I made an appointment to see the nurse and as Im sitting infront of her Im telling her how excited I was to be having another injection as the first one was so effective. I couldn't have the injection. The first one was supposed to last for three months and then I go back to the doctor. I was so deflated and upset and am sitting here in agony asking this question. Do you think its a good idea to get a home test at this point and see what my levels of B12 are and if they proove to be low take them to my doctor. Do you think he will listen ? Can anybody give me some advice on this please.
Thank you Annie x
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Tangles
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I shall be interested to see what replies you get Tangles as I , and probably many others, find myself in the same position as you. I think 'borderline' is a very different place for different people and doctors should be guided by numerical results but not stick rigidly to them. When will doctors listen more carefully to their patients? I know, can feel within my body, that I need a top up but am told by my GP 'We know how long they (the injections) last. Wait another 3 weeks. I find my self asking, 'and what damage will be done in that 3 weeks'?
I am recently diagnosed as well at the end of november 2012 - level was at 100 and had tons of neurlogical symptoms.B12 is a wonder vitamin - I feel so much better. I am in the same boat as you - as in the UK where I am working for 6 months, they will only inject every 3 months. I am fortunate as I also live in SA and you can easily get B12 injections from any local pharmacy so when I go home, i get one. HOWEVER, I have realised that to feel well, I need an injection every 3 weeks or I get fatigued and depressed and dizzy.
I have discovered B12 patches. - You apply them to your skin weekly and they are really helping me maintain when I can't get my shots. I hope this helps you!
Firstly, you can ask your doctor for a 'therapeutic trial' to see if this alleviates your symptoms. B12 is a water soluble vitamin and so you cannot overdose. You should also be checked for folate deficiency and your iron levels should be checked. After this, an Intrinsic Factor test should be carried out. Your B12 results may also be technically 'in range' but as the guide range varies, it is better to go by symptoms. Our chairman has written a book called Pernicious Anaemia: The Forgotten Disease which you may find helpful as it has medical evidence and will educate you on this topic and allow you to chat knowledgably to your GP. Our forums also have lots of information and provide excellent support, you may also find information on our website that may help. Do remember that if you are in the UK, you also have a legal right to change GPs. I hope you feel better soon.
Started off on 12 weekly about 10 years ago. In 2010 I had a "crash" and my B12 levels were simply not getting back up to my own personal "normal".
I went through about a year of monitoring blood tests with my GP and got down to 8 weekly jabs and then to 6 weekly where I am now.
My regular tests proved beyond a doubt that my body was simply not retaining the levels expected.
The BMF states that where symptoms are still present, you can have 8 weekly injections and where there are still neurological problems...more frequently. Ask the GP to refer to it??
Thank you all so much for pointing me in the right direction and also the fact that you all can sympathise with me really helps. Over the last couple of weeks since I put this post up I have been feeling really down to the point whereby I havnt even been bothered about my illness. I have just let the clouds take over my thinking and I just have wondered why I have to fight so much with doctors and had convinced myself its far easier to 'Curl up and Die' rather than carry on fighting to try and be well.
However, I have only just read your replies for which I thank you. Tomorrow I am back on the campain and will try and convince my Doctor that he should be doing more and refferring to the advice you have all given me.
I get my B12 injections from the practice nurse on a repeat prescription. We always make the next appointment for 3 months but he always tells me to come back sooner if I feel that I need the next injection sooner. I haven't had my levels checked for ages, we just work on symptoms. Hope you get sorted out.
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