Should I give up

Hi it's been a while since I last posted I was diagnosed with graves 11 months ago and after some months have improved but I have had lingering symptoms painfull feet with really bad burning especially at night insomnia and sudden bouts of exustion my left leg keeps going numb I was sent to a neurologist and nerve function test has confirmed mild nerve damage in left leg the thing is I went to see him today and expressed my concerns re b12 which was 244 he said it is not that I asked for a instrict factor test as I have family history of pa but he refused in fact he lied and said I had been tested for this before I know I haven't because I always check my blood forms he said he would write to my endo as he thinks this can be caused by graves when I said it wasn't a known graves symptom it's very rare he has given me a anther prescription

For my leg as amyltriplin hasn't made any difference

I can out feeling like he said there there there's nothing wrong go away I really feel like not bothering anymore and accepting this is my life now

3 Replies

  • I'm very sorry to hear that, Rush, what a mess, but what you should never do is let these people bully you out of getting the best health treatment you can. Rest assured, you have low B12 and because you have neurological symptoms you really need to get more assertive with them about it.

    Get yourself a copy of the NICE guidelines for B12 deficiency and show them to your doc. Just type NICE and B12 deficiency into Google and it will turn them up. On there you will see clearly that docs are not supposed to go only by the blood test. If you are showing symptoms, as you are, you have the right to be treated. Guilt trip your doctor and make it clear that it is irreversible if they leave it untreated - does he really want to be held responsible for you having irreversible nerve damage when B12 injections are so cheap and harmless?

    Also point out that in Japan the lower limit is 500, well above what you are, so by Japanese standards you are well deficient. Likewise, many B12 experts feel this is the limit all tests should be held to, as the UK standards are far too low. There is a lot of research out there on B12 that you can quote him. If you don't have it, borrow or buy Sally Pacholok's book: 'Could it Be B12?'. This will equip you much better to fight your own corner. Also if you have a family history of PA you are quite right to insist on an IF test - don't accept a no on this. Ask to see the test if he insists it was done. Don't be fobbed off.

    I know right now you want to give up. I feel this every time I leave my doctor's - no kidding! They want you to feel like this, so you will give up and go away and not bother them. Don't succumb! What you need to do is get yourself well-informed so that you have answers for him. Make it harder for him to ignore you. Also, if you haven't already done it, join the PA forum - they will give you lots of info on what to quote at your doc.

    Good luck! X

    P.S. Neurologists are useless with B12. You'd think they'd know about it but they don't. The last one I saw knew nothing about it at all, and I had to tell him about the connections between it and my illness. He didn't believe me and Googled it in front of me and was surprised to see it was true. So, don't trust that he knows what he is talking about - they don't!

  • Thank you so much for your reply I really was feeling really down

    I do no I'm not alone with this problem just by the amount of posts on this site most of the time sometimes I just feel angry about it all

    Then I feel sad we are all going through all this but yesterday I just felt

    Despair I'm not a very assertive person and my husband is just recovering from major surgery so I just feel guilty all the time about feeling so crap I'm seeing my endo again in 3 weeks so I will try again with him it's like we have to get up dust ourselves and fight all over again

  • I know exactly how you feel, Rush. I spend a lot of my time alternating between fury, resentment and frustration. You feel docs should take care of you and want to do the best by you and when they don't, which is most of the time, you feel terribly let down by them. You also feel resentful that life is quite hard enough when you are ill without having to fight your doc, who is supposed to be on your side.

    Unfortunately you have to be your own best friend, which is very hard when you really want someone else to take care of you! But you really have to be a parent to yourself and take responsibility for your health because no-one else is going to fight for you. And you are in a doubly bad position because your hubby is too sick to fight for you, so you need to be your own advocate.

    I can be assertive most of the time, but I do have a problem with confrontation. This means I am quite good at asking for what I want, but if the doc disagrees with me, and I have to fight him, that stresses me out awfully. Plus I'm always frightened I'll just lose my temper one day and tell him what I think of him - or worse, punch him. Not helpful!

    Please try not to feel guilty. I know it's easier said than done, but you have absolutely nothing to feel guilty about. You cannot help being sick - and TIRED - so do not blame yourself for it. It's just bad luck.

    The real secret with your doc is to be well-informed. Have it all there in front of you, in writing. Take copies you can give to him. Make sure you have the answers, good reasons for why you want the treatment. That way it is MUCH harder from them to shrug it off. If they try to, just stop them politely and say "I'm sorry, I'm not happy about that" and make them discuss it with you. You don't need to raise your voice or be rude, just firm.

    The very best of luck with it all. I'll keep my fingers crossed for you.

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