A little success & perhaps one doctor might just read into this debilitating condition

Well, after all the hassle trying to get to see my doctor, I had an appointment today. Thanks to all the information on this website I was able to put my case forward in a strong and informed way. I do not have PA and doc says my levels of 550 were fine (not so after loading doses). I showed her photos of the red lesions (kinda like bruises but red) on my legs (mostly left leg) which fade slowly and don't go yellow & blue like bruises do. I saw a pic of these somewhere on a B12 deficiency site but can't find it again. She is completely perplexed by these and is going to find out what they may be.I also told her I am not happy to be having the tingling, burning in my feet and hands,2 numb toes, staggering,exhaustion (& memory loss that I was experiencing previous to my loading doses). She was very good, as it turns out, because I was able to quote the NICE guidelines re neurological symptoms. She looked them up and said she hadn't been aware these symptoms had been so bad. (I had been to anoother doctor in this practise 3 years ago with the same symptoms .She put me on blood pressure tablets saying this would help the freezing cold/tingling,painful feet & hands ! I went back after a couple of months and said they weren't helping, so she just took me off them & that was that !). I asked her nicely if she would be interested in reading " Could it be B12 ?" and asked me once again what it was called. I genuinely think she will read this as she said her dissertation had been on B12 as a student. Hopefully one doctor might be educated on this subject, as she gave me the classic line "we don't want to give you too much". All credit to the woman....she gave me an injection this afternoon, has booked me in for another next week, then monthly for a while to see how things go...RESULT !. I genuinely can't thank you all enough for your support and encouragement to sit and give the facts to my doctor and insist on treating my symptoms and not the score. Maybe my mind won't desert me now either as I was forgetting so much to the point where it was really worrying me. x

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13 Replies

  • Well done peggylally66. It is so difficult to challenge the ignorance of doctors when one is feeling low . If you can't get the injections you need, you may have to think about self-injection. We are all here to support you!

  • Good news, you have hopefully done a good deed for future patients. It makes so much difference when someone actually listens.

  • oh well done - and now there is at least one gp who knows a bit about b12. Did she really say her dissertation was on b12! Ha! says it all.

  • see yeseterdays posts and videos on b12-levels , may look fine but gene mutations may not allow absorbtion iposted some info on nhs of levels ok bu tnot absorbing.

  • Well done you. This is exactly what we need to happen and the best way to help our cause.

  • One more doctor down - sadly many hundreds more to "educate".

    Thanks Peggylally66 and well done!

  • I have been told by 2 gps that numbness and tingling in the feet etc only happens rarely if your B12 levels are very low and have been for a while. I had the argument about normal range with another gp who has allowed me to have 6 loading injections, but haven't felt much improvement in feet, fewer palpitations, slight improvement in the 'sighs'. My level was 118. I have had the tingling etc for well over a year as I found it difficult to explain the feeling, and hadn't heard of B12 till my sister was diagnosed in the US. Could it be that this is permanent, or do I need to argue for more injections ( won't be easy but I have bought some sublinguals) The list of symptoms doesn't suggest that this is rare and many people seem to have it.

  • What do you mean by sighs?

  • Odd breathing which tends to sound like you're sighing or gasping. Martyn Hooper describes it well and identifies it as a regular symptom which has just been described as breathlessness before. Again I found it difficult to describe it to doctors, but thought it might relate to a lung injury I had 3 yrs ago, until I saw the description written down.

  • When I was first diagnosed with PA I was reading out the list of symptoms and I got to the 'sighs'. Immediately I was told - "Blimey. That's you. And it's so annoying."

    Every time I sat down anywhere, I would, unknowingly, let out this deep sigh. It sounded like I was totally fed up with the world.

    I was one of the earliest symptoms to go - and my friends were highly relieved when it did.

  • Great that you made the effort to educate your GP especially when you must be feeling exhausted at times.

    Perhaps your GP would like to read "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper which is up to date with current UK Guidelines. i gave a copy of this to my GPs and I also gave them a copy of the "BCSH Cobalamin and Folate Guidelines".

    fbirder has a summary of mainly UK Guidelines and I think he mentions in the summary a phone app that counts towards GP training credits.

    Think its the same thing mentioned on Martyn Hooper's blog


  • I'd be interested to hear what the red bruisy things are as I have had them too... Mainly on my arms... Good for you too re GP 😊 hopefully someone will know what the red bruisy thing is

  • Thats great news. I have a few red lesions on my left ankle, reading your post has got me thinking I need my B12 levels checked. Thank you.

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