Had Enough : I was diagnosed with b1... - Pernicious Anaemi...

Pernicious Anaemia Society
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Had Enough

Dawn45
Dawn45

I was diagnosed with b12 anaemia in april my levels were 28 I kept going doctors but they fobbed me off for 2 years previous my legs feet are so bad got worse constant pain has anyone got better ? I'm thinking of leaving work I still have no energy and I'm only 45.. I can't even walk for 5 minutes had large nerve damage test said no damage got to have small nerve damage test now but waiting for appointment what if they find nothing is it all in my head

11 Replies
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Hi Dawn that sounds horrible b12 level of 28.... your in the danger zone surely! Not sure where your from, but can I suggest trying to see a specialist consultant or DIY - buy b12 and inject yourself?

No Dawn, it isn't in your head. Even if the tests don't show anything. Tests are not infallible. Lots of people test negative for things and actually are ill, often seriously.

If you have PA and your level was that low you need B12 injections. You should have had ferritin and folate tested at the same time as B12. You can ask to see your medical records and test results.

I would think about changing to a different GP practice if you have the option.

Look at the pinned posts to the side of this page and read the information there. Join the Pernicious Anaemia Society if you need more help and advice.

Dawn45
Dawn45
in reply to Frodo

Thank you my doctor had just confirmed he will give me monthly injections and I will read posts thanks Frodo x

Dawn , your level is dangerously low , monthly injections are not enough , you need alternative day injections until no futher improvement along with co factors such as folic acid . This nice guidelines are often not followed by GP s . If you can order supplies on line I highly recommend self injecting as I’m convinced SI saved my husbands life / mobility etc . You could consider joining the fasebook group , Pernicious Anemea / b12 deficiency support group . They will guide you where to source supplies , videos on how to inject , co factors to help utilise b12 such as folic acid , etc . And excellent support and help . This group is also excellent for help and advice . My husbands b12 level was 150 18 months ago and he was extremely ill . Perhaps you could be signed off sick while your having injections to help you improve as you need to pace yourself . I agree you also need your ferritin and thyroid levels checked also . Best of luck with your recovery , it can take a while . I think nerve conduction tests only show pernament nerve damage , hopefully your nerve damage will improve with frequent b12 injections .

Dawn45
Dawn45
in reply to Annnon58

Thank you so much for replying I really apprictate it doctor rang and said he giving me more injections got to see him Monday.. I've been off work 4 months now I know I can't go back yet hope you're husband is much better now xx

Great news Dawn , I hope you are taking enough folic acid as it helps utilise b12 , and ask your doctor if you need iron tablets and for a print out of all your blood test results . All the best

Yes I am taking foilc tablets and I defanltly get a print out thank you once again x

Annnon58 is correct - you must have alternate day injections as per the guidelines which are even printed on the packet, I think! This should be until no further improvement (could be quite a while). You should be very careful or your damage could become permanent if you do not receive sufficient treatment. I had all the nerve tests but came out clear - BUT I still had sore feet etc so I began self injections and now 4 years later I inject every 4 days. In fact, my feet are one of the signs that I'm due for a jab. I'm still not doing my 6km walks of my previous life but I am so, so much better. Don't be afraid - self injection does not hurt - you just have to overcome the idea that it is ok to stick sharp objects into your thigh! I stronglt suggest that you keep adetailed diary while you have your treatment so youcan use your records to convince the Dr that you will need more. I lost lots of weeks/months waiting for the next shot when I was following my GP's regieme. Not good enough! Good luck. You will find many symptoms will improve - take those notes and someone with you to help argueyour case. A PA brain is a bit slow! And a Dr is less likely to fob two ppl off!

Thank you for you're advice x

Good advice all, I found fighting doctors for my husband very exhausting and upsetting . Much easier to order all supplies and get a relative or friend to do it for you or SI . Lots of videos to teach us on you tube , auto injectors make it easy , sub cut ( very fine small needle ) pain free . Takes time to get started and to research where to source supplies , practice injecting on an orange 💉 , lots of support on here.

Hello! I’m new to this and having to self inject. I bought an auto injectior thinking it was IM but it’s only SQ. will it still work? I have chronic limb loss because of the condition and so need to get the most out of the b12. Thanks! It’s all so confusing x

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