Hi everyone,
My second round of blood results are back and my B12 is now 119 pmol/L (previously 95 pmol/L) I haven’t had any treatment and haven’t changed my diet. I still feel absolutely awful.
Has anyone else experienced this? The surgery are ringing me at 7pm to discuss the findings. I’m so worried that they are now going to say I can’t have treatment and I’m back to square one of still feeling so tired and ill with no answers 😔
So, they just rang and the nurse that has been arranging my bloods has spoken to the duty doctor who says that they won’t treat it now it’s at 119 pmol/L. I am so fed up, in fact fed up doesn’t cover how I feel.
At 44 years old I can’t even get out of bed without being in agony. Can’t get up from a sitting position. I have blurred vision, swelling in my hands and legs and I am so unbelievably tired all the time.
I can’t begin to explain how down I feel right now.
That is unbelievable.
How come they didnt treat you the first time around?
Can you call back and say anything under 200 needs treating with injections asap. Snd if you don't get them then you demand another GP
They didn’t treat me the first time because they said they needed to do more tests before they could treat me. I think she was hoping I miraculously felt better. I’m on the list for a doctor to ring me tomorrow to discuss further options.
I’ve given up hope. Looking at my records my red blood cell count has been abnormal since 2015 and they’ve been telling me it was normal every time!
Hi, it says 119pmol/L range 115-1000 normal
Your result is barely in range and previously you had a result below range.
I don’t think I’d be satisfied with messages passed between the dr and nurse, I think you need a consultation. You are clearly unwell.
I would ask the doctor for a trial of B12 injections and I would also ask for a full investigation into why you are in agony when you sit up and why you have swelling in your hands and legs. I’ve not heard of these things being caused by B12d (I’m not saying they have or haven’t been, only that I haven’t heard that these are B12d symptoms).
Aaargh! It's so annoying.
Were they just going to keep repeating your bloods until they managed to get one that was barely above the lower limit?
The serum B12 test is neither precise, nor accurate. You could test the exact same sample twice and get the same numbers as you've got.
Write to your GP. Ask them to treat symptoms and not numbers. Include a copy of these guidelines from the British Committee for Standards in Haematology. Highlight the fourth of the key recommendations:
In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment.
And also the algorithm in Figure 1.
Thank you for your reply and the advice and information. It is really helpful. I didn’t consider that how I’m feeling had affected my mood but I now feel so low and defeated. I thought I might finally have a chance to feel well
I feel depressed just reading what you have been through, so I can imagine how you feel. I just find it totally wrong that someone in your situation is being denied a vitamin for the sake of a few digits, where in the case of b12 is neither here nor there. It's a case of how you feel. Have you anybody that can help you in supporting you with your surgery. Sometimes it takes another person who will challenge them into action.
Your level is incredibly low. It will not go up to adequate levels without supplementing.
You should consider getting injections going to raise your levels up well over 1000 and keep them there so your body can repair. If the NHS won't give you Injections, keep demanding. In the meantime order your own supplies and do them yourself..
Dear friend, you have to order b12 injections immediatelly ! Dont waste time. You have to learn to self inject ! I am not a medical person but i suffer very much. My b12 was 50 pmol/l in 2016 and i was walking with a great effort, now i am playing tennis on court, because of self shots. Be strong, dont hesitate ! Good luck !
B12
B12 
B12 supplements or B12 shots?
Teenager with B12 Deficiency - Help
