Hi everyone, this forum has been very helpful for me up to now and I think you are all excellent at getting the information across as I am really at my wits end with my doctors.
I was diagnosed with low b12 levels in June 2018, my reading was 181, however I had been tested 4 years before and had a reading of 161 so essentially I had been deficient for 4 years with no help. Once the GP discovered this in June 2018 I was told I would have loading injections and then 3 monthly injections for life. I had my loading injections in July, then my first 3 month injection in October. After my first injection I had a blood test and on 11 October my reading was 369 (normal)......after this, my symptoms have been getting worse as follows (I know you've heard them all before so apologies):
Extreme tiredness and fatigue (can have 8 hours sleep and still have a 3 hour nap in the afternoon - unless I'm at work when I just have to suffer through!)
Tingling in legs and arms
Lack of concentration
Short term memory loss - this is particularly worrying me as it is affecting my job, I noticed it most when I was at a quiz night and couldn't recall the last question that had been asked each time (just an example!)
Palpitations and tight chest
Breathlessness
Bad immune system - keep getting colds, had 2 in 3 weeks
I mentioned all these symptoms to my GP on Tuesday mentioning I'm worried it's all related to my b12 deficiency, she took one look at the screen and said my b12 is fine (I then had to tell her it's fine because I had an injection in October but I'm on them for life) - I was really upset at this point, in tears, as I had been talking about the memory issues and being constantly tired, etc. and she basically said she thinks I might be depressed (!!!).
She agreed to do some more blood tests and I have just checked the results which read as abnormal at 1099 - has anyone experienced this? I assumed my levels had dropped right down again (hence the symptoms I've been having) and I might need injections more often so for it to have gone up so high is quite a shock to me and I don't understand why this could have happened, surely in a normal situation the levels would go up after an injection then gradually come down until the next injection?
I apologies for such a long essay, I'm just so confused and worried on the basis the doctors don't seem to take any of this seriously!
Thank you so much in advance (and for all the information I have seen so far).
Nicola
My daughter has this problem. She started much lower at 93 B12 level but a year in feels really tired ect before next injection. For her, folate was the problem. She takes supplements now as they kept stopping and starting her.
Also gave you tried another doctor?
It is very annoying when offered antidepressants if it is the physical health you want to get right then you won't feel down! !
I was prescribed prozac as must've been presenting as depressed before the blood test result I actually got them! but have not taken them now I know B12 106. So have had first loading dose instead.!!
I can't read your printed sheet of tests.
Look up each one to check the normal level. Also if yoor Hb low too what are you taking for that? Nutritionists can be helpful.
Hope you find the right regime soon
Hi, thank you for getting back to me. I was told my folate was low so I've been taking folic acid tablets that the GP prescribed for that and it seems to be back to a normal level. Sorry, I'm not sure what you mean by Hb?
I'm definitely not depressed, like you say, I'd be completely happy if it wasn't for feeling rubbish all the time!
I have tried a few doctors at the same surgery (although they are mostly locums!) - the one before this week said that folate and b12 don't work together so can't be that that's making me feel bad (I instantly lost faith in him) and the one this week told me that if my b12 levels are now normal (i.e. when she read it at 369) then I should be feeling fine and it doesn't take time to feel better (clueless I presume from what I've been reading here?).
I just feel completely lost to be honest - it will be interesting to see if the Dr contacts me to go in about my high b12 level or whether I have to get in touch with them first