Hi,
I have had my b12 deficiency for over 10 years. I have become more tired and constantly feel exhausted. I do have my injection every 12 weeks. I have told my doctors but being a mum of two the just say yes down to that as levels are normal. Even if I do get good night I just feel very tired struggle to get out of bed by lunchtime I'm knackered. This is making me very grumpy and short tempted. Does anyone else feel like this or can it be something else.
Thanks
Shelley
It could be other things too, of course, but lots of us need b12 more often than every 12 weeks. Would your GP be willing to consider that?
Hello, have you been diagnosed with PA? If so, you may need to take higher does of B12. I was diagnosed with PA almost 20 years ago and started off taking the injections every week, then every month, now for the past 15 years or so every 3 months. Like you I was very run down and felt constantly light headed. Even after 8 hours of sleep I would wake up sluggish.
I worked with my GP for years to get my levels right. It was a hard struggle and even now almost 20 years later sometimes (not often though) I just feel so out of it, like I’ve just run a race and all I’ve done is wake up and start my normal day. Hope you can work with your GP to get you some relief soon.
Best
I was very similar for the first year or so of my treatment. I wasn’t given loading doses but went straight into injections every 2 months. I’d find I felt better for 6 weeks or so and then my energy levels would plummet in the run up to the next injection. Having to run around with my children, picking them up and dropping them off to activities could reduce me to tears I was so exhausted.
My GP allowed me to have monthly injections as a trial and fortunately he still honours that repeat prescription a couple of years down the line. That very much improved how I felt and kept me and my life on a more even keel.
However, I’d say that I really got my life back to the full when I started self injecting on a weekly basis and I haven’t looked back since.
So based on my experience I’d recommend that you ask your GP to increase your injection frequency to 2 monthly (assuming you’re in the UK guidelines recently changed to allow this). See how that goes but if you don’t pick up I’d ask for monthly and then maybe consider more frequently if that still isn’t the answer.
On this forum there are many people who are unable to cope with the injection frequency provided by the NHS who, as a result, self inject as I do.
Thanks everyone I am going to doctors Monday I will see if they will increase my injections even with normal levels. I have 1ml every 3 months. Hopefully I can get though to the doctor that it's not just being a mum that is making me tired.
‘Normal levels’ do not apply once you’re on injections. Hence guidelines say that levels should not be tested once injections have started.
I would mention though that if your level is only within the normal range that’s probably who you’re feeling as you do. My level is now >2,000 (the level to which they measure results). This seems to be ‘normal’ for people on injections from what I’ve read on this forum. (Many of us have had a gp test levels when they really shouldn’t have).
Thank you JanD maybe doctors do thinking different around UK. I now when I was in Bristol city council I had to pay for my injections. When I more to South Glos I didn't. Mad as still have BS postcode! Hopefully I can get through to doctors how exhausted I am and it not just from lack of sleep every now and then. Is been getting worse over the years. But always get told I have normal levels. To be honest I have never been told any on the side effects of a long term deficiency. When I was diagnosed all my levels were 17-19 was told should be in 200's!
Hi, 1 ml every 3 months is not enough. You have to self inject. I have polyneuropathy because of B12 deficiency and I self inject 1 ml every other day. I could not walk alone with great tiredness 4 years ago, now I feel much better. I am not medicaly trained person, but I am sure that B12 is my medicine. Be happy and believe in you and the nature.
I was diagnosed 10 years ago and was on 3 monthly, then got it every 8 weeks and then they agreed to every 6 weeks (for approx 2 years). But at my last appointment the nurse advised the GP's had changed it back to 3 months, no consultation or reason, and I have felt terrible, tired, brain ceased working/brain fog, breathless which were all symptoms prior to treatment. I have an appointment Friday to get next injection and see Dr but have made the decision to self inject as I'm not willing to be made to suffer for the sake of an injection that costs pence (have bought all of thestuff and works out about 80p an injection!) Hope you get success when you speak to the Dr
why am I B12 deficient?
Just bone tired!
Am I getting the correct injections.
