Vitamin B12: Just a query I was first diagnosed with RA... - NRAS

NRAS
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Vitamin B12

Sheenadon594
Sheenadon594

Just a query

I was first diagnosed with RA back in 2004 & after several years of treatment I was discharged but unfortunately it has reared it’s ugly head again. I am now under the same consultant and am due to see him again in about two months. I,m taking sulphasalazine and have had three steroid injections & am currently free from any pain, however I,m still extremely stiff and suffering from extreme fatigue.

Just wondering if anyone on here with RA, has been diagnosed with a lack of vitamin B12.

20 Replies
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When you have your blood tests Vit B12 deficiency usually shows itself in the larger than normal blood cells in your blood film. If your blood cells are normal, it's unlikely to be a problem.

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No, I haven’t but I have been tested in the past.

I have OA & been having B12 shots for past 18mths, due for another shot tomorrow morning, definitely feel the difference when it kicks in.

I have RA and Lupus and have a B12 deficiency. I was given 3 monthly injections for a year as I was told I couldn’t absorb B12 through my stomach. I was then re-tested and was told I could absorb B12 and the injections were stopped. I now take a supplement in spray form.

Having had RA for nearly 40 years I have gone through many bouts of extreme fatigue so it could be your RA? Certainly won’t do any harm to have your B12 tested.

Good luck and I hope you get an answer to your fatigue.

X

Thanks for all the comments. I can’t remember being so absolutely worn out last time I was suffering with RA. I think I will go to GP & get it checked.

I actually asked my gp to check Vit B12 last month.(to be fair at first I presumed it was done as part of my routine bloods).it came back low and I was given 6loading injections over 2wks.nurse said it would probably now mean that I would get injections every 3months but gp would let me know as one test taken that they needed from the first bloods takes a few weeks for results to come back.

Oh I thought it might have been checked with normal bloods as well. Just sat down in armchair about an hour ago, for five minutes, and I,ve been asleep for three quarters of an hour. This happens regularly. 😫

That's exactly what I used to do, several times a day, struggling to wake up after a '5mins' nap. 😴

Very rarely happens now.

Yes I have b12 definchey I'm on b12 injections for life .always had the symptoms but gp done nothing .rheumatologist kept me in hospital as my ESR was 115 he got tests done for b12 put straight into injections .amy

Yes, I have b12 every 12 weeks, and have been for around 5/6 years.

Was only diagnosed with RA 18 months ago though x

Last time I had a full blood count.. It said B12 border line, and suggested retesting and if still the same I should get it checked out.. But when I pointed this out to the gp.. He sort of' poo pooed 'it..

I've to see him on Monday re steroid taper.. Should I bring it up again?

Yes I would, don't let it be ignored by your GP, stand your ground.

Thank you, I'll do that..

I had b12 deficiency, it was very low. It actually showed up with painful tingly nerves and numbness. I’m also hypothyroid and without medication that can cause extreme exhaustion. Don’t know how old u are but that can pop up later in life! It’s also an autoimmune condition and sadly goes hand in hand. Medication is easy for it though. Hope u get to the bottom of your exhaustion!

If you take B12 supplement and you don't need it I understand you can tell by the colour of your urine as your body gets rid of excess?

My Rheummy said I was fine but I take a spray now.

I have been on B12 inj for years now every 3 months. I inherited it from my late Mother. I was diagnosed with RA 20 months ago, in my case the two were not related. However since the RA and extra fatigue I now have my B12 every 2 months with my GP's blessing.

Sheenadon594
Sheenadon594
in reply to QAGS

Well I know my grandmother had pernicious anaemia. That was a very long time ago but now thinking there might be something in my genetic makeup.

Thanks everyone. I,ve made an appointment with my GP so will see how that goes.

If you suffer from iron anaemia its worth bearing in mind that you could suffer also from B12 and it won't show in the size of cell. That happened to me and my GP insisted I couldn't possible be B12 anaemic too and wouldn't agree to test. Eventually one of the other GPs agreed to test when I asked how it would show if I was both (there is an issue within the family with B12) and she couldn't answer it. Result came back at the level where I should have automatically been offered injections under NICE guidelines but the GP wouldn't as still sceptical and gave me a maintenance dose of tablets instead, which I actually had a reaction to (there are 3 types of B12). In the end I started using a sublingual spray (different type of B12 to the tablets) and it went up above the NICE recommended levels, although overseas that is still considered low. I have a tendency to forget to take it so its not gone up that high but hasn't dropped to the level it was at when first tested. I think being on a PPI may have affected the absorption and now I only take one every few days unless having issues.

I’m B12, D & iron deficient.

Along with RA I also have Crohns and

my body has problems with malabsorption because of my Crohn’s disease. You can get injections and infusions. These things did not affect my RA, didn’t make it better or worse.

Bringing my iron up has stopped my heart palpitations and SOB ( shortness of breath) random bleeding through my skin, development of psoriasis, passing out...

Really I suffered for a year and a half and none of my doctors even noticed even though they tested my levels. I was put through very invasive and expensive heart tests, including radiation for no reason.

How did I fall through the cracks? unfortunately different doctors read blood tests differently.

My PCP read my blood tests and said my iron levels were fine.

My Gastroenterologist read my blood tests and said I’m anemic.

I asked my Rheumatologist how can two doctors have such different opinions reading the same blood test?

I was advised to consider finding a new pcp as mine clearly does not know how to read a blood test.

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