B12 deficiency

[Hapi72]

Hi, I have low Vitamin B12 and parietal cell antibodies and am due to start injections tomorrow. My GP thinks this is linked to RA, got a Rheumy appointment next week but would be interesting to know if others have this.

Thanks

Sarah

[nomoreheels]

I don't have personal experience but have been reading up quite a lot recently on haemoglobin & related problems due to my h having anaemia following an operation. Obviously having RD I focus on anything relating to autoimmunity & I've read many times that it's not uncommon, especially in vegans which I can understand if they aren't eating the foods where it's found naturally or supplementing with vitamins. In fact pernicious anaemia is itself classed as an autoimmune disease. What did particularly interest me was that long term use of ppi's can worsen B12 deficiency as my h has recently had his omeprazole increased to 40mg daily but I don't think it's relative to him.

I would think it will have been explained to you as you're starting injections that It is quite easily controlled but I would discuss it with your Rheumy definitely. Whilst your GP has been genned up enough to recognise what you have & how to treat it your it's your Rheumy who will be up to speed & should know what's necessary long term.

I'd be interested to hear how you get on if you'd be willing to share Sarah.

[Hapi72 in reply to nomoreheels]

Hi Nomoreheels,

Thanks for the reply, yes I will be happy to share, it would be nice to get proper informative info fro GPs and consultants rather than the standard "you have this, we'll give you this, come back in 3 months". It took many visits and moaning for them to test me for B12 and to be honest the symptom list is huge and has quite a bit of crossover with RD so I will also let you know how I respond to the injections.

Sarah.

[nomoreheels in reply to Hapi72]

Thank you. He sees his Surgeon on Tuesday so will discuss his problems then. He has typical symptoms & his nurse was quick witted enough to call one of the GP's in to double check her findings but the ferrous sulfate tablets prescribed have caused issues & even though he's now taking them differently to how first suggested it's still not getting to the root of the issue. I do hope you respond well to the injections & your Rheumy appointment goes well.

[nomoreheels in reply to nomoreheels]

Quick update, my h's GP phoned as he had his blood results taken on Tuesday. He's now on antibiotics & folic acid. Again, we'll see what his Surgeon says next week.

[earthwitch]

If you haven't ever been screened for coeliac disease, then it would be worth asking about that - as that can cause malabsorption problems and low levels of things like B12, folate, etc.

[shareasmile]

I have RD and I actually have high b12. Can't explain it as I have stopped all supplements with a hint of vit B and it still tested high. I am sero negative though. Not sure if that makes a difference in blood results or not.

[Hapi72]

Hmmm interesting, I wondered if taking omeprazole may have stopped absorption of b12. No more heels, glad hubby getting some treatment. Earth witch I was screened for coeliac yrs ago due to iron deficiency anaemia but I'm beginning to wonder if I've had b12d for yrs as I now know it can take yes before symptoms start showing and can cause joint pain so makes me wonder if my sero negative RD is that at all.....

[Emilyclare in reply to Hapi72]

About the time i was diagnosed i had low B12

I had the 5 injections to bring it back up and two years later it was low again. The injections made a huge difficerence to memory and energy etc. They don't know why it drops but test regularly and treat as needed.

They are well worth having.

[Hapi72]

Thank Emilyclare, I'm hoping they do make a difference to how I feel at the moment!

[Hapi72]

Hi all,

Well just come back from Rheumy appointment and he was not interested in B12 results at all, also think I have developed psoriasis on my elbows, not interested - bloods are fine, RD is mild and controlled, keep taking sulpha and add naproxen and omeprazole back in and come back in 6 months.....quickest appointment ever! Will wait and see what B12 jabs do, maybe not got RD at all?????

[nomoreheels in reply to Hapi72]

Sounds as though he was a bit disinterested full stop!

[Hapi72]

Yep, was hoping for answers but they are struggling for rheumatologists where I live, seen 3 different ones in a yr, each having a different opinion, some more interested in symptoms than bloods but this one seemed disinterested right from the start, think the whole appointment lasted all of 10 mins including the pre blood pressure and weight checks!

So disappointing that we have to struggle so much to get decent health care, I know I should be thankful for the NHS but please it should be a two way thing, surely we know our own bodies and when something isn't right??

How is your hubby?

[nomoreheels in reply to Hapi72]

It's disappointing I'm sure. There's a lot to be said in favour of continued care with one Rheumy, having had that in the past I much prefer it. I do see the same Rheumy at least but only once a year, except for my last appointment as she took my appointment because her Registrar was behind on appointments, otherwise it's a Registrar & need to go over my history each time.

My h is doing fine thanks, just this week had his 6 week post op check up ECG, x rays, blood tests etc& his Surgeon has discharged him from his care so all's well. That said his leg where they harvested the veins from has been angry & quite a blush colour around the wound but he's only this week stopped wearing his compression stockings during the day so it could be that causing the pain he has too, freedom! He sees the Practice Nurse for blood tests tomorrow so he'll no doubt show her & see what she makes of it. I asked him earlier on what his pain score would be & he said 93/4 for his leg 4 for his chest & 5 for his back so he must be getting better! Thanks for asking.