Blood results reveal deficient in vit B12: I had a call... - NRAS

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Blood results reveal deficient in vit B12

Moomin8 profile image
20 Replies

I had a call from the doc's today to say there's a prescription for vit B12 tabs for me to pick up after my blood tests on Monday. I asked for my vitamins, minerals and cholesterol to be checked along with my 4 weekly blood check following some of what you guys have mentioned on here. I'm so glad I did! It makes sense of my extreme tiredness, dizziness, ridged nails, lack of sleep, forgetfulness ...and the list goes on! I know a lot of these are also symptoms of RA....I find it all soooo confusing 😕

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Moomin8
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20 Replies
medway-lady profile image
medway-lady

I had tablets and the Haemotologist stopped them in favour of injections. B12 is serious and in my case the RA consultant picked up my pernicious anaemia before it got serious but the tablets didn't really do much good whilst the injections are great. So please keep an eye on things and if you don't feel better do ask for the injections.

Moomin8 profile image
Moomin8 in reply tomedway-lady

I'd rather have injections but I haven't actually seen the doc face to face yet. I have an appointment next week when I'll have to ask for more time of work due to how I am atm 😕I'll ask him then- he's only going by the blood results. I asked the receptionist when she rang for the actual result that brought him to his conclusion - she wasn't sure- he'd just scribbled what she thought was 154...

hedgehog45 profile image
hedgehog45 in reply tomedway-lady

Interesting to hear your comments about b12 and pernicious anaemia. Forgive my ignorance but is the b12 deficiency common to rheumatoid patients? I'm newly diagnosed with RA and wondering if I should get a test for PA done as my mother who has RA was diagnosed with PA very late in the day after a long time of guesswork. She's been a lot better since the injections. I wonder whether it's best to keep a close eye on the b12 to prevent problems arising if it's a common thing amongst RA sufferers. Do you know or have been advised on this?

Moomin8 profile image
Moomin8 in reply tohedgehog45

Hi,

To be honest, from reading about others' experiences on here, I asked my gp to include a check of my cholesterol and vits and minerals along with my 4wks into mtx blood test. I'm feeling more and extreme tiredness, plus a load more symptoms which are listed under b12 deficiency. The trouble is mtx and RA can induce and exasperate the same symptoms. Better safe than sorry - I'm picking the rest of my results up today...

medway-lady profile image
medway-lady in reply tohedgehog45

It is just another facet of auto immune disease and my gp also said thats pulmonary embolisms and dvt's are as well. I've had both at the same time and so saw a haemotologist in Oct 14. But it was the blood tests done by the RA consultant that found the PA. Never looked back , it'll be found anyway when they do a full blood count they discovered I was Celiac and that was a shock but its no problem really.Feel tons better but no harm in you asking and if in any doubt you should anyway. Good luck.

nomoreheels profile image
nomoreheels

I'm pleased you were listened to & tests taken. It's so simple to add on to when you have your drug monitoring bloods. My Practices nurses (& health care assistants) see the notes flagged up on the screen & order my levels annually plus a CV check. B12 deficiency would account for some of the symptoms you've mentioned but it's not something to just leave if you're deficient for any length of time & it can take a while to correct so if you don't feel any or little benefit within say a month do let them know. It's quite normal to inject first but they must have their reasons, it's possible your levels aren't overly low. Did they question your meds or suggest you should have a re-test in the near future?

I know many of the symptoms could be mistaken for RD, it does make things difficult doesn't it? You'll soon get to know when something's amiss, it's not easy in the beginning, not only does having the disease make us question everything in the early days but so do the meds.

Moomin8 profile image
Moomin8 in reply tonomoreheels

Thanks- yes I will ensure they get retested at my 8 week check. I will discuss the whole picture when I see my rheumatologist at the end of March- my list of questions is growing! !

2plus2 profile image
2plus2

I was diagnosed with B12 deficiency just before Christmas. I had the course of injections and I'm now on daily tablets.

I had the blood test to see if it was PA but it wasn't. Just my bowel not absorbing it properly. More investigations into this to come.

I put all the B12 symptoms down to my arthritis. I now Feel much better after the injections.

Moomin8 profile image
Moomin8 in reply to2plus2

Hi

I'm pleased to read that you feel better after topping up on b12...I'm hoping it's going to pick me up and eleviate some symptoms - albeit no solution to the big picture. My skin is sore to touch atm and I am really hoping this is related to the b12 and becomes less painful.

What extra test did you need for PA? I'm fed up with people telling me I look : yellow, green, white....allthe colours of the rainbow lol..😆

NicolaP profile image
NicolaP

I've just had a second B12 test and its dropped from 167 before Christmas to 143. There is a history of pernicious anaemia in my father's family, both he and my sister were tested for B12 last year and had results in the 160s but their Intrinsic Factor wasn't tested for PA. My IF was tested the other week and came back normal so my GP thinks its medication related. I suspect that Omeprazole has something to do with it. I was put on 20mg twice a day when first diagnosed with RA and its not been reduced. Seeing GP next week to discuss with the intention of starting B12 injections. I suspect my Omprazole dosage will be lowed, although I hope he doesn't remove it completely because my gastric flux issues have been so much better since I was put on it. We'll see. At least my GP is taking notice of it, my sister, because of other issues she had, was sent by her GP (different surgery to mine) for tests for MS, but thankfully those have come back as unlikely but he's not interested in the B12 issue and she decided herself to start using a B12 spray which has improved some problems she had. In my father's case, GP wasn't even interested even at 165 even though my grandmother had PA and Dad's brother has to have B12 injections, don't think he has PA just very low B12. Seems to depend a lot on the GP. I pushed for B12 to be tested when Dad's came back as 165. I've had chronic iron anaemia for some time and its been masking the B12 deficiency in the standard test results for probably a while. Hopefully things will now start to improve. I've had some symptoms that could have been B12 but are also symptoms of RA or side effects of other drugs. Bit of a mind field unfortunately.

Hope things improve for you.

Moomin8 profile image
Moomin8 in reply toNicolaP

Minefield indeed! Just got back from the doc's and she said 154 wasn't particularly low and take the 50 mg b12 tablets daily- she'll take another test on 3 months! I also take 20mg omeprazole if I'm to take naproxen which I try and avoid doing every day. She said this has no effect on my b12? My cholesterol, which I also requested to be checked, is too high😕However, I made sure it was broken down into good (hdl) and bad (ldl) cholesterol - hdl- 2.12 ldl- 4.87 so basically both high!!! 😕She's going to get them done iagain n 3 months and try to avoid yet another tablet!!! What a pain....

nomoreheels profile image
nomoreheels in reply toMoomin8

No, that's good, it's not that much under a normal level but still enough to be flagged up. I would expect a retest in 3 months should be adequate enough to see how you respond to the B12 tablet. Your GP & mine don't agree about omeprazole I'm afraid, "All healthcare workers should be made aware of the potential clinical complications of omeprazole-associated vitamin B12 deficiency since it may go unrecognized and is easily corrected." You'll find this quote within this

PubMed link ncbi.nlm.nih.gov/pubmed/103...

Your cholesterol isn't much different to my first test, though you don't give your triglycerides. The guidelines (& scale) are different for us being higher risk & a 3 months re-test is again quite normal. My GP recommended using that 3 months to try to reduce my level (especially my LDL) by diet, paying particular attention to saturated fat intake. Unfortunately despite being very good & following her plan my next test was higher in all 3 so meds it had to be. Maybe you could use this period until your next cholesterol test to see if you could reduce it by diet (if you wish to keep a close or closer eye on your sat fat intake, just because it didn't work for me it doesn't mean it won't for you!). My latest test done a couple of months ago is bob on & I only take 1 x10mg atorvastatin nocte. I still watch my sat fat I take but not so rigidly.

It's all a pain I know but necessary if we're to stay as heart healthy as we can with RD. x ;)

nomoreheels profile image
nomoreheels in reply toNicolaP

I think you're right to question if your omeprazole, or even another of your regular meds, could be the cause. My h has been taken off omeprazole & now takes ranitidine & Gaviscon though is struggling somewhat, it's in his notes he's not to be prescribed any of the "prazole" meds again. He became anaemic following 2 quite major ops last year, has tried folic acid, ferrous sulphate & ferrous fumarate to no avail & eventually given 2 iron & magnesium infusions. He's under Gastro who are reasonably sure there's no internal bleeding, I'm not confident that his most recent scopes taken 3 months ago are to be relied on though he is down for further (different) scopes. He's also calcium deficient, again attributed to his previous 40mg daily omeprazole.

I hope you show improvement but if you don't please do push for further investigations. If I hadn't insisted my h saw my GP he would still be at stale mate & quite poorly.

Moomin8 profile image
Moomin8 in reply tonomoreheels

I will check it all again when I visit my rheumatologist end of March. So much of this is down to opinion...that's the worry! Hope you and your h are well today..it's freezing out there brrrrr...😨

nomoreheels profile image
nomoreheels in reply toMoomin8

Yes though your Rheumy & GP both share your care. GP needs to be guided by your Rheumy & bear in mind we are at higher risk in some aspects of primary care, not the norm if you like.

I've been doing the ironing most of the afternoon! I let it go & my h did the last lot & he shouldn't have to do it so it's 15 mins ironing & a 5 min break but I came on here so behind now! H is on his way to the airport to pick up his dad. He'll find it cold as he's been in mid 20˚warmth for 6 weeks!

NicolaP profile image
NicolaP in reply tonomoreheels

I was originally prescribed 2x20mg Omeprazole daily when I was put on Naproxin prior to RA diagnosis, and then when on prednisalone. My then GP was well aware of my problems with an irritated stomach lining (have been seen by Gastro previously who simply told be to avoid any food that agrevated it) and gastric flux. Omeprazole has been such a saviour that I shall really be reluctant to be taken off it completely, particularly as a chest xray I had in August before starting Biologics suggested I may well have a haetus hernia. I've tried Zantac, which is ranitidine, in the past prior to developing RA and its made little difference to the gastric flux and stomach problems. What I find surprising is that my B12 has dropped from 167 in Dec to 143 now, yet I've been on Omeprazole for 5.5 years. I know it takes time for the B12 to drop, but somehow I doubt its just Omeprazole that's causing the issue. Mind you my GP wrote to my Rheumi after the initial test and his response was he didn't think Simponi and Sulphsalazine would cause the problem (I've been off MTX for 6 months), but it does make me wonder if Simponi has aggrevated the problem. Its a shame the standard Hb test can't show both Iron and B12/Folate deficiency, my results have shown that if you are iron deficient it will mask the B12. My Folate levels are normal. Mind you I was borderline iron deficient for some years prior to developing RA, and the inflamation levels have caused it to become chronic. It does though fluctate depending on the level of inflamation so as the ESR/CRP are now heading in the right direction, hopefully that will improve. Have to see what the GP says next week but I will be trying my hardest to avoid being taken off Omprazole because I know full well what's going to happen, hopefully halving the dose to 20mg per day will help. I suspect it should have been done some time back but nobody at the surgery, or for that matter at the hospital, has said anything.

nomoreheels profile image
nomoreheels in reply toNicolaP

It's difficult isn't it? My h was also taking 40mg & doing well gastro wise. Like you he was also on ranitidine & Gaviscon many years ago & changed to omeprazole with success. Thing is now he has no option & can't go back on it. He's had many historical gastro problems, numerous polyps removed & ulcers but it's finding something that controls his reflux & other issues yet doesn't affect his levels or upset the boat comfort wise. Hopefully further investigations will reveal the culprit & he can be comfortable in one area at least.

As you say it's a minefield...to say the least. I hope you're problems are sorted with the reduction in dose, seems you've a battle ahead. :(

NicolaP profile image
NicolaP in reply tonomoreheels

I hope they manage to find your husband something better to aid the problems. He definitely has worse gastro problems than I've ever had, but knowing how bad mine have been I can really emphathise. As you say, hopefully a reduction in Omeprazole may improve things for me. There does appear unfortunately to be a problem with B12 in my father's family so I'm hoping they'll bare this in mind when deciding what to do. I really don't want to have to go back to Zantac. My current GP is pretty good and I've had far more luck with him investigating than either my sister or father had with their GP. Unfortunately does look like the luck of the draw, some GPs are more informed than others.

nomoreheels profile image
nomoreheels in reply toNicolaP

Thank you. If you have symptoms of any condition which runs in the family you should be well monitored I believe. Hope things work out for you. I'd hang on to your GP, sounds as as though like me you've one of the better ones, worth their weight. :)

Moomin8 profile image
Moomin8

Well- gave on and bought 1000mcg sublingual methylcobalamin today. Just hoping it won't react with methotrexate and folic acid - presuming not as gp prescribed cyanocobalamin! Would rather take methylcobalamin.

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