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Original poster

low b12

42 replies

Bonkerz · 07/11/2015 21:19

Anyone else had this?

I initially went to the GP about 3 months ago as I had blood in my stools and was suffering with diarrhoea quite bad. Was tested for crones and colitis but tests were inconclusive although they showed I had high iron and large red blood cells. I was retested which showed a B12 level of below 80 and doctor has put me on tablets for this. I'm due to go back for more bloods in Dec and to test my thyroid levels too but I'm really confused about what all this means.

OP posts:
PoshPenny · 07/11/2015 21:45

I think with levels that low you ought to be having b12 injections. It sounds like they're trying to find out why your levels are so low rather than just attempting to patch things up. There is a website, b12d.org that you may find useful.

Original poster
Bonkerz · 07/11/2015 21:47

Thanks for the reply will take a look.

It's all come out of the blue really as its not what I expected. I thought from my symptoms I had iBS but the GP dismissed this is minor compared to my b12 levels and the size of my red blood cells

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Ktay · 07/11/2015 21:49

Have they checked you for coeliac disease? This can go hand in hand w vitamin B12 deficiency.

Original poster
Bonkerz · 07/11/2015 22:34

Yes tests came back negative for crones so they tested coeliac which was negative as was liver function. I have high iron levels too.

Looked at that site recommended and I'm suffering a lot of things on the list. All small issues I'd never have gone docs with though like pins and needles/ restless leg/ dry sore skin/ disturbed vision/ swollen ankles and pain/ dizziness.

OP posts:
EldonAve · 07/11/2015 22:38

I would expect B12 injections not tablets
Also a camera down to your stomach and a camera up the bum to check for any absorption issues

Original poster
Bonkerz · 07/11/2015 22:42

Thank you. I've got bloods again on 9th December to see if tablets have helped raise my levels. I certainly don't feel any better but it's hard to tell really.

Gp did say she thought it was an absorption issue rather than a diet issue as my iron levels were higher than normal.

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Original poster
Bonkerz · 10/11/2015 15:48

Question for anyone who may know.
Past few days been suffering really bad with palpitations/dizzy and shaking spells after exercise (not rigorous) and also last night I was awake for hours with pins and needles in both hands and my legs were aching and I couldn't stretch out the feeling. Today my ankles are agony.
Could this be due to the low B12? I've had these symptoms before but not as bad as yesterday and last night.
I've been on cyano cobalamin 100mcg a day for 3 weeks now

OP posts:
EldonAve · 11/11/2015 21:29

pins and needles can be caused by low b12

Original poster
Bonkerz · 12/12/2015 10:31

Had bloods done last week and my results are still below 100 despite taking tablets daily for over 10 weeks now. Got docs on Monday and just don't know what to expect

OP posts:
Lonecatwithkitten · 12/12/2015 12:24

Have you been checked for antibodies to intrinsic factor. If you have these antibodies you could eat a bucket of B12 every day as it would make no difference - this is true pernicious anaemia. If you have pernicious anaemia you need the injections.

Original poster
Bonkerz · 12/12/2015 15:39

Thank you.
I think the last test was just the b12 and folate.
I guess I will find out more Monday morning now. I just want to start feeling better. All the jiggly annoying symptoms need to do one now because I'm tired

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MarkRuffaloCrumble · 12/12/2015 16:41

I buy sub lingual (under the tongue) B12 lozenges which have high doses of B12 which is absorbed though the thin skin under your tongue rather than your stomach lining.

Might be worth trying those (Jarrow are usually recommended as a good brand) instead of whatever your GP has given you.

I started off with the injections but these tablets seem to do just as well without the stinging and hassle of an injection! I also have thyroid issues, they seem to go together too.

WoodHeaven · 12/12/2015 16:45

I hope that the tablets have made a difference.

Otherwise please DEMAND that you get the vitB12 injections. Go and have a look on the NICE website. Print them, give them to your GP. The guidelines are clear and the injections should sart at every few weeks rather every 3 months.
80 is VERY low and saying that you should take tablets at the same time than saying it's an absorption issue is ConfusedConfused.
Surely if you can't take vitB12 from your diet, why should you be able to do that with tablets? Crazy.

Original poster
Bonkerz · 13/12/2015 09:52

I think that's what the gp wanted to establish by giving tablets that it wasn't a diet issue.
Appointment is at 9 am tomorrow so will update. Will also look at guidance. Thank you

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Original poster
Bonkerz · 14/12/2015 16:20

Level went from 89 to 128 so only small gain despite the tablets.

Doctor says its pernicious anemia.

Start loading doses next week. Having 2 weeks of 3 injections then will be 3 monthly. Also have to take folic acid. Where is best place to get these from as gp says its cheaper to buy than prescription.

OP posts:
Lonecatwithkitten · 14/12/2015 22:01

Your GP is missing a step nice guidelines require the testing for antibodies for intrinsic factor and it is also good practice to check for coeliac disease too.

Original poster
Bonkerz · 15/12/2015 06:59

I was checked for ceoliacs right at start and also the stomach acid (didn't know this till I asked GP). The B12 issue was only picked up because of testing for crones disease due to blood in my stools.

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MrsPinotGrigio · 15/12/2015 10:04

What tests have you had for Crohns? I had loads of tests in my 20s as I had bowel problems & was told the results were 'inconclusive' for IBD. 20 years later I was diagnosed with Crohns after years of pain. I have a B12 deficiency as I've had my terminal ileum removed so I don't absorb certain nutrients so I have injections every 12 weeks. Hope the injections help & you feel better soon Flowers

Original poster
Bonkerz · 15/12/2015 13:18

I had a stool sample test and blood test which showed IBD problem but apparently not crohns.
Still can't get to bottom of what causes my cramping and diarrhoea though. Seems to be non specific!

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pickleandflux · 15/12/2015 16:40

Iron levels can be falsely high due to inflammation, which could indicate inflammatory bowel problems (like Crohn's). Sounds like you might need to see a Gastroenterologist for further tests if things don't settle down. Stool samples and bloods can't properly exclude Crohn's/Ulcerative Colitis. If your bowels are still not right, you should go back and ask again.

MrsPinotGrigio · 15/12/2015 18:32

I was just going to say exactly what pickleandflux has said. You need to see a gastroenterologist - my blood tests were always ok & showed little or no inflammation until I had a massive flare 4 years ago which put me in hospital & unless the stool sample was for a faecal calprotectin test Crohns can't be ruled out. You should have at least been offered a colonoscopy and/or a CT. IBD (Crohns & Ulcerative Colitis) can be hard to diagnose but any change in bowel habits especially if there's blood or mucus in the stool should be investigated. Ask your GP for a referral its best to get it looked further into.

Original poster
Bonkerz · 15/12/2015 21:39

I guess the IBD issue has been pushed aside as this B12 issue was found. Seeing nurse on Tuesday for first jab and will express my concern for my bowel issues.
The pain is strange at moment. Have very bad cramps and almost period like pains in my back (I don't have periods!). Very loose stools :0(.

OP posts:
pickleandflux · 15/12/2015 21:54

Definitely go back to see your GP, as you are still having loose stools & pain. B12 deficiency is common in IBD for example. Pernicious anaemia doesn't explain your bowel symptoms, and this needs to be reviewed. If it were me, I would ask for a referral to a GI clinic. I hope you feel better soon.

wannabestressfree · 16/12/2015 05:33

It took a long time for me to be diagnosed with crohns... They only 'saw' it in surgery for appendicitus and I lost a large amount of bowel. I now have no large bowel and a colostomy and am waiting for movement of bag to the other side and removal of GIST (tumour).
I front load with injections of b12 and have them three monthly and it really helps. I really notice when I have had them....
Please push about your bowels. I definately wouldn't have been in this state had I have had an early diagnosis

whatnametopick · 21/12/2015 21:04

The tests you had cannot confirm crohns, it took a barium scan for mine to be diagnosed, you need to ask for a gastro referral and dont take no for an answer.