Vitamin B12 - Could somebody help?

[Emma82]

Hi All

This is my first time posting to this group although i have been an avid reader for a while now!

In November 2014, I was diagnosed with Crohns disease in the terminal ileum and procitis. My colonoscopy showed multiple ulcers in this area. My GI put me on Pentasa which I reacted badly too (with severe joint pain). I have now been taken off this and my joint pain has gone away. I am currently off all meds awaiting another appointmnet to discuss what to do.

On top of this, since December - I have been suffering a whole host of other symptoms which accoridng to my research are typical of a vitamain B12 defficiency. These include, a numb right cheek that comes and goes, pins and needles in my hands and feet, eye strain, red throat and tongue, fissures have appeared on my tongue, neck pain, pressure in back of neck/bottom of head, some chest/collar bone pain, popping ears.

I have had my B12 and folate tested. My B12 is 421 pg/ml. Folate (serum) is 11.6 ng/ml. I have been told its all in normal range. I asked my GI if he would complete the homocysteine and methylmalonic acid levels test but he said no they dont do that test anymore. But I have read this is a better indicator. I have read on this site that I should try to keep my B12 levels above 500 pg/mg.

I would be interested in hearing anyones feedback on if they think, at my current B12 levels, that I should keep pushing for more/accurate testing for this. I am off to see a neurologist to double check for anything else in the mean time.

Thank you all so much!

 

[DEmberton]

Welcome.

I'd read elsewhere that the NHS refuse to do the MMA and homocysteine tests but apparently you can get it done privately (Nuffield group and one other whose name I forget were mentioned).

Have you been getting injections, or taking supplements? Certain things can cause the serum B12 test to be inaccurate, and it only really measures what's floating around in your blood rather than the level that's in your tissues. On top of that there's different forms of B12 and the test can't tell the difference between them. Have you had Nitrous Oxide anaesthesia for any reason?

There's patches and lozenges you can buy pretty cheaply that don't mean relying on your TI to absorb it. Maybe you should try that - give yourself some fresh B12. And make sure it's methylcobalamin you're taking as that's the active form.

Having said all that, I wonder if your problems are as a result of the Pentasa, or some other deficiency.

 

[nogutsnoglory]

Can you get one of your doctor's to agree to try a b12 shot monthly to see if it helps you? If not you can try sublingual b12 on your own. The patches may work, there isn't much evidence one way or the other on those. It would be dependent on the delivery device.

 

[Emma82]

Thank you so much!

I had an IV sedation for the colonoscopy in November. I don't think that is NO. I was not supplementing prior to my blood test. I have looked online and found a private GP who will explore nutritional deficiencies In depth - I will try that.

I will try to convince my lovely GP to trial an injection for it too. I'm also supplementing now so will see how that goes. I wonder too if it could be a result of the Pentasa - I had a lot of improvement in my aches and pains when I come off it but pentasa causing numbness or tingling is not reported anywhere I don't think. I appreciate any other feedback anyone has.

 

[CrohnsChicago]

Hello,

My B12 number is around 300 pg/ml. It's not danger level, but it's very much on the lowest end of the spectrum for what is considered normal (I think 1100 is one of the reported high ranges if I remember correctly). I get symptoms very similar to yours (fatigue, tingling sensation in fingertips, foggy brain/inability to focus, popping ears, eye strain and other symptoms).

Even with the B12 injections I receive monthly (1cc per month), I can't manage to bring the number up and keep it there. The injections help me, and I definitely feel my energy get lower when it's nearing the time for a new injection.

Talk to your GI and/or your PCP and see if they are willing to give you the injection to see if it improves some of your symptoms. My GI suggested the injections but my PCP administers them to me at my request (because they are cheaper to visit )

I also take B-complex supplements during those times where I can't manage to get a regular appointment with my PCP. It holds me over at least for some of the day.

 

[Emma82]

Thank you!

I find it helpful to know what other peoples levels are. I did read a private gp report that said you can have symptoms of a defficiency before the blood test shows you to be low. If the upper limits of 'normal' are in the 1000 range - then my reading is in the bottom half I guess- and I eat a good diet full of b12 foods so I do wonder if my damaged small intestine is affecting this and if I'm on a bit of a downward spiral. Is there anyone who has any knowledge on what the normal range is - does it really go up past 1000? (My GI
Said the top reading was 600 which from what I read seems very low!)

 

[DEmberton]

I know the NHS (at least where I live) say 210 is normal. When I still had a Terminal Ileum, but not a very healthy one, I was down to 150, and 6 weeks after the first injection I was still "at the low end of the normal range" - I don't know the number. Had another test the other day (after 3x monthly injections) but don't know the result yet.

Your liver can store 5 years or so of B12, which shows how important it is, and also how long you have to be not absorbing enough before it starts to become an issue. Too much in your blood and your kidneys will remove it, which makes me wonder how useful a big hit (i.e. injection) every 3 months is - maybe you pee most of it out.

 

[CrohnsChicago]

The range is going to depend more on the lab running the tests.

Here's an article you might find interesting about b12 levels:
http://www.nlm.nih.gov/medlineplus/ency/article/003705.htm

That site lists a normal range of 200 - 900 picograms per milliliter (pg/mL)

However my lab results show the range being 200-1100.

The damage in my terminal ileum appears to be permanent (as is the case for all b12 deficiencies I believe - don't quote me on that though). My range without injections always stays around 300.

For my last b12 test I forgot to tell the doctor I had just had the injection done 2 hours prior to my visit and they tested me for b12. The results came back >2000 so the injections really do something at least for a while until I need another one. If you were to test me days before the monthly injection it would still be in the 300 range.

 

[CrohnsChicago]

Oh, and you do pee it out if it is too much. If you take Vitamin B supplements I notice that when I take the pills my urine glows yellow for the remainder of the day because my digestive tract/terminal ileum is not absorbing it all.

The injections work far better for me since it's going right into the blood stream.