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B12 Dificiency

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Posted 6/3/2020 2:10 PM (GMT -8)
Has anyone here dealt with a B12 deficiency due to UC? I have been dealing with so many darn ailments its not even funny. No one knows whats wrong with me. For a minute they thought i had MS, but thank god that wasnt it. Ive been tested for B12 deficiency and values come back normal but ive been doing some research and found that alot of the way these Drs test for B12 deficiency is inconclusive. Got tired of not knowing whats wrong with me so i somehow came up with the money to do a genetics test. When the results came back every single genetic mutation i had called for Methyl B12 and folic acid supplementation. Problem is a person with UC, or atleast me, doesnt absorb certain nutrients. Only way to get the B12 i need is through an injection and Drs probably wont give me a prescription cause of my values from the blood work. Want to get ahead of this before i get any permanent nerve damage from this. Anyone else dealing with B12 deficiency and what are yall doing about it?
Posted 6/3/2020 2:28 PM (GMT -8)
Hello, I have B12 deficiency and my B12 was very low when I was diagnosed. I had pretty scary neurological symptoms. I take sublingual methylcobalamin tablets. The brand is Natural Factors. It worked very well for me. It is better absorbed than pills because it's sublingual. Hope this helps.
Posted 6/3/2020 2:36 PM (GMT -8)
What symptoms were you having if you dont mind me asking?
Posted 6/3/2020 2:59 PM (GMT -8)
Loss of sensation in my hands, arms and legs, pins and needles, extreme fatigue, headache, memory loss, At some point I had difficulty speaking. Just feeling very unwell in general. The tablets really resolved the problem, but I have to keep on taking them. If I don’t, symptoms slowly come back.
Posted 6/3/2020 3:11 PM (GMT -8)
I have all those symptoms minus loss of feelings in hands. Have slight balance issues, severe insomnia, muscle twitches and spasms along with other things. Too much to list. Yeah im gonna look into those supplements. Thanks
Posted 6/4/2020 5:33 AM (GMT -8)
Make sure you are getting enough protein. I was not and between that and a host of medication side effects became quite malnourished. I had painful muscle spasms all over. It has taken 5 months but I'm finally seeing results. I aim for 20-30g protein per meal. Also, seeing a qualified nutritionist is money well spent. I am seeing someone who specializes in IBD related problems. It has made a huge difference.
Posted 6/4/2020 7:26 AM (GMT -8)
My DH has crazy low B-12 levels and no one can figure out why. He has IBS, but not UC, that's me. He gets all of the same symptoms if he doesn't take the sublingual B-12 every other day. His GI thinks that it is somehow related to his IBS.
Posted 6/4/2020 8:14 AM (GMT -8)
Do you know what sublingual B12 brand he takes?
Posted 6/8/2020 7:31 AM (GMT -8)
Yes, Solgar, methylcobalamin. Sorry for the delayed reply!
Posted 6/8/2020 10:41 PM (GMT -8)
Hey Impala. We spoke a while back and had similar symptoms. I was diagnosed with fibromyalgia by my neurologist but I don't buy it.

I've found three things in my own experience that effect my nerve issues - quality sleep, coffee and mesalamine. Whenever I get a flare up of my nerve issues I will give up coffee and usually that is enough on it's own. Sometimes I will drop the mesalamine as well. My vitamin D levels were very low recently but not sure if there is any relationship. B12 supplements did nothing for me.

As dumb as it sounds, try cutting out coffee (if you drink it). That was the first thing my GP suggested years ago but I didn't listen at the time.
Posted 7/27/2020 5:13 AM (GMT -8)
A little update on my situation. So i took my genetics test to my neurologist and pretty much demanded B12 injections and to my surprise he said ok. Ive been on weekly injections for 6 weeks now and OH MY GOD i feel 100% better. Im not completely normal yet but 100% better than what i was. Almost immediately most of my symptoms got better. I also take B12 lozenges in between doses. Everyday my symptoms improve. Man im so grateful to have finally figured out this nightmare i was going through. This one was kicking my a**. So now ive got my UC and B12 (neurological symptoms) under control and best of all no medications. Now for the last ailment, i have all these arthritis like symptoms that no one seems to be able to figure out. Took all kinds of tests and ofcourse all come back normal. Honestly i think i should of been a Dr cause ive been basically figuring out everything myself.
Posted 7/29/2020 5:57 AM (GMT -8)
Congrats, happy you're feeling better after the B12 injections and supplements. I know some of us are genetically predisposed to be low in b13, higher odds of this for IBD patients but still affects less than a majority of us (exact odds elude me at this moment).
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