Just learned I have B12 deficiency - now what?

[tankgirl73]

Just got back from the dr. I had blood work done to check on suspected low iron (which was confirmed, hemoglobin is borderline but ferritin stores are low). She also did a full blood workup since this is a new dr for me.

Well, it came back with low B12. She said the cut-off for "low" would be something like 154 and mine was around 110. This was a complete surprise! I know that vegans can be at risk for low B12, but I'm a full-bore carnivore ... we get grass-fed beef from a local farmer, eat lots of bacon and re-use the bacon grease in everything, I could happily survive on chicken alone (well, chicken and potatoes)... I don't drink milk but I do eat cheese and use milk in cooking, etc. So I never would have suspected I'd be at risk for low B12.

BUT -- I'm not surprised at the idea that I might have absorption problems. I have IBS, so if sometimes my food just goes STRAIGHT through me without stopping to deliver its nutritional goodies on the way, no big surprise.

I'm going to get at least one B12 shot to get things up again, and see where we'll go from there. But now I'm looking into B12 deficiency causes and issues, and it's got me curious about a lot of things. I'm reading about parasite issues, bacterial overgrowths in the small intestine, and pernicious anemia (autoimmune disorder where the intrinsic factor which absorbs B12 is attacked).

So... just wondering about people's thoughts and experiences. I almost posted this in the Nutrition sub-forum but thought I'd try here first, since if it's a basic physical problem then better nutrition isn't going to fix it (I do eat quite well for the most part, not full-on "NT" but very influenced by it).

Low B12 can cause fatigue, sleep disturbances (which I've had my whole life), palpitations (another life-long frustration and mystery), irritability (just ask my son about that one...), concentration problems, tingly extremities (I just thought they were falling asleep easier just due to getting older), diarrhea (vicious circle there), paleness... all things which I've either had my whole life or have noticed being worse in recent years.

[kl5]

Your post basically describes me a year and a half ago. Low B12 despite eating lots of grass fed meat, decent hemoglobin but really low ferritin stores and a long history of "IBS". For me, it was gluten that was causing the intestinal damage and malabsorption issues. Cutting that totally (and dairy for a while) and dedicated supplementation with key nutrients has left me healthier than I have ever been in my life. And pregnant finally at 36. Good luck in figuring it out.

[tankgirl73]

I've actually looked into celiac disease previously (since you mentioned the gluten intolerance) but it's not a match for me, really.

"Untreated celiac disease can lead to infertility in women, lack of menses, spontaneous abortions and low birth weight infants." -- you mentioned you're 'finally pregnant' so I'm assuming you had difficulty with fertility previously? Well, I seem to be able to get pregnant just by looking at me funny lol... and my kids were all normal weights.

Apparently weight loss is also common with celiac (and a real problem for the folks I know who do have celiac)... Not for me! I'm fighting steady weight gain.

That's not to say it's ruled out for sure, it just has never felt like the right diagnosis for me. I did try going gluten-free for awhile and found no difference. I definitely can have an 'attack' with too much dairy, but I've seen no correlation with any particular foods otherwise.

It couldn't hurt to try it again, of course... I'd LOVE to be able to solve it all... Could I ask which "key nutrients" have been the most helpful for you?

[mom61508]

Originally Posted by tankgirl73

I've actually looked into celiac disease previously (since you mentioned the gluten intolerance) but it's not a match for me, really.

"Untreated celiac disease can lead to infertility in women, lack of menses, spontaneous abortions and low birth weight infants." -- you mentioned you're 'finally pregnant' so I'm assuming you had difficulty with fertility previously? Well, I seem to be able to get pregnant just by looking at me funny lol... and my kids were all normal weights.

Apparently weight loss is also common with celiac (and a real problem for the folks I know who do have celiac)... Not for me! I'm fighting steady weight gain.

That's not to say it's ruled out for sure, it just has never felt like the right diagnosis for me. I did try going gluten-free for awhile and found no difference. I definitely can have an 'attack' with too much dairy, but I've seen no correlation with any particular foods otherwise.

It couldn't hurt to try it again, of course... I'd LOVE to be able to solve it all... Could I ask which "key nutrients" have been the most helpful for you?

you don't have to have celiac for gluten to be an issue for you. You can still be sensitive to gluten and not have celiac. The only way to know for sure would be to eliminate(strictly) gluten for 6 weeks and try it again to see how you react. I know you say you don't fit the symptoms but IBS is a big symptom as is B12 deficiency of gluten intolerance. Gluten in general is hard to digest. I would supplement sublingual B12 it's better absorbed. did she check your folate? From what I've read alot of times with B12 def there's a folate deficiency. I've been reading up on this while my problem is opposite of yours I still keep coming across B12 deficiency stuff.

[tankgirl73]

Yeah I know gluten isn't necessarily celiac, I was just sayin'

As far as I know, my folate was checked -- I had a full bloodwork done, and she said "everything else" was fine, but I don't know for sure what "everything else" is, so I was actually thinking of asking for a printout for myself.

[CarrieMF]

I get B12 shots twice a month. It's the only supplement that raises my B12 & gets rid of my anemia. It took 7 months of monthly shots for me to notice a difference.

[kl5]

Originally Posted by tankgirl73

I've actually looked into celiac disease previously (since you mentioned the gluten intolerance) but it's not a match for me...

Well, I seem to be able to get pregnant just by looking at me funny lol... and my kids were all normal weights...

Apparently weight loss is also common with celiac (and a real problem for the folks I know who do have celiac)... Not for me! I'm fighting steady weight gain...

Yes, I tried to conceive for 2 years before we finally managed. But I was also consistently overweight, creeping up more and more over the years to the point where I was 166 at 5'3" and totally at a loss as to what I was doing wrong. Never was a skinny kid, etc. The lists of symptoms or signs of celiac disease on the internet are honestly the reason it is so severely underdiagnosed. People see low weight and whatever other symptoms they don't have and they (or more commonly their doctors) rule it out without exploring it.

I am not saying this is you, but just sharing my experience. For me, my gut (literal and metaphorical) said gluten and it turned out to be right. I would say do some deep thinking on the issue (and more research) and trust your gut. But IBS is not normal. That's what it boiled down to for me. It is not normal to have diarrhea every day and bloating and feel miserable no matter what I ate. And avoiding tomatoes or whatever was not a satisfactory solution. WHY was my digestive tract acting this way? That's what I needed to get to the bottom of, and it seems like what you are after as well.

These are the things I supped with (and still do to some extent):
B-complex (Thorne Basic B)
Iron (Metagenics Hemagenics)
Vitamin C
Vitamin D
CoQ10 (Ubiquinol)
Magnesium
Fermented Cod Liver Oil
Priobiotics (I like Dr. Ohhira's, but switch brands a lot)
I also used digestive enzymes and HCL for a while.

Now that I am pregnant I am still using the iron, just because, though my levels are really great at this point. But I am almost out of my last bottle and have been transitioning to liquid chlorophyll. I also use cell salts (bioplasma and Tissue P) and trace minerals in my water when I think of it.

This is what worked for me. I lost weight, my headaches stopped, my mood evened out, and I just feel and look so much better. There was definitely a period of withdrawal where I felt like I had the flu for the first week or so (besides dairy and gluten, I also cut caffeine, sugar, and alcohol--a lot at one time).

Again, good luck and I hope you get to the bottom of it.

[tankgirl73]

Thanks for the info! My metaphorical gut (heehee) tells me that it's not celiac or gluten in my case, but I'm also not ruling it out!

I take digestive enzymes when I'm going through a really bad spell, and when I'm going to have lots of dairy (like all the strawberry shortcake with loads of whipped cream this time of year... soooooo good...) I was taking CoQ10 for awhile, with some other things, in an attempt to get my blood pressure under control naturally. (Primary hypertension, runs in the family, I'm just getting to the point where it's officially moving from pre-hypertension into hypertension), and was taking B6 and magnesium and Omega-3s and D at the same time. So some similarities there.

Of course, I felt little to no effect with any of it. So who knows. I definitely need to get onto iron at the very least... And I've contemplated the idea of HCL, but I did the test that supposedly tells you whether low-acid stomach is in fact a problem and it seemed to NOT be... It's just so hard to figure things out, ya know? Like you said, the info on the internet can be misleading!

I hadn't known, for instance, that weight gain can be part of celiac. This isn't just from the internet, I know several people IRL with celiac and they all have problems keeping their weight UP. Go figure.

[mom61508]

Originally Posted by tankgirl73

Yeah I know gluten isn't necessarily celiac, I was just sayin'

As far as I know, my folate was checked -- I had a full bloodwork done, and she said "everything else" was fine, but I don't know for sure what "everything else" is, so I was actually thinking of asking for a printout for myself.

gotcha I always get a copy I have to see things for myself. I don't know how many times my past HCP forget or don't think something is important from my labs then I see something in low normal or even slightly deficient.

Originally Posted by kl5

Yes, I tried to conceive for 2 years before we finally managed. But I was also consistently overweight, creeping up more and more over the years to the point where I was 166 at 5'3" and totally at a loss as to what I was doing wrong. Never was a skinny kid, etc. The lists of symptoms or signs of celiac disease on the internet are honestly the reason it is so severely underdiagnosed. People see low weight and whatever other symptoms they don't have and they (or more commonly their doctors) rule it out without exploring it.

I am not saying this is you, but just sharing my experience. For me, my gut (literal and metaphorical) said gluten and it turned out to be right. I would say do some deep thinking on the issue (and more research) and trust your gut. But IBS is not normal. That's what it boiled down to for me. It is not normal to have diarrhea every day and bloating and feel miserable no matter what I ate. And avoiding tomatoes or whatever was not a satisfactory solution. WHY was my digestive tract acting this way? That's what I needed to get to the bottom of, and it seems like what you are after as well.

These are the things I supped with (and still do to some extent):
B-complex (Thorne Basic B)
Iron (Metagenics Hemagenics)
Vitamin C
Vitamin D
CoQ10 (Ubiquinol)
Magnesium
Fermented Cod Liver Oil
Priobiotics (I like Dr. Ohhira's, but switch brands a lot)
I also used digestive enzymes and HCL for a while.

Now that I am pregnant I am still using the iron, just because, though my levels are really great at this point. But I am almost out of my last bottle and have been transitioning to liquid chlorophyll. I also use cell salts (bioplasma and Tissue P) and trace minerals in my water when I think of it.

This is what worked for me. I lost weight, my headaches stopped, my mood evened out, and I just feel and look so much better. There was definitely a period of withdrawal where I felt like I had the flu for the first week or so (besides dairy and gluten, I also cut caffeine, sugar, and alcohol--a lot at one time).

Again, good luck and I hope you get to the bottom of it.

Great list of supps! Glad you found what works for you I think that's the hardest part.

[zmom2010]

B12 options

Long term lack of B12 can lead to neurological disorders. However, I would first try a sublingual B12 tablet. If that doesn't raise your levels, then your doctor might consider B12 intramuscular injections.
I have a family member with pernicious anemia, and the injections did wonders.

[tankgirl73]

Considering that my levels were like 33% below the minimum (and minimum isn't even necessarily "ideal"), I'm fine with going straight to the injections. Especially since it's likely an absorption problem with me -- I must be eating enough B12 in my diet, and yet my levels were so low. The direct route makes the most sense. My dr said that once we've got my levels up with the shots, we'll see if we can MAINTAIN it with just the oral pills.

I've already had my first shot, it was fine. But I'm also taking the sublingual pills, just to attack it as much as possible -- especially since my dr's office is going on vacation for 2 weeks, so it will be 3 weeks between my first two shots instead of the recommended one...

My disappointment with the tablets that I picked up, which I didn't notice until after I got them home, is that they've got sorbitol... good grief!!!!

[Ammaarah]

I'm glad you're getting the injections! You can actually get permanent neurological damage while your numbers are in the LOW END OF "NORMAL!" Eek. A relative of mine was dx'd with Parkinson's and it turned out to be B12 deficiency, not Parkinson's!

It sounds like you are looking into a lot of possibilities. I hope you can figure out if there is a root cause that can be treated as well.

[CarrieMF]

I've already had my first shot, it was fine. But I'm also taking the sublingual pills, just to attack it as much as possible -- especially since my dr's office is going on vacation for 2 weeks, so it will be 3 weeks between my first two shots instead of the recommended one...

I get mine done at Home Care in the Public Health building. Before that I had them done at the dr's clinic but the nurses did them. I usually had to have a 1hour slot of time with nothing to do because they'd often make me wait for 20-50 minutes before calling me back and now they only do injections there on Tuesdays in the afternoons. At Home Care I am in & out in 5 minutes. I could also do them myself(not happening) or have DH do them(even less of a chance of happening,lol)

[tankgirl73]

There is a clinic I could probably go to if I had to, but the wait time is reeaaalllly long... there are hundreds of people without family doctors here right now (we were lucky to get picked up by this dr, she just moved to town), and while there are several walk-in clinics, this one is well-known as the best one. (The dr is actually an old friend of my mum's... she's really wonderful, everybody loves her, and in fact many people are happy to keep using her as their not-really-official dr rather than take a chance with someone else!)

But I was not led to believe that it was soooo essential for me to get it every week, at least not enough to be worth dragging my kids around a boring mall for close to 2 hours (it really is a boring mall...) lol... plus I am taking the oral pills.

If it ends up that I do have to have the injections on a regular basis for the rest of my life, I probably will make the effort to learn to do it myself. There is NO WAY my DH would be able to do it, just like yours lol... he can't even donate blood because he faints! But I could probably do it myself. Or get my mom to do it, really... she was an RN until she became a mom.

[crunchy_mama]

Glad to read that you are working on this. However, I want to stress again to look at Celiac's/gluten intolerance. You don't have to be infertile and as pp stated weight gain can be as much a part of it as weight loss. You said you looked into it before, why is that? I am certainly gluten intolerant- likely Celiac and have conceived easily- babes born w/ great weights and on gluten I have to watch what I eat like a hawk so I don't gain weight.

Symptoms for me were massive bloating(I would look 5 months pregnant whenever I would eat something)-depression- mood issues. REgardless as pp stated gluten is extremely hard to digest and if you are obviously having gut issues from something I wouldn't be eating it!

[tankgirl73]

Looked into it before because of the IBS, trying to track down a cause. I am looking into again, don't fret.

[CarrieMF]

But I was not led to believe that it was soooo essential for me to get it every week, at least not enough to be worth dragging my kids around a boring mall for close to 2 hours (it really is a boring mall...) lol... plus I am taking the oral pills.

I started my shots at once a month & 7months later went to twice a month. I've been on twice a month for 6 years now. I was going through LONG periods of not getting it for 2-3 months until I started going to Home Care. A big part of that was due to the having to have at least 1 hour of time where I could sit in the clinic(and the grumpy old witch of a nurse who often gave the shots but that's a different story,lol). The longer I went without my shot the less energy I had the less motivation I had to go & actually get it when I knew it'd help. It's a bad circle to get into. If you do have absorbtion issues taking oral pills won't help.

If it ends up that I do have to have the injections on a regular basis for the rest of my life, I probably will make the effort to learn to do it myself. There is NO WAY my DH would be able to do it, just like yours lol... he can't even donate blood because he faints! But I could probably do it myself. Or get my mom to do it, really... she was an RN until she became a mom.

Oh, DH would do them. I just don't trust him to do it in a nice way all the time.lol