B12 question

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LilliThree
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B12 question

Post by LilliThree » Thu Apr 04, 2019 11:24 am

Hello, all. Undiagnosed here. I'm planning a more complete intro than this but I have an appointment with my GP tomorrow morning and need some info for that visit. I was dx with B12 deficiency a couple of years ago when I was presenting with symptoms of peripheral neuropathy,muscle spasms, fatigue and lightheadedness. I had a brain MRI which came back clean. My symptoms faded as my B12 level was brought up with weekly shots. I now take vitamin B 12 daily and had my levels checked recently and I was at the top of normal. However, my symptoms have returned. Another clean MRI but blood tests showed that I had insufficient levels of vitamin D3 so I'm supplementing with that now. I had an appointment with a neurologist last week but that was one of those 15 minute waste of time visits. Emg test on arms was normal.

My concern at this point is that my symptoms are looking episodic to me and the neuropathy was more involved this time. I'm concerned about the symptoms worsening and want to know what's causing the problem so that I can address it, obviously. Could someone please give me some information about whether b12 levels can test as high but not be performing the necessary functions in my body relative to my peripheral neuropathy? Are there any other tests that I should request relative to that answer?

Thanks so much!

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Re: B12 question

Post by jimmylegs » Thu Apr 04, 2019 4:09 pm

hi and welcome LT :)

excellent to hear that you're aware of these common nutritional issues for ms patients.

please consider your entire nutritional picture, think about possible reasons nutrient status could be generally poor, and try to avoid emphasizing single nutrients in isolation.
supplements are a useful way to top up on a generally healthy diet, but that healthy and diverse whole food base diet is a critical underpinning for your total health scenario.

if your GP will give you a referral to a regulated preventive professional eg a registered dietitian, please do consider pursuing that option.

a few questions:

1. i am curious if any health pro ever recommended an increase in foods rich in b12?
2. has any doc suggested ways to improve d3 status via diet?
3. eg did any doc advise that increasing magnesium dense foods and fluids can improve vit d3 status all by itself?

4. failing that, on the supplement front did anyone suggest a multi vit/min to round out b12 intake?
5. has anyone counseled you on how to combine mag supplements to match vit d3 intake?
6. has anyone yet advised on best magnesium forms and timing in relation to d3 dose?

if not, these are all nuances which may be worth your time to consider. there are other nutrients to watch for if you want to work to be unlike as much unlike an ms patient as possible - figuring out a well rounded nutrient programme would be a great place to start. :)
take control of your own health
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ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

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Re: B12 question

Post by NHE » Thu Apr 04, 2019 10:15 pm

LilliThree wrote:
Thu Apr 04, 2019 11:24 am
My concern at this point is that my symptoms are looking episodic to me and the neuropathy was more involved this time. I'm concerned about the symptoms worsening and want to know what's causing the problem so that I can address it, obviously. Could someone please give me some information about whether b12 levels can test as high but not be performing the necessary functions in my body relative to my peripheral neuropathy? Are there any other tests that I should request relative to that answer?
In the video "Everything You Want Your Doctor to Know about Vitamin B12"
https://youtu.be/BvEizypoyO0, Sally Pacholok, author of the book "Could It Be B12? An Epidemic of Misdiagnoses," states that the following tests should be performed to get a full understanding of one's B12 status.

Serum B12
Holotranscobalamin
Homocysteine
Methylmalonic Acid (MMA)
Unsaturated B12 Binding Capacity

It's also good to measure folate as methylfolate is used to recycle spent B12 back to the active methyl form. Testing red blood cell (RBC) folate is a better test than serum folate since it's less sensitive to dietary influences on folate levels and gives a better picture of long-term folate status.

These blood tests, as well as other B12 issues, have been discussed in the following topic which you may wish to read for more information. You can also read Sally Pacholok's book for interpretations of the various test results.

viewtopic.php?f=27&t=24857

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Re: B12 question

Post by LilliThree » Fri Apr 05, 2019 12:25 pm

JimmyLegs, the situation sort of evolved over time to me dealing with these nutrients in isolation. I began using magnesium glycinate a few years ago as a suggestion from somewhere as a help with headaches. Then when I found that I had a B 12 deficiency a couple of years ago, I added that. Now vitamin D3. I've never taken a multi-vitamin. I had a lot of confidence in the nutritional values of my diet. Over-confidence, I should admit. I've been reading this forum for several days now since I seem to fall into the category of "looks like MS" with every random doctor I've met so far but dismissed because of clean MRI. In this process, I've been doing research around diet and was already becoming aware that I really don't have a full picture of what's going on with me nutritionally. Your posts, along with others, have been very informative and got my wheels turning.

I've always considered myself a healthy eater. I don't eat processed foods. My diet is focused on whole foods, lots of veggies, lean meats, lots of fish. Three years ago, though, I started a FODMAP elimination diet because of IBS symptoms. I eliminated gluten and dairy and my IBS symptoms eased up. The reintroduction phase, however, has always been tricky. I have focused on brown rice and quinoa to be sure I was getting some B vitamins but that's been the extent of my focus on nutrients. I have started making my own sour dough spelt bread and that's been an easy digestive adjustment. I'm afraid I've let my diet become too restrictive. So that's all being re-examined at this point.

So, in answer to your questions, no, I've never been advised in any of those ways regarding supplements and diet.I did ask my doctor today to refer me to a dietitian. I live in a small town in the midwest US. She asked me to let her look around and see if she could find somebody good. Do you have any recommendations around that? I might have to scout around a nearby city and I have no idea where to focus.

NHE, I have the B12 book and did read it two years ago. As soon as my symptoms eased from that particular episode, I put it on the shelf and forgot I had it. I didn't have a chance to look at it again before my appointment today but I did take the blood test list that you suggested and I'm scheduled to go back next week after I've had a 72 hour clear out of supplements. That was really handy timing for me to have that in hand so thank you very much. I will be re-examining that literature.

I have a reputation among my friends as the healthy eater of the group but I just always assumed that if I’m eating lots of healthy food, I don’t need to worry about vitamins. 😕

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Re: B12 question

Post by jimmylegs » Fri Apr 05, 2019 2:21 pm

it's understandable that you've run across these things one at a time but going forward i hope you can round things out a bit.

glad to hear you will be seeing a dietitian. as for who's good, it depends where you are and what people are allowed to call themselves there, given whatever degree of training, accreditation, certification, regulating body etc. your doc should know who the higher caliber local options will be. where i live, i can call myself a nutritionist but i can't call myself a dietitian.

you'll impress your future diet pro if you walk in with a complete three day diary of food fluids supplements meds and for good measure, physical activity. three days made up of two work 'weekdays' and one at-home 'weekend' day is considered representative of a normal week.

i added a diary link here viewtopic.php?f=9&t=30876&p=257240#p257240

now all that said, dietitians are not your go-to individuals for detailed info on supplements. while helping a friend over the past year i have found that the pros (from the family doc to the oncologist to the dietitian) tend to defer to the pharmacist where supplements are concerned. i have had variable experiences with pharmacists, some downright awesome and others not so much.

anyway i'm glad to hear you landed on magnesium glycinate from day 1. are you still using it? if so, good - what's best in terms of how much, and when it's taken, depends on your d3 regimen.

if you can track down and add a high quality daily multivitamin and mineral, that will probably help set you up in a way that better approximates whole food, than solo supplement products. depending on your seafood choices/frequency, you might not need added fish oil.

your mention of ibs prompts me to ask about zinc. do you have a sense of which foods in your diet provide the highest amounts of animal source and vegetable source zinc?

it's so easy to overdo dietary restrictions! i'm the poster child for that :S lol. here's hoping your doc finds you a great dietitian who can provide you with some useful action items :)
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

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Re: B12 question

Post by NHE » Fri Apr 05, 2019 5:27 pm

@LilliThree

What was your B12 level when you were diagnosed as deficient? How long do you suspect that you had been deficient? What kind of B12 are you taking and how much? For example, oral vs. sublingual? Cyanocobalamin, methylcobalamin, adenosylcobalamin or hydroxocobalamin?

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Re: B12 question

Post by LilliThree » Sun Apr 07, 2019 8:36 am

JL, thank you for the diary link. :-) I'll be sure to prep with it.

Yes, I still take the magnesium glycinate. I shifted one of my capsules to take with the Vitamin D3 because I saw you post about that somewhere. It was an easy shift but I'm just winging it because, honestly, I don't really know what I'm doing. That's why I'm on the hunt for information. Finding a dietitian in my neck of the woods is going to be tricky. (I know I'm looking for dietitian, not nutritionist. I once met a dietitian at a party who made sure to express her perspective on that. A fair one.)

I had some zinc assay in my medicine cabinet for testing zinc a few years ago. I tried it yesterday and tasted zinc within a couple of seconds. I have no idea if that's a valid enough test but it was easy access.

Sorry to hear you had challenges with dietary restrictions, too. I honestly thought I was doing the best thing for myself. I really like to be hands-on about my health. Wary of the medical system. But here I am realizing I can't do it all by myself. Your signature represents my mindset but my knowledge needs work.

NHE, I don't recall the specific number but it was just over 200. Bottom range of normal. My doctor felt my symptoms were like MS but my MRI was clean so she suggested we give B12 a try to see if my symptoms improved. Which they did, for the most part. Some residual mild neuropathy. I don't know if it was coincidence because I was practicing optimal self-care on all fronts just trying to deal with this new unknown.

I have no idea how long I had been low. My symptoms just came on pretty suddenly and all together. Peripheral neuropathy, brief muscle spasms, fatigue, light headedness. It was sudden enough that I was able to think that something just wasn't right even though only the fatigue was getting severe. That was two years ago. This go round, same symptoms but the neuropathy is more pronounced and the dizziness is more significant. I take 1000mg sublingual methylcobalamin daily.

I have pulled out the b12 book and am reviewing.

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Re: B12 question

Post by NHE » Sun Apr 07, 2019 11:47 am

LilliThree wrote:
Sun Apr 07, 2019 8:36 am
NHE, I don't recall the specific number but it was just over 200. Bottom range of normal. My doctor felt my symptoms were like MS but my MRI was clean so she suggested we give B12 a try to see if my symptoms improved. Which they did, for the most part. Some residual mild neuropathy. I don't know if it was coincidence because I was practicing optimal self-care on all fronts just trying to deal with this new unknown.
200 pg/mL is low enough to be deficient.Sally Pacholok states that the CNS can become deficient in B12 when serum B12 is less than 500 pg/mL.
LilliThree wrote:I have no idea how long I had been low. My symptoms just came on pretty suddenly and all together. Peripheral neuropathy, brief muscle spasms, fatigue, light headedness. It was sudden enough that I was able to think that something just wasn't right even though only the fatigue was getting severe. That was two years ago. This go round, same symptoms but the neuropathy is more pronounced and the dizziness is more significant. I take 1000mg sublingual methylcobalamin daily.
It's good to hear that you experienced improvements. When I started taking B12 it was like the fog in my brain burned off and the effect was within minutes of taking a sublingual dose. Unfortunately, neurological deficit due to B12 deficiency is often not fully reversible unless the deficiency is caught early. Healing can take time and work.

The free full text of the following paper provides an example.

Potential outcome factors in subacute combined degeneration: review of observational studies.
J Gen Intern Med. 2006 Oct;21(10):1063-8.

  • RESULTS: Eight patients (14%) achieved clinical resolution and 49 (86%) improved with B12 therapy. The absence of sensory dermatomal deficit, Romberg, and Babinski signs were associated with a higher complete resolution rate. Patients with MRI lesions in < or = 7 segments and age less than 50 also appear to have higher rates of complete resolution.

    CONCLUSIONS: B12 therapy is reported to stop progression and improve neurologic deficits in most patients with subacute combined degeneration. However, complete resolution only occurs in a small percentage of patients and appears to be associated with factors suggestive of less severe disease at the time of diagnosis.

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Re: B12 question

Post by LilliThree » Sun Apr 07, 2019 2:20 pm

Mm hm. That’s how I processed the residual neuropathy two years ago after bringing b12 up. Damage done. And it’s why I’m worried about this new bout with neuropathy more extensive and b12 levels high. Will learn more with next blood tests results. Or eliminate consideration of it as the problem, I guess?

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Re: B12 question

Post by NHE » Mon Apr 08, 2019 6:47 am

LilliThree wrote:
Sun Apr 07, 2019 2:20 pm
Mm hm. That’s how I processed the residual neuropathy two years ago after bringing b12 up. Damage done. And it’s why I’m worried about this new bout with neuropathy more extensive and b12 levels high. Will learn more with next blood tests results. Or eliminate consideration of it as the problem, I guess?
There are two forms of B12 used by our bodies, adenosylcobalamin and methylcobalamin. Have you ever tried adenosylcobalamin? Some supplement suppliers sell it as a blend with the methyl form. Example: https://www.vitacost.com/superior-sourc ... al-tablets I've tried these. The tablets are small and dissolve in about a minute.

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Re: B12 question

Post by LilliThree » Fri Apr 12, 2019 7:48 am

Have you ever tried adenosylcobalamin?
No, I haven’t but I’ll give it a try.

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Re: B12 question

Post by LilliThree » Fri Apr 12, 2019 7:50 am

I saw a reply here by JimmyLegs and now it’s gone. I haven’t had a chance to read it but I was interested in the content. JimmyLegs, would you please repost?

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Re: B12 question

Post by jimmylegs » Sat Apr 13, 2019 8:08 am

hi again i hadn't saved it. coles notes version, i asked for dtls of current mag/d3 regimen and was also curious whether your zinc taste test assay and result indicated deficiency, since published research has linked delayed zinc taste test response to deficient serum levels.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

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Re: B12 question

Post by LilliThree » Sat Apr 13, 2019 12:25 pm

JL, I believe the zinc assay test indicates that I don’t have a deficiency but I’m not sure I know exactly what I’m doing with it. According to the directions, you hold the liquid in your mouth for 10 secs, if you taste metal immediately or close to immediately, you’re ok. The longer the delay, the more likely a deficiency.

I take 5000iu D3 with 120mg Mag Glycinate in the a.m. then I take 360mg MG at bedtime.

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Re: B12 question

Post by jimmylegs » Sat Apr 13, 2019 1:13 pm

ok interesting - how does the zinc taste test product define 'close to immediately'? from research, a delay as short as a couple seconds is associated with deficient serum levels. could be worth comparing what you've got to the methods used in the research. can you post a link to product info?

sounds mostly good re d3 and mag. have you ever run into problems with acid reflux cough?
if so, consider avoiding mag glycinate right at bedtime. since my own bad and stupidly long-lasting xp i try to take mag glycinate on an empty stomach followed by food a few mins later to wash it out of the stomach and into the small intestine.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

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