What to do/take if sensitive to B12?

[JoeyJo]

Hi everyone!

I started taking B12 recently when my DUTCH test revealed a slightly elevated level of MMA ( 2.4 when the normal range was 0 - 2.2).

I felt SO much better for taking it. The brain fog went away, I got my energy back and just generally felt like my normal self again. However, the chronic insomnia got MUCH worse (most supplements tend to set it off).

I took:
Nutribioticals Methylcobalamin 1000mcg - Felt fantastic in the day and couldn't sleep at all at night.
So changed to:
Cytoplan Hydroxocobalamin Sublingual 1mg - Had the same highs and lows but they weren't quite as intense.

So I'm looking for advice on how to take it. Is it just a case of start low and slow? Or is there anything I can take alongside it which might reduce the likelihood of it keeping me up at night? Is it worth me trying Adenosylcobalamin?

I don't understand half of the information on this forum, nor what methylation is, and I have no chance of figuring any of it out with this foggy brain, so if anyone could give me some advice in the most simple of terms, then that would be much appreciated!

 

[Wishful]

I'm not at all an expert on B12, but others will probably say that folate is a critical cofactor, and maybe there are more. One of them might correct the insomnia from B12.

 

[drmullin30]

Hi Joey,

If I don't take methylfolate with b12 I get very anxious and can't sleep. Most people need to take L-MTHF with b12 to get the benefits.

Adenosylcobalamin also helps with this for me.

I also use acetyl-l-carnitine to help with brain fog and this is also important for b12 utilization.

I also need iodine, riboflavin, b6, molybdenum and selenium to make sure my b12 works.

I also take a complete methylated b-vitamin complex as all b-vitamins work together.

 

[Pyrrhus]

I agree with the above two posts that mention that methyl-folate (vitamin B9) must be taken with B12, as the two vitamins work together. The standard daily dose of methylfolate is 400mcg (micrograms, not milligrams).

Although it is considered essential to take methylfolate with B12, I don't know if this will help your insomnia or not. You may need to do your own trial-and-error testing to find what works for you. Remember that these vitamins sometimes come with "start-up effects" that fade after a couple of weeks.

Also commonly recommended are the other B vitamins, especially vitamin B6 (pyridoxal-5-phosphate, not pyridoxine). This vitamin also works somewhat closely with methylfolate (vitamin B9) and B12.

If you want a simple B multivitamin that includes all the B vitamins, except for B12 and methyl-folate, you may consider "B minus" from the company Seeking Health:
https://www.seekinghealth.com/products/b-minus-100-capsules

And if you have a brief moment, you can record your experience in this B12 poll:
https://forums.phoenixrising.me/threads/b12-a-simple-5-second-poll-for-everyone.80150/

Hope this helps.

 

[gbells]

I've never heard of an allergy to a vitamin, which would be fatal because vitamins are essential for life. I think you can only be allergic to proteins which are different so maybe it is a filler in the capsule rather than the vitamin that might be a problem. I personally vape B12 so there are no fillers. You can try this one.

 

[ljimbo423]

So I'm looking for advice on how to take it. Is it just a case of start low and slow?

While I agree with the others that have posted here that methylfolate and other co-factors are needed with B-12. I think you might be best served to just start very low and slow with dosing with just B-12.

I had to do this with methylfolate. I took just a fraction of a 400 mcg capsule, because that's all I could tolerate. Maybe 25-50 mcgs. Then increased that by another 25-50 mcgs every 3-4 days.

That went much more smoothly than trying to take higher doses.

After that I started slowly adding in the other co-factors I needed. I was just too sensitive to supplements to add in more than one at a time.

 

[Tammy]

Just my personal opinion. I think it's best to take a B12 that has both methylcobalamin as well as adenosylcobolamin. I took too much in the beginning and it caused extreme agitation. I had to start low and work up. It's easy to do with the liquid B12 I take. I can titrate easier that way. I never took methylfolate when I started the B12. It's only been this yr I started methylfolate and I'm going to have to take that slowly as well because it causes me to get super depressed.

 

[Wishful]

It's only been this yr I started methylfolate and I'm going to have to take that slowly as well because it causes me to get super depressed.

The first time I tried an oral B12 supplement, it gave me serious suicidal moods. I've taken a tablet occasionally since then, with no issues, so maybe some cofactor was involved.

 

[JoeyJo]

Gosh, thank you for all the tips everyone! So many useful insights here, which I hope will help to cut back on the amount of trial and error that's required ( because we all have enough of that already!). Think I'm going to start very slowly with liquid methylcobalamin and adenosylcobolamin, see how it goes and then add methylfolate if/when I can.

Really glad I joined this forum now

 

[jaybee00]

B vitamins won’t cure or treat MECFS.

 

[JoeyJo]

B vitamins won’t cure or treat MECFS.

I'm aware of that, but I think anything that helps you to cope and feel better is still incredibly valuable.

 

[ljimbo423]

B vitamins won’t cure or treat MECFS.

I have improved my health by the very things that your posts consistently say cannot help ME/CFS.

With diet and supplements I've improved my health from severe ME/CFS, that I had for years, to fairly mild ME/CFS most of the time.

So the suggestion that diet and or supplements can't treat symptoms of ME/CFS is simply not true. They can help and have helped many of us.

There are many other people here that have improved their ME/CFS through diet and supplements as well.

You are entitled to your opinion but I strongly disagree.

 

[jaybee00]

Ok but you can’t attribute your improvement to the supplements— in other words it’s an anecdotal account—which is fine and useful to hear reported, but it is an anecdotal account.

 

[ljimbo423]

Ok but you can’t attribute your improvement to the supplements

I can and DO attribute my improvements to the supplements and diet changes I've made. I don't think it's just a coincidence that I have improved my health only after I made these changes, after being severe for 6-8 years. And now am fairly mild.

 

[drmullin30]

Hi @jaybee00,

If you don't think b vitamins and nutrition are useful for treating MECFS, then why are you here?

This is a forum dedicated to this approach and it has changed my life and many others.

I personally have successfully treated a lot more than just chronic fatigue using the orthomolecular approach and nutrigenomics. The list includes but is not limited to:

- chronic extreme anxiety, panic disorder and obsessive compulsive disorder
- autism spectrum disorder type symptoms including lack of social engagement and eye contact, stuttering etc.
- suicidal level depression and alcoholism
- hypothyroidism and goiter
- arthritis, chronic back pain and bursitis
- heart palpitations and tachycardia and high blood pressure
- inability to lose weight and maintain muscle mass
- brain fog, concentration and lack of motivation

All of this I have eliminated from my life or minimized to sub clinical levels using vitamins, minerals and dietary approaches. Anecdotal or not, it works for me and others so I think you're comments are wasted here.

 

[Wishful]

Ok but you can’t attribute your improvement to the supplements

I don't see why they can't. Supplemental carnitine prevented the worsening of symptoms that meat gave me. Adequate carnitine supplement = no worsening; no supplement = worsening. I repeated the experiment many times, with the same result. It might not have qualified as scientific proof, but I think it did qualify as strong evidence. It would have been stronger with proper controls and double-blinding, but repetition does strengthen observational evidence. Anecdotal evidence isn't automatically invalid; it's just not strong evidence.

Your direct statement: "B vitamins won’t cure or treat MECFS." is anecdotal too. You haven't, and probably can't, produce evidence that no one has reduced some ME symptoms by taking supplemental B vitamins. I can easily imagine a case where vitamin deficiency makes ME worse, and can thus be treated by supplements. B vitamins certainly aren't a reliable treatment or cure for ME, but that doesn't mean that they can't be beneficial for at least some PWME.

Since we don't know what ME is, we can't say that something absolutely can't treat it.

 

[Galixie]

You are right to address your elevated MMA result. I am surprised that your doctor didn't order further testing.

This article goes into the some of the many possible causes for a B12 deficiency: pernicious-anaemia-society.org

One of reasons to further discuss this with your doctor is that, unless your deficiency is through a dietary lack (if you are vegan and avoid all meat and dairy products), oral supplementation is unlikely to fully correct the deficiency. You may need additional treatment (such as antibiotics to kill off H. pylori infection) or the vitamin may need to be administered by injection in order to be absorbed and utilized by the body.

It is true that folate is a helpful co-factor. I think of it like a manufacturing plant that is making a product (in this case the product is red blood cells). You need iron, folate, and B12 to make the product. If you're out of one of the three components, production grinds to a halt.

As to the forms of B12, it is important to realize that even though methylcobalamin is one of the two forms used by the body, it still has to go through the same conversion steps after you ingest or inject it to become the version of methylcobalamin that the body actually uses. (I know that sounds wacky, but it is true.) It's also important to realize that the body converts any form of B12 that you supplement into a combination of the two forms of B12 that your body needs: methylcobalamin and adenosylcobalamin.

There are four versions of B12 available on the market:
1. Cyanocobalamin: This version is the most shelf stable and is the one most commonly used in oral supplements. It is also the version of injectable that is most commonly prescribed in the US. It contains an inert cyanide molecule (hence the name). It is not recommended for people with excessive exposure to cyanide, such as heavy smokers or for people with a family history of Lebers Optic disease.
2. Hydroxocobalamin: This version is widely used in the UK. The injectable version is the antidote for cyanide poisioning. It is thought that this version lasts longer inside the body, but that is up for debate. It has a slightly shorter shelf life and some versions need to be kept refrigerated.
3. Methylcobalamin: This version is often touted as being more 'bio-available', but in reality it must go through all of the same conversion steps as Hydroxocobalamin in order to be used by the body. (Interestingly, Cyanocobalamin requires one less step.) This version is less shelf stable than the others. It turns into Hydroxocobalamin as it degrades.
4. Adenosylcobalamin: This is the least shelf stable version, which makes it extremely difficult to turn into a supplement. It is also the form that the body needs the smallest amount of. You generally get enough of this form by taking one of the other versions.

The elevated MMA result does point to a need for B12, which is a vitamin used all over the body. Deficiency of B12 can cause a wide array of symptoms that many doctors may not even associate with B12 deficiency (such as peripheral neuropathy or tinnitus).

Some doctors view B12 as a placebo (because it was once used that way). This can cause problems when you are trying to treat an actual deficiency. Be prepared with facts. If you can, bring an objective observer to your appointment with you. It's a water-soluble vitamin with no know overdose level. Unless your deficiency is due to diet, injections are the most effective method of treatment.

 

[Wishful]

Unless your deficiency is due to diet, injections are the most effective method of treatment.

Does that mean that many B12 deficiencies arise from some problem in absorbing B12 from the digestive tract?

 

[drmullin30]

Hi Wishful,

Certainly digestion is a factor in my b12 and folate issues but my genetics make it very difficult for me synthesize, retain or recycle either of the main cobalamins or methylfolate. I have numerous homozygous and heterozygous SNPs in the methylation pathway (MTR, MTRR, MTHFR, COMT, CBS, BMHT, etc.).

I also have SNPs in the b12 receptor pathways which also affect my ability to absorb b12 in the gut. and many other SNPs in other places that make me more susceptible to toxins like oxalate, gluten, sulfites and mercury.

To be honest, I never made any real progress treating my issues until I found out my genetics and adjusted accordingly to eliminate the methylation and detoxification blockages in my metabolism. It may be anecdotal, but I think many people have SNPs that eventually catch up with you if you don't adjust for with supplementation or diet. I will always need to supplement b12 and folate (and probably a bunch of other stuff that I've been taking for a long time) and that sucks but my genetics don't give me any other choice if I want to have a decent quality of life. Even perfect digestion wouldn't be enough in my case.

 

[Galixie]

Does that mean that many B12 deficiencies arise from some problem in absorbing B12 from the digestive tract?

Yes. B12 is a very complex molecule. In order for it to be absorbed from foods, it must first be cleaved from the food source, then it must land in the duodenum and bind with a special protein, called intrinsic factor, which is produced by the parietal cells that line the stomach. It is then carried through the intestines to the ileum, where it can finally be absorbed.

This process can be interrupted in various ways. Autoimmune conditions can attack intrinsic factor or parietal cells, leaving nothing for the B12 to bind to. Low stomach acid or gastric atrophy can hinder the ability for B12 to be separated from food in the first place. Stomach bypass surgery that removes the duodenum leaves no place for the vitamin to bind to intrinsic factor. Certain parasites and bacterias can gobble up B12 meant for the body, leaving none for the host. There really are quite a number of ways that B12 absorption can be disrupted.