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Mysterious fatigue on B12?

NilaJones

Senior Member
Messages
647
Hi folks :).

I've been attempting to add B12 to my life for the past 6 months or so. What keeps stopping me is the greatly increased fatigue I feel, starting a few hours after taking it and lasting through the next few days.

I have tried hydroxy (Perque) and methyl (Sisu), in smaller and smaller sublingual doses. My latest effort was 1/144 of a Sisu, about 7mcg.

I take a multivitamin (Thorne III) which has 150mcg each of adenosyl and methyl, daily with no problems. But that is not sublingual.

I thought the fatigue was because I feel increased energy for the first two hours after a sublingual dose, and have too much memory impairment to remember not to do more. I thought I was just crashing because of doing too much.

But I eliminated that factor.

I did it by taking the B12 in the early evening, about 5 hours before bed, after which I only did a set routine of yoga stretches, brushed my teeth, watched tv, etc. I was careful not to do anything that I don't do every night.

But I am in terrible shape today.

What am I missing? How do I fix this?

Other stuff I am taking:

- tons of potassium-rich foods (I eat nothing but)
- methylfolate
- lecithin
- fish oil
- GLA
- vit D

Thanks so much for any advice. I am very frustrated!

Edit: Oops! 7mcg, not 75.
 

caledonia

Senior Member
I've had fatigue with B12 and am pretty sure it's metal detox. I also have flu-like aching with it. However, this was after being on it for a month.

Congratulations on getting a pill down to 1/144!, but 75mcg may still not be small enough. I use Douglas Labs liquid methylcobalamin, and get it down to 1mcg or even less.

I've also done Thorne multi IV, and the B12 in that is pretty much useless - like you, no reaction from that, but in a sublingual form - BAM.

My one other thought is perhaps this is some sort of CBS reaction? Have you had your SNPs tested at 23andme?
 

NilaJones

Senior Member
Messages
647
Hi caledonia :)

I got that fraction by dissolving in water. I think I got that idea from you?

I sent in my 23and me a couple months ago. Have not got results yet, and afaict there is nowhere on the site that gives time estimates for individual samples, but their general statements about time imply that I might get results soon.

Not exactly flu-like, but the allover muscle inflammation I always have is significantly worse. Similar to accidental gluten ingestion, or skipping folate.

Now that you mention it, I guess this must mean something? Also very hard to get fingers to work to type.
 

NilaJones

Senior Member
Messages
647
I decided the muscle bit could be potassium, so I went and took a bunch. Earlier today + now = about a gram more than I usually take in a day.

About 5,500mg total today, plus some regular food.
 

NilaJones

Senior Member
Messages
647
The thing is, the symptoms are not less with a smaller dose, the 'speedy' feeling is, but the fatigue after is the same whether I take 500mcg or 7mcg.

That's what seems really weird to me. (And I am not hopeful that a further decrease would help, unless other people have had this same pattern....)
 
Messages
64
The fact that you aren't having the same reaction to the multi suggests it could be something in the sublingual tab. Check the ingredients. See anything that could cause this reaction?
 

Tito

Senior Member
Messages
300
On 2 occasions, a B12 shot (methylcobalamin) triggered a relapse (7 weeks in bed). I remember having read that B12 could act as a chelator.
My advice would be: if you get worse then stop.
I never understood the fuss about B12 (unless a patient has a deficiency). They (doctors) all talk about it but I never heard about someone being cured...
 

NilaJones

Senior Member
Messages
647
The fact that you aren't having the same reaction to the multi suggests it could be something in the sublingual tab. Check the ingredients. See anything that could cause this reaction?

Thanks, chronix :).

The ingredients look fine, nothing weird. As I mentioned in the OP, I have had this problem with two brands, both recommended here.

Here are the ingredients, from manufacturer's websites. Does anything look suspicious to anyone?

SISU
Each tablet contains:
Medicinal ingredient:
Vitamin B12 (methylcobalamin)...1,000 mcg
Non-medicinal ingredients: lisomalt, microcrystalline cellulose, magnesium stearate (vegetable), calcium silicate, croscarmellose sodium.
Contains no dairy, wheat, soy, peanuts, artificial colours or preservatives.

Perque
b12.png
 

NilaJones

Senior Member
Messages
647
Good point. Maybe try a different brand with different ingredients?
The speedy feeling sounds very CBS-ish.

Thanks, caledonia :). I realised I forgot to use the reply button in my previous reply to you --oops! The button is not visible on my screen, so I forget it's there.

I have not tried any CBS stuff, and have difficulty reading the forum (from brain fog plus computer incompatibilities). I have some activated charcoal. Would I just take that? With the b12? Or for a few days before? Or both?
 

NilaJones

Senior Member
Messages
647
On 2 occasions, a B12 shot (methylcobalamin) triggered a relapse (7 weeks in bed). I remember having read that B12 could act as a chelator.
My advice would be: if you get worse then stop.
I never understood the fuss about B12 (unless a patient has a deficiency). They (doctors) all talk about it but I never heard about someone being cured...

Thanks, Tito :).

I have difficulty with access to testing (about a 6-18 month wait for each round of tests) so I don't know if I am deficient. I have had almost no B12 in my diet for the past 30 years, though, so it seems logical. OTOH, I have been taking the Thorne mentioned in the OP for maybe two of the past 3 years.

I'm sorry to hear about your relapses :(.
 

caledonia

Senior Member
Thanks, caledonia :). I realised I forgot to use the reply button in my previous reply to you --oops! The button is not visible on my screen, so I forget it's there.

I have not tried any CBS stuff, and have difficulty reading the forum (from brain fog plus computer incompatibilities). I have some activated charcoal. Would I just take that? With the b12? Or for a few days before? Or both?

Unfortunately, the CBS protocol is more complicated than that. The first thing is to make sure it's expressed. You can test for both sulfur and ammonia, or the poor man's version is to just use the urine sulfate strips.

Then you do a diet and supps to reduce sulfur and ammonia. Heartfixer has a great description of how to handle CBS. I used that plus the Free Thiol list for diet for my CBS. Note - it can take several months, so patience is in order. I have links to all of these things in my signature.
 

NilaJones

Senior Member
Messages
647
Unfortunately, the CBS protocol is more complicated than that. The first thing is to make sure it's expressed. You can test for both sulfur and ammonia, or the poor man's version is to just use the urine sulfate strips.

Then you do a diet and supps to reduce sulfur and ammonia. Heartfixer has a great description of how to handle CBS. I used that plus the Free Thiol list for diet for my CBS. Note - it can take several months, so patience is in order. I have links to all of these things in my signature.


Thank you!

Are the tests done on blood or urine? Does taking folate or B12 affect the tests?

My doctor is generally willing to order any tests I request, if the local lab can do them (so, no methylation panel, for example) but she is not familiar with this stuff so she cannot answer questions about how supps interact with the tests and suchlike.

Also, is there a browser plugin for this forum, something to make it work on smaller screens? I miss so much :(.
 

NilaJones

Senior Member
Messages
647
I think ammonia is a blood test, and the sulfate is a strip that you dunk in a cup of urine. You can do that one yourself at home.

I don't think B12 or folate will matter. You either have a lot of ammonia and sulfur or you don't.

Thank you :). It's so wonderful to have the help of people who have been through this stuff :).
 

NilaJones

Senior Member
Messages
647
Could my fatigue have been from low potassium? I had a bad run of something like restless legs, but including my whole body last night, and potassium helped.

I have been doing some reading. I didn't realise fatigue was sometimes a symptom of low potassium. Or maybe I used to know that and forgot.

I am feeling so frustrated and hopeless. I am trying to eat some fucking potatoes to raise my potassium but I can't eat bec I am crying too much. I don't know how I can manage this complex illness and its potentially-dangerous treatments when I can't read, can't retain information, and have no medical provider who can help me.

I know there must be other people here in the same boat. What do you do?

I also cannot eat enough food to raise my potassium without getting hugely fat, even if I eat only super high potassium stuff. Last time I tried B12 I quit in part because of the weight gain. But the supplements are not safe in large doses. Does anyone here do subcutaneous potassium? Is that an option?

I have tears running down my face, typing this. I don't know what to do.