Bad effects from methylcobalamin

[Dizzy2016]

Plain ol' riboflavin. Not the R-5-P one.

Is there a paradox to b2?

 

[TinaT]

I have a methyl block apparently so my body can't access its own methylb12

I'm just falling into this conversation with no background info. But honestly -- who told you this? I mean this sounds like a theory. I'm really doubting it's an actual thing.

I don't mean to scare you but no B12 will continue to seriously disable then eventually kill you. I mean it's not optional. That's somewhat like saying I have an oxygen block, only slower moving.

But i just don't believe that's a thing. Like a real thing.

Have you seen a neurologist? Maybe a good endocrinologist?

You absolutely must try to get some form of B12. Eat red meat? Liver but see my latest comment on the liver debate as to the permissible amount.

Since you believe you can't tolerate any supplements, you must at least eat either fortified foods or meat, and preferably both.

 

[TinaT]

Also a small amount of b complex, or b minus, plus either folonic acid or methylfolate (debate), iron, all small amounts, electrolytes. I'm needing small amounts to tolerate B12. And I'm next trying a very small amount of methyl B12. Your do need all of those vitamins and minerals with B12. But again -- B12 not optional. At the very least, get it from food. But I'm not sure that's enough. That's where you need a doctor but good luck finding a B12 expert. Or just go by how you feel and whether you are progressing in a positive or negative way (at the least).

Btw I'm working with a very good nutritionist. Her advice was to start with a small amount of liquid multi vitamin and / or B complex, and heme iron by three arrows (that makes me feel nauseous so I'm at least taking Global healing iron, vegan and low dose, which doesn't cause me any problems, every other day), and trace mineral drops. She likes the liquid bc you can take just a small amount. And / or B minus. All things she recommended for refeeding syndrome.

 

[Jadzhia]

OK thank you how much about 5mg?

Try it and see. It's all any of us can do. Some people react very strongly, others don't.

 

[Jadzhia]

Is there a paradox to b2?

How do you mean?

 

[Dizzy2016]

How do you mean?

React to b2? In what way??

 

[Graduate2023]

Hi, I didnt have any b12 deficiency symptoms until I took methylcobalamin tho? I'm still bed bound and getting worse, but I can't take b12 as I have high histamine and it makes it worse.
I dont have high levels of b12 mine is always 200 its been 60 before and never had symptoms it's all very strange

I did the same thing and I believe it is overmethylating.

 

[datadragon]

The Methylmalonic Acid Test, also called an MMA Test is a more accurate test of B12 deficiency. Methylmalonic Acid, also called Methylmalonate, is a waste product that builds up in the blood and is excreted in the urine when Vitamin B12 is not available to transform into the energy metabolite Succinic Acid. Because it begins to build up within ten days after a Vitamin B12 deficiency begins, it is not only the most accurate marker, but it is the earliest detectable marker of Vitamin B12 deficiency. And because Methylmalonic Acid is found in both blood and urine in amounts relative to the degree of deficiency, both urine and blood tests are good tests for Vitamin B12 deficiency.

Taking supplements of certain vitamins mostly in larger than RDA amounts (especially ongoing) may possibly lead to sleep disturbances including excessive B12 or B6 levels.

The body can only use the B12 methylcobalamin and adenosylcobalamin directly, while all other forms of vitamin B12 must first be converted in the body. The conversion steps involved in this are dependent on the vitamins B2 (riboflavin) and B3 (niacin). The second bioactive form of vitamin B12, adenosylcobalamin, requires biotin (also known as vitamin B7 or vitamin H) and magnesium, in order to fulfill its important role in aiding the function of the mitochondria – the “power stations” of our cells. Hydroxocobalamin has also been revealed to inhibit the Nitric Oxide system. Hydroxocobalamin (OH-Cbl), cobinamide, and dicyanocobinamide (CN(2)-Cbi) potently inhibited all isoforms (NOS1, NOS2, and NOS3), whereas cyanocobalamin, methylcobalamin, and adenosylcobalamin had much less effect https://pubmed.ncbi.nlm.nih.gov/19328848/ So that form may work in certain cases but not a good substitute in others obviously for that reason.

Testing homocysteine is another to see what actually is going on. High homocysteine following folic acid or vitamin B12 or B6 deficiency is shown it down-regulates peroxisome proliferator-activated receptor (PPAR) expression. Homocysteine has recently been found to be a competitive inhibitor of the nuclear transcription factors: Peroxisome proliferator activated receptors (PPARs) alpha (PPAR-a) and gamma (PPAR-y) which are your anti inflammatory pathways. https://link.springer.com/article/10.1186/1475-2891-3-4 Homocysteine activated NLRP3 inflammasomes in THP-1-differentiated macrophages and promoted subsequent production of IL-1 and IL-18 in macrophages, which were blocked by NLRP3 gene silencing or the caspase-1 inhibitor Z-WEHD-FMK. https://pubmed.ncbi.nlm.nih.gov/28394319/ This means it can increase inflammation, but inflammation is a balance that the body has a number of ways to compensate so you can then check things like c-reactive protein to see if your actually even high in inflammation in the first place.

 

[Graduate2023]

Homosteine was optimal. It does not matter what type of b12- cyan, methyl, hydroxy, adeno.. the same outcome is insomnia, mania, mood swings, and worsening body pain. Hydroxy is the one that I am supposed to take due to COMT met/met. I can not handle methyls at all. I have CBS++, MTHFR ++, GAD, SOD, etc, etc.

Ferritin was 0 iron 5, iron saturation 5 in 2016, started iron infusions for IDA and did that until dx of stage 4 endometriosis in 2021. 3 excision surgeries and hysterectomy for adenomyosis between 2021 and March 2023. Now ferritin is 576 up from 500 3mths ago. Hereditary hemochromatosis is negative. ANA and CRP are normal. Hema was 13, WBC low since birth Im 47yrs old.

Dx Fibro with possible CFS. IT all started in 2009 undx Graves disease turned to thyroid storm and almost died. Never truly recovered. I had b12 of 800 in 2012 and felt no better at 800 than I do at 376 or 175.

I think the thyroid storm did something to me and that has made me sick ever since.

 

[Jadzhia]

So sorry to hear you have Graves' and experienced a thyroid storm @Graduate2023. My mother had Graves' out of control for some years (I've no idea how she survived to be honest), it's brutal. Do you still have your thyroid? Did you have RAI?

 

[Graduate2023]

So sorry to hear you have Graves' and experienced a thyroid storm @Graduate2023. My mother had Graves' out of control for some years (I've no idea how she survived to be honest), it's brutal. Do you still have your thyroid? Did you have RAI?

I'm so sorry your mother went through it. Its life changing. I refused radiouptake therapy and the refused surgery. So I stayed on medication for 2yrs and deemed in remission.

I never felt better even though my numbers got better. Im now surfing on the birder of hypothyroid and need a functional dr but they don't take insurance.

I was denied ssdi so without working 5yrs, I have no money. My partner who is a tbi patient works pt at a home improvement store is my caretaker, hom and my other son pay utilities, my children's father pays for mortgage. There's no leftover money

I need sleep study fir shallow breathing. I think I'd do well on oxygen canula at night.

 

[Jadzhia]

That's really tough @Graduate2023. I do know of someone on a thyroid forum I used to be on who also had Graves' and like you refused RAI and surgery. She was on carbimazole for awhile then like you, is in remission. She is now self-managing herself pretty successfully via diet alone but it is stressful, I think, keeping an eye on thyroid numbers. Maybe check out the Thyroid Patient Advocacy forum, you will need to register in order to read threads and post, it can take a week or so for registration to go through, but you may find some useful help there.

https://www.tpauk.com/forum/

 

[Peyt]

If B12 releases histamine from mast cells well off course there will be a negative reaction, especially in those of us who are already dealing with Autoimmune issues and excess histamine in our body... I don't disagree that it is very important to address B12 deficiency, but how do you manage the side effects? .... Wonder if something like Vitamin D or Nettle tea could help counter the histamine release? Has anyone who gets side effects from taking B12 tried any complementary supplements to help to tolerate it better?

For me, I get violent headaches from B12. I have used both capsules and injections. And I use methylcobalamin which is the best kind...still very bad headaches..

 

[Graduate2023]

Overmethykatoon is an issue especially in comt met met. Niacin mops up extra methyls but too much causes depression. So you can end up a yo yo.

 

[Peyt]

Overmethykatoon is an issue especially in comt met met. Niacin mops up extra methyls but too much causes depression. So you can end up a yo yo.

Thanks. The only issue is Niacin increases histamines. It's also a vasodilator and can contribute to inflamation.

 

[kmiki7]

React to b2? In what way??

Hey, just wondering, did you end up trying B2 and did it help? Are you any better? I'm in a somewhat similar situation and wondering if B2 deficiency might be my issue too.