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Hydroxocabalmin injections side effects

Jigsaw

Senior Member
Messages
420
Location
UK
@Learner1 @littlebird6180

Really dumb question, brain not very sharp today, but is there a difference between L-MTHF and just MTHF? I know the L prefix usually signifies free-form amino acids, distinguishing them from non-free-form ones, but have no idea if the L here signifies something similar, or if it means somethimg else, or if it means nothing at all.

Thanks!
 

Jigsaw

Senior Member
Messages
420
Location
UK
I would urge you to consider an alternative already suggested to you. The big dose of B12 has increased your need for folate. What you are experiencing is folate deficiency.

A number of people on PR have reported skin breakouts after starting B12 and these responded to folate.

It is easy enough for you to put this to the test. Take a decent dose of methylfolate every few hours and see if the symptoms subside.

You say you are taking folinic. Maybe you are not taking enough or like some people on PR, folinic is not an effective form for you.

Hi @alicec,

I'm struggling badly at the moment on MB12 injections (1mg/d, but have at least temporarily stopped them). I would love it to be a simple case of either taking the wrong form of folate, or not taking enough potassium, or not enough co-factors, but I've covered all the obvious things (fish oils, extra DHA plus CLO, selenium, zinc + copper, coenzymated B2 and B6, coenz B complex, potassium, vit D3 and K2, Vit A, Vit E, etc) to no avail, and I'm stuck and I would appreciate your advice.

I've also tried TMG (headache, nausea, fatigue), creatine monohydrate (@ a tiny 250mg because I have an issue with chickenpox, shingles, glandular fever, and arginine stimulates the herpes virus in general) and at a 10g (1/2 the recommended loading dose) yesterday, no discernible improvement. Reluctant to increase because of the herpes issue (see my profile info) and anyway think of that as a seperate issue from methylation.

I initially had HUGE improvements using MB12 patches with 1200mcg MB12 + 400mcg plain folic a id, which I wouldn't have thought I'd have been able to convert or use. Found that MTHF 800mcg made me feel very anxious within an hour or so of taking, and this repeats the same experience I had when I switched from folic acid and tried MTHF last year, and the year before that.

Had around 4-6 weeks of being able to get up pretty much every day, drove without wiping myself out, listed vast amounts of items to sell on Preloved, did some cooking - all the normal stuff that I usually can't do. Fantastic.

Had HB12 injections (only two of them, one a day for two days, 1mg again) in late Jan, reacted with my standard toxic response of swollen eyes, lips, nose, nausea and generally feeling poisoned, so switched to MB12 1mg/d.

Didn't give me the same energy burst that I had with the first packet of PurOrganica patches (late Nov thru early Jan). Ordered more patches. Zero good effect from them that time. Continued with the injections. Looked at posts mentioning start-up issues coukd be avoided with bigger 5mg doses. Did one of those, felt better for that day only, still didn't have me up out of bed but felt generally headed in the right direction, woke up next day feeling terrible again. Haven't done it since.

Changed from MTFH to folinic acid, 800mcg. Doesn't seem to cause anxiety like MTHF, but also hasn't apparently improved my overall situation and I'm also getting even more migraines than usual. On the first exposure to MB12 with those patches, I had almost no migraines, no muscle pain, loads of positive changes.

Have tried AdB12 drops, but they seemed to make me immediately worse. Tried low dose of 134mcgs (1 drop = 67mcg), normal-low doses of 1 and 2 mgs, also what seems to be the standard 3mg dose. Produces headache and more fatigue etc. Contains citric acid, and whilst I don't seem to be intolerant of anything that woukd indicate a citric acid sensitivity, it's obv poss that that could the problem there.

Have tried different timings, have tried taking everything together, or all my B12 and folate at same time, after my B6 etc, have tried taking my MB12 and AdB12 seperately from folate (tried before, tried after) or my other supps - I can't hit on the right combo.

Usually, Source Natural's Chem Defense (conenz B2, molybdenum, reduced glutathione) resolves my toxic headaches, but even that doesn't seem to be working for me right now.

Disheartening after being so active in January :-(

Littlebird mentioned L-MTHF - is that still another form of folate, or is it another name for MTHF?

Can usually work out what's going on, but could really use your help as I'm currently just getting myself more and more confused and I don't want to be permanently bed-bound yet again. :-(

Thanks,
Jigsaw
 

Jigsaw

Senior Member
Messages
420
Location
UK
@Jigsaw
Sorry, I want to make sure I don't give ANY incorrect info. So just to be clear, it's L-5-MTHF and I was lucky cause amazon accidentally shipped me two bottles when I only ordered one!
Here is what I'm taking https://www.amazon.com/gp/product/B005OE7IJI/ref=oh_aui_detailpage_o02_s00?ie=UTF8&psc=1

Thanks :)

So I don't know if L-5 MTHF is the same as 5-MTHF......if it is, I seem to have a problem with it, if it isn't - yay! Another supp to try!

iHerb sent me three bottles of mag mal last year, but didn't respond when I told them about shortages and damaged items before, and didn't respond when I told them about the extra mag mal, either.
 

alicec

Senior Member
Messages
1,572
Location
Australia
An initial beneficial effect from B12/folate which then peters out seems to be a common experience.

One possible explanation is that something else has become limiting. Determining what that something else might be (it might be several things and this might change) can be extremely frustrating.

My response about the side effects of the hydroxycobalamin reactions was based on my own experience plus that of many others on PR. Folate depletion is once of the first things that can happen, especially after relatively large doses of B12. Your symptoms were certainly compatible with that.

You now say that you had previously experimented with methylB12 patches plus folic acid and got an initial beneficial response which you have never been able to replicate.

All the things you report still sound like possible folate problems to me, especially the experience with folic acid vs methylfolate. It sounds like what Freddd describes as paradoxical folate deficiency - sensitivity to methylfolate which settles to at least some extent if dose is reduced or if another form which may not be as active is taken, suggesting the problem is too much methylfolate. Actually though more is needed because B12 is increasing the need for folate. Only by increasing will the problems be overcome. Becuase of the sensitivity this may need to be done very slowly.

Of course this might not be the answer in your case but it is worth considering.

I note that you have started with quite high doses of B12. It might be better to start with small doses of B12 and methylfolate and increase slowly until you work out what is the best combination for you.

I don't know if L-5 MTHF is the same as 5-MTHF.

L-5 MTHF (or 6S-5MTHF) is the active stereoisomer of the vitamin - as opposed to D or 6R-5 MTHF which is inactive.

5-MTHF is a bit of an unknown quantity since it isn't accurately labelled. Without any other information it is likely to be a mixture of the two isomers so half is likely to be inactive.

So you need to read labels carefully.
 

Jigsaw

Senior Member
Messages
420
Location
UK
An initial beneficial effect from B12/folate which then peters out seems to be a common experience.[\quote]


One possible explanation is that something else has become limiting. Determining what that something else might be (it might be several things and this might change) can be extremely frustrating.

My response about the side effects of the hydroxycobalamin reactions was based on my own experience plus that of many others on PR. Folate depletion is once of the first things that can happen, especially after relatively large doses of B12. Your symptoms were certainly compatible with that.

You now say that you had previously experimented with methylB12 patches plus folic acid and got an initial beneficial response which you have never been able to replicate.

All the things you report still sound like possible folate problems to me, especially the experience with folic acid vs methylfolate. It sounds like what Freddd describes as paradoxical folate deficiency - sensitivity to methylfolate which settles to at least some extent if dose is reduced or if another form which may not be as active is taken, suggesting the problem is too much methylfolate. Actually though more is needed because B12 is increasing the need for folate. Only by increasing will the problems be overcome. Becuase of the sensitivity this may need to be done very slowly.

Of course this might not be the answer in your case but it is worth considering.

I note that you have started with quite high doses of B12. It might be better to start with small doses of B12 and methylfolate and increase slowly until you work out what is the best combination for you.



L-5 MTHF (or 6S-5MTHF) is the active stereoisomer of the vitamin - as opposed to D or 6R-5 MTHF which is inactive.

5-MTHF is a bit of an unknown quantity since it isn't accurately labelled. Without any other information it is likely to be a mixture of the two isomers so half is likely to be inactive.

So you need to read labels carefully.


Thanks, @alicec

I greatly appreciate your response. All advice and sharing of knowledge and experience very, very welcome!

I thought it might be connected to folate depletion/repletion and blocks, but the crash symptoms have been going on for over a month, and I couldn't find any cases on here of it taking so long to resolve. Is the timeline my symptoms are following a usual length?

What dose of MB12 and /or AdB12 would you suggest for me? Could you suggest a titration schedule, even one dependent on response? I see a lot of accounts and recommendations for people to use MB12 not every day (obviously cofactors and folate etc still need to be supplied every day), but to dose every other day, or twice a week, once a week, etc. I understand this from the Go Slow, Start Low theory, and also from the point of view that B12 of is a unique B vit because it is part fat-soluble and not purely water-soluble like the others, and my concern here is that staying too low too long would never achieve repletion. Any advice you can give me about titration would therefore be very helpful.

- The threads I've seen about 5mg MB12 injected, and also multi-dosing 7.5mg injected three times a day - does that approach only work for a minority? (I think it was on one of either RvanK's Fredd's threads. It was suggested as a way to avoid start-up difficulties. The multi-dosing @7.5mg was included in a piece about Zones.)

Is it best to take MB12 and AdB12 together, or to stick to one form at a time, say for a couple of weeks, a month, something like that, before either swapping one for the other, or adding the other in? I understand that they should both inter-convert, but am unsure that I am achieving this, at least currently (it certainly felt as though my mitochondria were being fed when I was using the first lot of MB12 patches. I even went for an actual walk!) Would it be a good option to use divided doses of the specified low dose of MB12/ AdB12 throughout the day to maintain consistent serum levels, or is that irrelevant / self-defeating at this stage of sensitivity?

Is it essential to get all the cofactors and folate in prior to injecting MB12 or using oral AdB12 drops, or can you take the cofactors, folate, etc anytime in the day, as long as it is every day?



Would you suggest sticking with methylfolate (something like Dr's Best QuatreFolic), and if so, at what dosage? Is it better to keep the levels up throughout the day by using divided doses rather than one single dose? - I'm not sure of the half-life - or should I stick with folinic acid as an alternative method of potentially opening up my rusty methylation pathways by going in through the back door, which might then make re-methylating easier for my wonky system to handle later?

So if L-MTHF is inactive and needs converting, which I'm clearly having difficulty achieving, presumably I should avoid that for now, but could possibly try it much further down the line when my m'cycle is fully operational again?

Very many thanks for your thoughts on this. My apologies for bombarding you with so many questions, I need to be absolutely clear in working out a specific treatment plan for myself to follow, so obviously I need to be crystal clear on doses, timings, etc.
 
Last edited:

alicec

Senior Member
Messages
1,572
Location
Australia
if L-MTHF is inactive and needs converting

The L or 6S form (different names for the same thing) is the active form - this is the one you want. Quatrefolic and metafolin contain this form (though use different salt partners). Other sources may be ok you need to check the label carefully.

but the crash symptoms have been going on for over a month, and I couldn't find any cases on here of it taking so long to resolve.

From your post I had the impression you were continuing to use fairly high dose methylB12. This would be the reason for the ongoing symptoms.

I suggest you stop B12/folate and let things settle down. This could take some time.

Continue taking other supplements that you find helpful.

When you are ready to try again start with a sublingual methylB12 (so you can start with a small dose) and your preferred form of L-methylfolate. Swallow the folate and place the B12 between upper gum and lip rather than sublingually (it dissolves more slowly this way and you will get better absorption). Aim for 3-4 small doses spread through the day.

Here is a post I wrote about introducing B12/folate for a very sensitive person. You may not need to proceed quite so cautiously.

How small a dose you start with,the rate you increase dose and how high you go is entirely dependent on your own responses.
 

Jigsaw

Senior Member
Messages
420
Location
UK
@alicec

Thanks for the detailed information. That gives me a good starting point.


The catch is that for some people at least, making active B2 from riboflavin has multiple stumbling blocks (eg good thyroid function, a good supply of minerals such as molybdenum, manganese, selenium as well as iodine). This might be the biggest hurdle of all in using active B12s.

That's very interesting to me, because I have always had problems with riboflavin.

Any amount in a B complex /multivit makes me feel violently nauseous, despite it being listed in medical books as "easily converted, no known sensitivities, well-tolerated." The smell of B complexes, and most multi vits, makes me feel sick, I assume because of this.

I've been on T3 at high doses since 2000, because I don't convert enough T4 to T3, effectively causing hypothyroid issues. Even tyrosine, T4's precursor, makes me toxic, and I can only tolerate iodine (the 4 attached molecules in T4, hence the name) at an absolute maximum of 225mcg. If I take more, I feel terrible, presumably because my T4 production is sppressed by exogenous T3, so I don't need all those sets of 4 iodine molecules to attach to thyroid hormone.

I have previously tried to increase my production of 5'deiodinase, the selenium based conversion enzyme for T4 » T3, by taking significantly higher amounts of selenium. No toxic response at high doses, but zero impact on T4 » T3 conversion either.

I wonder if most or all of the people who experience the most severe start-up effects of methylation are hypothyroid?


and also Source Naturals sublingual Flavin Mononucletide (the first step in B2 activation). You would probably need to cut this up, it is very potent, but it can be a good way of bypassing some of the blockages in making active B2.

Hence I have been using this specific product for years! (At full 18mg dose.)


The carnitine issue is something you can also address down the line when you have other things in place. The only way to know if supplemental carnitine is a help is to try it but be warned, it can have a powerful effect. If it does help, then according to Greg's logic, this means you still don't have B2 right.

Also very interesting to me. The first time I ever tried carnitine, c.2008, I could almost literally feel energy rushing through my veins, and I was still wide-awake and alert at 5am (my own fault for following up the 11am first dose with another at 4pm, then 9pm). It was incredible, and I thought I'd found The Solution to my energy problems. It hasn't had the same effect on me for a long time. (I still use it periodically for its action of transporting fatty acids into mitochondria for energy.) I see now that this is perhaps due to taking FMN. Another puzzle-piece in place :)


This is because need for potassium can increase suddenly and cause unpleasant symptoms. Greg says this shouldn't happen if B2 is working, but maybe it isn't and a bit of potassium can be a great help. If needs become very great then B2 becomes the issue to address.

Again, relevant to me as I'm pretty sure I haven't really needed the extra potassium I've been taking as a belt and braces measure. It hasn't improved my situation at all.


Niacinamide can have a "quenching" effect if you get overstimulated from too high a dose.

What about niacin? I thought niacinamide had a whole set of different actions from niacin, and I thought that it was specifically niacin, not niacinamide, that damped down methylation by counter-acting it. What have I misunderstood?
 

alicec

Senior Member
Messages
1,572
Location
Australia
What about niacin? I thought niacinamide had a whole set of different actions from niacin, and I thought that it was specifically niacin, not niacinamide, that damped down methylation by counter-acting it. What have I misunderstood?

There's not much difference between them. Niacin is converted to niacinamide in the body and this is turn is converted to the active form NAD+. So in terms of B vitamin (co-factor) activity they are interchangeable. Some people can't tolerate the flushing effect of niacin and prefer niacinamide.

Supposedly only niacin is effective (in very high doses) at reducing blood lipids though I have seen some disputation about this. In any case this is a different action from the vitamin cofactor effect.

Niacinamide is the species that is methylated but niacin would have the same effect since it is converted to niacinamide in the body. 100 mg niacinamide seems to be enough to have an observed effect.
 

Jigsaw

Senior Member
Messages
420
Location
UK
@alicec

I've successfully lowered lipds with niacin, but not niacinamide.

I switched from niacin to niacinamide because niacin can raise blood sugar, and my HbA1C came back borderline after they'd reduced the cut off point for type 2 diabetes from 55 to 45 (Metformin, anyone?)

My HbA1C came back lower, but my cholesterol panel was higher.

Juggle, juggle. Balls everywhere!

Also, there are studies demonstrating that niacinamide has a similar action to benzos, which niacin doesn't seem to have. It may be down to dose of niacin in relation to conversion rate of niacin to niacinamide. I evidently have multiple conversion blocks, and have little confidence in my ability to convert nian to niacinamide. Consequently, I take both. At least my tryptophan / serotonin pathways are well-fed!
 

Jigsaw

Senior Member
Messages
420
Location
UK
@alicec

So if niacin damps down methylation, and n'mide is methylated, does that mean that niacin picks up methyl molecules and passes them on to n'mide in the conversion process, via the conversion enzyme?
 

alicec

Senior Member
Messages
1,572
Location
Australia
@alicec

So if niacin damps down methylation, and n'mide is methylated, does that mean that niacin picks up methyl molecules and passes them on to n'mide in the conversion process, via the conversion enzyme?

No, both niacin and niacinamide can be methylated. I haven't looked at these pathways for a while and had forgotten that niacin is also methylated. Once the methylated substance is formed it is degraded and excreted. This is a way of dealing with excess niacin/nicotinic acid.

So for the purpose of using up methyl groups, either form is fine.
 

Jigsaw

Senior Member
Messages
420
Location
UK
@Learner1 @Jigsaw @alicec

I just need to say a TREMENDOUS thank you! I went off everything except for the atenolol, LDN and Ketotifen and I started L-MTHF. The past 3 days I feel like a brand new person. I have clean energy, NO crashes, no muscle pain and almost NO brain fog. I haven't felt this good in so long. I can't believe it was so simple and still don't quite understand what happened. My guess is a few things: the b12 shots made me sick, the fludrocortisone and b12 combined were depleting me of too much potassium and i was on the wrong folate. Anyway, I will slowly reintroduce fludrocortisone after another week. I'm terrified this is a total fluke and I"ll wake up tomorrow back in hell. But I genuinely feel GOOD right now. That is not something I ever say.

I did have a TON of bloodwork done right before I started the L-MTHF so maybe that will give further insight too.

But thank you for your valuable advice.
Hi @littlebird6180
How are you doing?

J
 

littlebird6180

Senior Member
Messages
119
I've been doing really well with alternating folinic acid, methylfolate and niacin. I'm having a kidney stone right now but have otherwise been good. I just spent a week in NYC and according to my phone walked an average of 7 miles a day and was able to keep up with everyone. There was only one day when the temps spiked in the 80s that I had to really pace myself.

But so far, this cocktail is really helping me. So thanks again!
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
I've been doing really well with alternating folinic acid, methylfolate and niacin. I'm having a kidney stone right now but have otherwise been good. I just spent a week in NYC and according to my phone walked an average of 7 miles a day and was able to keep up with everyone. There was only one day when the temps spiked in the 80s that I had to really pace myself.

But so far, this cocktail is really helping me. So thanks again!
Great to hear!!
 

Jigsaw

Senior Member
Messages
420
Location
UK
I've been doing really well with alternating folinic acid, methylfolate and niacin. I'm having a kidney stone right now but have otherwise been good. I just spent a week in NYC and according to my phone walked an average of 7 miles a day and was able to keep up with everyone. There was only one day when the temps spiked in the 80s that I had to really pace myself.

But so far, this cocktail is really helping me. So thanks again!
Fantastic! I'm so pleased to hear your progress is continuing :thumbsup:

Walking 7 miles a day - wow, that's brilliant! You must be delighted. I'm so happy you've managed to find the right combo of folate to help you get to this point. Long may your progress continue :)

Do keep us posted. It's always encouraging to hear success stories.

Very best wishes,
J x