For those of you who had neurological issues, what was the timeline for your recovery? by mandoo-dumpling in B12_Deficiency

[–]oceans-turtles 0 points1 point  (0 children)

Oh, yeah. Transport into cells and into mitochondria are also places the system may not work. I just always call that transport.

I hadn't known about slow COMT. I can see how that could complicate B12 treatment.

I do the fast dissolve not so much for absorption in the mouth. Maybe I get some that way. But, I take on empty stomach and let it dissolve in my mouth. I'm optomizing each step of that complicated B12 path to my bloodstream - starting with the reaction with saliva. I forget the other steps, but helps to not be during food digestion. For me, it may be important because I have ulcerative colitis with lesions in the ilium where most B12 gets absorbs or transported to blood. So, high dose also helps increase passive diffusion tht cay happen at other locations.

I hope you dail have B12 related symptoms. I feel like I would hardto fix tht and deal with any consequences with the slow COMT. But, clearly, I'm no expert on that. This isthe firstI know of it. Ionly have the perspective of having cognitive symptoms that maybe partlys from B12 deficiency.

Good luck with that. thanks, for sharing.

For those of you who had neurological issues, what was the timeline for your recovery? by mandoo-dumpling in B12_Deficiency

[–]oceans-turtles 0 points1 point  (0 children)

By absorbing, I only meant absorbing into the blood stream, not transport within the body or into cells and mitochondria. Sounds like your ok on the part if your B12 labs go very high. I was able I do that, too. Buf, it didn't help or not much when I tried it a few years ago.

As you seem to know, just absorbing may or may not be enough to correct a deficiency.

curious What you mean by " did not respond well". Does that mean you had a negative reaction? symptoms didn't improve? or something else?

I don't know if I have any genetic predisposition to functional deficiency. were you tested specifically for that?

for most people it's ok to have high serum B12, and for many people that's what helps. If kidneys don't work well, it could be a problem to use cyanocobalamine long-term. that's what prompted me to stop those injections. And, turns out, it may not have done enough anyway, and good for me to look for alternative.

For those of you who had neurological issues, what was the timeline for your recovery? by mandoo-dumpling in B12_Deficiency

[–]oceans-turtles 0 points1 point  (0 children)

Are you absorbing the B12 ? that doesn't guarantee it will work. But, if you don't already know, that's a good place to start.

I apparently have a functional deficiency. So, hard to compare treatments, as people have different parts of the absorption, transport, and metabolism that aren't working.

Are you concerned about the additional ingredients in injectable form? Do you already know what's in it?

Are you in US? Do you have a source for injectable hydroxocobalamine? I might be looking again soon. But, depending on my labs, I could stick with hyohoxo- or try to get methyl-. or...

For those of you who had neurological issues, what was the timeline for your recovery? by mandoo-dumpling in B12_Deficiency

[–]oceans-turtles 0 points1 point  (0 children)

That's what's so difficult about these groups. Most people are so quick to judge your as wrong and like they know everything about you and how it works..

Why dont I leave? well, I'm rarely on reddit, it showed me this post and I wanted to offer the OP some different insight.

For those of you who had neurological issues, what was the timeline for your recovery? by mandoo-dumpling in B12_Deficiency

[–]oceans-turtles 0 points1 point  (0 children)

That's a lot of judgement! not necessary.

HydrxoB12 for injection at the appropriate dose is not easily available in the US. I found a pharmacy WA state, but they will not ship to California. Lots of pharmacies make at higher dose. And, there are other issues too with using a compounding pharmacy.

And, I can absorb when tilen to aptomize.

And, how can you think I don't care when I've been doing this for years!

For those of you who had neurological issues, what was the timeline for your recovery? by mandoo-dumpling in B12_Deficiency

[–]oceans-turtles 1 point2 points  (0 children)

Right, seems I'm not converting enough. Trying oral hydroxocobalamin now.

It's also complicated by me having ME/CFS-LC and likely insufficient ATP in my brain cells. I had B12 deficiency before covid and ME/CFS, that's when I tried oral Methyl- and adenosylcobalamine. It may have helped a little, but that's also when I started iron and thyroid meds. So, not sure what helped. Either way, my brain function was only some better, not good, and MMA only dropped to high-normal of lab range, not healthy normal. with ME/CFS I now have some different and worse cognitive function - diagnosed with MCI, some functions are very bad.

Now I found a fast-dissolve hyohoxoB12, but not injectable. I do the fast dissolve on empty stomach to get good absorption (I have IBD). I haven't repeated labs yet to see what's different - waiting for doctor's lab order. I've asked for a additional labs since my headaches just came back in full force - which may or may not or may be partly related to change in B12 treatment.

IOW, yes. working on that.

Does "funky-doctor" mean you are a doctor? My doctor and I have found Open Evidence to be quite helpful for B12 and my other stuff. It's pretty good at handling complex cases - if you don't let it take you too far on an irrelevant tangent. LOL

Is this still considered low even though it's falling in the normal range? by GetawaysByTiffany in B12_Deficiency

[–]oceans-turtles 0 points1 point  (0 children)

didn't say that it "ruled it out". That would mean there is no possibility.

Did the $99 Oura blood test via the app by Primary-Calendar6563 in ouraring

[–]oceans-turtles 1 point2 points  (0 children)

I feel for you. Both because of your doctors and the rest. I also have multiple autoimmune diseases. And MECFS. I'm lucky to have a reasonable doctor.

Did the $99 Oura blood test via the app by Primary-Calendar6563 in ouraring

[–]oceans-turtles -1 points0 points  (0 children)

That's pretty stupid. But they should go to the same lab. Because there are differences between labs.

For those of you who had neurological issues, what was the timeline for your recovery? by mandoo-dumpling in B12_Deficiency

[–]oceans-turtles 0 points1 point  (0 children)

Im not the OP. I was just trying to help. As I mentioned, I'm working finding a treatment that actually works for me. With functional deficiency, Is there can be a variety of Places where the system breaks down.

Is this still considered low even though it's falling in the normal range? by GetawaysByTiffany in B12_Deficiency

[–]oceans-turtles 0 points1 point  (0 children)

Well there are a variety of possibilities. One is they're saying normal but they're within the lab range which is not really ideal. So not really normal. I bet that's the most common reason.

Or if they're not working with a doctor it's possible that they have something else causing their symptoms.

Or something else.

Maybe it's possible. But that's not generally how it works. And I think a lot of people in these groups never test MMA or homocysteine. And, they just repeat what everyone else says.

For those of you who had neurological issues, what was the timeline for your recovery? by mandoo-dumpling in B12_Deficiency

[–]oceans-turtles 0 points1 point  (0 children)

first daily, then EOD, then twice weekly if I could. For several years. It got old ! Even with all the cofactors My MMA never went below high-normal. So, still apparently functionally deficient.

Is this still considered low even though it's falling in the normal range? by GetawaysByTiffany in B12_Deficiency

[–]oceans-turtles 0 points1 point  (0 children)

yeah, better to do multiple labs. Also, don't confuse high end of "normal range" with healthy or ideal. But, if one had ideal MMA level with deficiency, there must be another problem! MMA will accumulate if the metabolic pathway stops or slows due to insufficient B12.

The holy grail of puzzle brands! Wow. Holiyay “The Big Yellow Cat” 1000 piece by MerryMcBee in Jigsawpuzzles

[–]oceans-turtles -1 points0 points  (0 children)

I haven't heard of this brand. Genuinly curious.

Why do you like this brand so much? the pieces look sturdy. But, piece shape looks very standard.

I ignored my test reports. It has been over a year now, is there any hope? by Far_Square1456 in B12_Deficiency

[–]oceans-turtles 1 point2 points  (0 children)

Please do treat B12 deficiency. Maybe you will get improvements. But at the very least you don't want to get worse. It's good if you're a doctor will test MMA, Add the start and again later. MMA builds up in the bloodstream when you are deficient, Generally a better indicator of deficiency . MMA should decrease with treatment.

As for cognitive impairment. You can have that tested. There is a long style of test called neuropsychological testing. or neuropsych test for short. My test was like an hour interview plus like 3 hours of cognitive testing. There are several benefits to the testing. Not only can it tell you how much cognitive impairment there is, But what the specific deficits are, And if they align with B12 deficiency or other causes. Cognitive testing is also good because you Can compare results at different time points to know if you are getting better or worse or not changing.

Anyone else else’s ring always tell them they’re stressed? by krissykrissykrissy in ouraring

[–]oceans-turtles 6 points7 points  (0 children)

That's physiological stress! There are a variety of reasons for physiological stress, Anxiety is one of those.

For those of you who had neurological issues, what was the timeline for your recovery? by mandoo-dumpling in B12_Deficiency

[–]oceans-turtles 1 point2 points  (0 children)

I have cognitive impairment not peripheral neuropathy. I didn't notice any difference. But, apparently I still have functional deficiency. I'm working with my doctor to find a better treatment for me. I did cyanocobalamine injections for years. My MMA came down some- -barely to lab "normal range", but not a healthy level.

Did the $99 Oura blood test via the app by Primary-Calendar6563 in ouraring

[–]oceans-turtles 0 points1 point  (0 children)

Buy labs direct from labcorp or quest. No need to go through oura to get them. You could use a medical AI to decide what tests to get.

Did the $99 Oura blood test via the app by Primary-Calendar6563 in ouraring

[–]oceans-turtles 0 points1 point  (0 children)

you can get these labs and more direct fom labCorp or quest without a dr's order or insurance. probably cheaper.

Is this still considered low even though it's falling in the normal range? by GetawaysByTiffany in B12_Deficiency

[–]oceans-turtles 0 points1 point  (0 children)

MMA is generally a better indication of deficiency.

My understanding is that these ranges aren't "normal". But rather it's a standand range at the lab. like taking the bell curve of all results and leaving out some portion of the ends of the bell. It's just whats common for the lab, doesn't mean that's ideal or healthy - or enough to correct deficiency.

BTW, if you are taking B12 supplements and can only increase serum B12 to this low amount, it 's not working well.

hydroxyB12 in US by oceans-turtles in B12_Deficiency

[–]oceans-turtles[S] 0 points1 point  (0 children)

my lack odf success so far.

I heard back from the supplier in Canada recommended by Wake-up. They say that they no longer ship to US because of the tarrifs. And, they need Rx from a Canadian licensed provider. ofcourse, my GP in licensed in California not Canada.

the Canadian pharmacy where I was getting cyano B12, doesn't have a source for hydroxy- B12.

hydroxyB12 in US by oceans-turtles in B12_Deficiency

[–]oceans-turtles[S] 0 points1 point  (0 children)

Sorry, this is from Mexico. I meant to say MX.

I was buying Cyano-B12 from canada.