When to re-test?

[EiCa]

HelloI am fairly new to injections. My B12 was below 150 before I started and my MMA and homocysteine were alarmingly high. (more than 2-3 times what they should be). How do I find out if this B12 therapy is working if I can’t have any labs done while I am taking injections? I realize my serum B12 could be artificially high but could looking at how much MMA and homocysteine has changed be accurate, as they indicate activity at the cellular level. (I think). I was going to do 6 months of injections, wait a month and then get these 3 labs tested. The doctors were quite alarmed at my levels so I need some reassurance that the B12 is working as I am experiencing worsened symptoms since beginning. I have several confirmed genetic mutations that affect B12 methylation. Thank you to anyone who can help me understand.

[Gambit62 Administrator]

If you want to double check if MMA and homocysteine have been reduced by the shots you can do this at any time.This post mentioned that a repeat of MMA had shown levels had fallen, which would imply that the B12 is getting through to your cells.

healthunlocked.com/pasoc/po...

I suggest you keep a diary of symptoms and how they change with time, and when you do injections.

[EiCa in reply to Gambit62]

Thanks Gambit. Yes, I keep a journal of symptoms, treatment, diet etc.. I have a host of co-morbitities and it is very difficult to sort out which ones are due to B12 deficiency and which ones are not. I suspect that many symptoms are, but I was not diagnosed for decades; I ended up figuring out a lot of it too late. That said, you are right. I DID mention my MMA going down on an earlier post, but a specialist ordered it after just two injections (he didn't even know I was getting injections at the time; he just ordered it as part of a panel, shocking though that is) Anyway, I have had 3 MMA's in two years and one was sky-high and the next one was very high and then after I finally got the hydroxy and had just 2 injections the MMA was zero? Seems too good to be true. If that is the case, it seems this would be a functional deficiency. As stated, the shots are making me pretty sick, so I would like to know if they are actually getting into my cells or if the B12 is just circulating around in my blood making me sick. I probably need a neurologist but so far no doctor is taking this seriously enough except to tell me to supplement. I am self-injecting and kind of figuring this out all on my own because after seeing 5-6 doctors/practitioners I have discovered just how little doctors really know about B12 deficiency. I am not trying to waste anyone's time here. Just looking for more guidance. I spend a lot of time trying to figure this out by studying on the internet and looking at my lab tests/genetics.

I will try not to post any more redundant questions but I only got one answer the first time (thanks Denise) and I was wondering if anyone else had any advise about when to test again...since it seems everyone says once you are supplementing testing isn't useful. With my two scary and very very high MMA and homocysteine tests, I guess I just need to know how I know what to do next. This is all a guessing game for me and my doctors are worthless.

[Gambit62 Administrator in reply to EiCa]

MMA was sky high before injections when you were deficient. The injections resolved it but if I understand correctly you haven't retested MMA since so you don't know what it is like now.

[EiCa]

The crux of my question is...are MMA and homocysteine levels better indicators of B12 injections working since having levels of B12 tested, during treatment, just means it is in your blood. If so it is a functional deficiency that should/could be easily fixed but it seems like two injections couldn't possibly have fixed it. Does a functional deficiency stay with a person forever thus requiring regular injections? I have suffered for decades with so many things that lkely could have been B12 related (or not) I have had 5 injections so far but I am having a very hard time tolerating them but maybe that is healing going on? I read this site every day trying to get educated and help myself.

[ForViolet]

I've never heard that the MMA and homocysteine levels can be used to help measure benefit from B12 shots. I'd do an internet search first. Then you'll have a little more info.

To see about your question on whether a deficiency requires ongoing shots, I'd look on this forum under stuff like, Can I reduce my injections as time goes by?

But feeling sick after your shots doesn't sound good. How long does that last? I'd check this forum for that too. Put it in the search box, instead of just reading this site. That might work better.

[ClareP5]

GPs freak at high levels of B12 post injections🙈you’re right it’ll show in MMA and homocysteine. Some of us get reversing out syndrome and I think some of my pains are the nerves healing - it’s a bit freaky and worrisome. But my energy and mental mood are improved, not every day, so I say persist! Not a doctor🤣

[EiCa in reply to ClareP5]

Thank you Clare! I am not quite sure I understand. Would the MMA and homocycteine be artificially high during supplementation (like the serum B12) or does that mean it is already getting into my cells (where it belongs). "reversing out" syndrome is a good descriptor.

[ClareP5 in reply to EiCa]

I would need to go back and read Dr Chandy’s book - I will try and look later today. Really recommend you get it, if you can as it gives you the knowledge to manage your condition. I confess some of the chemistry was beyond me🤣🤣🤣