How quickly does homocysteine rise following cessation of B12 injections?

[jeremycat_]

Previous post for context: @healthunlocked.com/pasoc/po...

I have been trying to convince doctors that I need daily injections to prevent B12 deficiency symptoms from returning. They simply do not believe it is possible. Therefore I have decided to stop self injecting and allow myself to get worse to try and prove I have an extremely high need for B12.

I'm 5 days in and can feel brain fog and fatigue worsening. I was wondering if anyone knew how quickly homocysteine might rise? Has anyone ever had it tested after injections when symptoms were returning? I'm wondering whether it might just build very slowly over a period of months (since the vast majority of B12 deficiency patients are probably deficient for a very long time before it is picked up)?

[genesurf]

I don't know the answer to your question about homocysteine, but wanted to mention that I successfully lengthened my time between shots from 1 to 21 days. With very frequent shots I was getting tiny painful deep skin cysts (the extra B12 feeds bacteria), and was also worried about excess cobalt building up.

[jeremycat_ in reply to genesurf]

Did you find your body had to adjust to the reduce frequency (i.e. your symptoms initially got worse when reducing)?

How did you settle on 21 days?

Thanks

[genesurf in reply to jeremycat_]

My symptoms gradually become worse over time. After 21 days my mood is flat and maybe little depressed, and I feel more exhausted. But I'm back to normal after my B12 shot.

Hey, question for you-- do you know if you have any gene variations affecting the recycling of BH4? I ask because this past month I've been trying out yogurt made with l reuteri, in order to boost my BH4. I've been surprised to discover that the yogurt seems to alleviate some of the symptoms that I associate with low B12. After two cups of yogurt today, for example, I managed to jog a bit on my daily walk. Usually my legs feel too leaden and I get too exhausted if I push myself like that. But today-- no problem! and I still had energy after the walk. No incessant yawning like I usually have with exercise.

So now I wonder if B12 and BH4 are related biochemically in a way that would explain my symptoms and my need for frequent B12. I think they both affect or are affected by nitric oxide, for example. If you also have issues with BH4 recycling, that would be an interesting coincidence.

[Polaris]

Personally, I’d be a bit wary of doing anything that could increase homocysteine as it could possibly elevate the risk of small stroke/t.i.a., which I and two friends over 70 yrs old with B12def. have already experienced:

my.clevelandclinic.org/heal....

The difficulties proving our case to medics is why so many of us are eventually resigned to self injecting as needed.

[jeremycat_ in reply to Polaris]

Yes in an ideal world I would definitely not be needing to intentionally make myself more unwell. I understand the risks

I do self inject (5mg daily) but even at this frequency I still feel ‘deficient’ so I feel the only way to potentially recover is to get doctors attention by proving I need such high doses.

[PaintLadie in reply to jeremycat_]

I'm in your same boat. I have to inject daily and at one point 5xs a day. B12 inj. are prescription only in the USA and I am constantly fighting to get my daily injections. Yet again Im trying to find a new doctor that will understand. I've even considered buying the animal injections here because they make it so hard to get over the counter or a prescription. I also have methylation issues due to a gene mutation. Maybe like me you are having an issue run along side your pernicious anemia. I've also suffered from low homocysteine which causes a lot of the same symptoms as PA. I had to start taking glutathione and a methyl form of folate. I'm also taking tons of antioxidants and some other amino acids. I'm currently trying to find a doc to help me figure out exactly what I need to be taking so I can lower my Injections hopefully, but with what I've been doing so far I am down to 2 half shots a day. I'm splitting my shot between am and pm.

[Polaris]

PS.

’The H Factor’, by Patrick Holford & Dr James Brady :

“A high homocysteine level is a greater risk factor for heart disease than cholesterol. High homocysteine has been directly linked to over 100 diseases including……..”

[Technoid]

If you have absorption problems/PA this could be quite dangerous as it may cause damage that is not easy to reverse. I don't know how quickly Homocysteine might rise but MMA is a more specific indicator. Neither are foolproof to detect/diagnose deficiency. In short, I'm not sure this is wise and I doubt you'll convince clinicians.

If you wait long enough, even if they ARE convinced, you may accrue damage that is not completely reversible. Up to you but I wouldn't take the risk. You can't trade in permanently damaged nerves for new ones. Spacing out injections for a slightly longer period than before can be done safely but I wouldn't stay off injections for an open-ended period, waiting for something that may never happen.