VITAMIN B12

General discussions. Feel free to use this like a support group also.
fth
Posts: 45
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Re: VITAMIN B12

Unread post by fth »

Sofa wrote: Sun May 22, 2022 8:20 am
fth wrote: Sun May 22, 2022 8:08 am
Sofa wrote: Thu May 19, 2022 8:20 am

Hi, i also recently started taking B12 supplements because of low leves.

How has it been for you? Has it affected your PSSD?
Hello! I did start the injections on the 26th of April, so almost four weeks ago. I personally got prescribed 1000 mcg twice a week intramuscular. This for 6 weeks, and then I'll have to lower to once a week (unless this exacerbates my symptoms, then I'll go back to twice a week). I personally think I'll be on them for the rest of my life since I have gastrointestinal issues, but we'll see!

Up until now I haven't had any improvement (neither in libido nor my other symptoms like fatigue and brain fog). I'm getting my folate levels checked again next week, as B12 uses up folate as some sort of fuel, so those two need to be balanced as well. I haven't taken folate supplements yet because of the risk of neuropathy when taking too much folate with a B12 deficiency so I wanted to wait a while and take folate supplements according to my bloodwork (some people don't even need additional folate when taking B12, it really depends).

I haven't given up hope yet though. I know some stories from people I know in real life. One person was even in a wheelchair from B12 deficiency. For her it took months to notice an improvement, but as of today she's able to walk again and no longer needs a wheelchair. She was also suffering from libido problems and those have gone away as well. It can take a really long time, sometimes years.

Because my B12 was really low for my age (127 pmol/l) and because I have gastrointestinal issues I decided to go for injections as opposed to supplements, because with GI issues there's a possibility that supplements/nutrients don't get absorbed. With the injections I don't need to worry about that. Hope this helps! I will update on this forum if I start to get improvements.
Did you Feel a worsening of symptoms? Or have they stayed the same?
I do think I have some worsening regarding fatigue and brain fog, but that could also be contributed to external factors, so I'm not 100% sure if it's the B12 causing it. Libido has been non-existent since 2020 and something that doesn't exist can't get worse lol, so nothing remarkable there.

An initial worsening isn't unheard of though, I think it affects 1 in 10 people if I remember correctly. This should subside after a few weeks or months. I wouldn't let that hold you back. If you have a B12 deficiency and you don't treat it it can lead to irreversible nerve damage, so temporary worsening definitely outweighs whatever you could get if left untreated.

I don't know how this plays into the whole PSSD thing though. I do think that people with a B12 deficiency take longer to recover from PSSD because of the big role it plays in our bodies (just like with regular brain injuries, which can actually deplete your B12 levels because of the amount of B12 that gets used to heal it). Can't think of any negative effects of taking it if you're actually deficient. But I'm no professional obviously, just speaking on what I've researched on this subject.

Edit: Make sure to regularly check your folate levels too. It could be that because of the B12 supplementation that folate is going down and they need to be balanced. Folate deficiency can also cause symptoms. Like I said in the previous comment, not everyone needs to supplement folate as well, so keep an eye on it and talk to your doctor about it. Never take folate on its own if you're deficient in B12 though because of the neuropathy risk.
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Sofa
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Re: VITAMIN B12

Unread post by Sofa »

fth wrote: Sun May 22, 2022 10:17 am
Sofa wrote: Sun May 22, 2022 8:20 am
fth wrote: Sun May 22, 2022 8:08 am
Hello! I did start the injections on the 26th of April, so almost four weeks ago. I personally got prescribed 1000 mcg twice a week intramuscular. This for 6 weeks, and then I'll have to lower to once a week (unless this exacerbates my symptoms, then I'll go back to twice a week). I personally think I'll be on them for the rest of my life since I have gastrointestinal issues, but we'll see!

Up until now I haven't had any improvement (neither in libido nor my other symptoms like fatigue and brain fog). I'm getting my folate levels checked again next week, as B12 uses up folate as some sort of fuel, so those two need to be balanced as well. I haven't taken folate supplements yet because of the risk of neuropathy when taking too much folate with a B12 deficiency so I wanted to wait a while and take folate supplements according to my bloodwork (some people don't even need additional folate when taking B12, it really depends).

I haven't given up hope yet though. I know some stories from people I know in real life. One person was even in a wheelchair from B12 deficiency. For her it took months to notice an improvement, but as of today she's able to walk again and no longer needs a wheelchair. She was also suffering from libido problems and those have gone away as well. It can take a really long time, sometimes years.

Because my B12 was really low for my age (127 pmol/l) and because I have gastrointestinal issues I decided to go for injections as opposed to supplements, because with GI issues there's a possibility that supplements/nutrients don't get absorbed. With the injections I don't need to worry about that. Hope this helps! I will update on this forum if I start to get improvements.
Did you Feel a worsening of symptoms? Or have they stayed the same?
I do think I have some worsening regarding fatigue and brain fog, but that could also be contributed to external factors, so I'm not 100% sure if it's the B12 causing it. Libido has been non-existent since 2020 and something that doesn't exist can't get worse lol, so nothing remarkable there.

An initial worsening isn't unheard of though, I think it affects 1 in 10 people if I remember correctly. This should subside after a few weeks or months. I wouldn't let that hold you back. If you have a B12 deficiency and you don't treat it it can lead to irreversible nerve damage, so temporary worsening definitely outweighs whatever you could get if left untreated.

I don't know how this plays into the whole PSSD thing though. I do think that people with a B12 deficiency take longer to recover from PSSD because of the big role it plays in our bodies (just like with regular brain injuries, which can actually deplete your B12 levels because of the amount of B12 that gets used to heal it). Can't think of any negative effects of taking it if you're actually deficient. But I'm no professional obviously, just speaking on what I've researched on this subject.

Edit: Make sure to regularly check your folate levels too. It could be that because of the B12 supplementation that folate is going down and they need to be balanced. Folate deficiency can also cause symptoms. Like I said in the previous comment, not everyone needs to supplement folate as well, so keep an eye on it and talk to your doctor about it. Never take folate on its own if you're deficient in B12 though because of the neuropathy risk.
After taking cyanocobalamin 1000 mcg for five days, my anhedonia is the worst its ever been. I also have gotten a crushing depression. It is really hard.

My inner restlessness (akathisia) is also worse, as are my restless legs.

I am just scared i am making myself permanently worse. I hear of people saying B12 is a methylator that can epigenetically alter DNA and therefore cause permanent damage, but i dont know if it is true.

Do you think my worsening now is just normal? Or have i permanently screwed up?
highman
Posts: 22
Joined: Thu Jun 17, 2021 12:31 am
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Re: VITAMIN B12

Unread post by highman »

Hi,

I have cyanocobalamin B12. Does that mean this form doesn't work well? Is better to use injection?
in_the_void
Posts: 2
Joined: Mon May 17, 2021 1:44 am
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Re: VITAMIN B12

Unread post by in_the_void »

Sofa wrote: Sun May 22, 2022 1:14 pm
fth wrote: Sun May 22, 2022 10:17 am
Sofa wrote: Sun May 22, 2022 8:20 am

Did you Feel a worsening of symptoms? Or have they stayed the same?
I do think I have some worsening regarding fatigue and brain fog, but that could also be contributed to external factors, so I'm not 100% sure if it's the B12 causing it. Libido has been non-existent since 2020 and something that doesn't exist can't get worse lol, so nothing remarkable there.

An initial worsening isn't unheard of though, I think it affects 1 in 10 people if I remember correctly. This should subside after a few weeks or months. I wouldn't let that hold you back. If you have a B12 deficiency and you don't treat it it can lead to irreversible nerve damage, so temporary worsening definitely outweighs whatever you could get if left untreated.

I don't know how this plays into the whole PSSD thing though. I do think that people with a B12 deficiency take longer to recover from PSSD because of the big role it plays in our bodies (just like with regular brain injuries, which can actually deplete your B12 levels because of the amount of B12 that gets used to heal it). Can't think of any negative effects of taking it if you're actually deficient. But I'm no professional obviously, just speaking on what I've researched on this subject.

Edit: Make sure to regularly check your folate levels too. It could be that because of the B12 supplementation that folate is going down and they need to be balanced. Folate deficiency can also cause symptoms. Like I said in the previous comment, not everyone needs to supplement folate as well, so keep an eye on it and talk to your doctor about it. Never take folate on its own if you're deficient in B12 though because of the neuropathy risk.
After taking cyanocobalamin 1000 mcg for five days, my anhedonia is the worst its ever been. I also have gotten a crushing depression. It is really hard.

My inner restlessness (akathisia) is also worse, as are my restless legs.

I am just scared i am making myself permanently worse. I hear of people saying B12 is a methylator that can epigenetically alter DNA and therefore cause permanent damage, but i dont know if it is true.

Do you think my worsening now is just normal? Or have i permanently screwed up?
It's hard to tell. People are here who were severely screwed up from Vit B12 and as you can see there's also people who are completely unaffected from this. But in the end it's unlikely you are permanently screwed up, in many cases it usually takes few months to get back to the baseline after a crash. IMHO, you should stay clean for atleast few months and observe your improvements. There's a very high chance that you'll get back to your baseline.
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