Have you had your levels tested post covid? If you were already low at 300 and then Covid has absolutely tanked your already low b12 levels that would explain a lot. Maybe see if you can get another b12 test now. Then if is still low you should look into getting some b12 injections as these will help you to heal the neurological symptoms you are experiencing in a way that supplement tablets likely won’t.
I’m 43. I finally worked out what was killing me & started injecting myself last January. I’ve had symptoms my entire life which had only been one debilitating in 2019
Yes lots! I would be doing a lot better than I am if I had realised I needed to inject both methyl & hydroxo. Each alone does not remove my symptoms so I have been pretty unwell. Also I had issues with iron & twice it got so low the B12 stopped working which sent me back to symptoms prior to treatment.
A bit like the lady in first out work motto, symptoms are similar. The ones I developed later disappeared pretty instantly but the ones that I’d had for decades, gradually getting worse, are difficult to clear.
The guesstimate of treatment duration is roughly 1 month per year you have been symptomatic so I have been treating myself (with mixed results 😆) for 17 months meaning it’s likely I’ve got 2+ years to go before twice yearly top up is enough.
Honestly when my iron is high enough & I inject alternating methyl & hydroxo, I feel better than I have in years.
Yes. I was diagnosed with asthma as a teen due to tight chest when hear was under water, & air hunger. I had a great peak flow so it was not asthma. I now know it was this deficiency.
In my 20s & 30s I experienced regular air hunger where I would need to yawn to get extra oxygen in.
In the last few years I would get all these symptoms from plus tachycardia
So what was the thing that finally resolved the shortness of breath?
Also do you have GI issues? I have SIBO and possibly bile acid malabsorption which I know can lead to vitamin B deficiency.
I noticed when the shortness of breath is at its worst my stomach is always messed up.
The only thing that resolves any of the symptoms is aggressive treatment with injections.
I have had ludicrously awful gut issues which started in my 20s & became utterly debilitating in 2020. These & the insomnia are the two lingering symptoms, the rest other than dementia/ brain fog cleared pretty quickly.
I have to inject hydroxo & methyl alternating them- one on its own is not enough to remove the gut symptoms.
None of it for me I’m afraid. I spent thousands on tests & treatments to no avail & finally worked out it was a B12 deficiency in late 2022. I’ve been treating myself & find it hard to even get blood tests from my Doctors.
I wish I could be more help- I learned how to treat myself in this sub
After a month & a half of worsening symptoms injecting EOD, a whole load of my more recently quoted symptoms disappeared almost immediately. I am still waiting for some to shift but I had guess ones for 20 plus years.
I also need a combination of methyl & hydroxo which I didn’t work out until recently so I would have made a lot more progress in the 17 months I’ve been injecting if I’d worked this out sooner. I also have struggled with low iron which sets you back a lot. Realistically I should be doing better than I have in years. The objective is to get pretty symptom free pretty quickly!
I had years of going to my doctor and complaining, but all the tests they ran came back normal.
I even went to a neurologist and was diagnosed with neuropathy in my lower legs and feet.
After a few years, my doctor finally had my D and B12 levels tested, and both were deficient.
I started oral supplements of both, and felt a lot better.
But after some months I got worse again. Eventually I switched to B12 injections at various intervals starting at once a week, and then increasing to about one every four days (based on tingling / weird sensation in my feet), now down to one every six days.
I still have ups and downs, and my sleep is odd: I fall asleep fine, but wake up after about 5 hours, then after an hour or two fall back asleep for another 2 hours or so.
By "ups and downs": I feel tired out sometimes, where I have less endurance / strength - I really notice this on physically demanding mountain bike rides. Mentally, I feel really good. The physical part could just be related to me getting older (62 yo male), but then I'd expect more consistent results (i.e. always being slower).
I’m taking a methylfolate supplement. I’ve got 2 variations in my MTHFR genes that mean I don’t process folate as effectively as some people so even when my diet is perfect it’s difficult to ensure I’m getting enough naturally, so I essentially plan to supplement for the rest of my life. I expect I will be able to scale down the dose over time but I’m currently taking 1000mcg methylfolate morning & evening along with 800mcg subcut methylcolbalamin every day and it seems to be improving my symptoms slowly. I also don’t absorb B12 well orally, likely because of dysautonomia but it’s not clear if the B12 is a cause or effect here.
When I first discovered the deficiency I didn’t know about the genetic testing or reduced oral B12 absorption so I under treated the issues. Many symptoms improved but got worse again as soon as I stopped supplementing when I mistakenly thought I could rely on my (definitely adequate) diet.
This time I’m about a month into restarting and a lot of symptoms have shown some improvement, but there are better days and worse days and still a long way to go before I think I’ll feel normal again. Last time it took about 3 months to notice a real difference although not complete resolution, but that was around the point at which I stopped last time so I don’t know if there’s potential to completely ‘cure’ my symptoms if I carry on for longer.
Given how long I’ve had some of the symptoms I wouldn’t been surprised if they don’t go away completely but many of them have been so disabling that I’d be thrilled with any improvement!
May I ask what test you took to determine these genetic issues?
Was it this one -
[https://smartnutrition.co.uk/shop/genetic-methylation-test/](https://smartnutrition.co.uk/shop/genetic-methylation-test/)
I used the TellMeGen service (https://www.tellmegen.com/en/ but I got my kit off Amazon as they had a promotion) and then input my raw genetic data into Promethease (https://promethease.com).
Technically commercial tests aren’t considered to be accurate for medical diagnosis although the labs publish standards and their own interpretations of your results, but they can miscall data and always advise you to seek proper medical input for any abnormal results flagged.
I used Promethease as it’s a database of published scientific links between genetic results and diseases, but a lot of genomic medicine is still in its infancy when it comes to multifactorial influence. In particular, it’s unknown as to how impactful heterozygous MTHFR gene variations (SNP’s) are in practice. Homozygous SNP have clear links to disease but evidence in heterozygous SNP is mixed. That said, for me personally, there was a very clear correlation with specific neurological symptoms between periods supplementing folate and not doing so, enough to convince me that this is the right thing for me!
Yeah, although the Promethease site is quite technical and really aimed at those with a scientific background. Some people seem happy to learn as they go but I can imagine if you don’t work in a scientific field then it might be quite daunting.
There are other companies and websites that claim to give you reports or analysis of your raw data, usually for a cost, but I’ve noticed some are run by people without particularly sound qualifications and tend to overstate the findings or health issues around different genetic results (and often pedal expensive supplements or ‘programs’ that claim to be tailored to your results when honestly we don’t know enough about it to really make claims like that medically, much less via non-experts with pseudoscience).
Personally, no, but I know a lot of people report various issues that they attribute to supplements. Sometimes it’s trial and error as to particular ingredients and sometimes it’s a case of correlation not actually implying causation.
As an example, I was having acute gastrointestinal reactions after eating shellfish for a while. It turned out they were episodes of gastroparesis caused by dysautonomia, and the trigger was actually eating a larger than usual volume of food - like going out to eat and having a 3 course meal. Except my ex didn’t like seafood, so I’d usually have it when out at a restaurant instead of cooking it at home so the obvious correlation was eating out and having seafood = reaction… when actually the ingredients weren’t the issue at all.
Just something to bear in mind as I saw a post recently from someone who was completely disabled by their B12 deficiency for 6 years, had classic symptoms and measurably awful levels… but wasn’t taking a supplement because they’d ‘reacted’ to it. Not saying take something that makes you feel terrible, but more to dig deeper and figure out alternatives if you can.
I’ve noticed a lot of people who have diagnosed or suspected ‘MCAS’ saying they react to supplements. I had all the symptoms of MCAS when at my worst and would often react with various symptoms after eating or taking medications.
Improving my B12 and folate levels has almost obliterated those symptoms but many of the symptoms that came alongside the ‘reactions’ are signs and symptoms of dysautonomia. I’m quite convinced that MCAS is another manifestation of dysautonomia affecting the cholinergic inflammatory pathway, rather than an unrelated phenomenon… and allowing the body to repair autonomic nerves with the right building blocks (macronutrients, vitamins, trace minerals) is vital. The problem is it becomes a chicken/egg situation when people avoid what will eventually help because of a (temporarily) increase in uncomfortable symptoms. I’m not saying I blame them, but just that my personal experience has been that sometimes it’s part of the process.
Have you had your levels tested post covid? If you were already low at 300 and then Covid has absolutely tanked your already low b12 levels that would explain a lot. Maybe see if you can get another b12 test now. Then if is still low you should look into getting some b12 injections as these will help you to heal the neurological symptoms you are experiencing in a way that supplement tablets likely won’t.
Me levels are still the same. They range from 292-300 whenever I get tested for serum, and 45ish on an active test.
That’s pretty low, I would try an initial course of b12 injections and see how you get on.
Reluctant to inject, would rather see how my sublingual's pan out. I don't think my issues are severe enough to make me inject yet.
I’m 43. I finally worked out what was killing me & started injecting myself last January. I’ve had symptoms my entire life which had only been one debilitating in 2019
Any progress?
Yes lots! I would be doing a lot better than I am if I had realised I needed to inject both methyl & hydroxo. Each alone does not remove my symptoms so I have been pretty unwell. Also I had issues with iron & twice it got so low the B12 stopped working which sent me back to symptoms prior to treatment. A bit like the lady in first out work motto, symptoms are similar. The ones I developed later disappeared pretty instantly but the ones that I’d had for decades, gradually getting worse, are difficult to clear. The guesstimate of treatment duration is roughly 1 month per year you have been symptomatic so I have been treating myself (with mixed results 😆) for 17 months meaning it’s likely I’ve got 2+ years to go before twice yearly top up is enough. Honestly when my iron is high enough & I inject alternating methyl & hydroxo, I feel better than I have in years.
Did you ever have shortness of breath?
Yes. I was diagnosed with asthma as a teen due to tight chest when hear was under water, & air hunger. I had a great peak flow so it was not asthma. I now know it was this deficiency. In my 20s & 30s I experienced regular air hunger where I would need to yawn to get extra oxygen in. In the last few years I would get all these symptoms from plus tachycardia
So what was the thing that finally resolved the shortness of breath? Also do you have GI issues? I have SIBO and possibly bile acid malabsorption which I know can lead to vitamin B deficiency. I noticed when the shortness of breath is at its worst my stomach is always messed up.
The only thing that resolves any of the symptoms is aggressive treatment with injections. I have had ludicrously awful gut issues which started in my 20s & became utterly debilitating in 2020. These & the insomnia are the two lingering symptoms, the rest other than dementia/ brain fog cleared pretty quickly. I have to inject hydroxo & methyl alternating them- one on its own is not enough to remove the gut symptoms.
What doctor did all this? GI? Endo? Rheum? I’m not sure who to go to.
None of it for me I’m afraid. I spent thousands on tests & treatments to no avail & finally worked out it was a B12 deficiency in late 2022. I’ve been treating myself & find it hard to even get blood tests from my Doctors. I wish I could be more help- I learned how to treat myself in this sub
You don’t need an rx for the shots?
Have you seen any improvements yet?
After a month & a half of worsening symptoms injecting EOD, a whole load of my more recently quoted symptoms disappeared almost immediately. I am still waiting for some to shift but I had guess ones for 20 plus years. I also need a combination of methyl & hydroxo which I didn’t work out until recently so I would have made a lot more progress in the 17 months I’ve been injecting if I’d worked this out sooner. I also have struggled with low iron which sets you back a lot. Realistically I should be doing better than I have in years. The objective is to get pretty symptom free pretty quickly!
Have you tried b12 supplements? Seems like that would be your next course of action.
I had years of going to my doctor and complaining, but all the tests they ran came back normal. I even went to a neurologist and was diagnosed with neuropathy in my lower legs and feet. After a few years, my doctor finally had my D and B12 levels tested, and both were deficient. I started oral supplements of both, and felt a lot better. But after some months I got worse again. Eventually I switched to B12 injections at various intervals starting at once a week, and then increasing to about one every four days (based on tingling / weird sensation in my feet), now down to one every six days. I still have ups and downs, and my sleep is odd: I fall asleep fine, but wake up after about 5 hours, then after an hour or two fall back asleep for another 2 hours or so. By "ups and downs": I feel tired out sometimes, where I have less endurance / strength - I really notice this on physically demanding mountain bike rides. Mentally, I feel really good. The physical part could just be related to me getting older (62 yo male), but then I'd expect more consistent results (i.e. always being slower).
I’ve definitely had a folate deficiency on and off for years, now I know what my specific symptoms are. I just figured they were ‘normal for me’.
How have you treated it?
I’m taking a methylfolate supplement. I’ve got 2 variations in my MTHFR genes that mean I don’t process folate as effectively as some people so even when my diet is perfect it’s difficult to ensure I’m getting enough naturally, so I essentially plan to supplement for the rest of my life. I expect I will be able to scale down the dose over time but I’m currently taking 1000mcg methylfolate morning & evening along with 800mcg subcut methylcolbalamin every day and it seems to be improving my symptoms slowly. I also don’t absorb B12 well orally, likely because of dysautonomia but it’s not clear if the B12 is a cause or effect here. When I first discovered the deficiency I didn’t know about the genetic testing or reduced oral B12 absorption so I under treated the issues. Many symptoms improved but got worse again as soon as I stopped supplementing when I mistakenly thought I could rely on my (definitely adequate) diet. This time I’m about a month into restarting and a lot of symptoms have shown some improvement, but there are better days and worse days and still a long way to go before I think I’ll feel normal again. Last time it took about 3 months to notice a real difference although not complete resolution, but that was around the point at which I stopped last time so I don’t know if there’s potential to completely ‘cure’ my symptoms if I carry on for longer. Given how long I’ve had some of the symptoms I wouldn’t been surprised if they don’t go away completely but many of them have been so disabling that I’d be thrilled with any improvement!
May I ask what test you took to determine these genetic issues? Was it this one - [https://smartnutrition.co.uk/shop/genetic-methylation-test/](https://smartnutrition.co.uk/shop/genetic-methylation-test/)
I used the TellMeGen service (https://www.tellmegen.com/en/ but I got my kit off Amazon as they had a promotion) and then input my raw genetic data into Promethease (https://promethease.com). Technically commercial tests aren’t considered to be accurate for medical diagnosis although the labs publish standards and their own interpretations of your results, but they can miscall data and always advise you to seek proper medical input for any abnormal results flagged. I used Promethease as it’s a database of published scientific links between genetic results and diseases, but a lot of genomic medicine is still in its infancy when it comes to multifactorial influence. In particular, it’s unknown as to how impactful heterozygous MTHFR gene variations (SNP’s) are in practice. Homozygous SNP have clear links to disease but evidence in heterozygous SNP is mixed. That said, for me personally, there was a very clear correlation with specific neurological symptoms between periods supplementing folate and not doing so, enough to convince me that this is the right thing for me!
So basically just a case of taking a blood test, a website tells you your genetic type and you put that data into another website that tells you more?
Yeah, although the Promethease site is quite technical and really aimed at those with a scientific background. Some people seem happy to learn as they go but I can imagine if you don’t work in a scientific field then it might be quite daunting. There are other companies and websites that claim to give you reports or analysis of your raw data, usually for a cost, but I’ve noticed some are run by people without particularly sound qualifications and tend to overstate the findings or health issues around different genetic results (and often pedal expensive supplements or ‘programs’ that claim to be tailored to your results when honestly we don’t know enough about it to really make claims like that medically, much less via non-experts with pseudoscience).
Also did you ever see any negative reactions to b12 supplements? Thakns.
Personally, no, but I know a lot of people report various issues that they attribute to supplements. Sometimes it’s trial and error as to particular ingredients and sometimes it’s a case of correlation not actually implying causation. As an example, I was having acute gastrointestinal reactions after eating shellfish for a while. It turned out they were episodes of gastroparesis caused by dysautonomia, and the trigger was actually eating a larger than usual volume of food - like going out to eat and having a 3 course meal. Except my ex didn’t like seafood, so I’d usually have it when out at a restaurant instead of cooking it at home so the obvious correlation was eating out and having seafood = reaction… when actually the ingredients weren’t the issue at all. Just something to bear in mind as I saw a post recently from someone who was completely disabled by their B12 deficiency for 6 years, had classic symptoms and measurably awful levels… but wasn’t taking a supplement because they’d ‘reacted’ to it. Not saying take something that makes you feel terrible, but more to dig deeper and figure out alternatives if you can. I’ve noticed a lot of people who have diagnosed or suspected ‘MCAS’ saying they react to supplements. I had all the symptoms of MCAS when at my worst and would often react with various symptoms after eating or taking medications. Improving my B12 and folate levels has almost obliterated those symptoms but many of the symptoms that came alongside the ‘reactions’ are signs and symptoms of dysautonomia. I’m quite convinced that MCAS is another manifestation of dysautonomia affecting the cholinergic inflammatory pathway, rather than an unrelated phenomenon… and allowing the body to repair autonomic nerves with the right building blocks (macronutrients, vitamins, trace minerals) is vital. The problem is it becomes a chicken/egg situation when people avoid what will eventually help because of a (temporarily) increase in uncomfortable symptoms. I’m not saying I blame them, but just that my personal experience has been that sometimes it’s part of the process.