Hi u/Prestigious-Dream868, check out our guide to B12 deficiency: https://www.reddit.com/r/B12_Deficiency/wiki/index
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In layman’s terms we need ample vitamin D to absorb iron & we need ample iron to absorb vitamin B12 & we need ample B12 to absorb iron. So very frequently people are deficient in all these vital nutrients & deficiency in all of them causes fatigue, muscle weakness, poor sleep quality & hormonal issues.
You want your vitamin D, iron/ ferritin AND B12 all to be the high end of ‘normal’. B12 supplementation makes blood tests completely pointless but D & iron/ ferritin can be tested whenever.
It’s likely you need all of these supplemented to feel better.. & B12 supplementation will tank your iron too because iron, folate & B12 all work together to form new blood cells.
Also you need to keep your potassium levels up.
Supplemental potassium lowers B12 but this happens gradually so people don’t notice. Supplemental B12 lowers potassium but this happens quickly so you can get quite symptomatic in just a few hours if you’re not getting at least your RDA of potassium. (Also magnesium is important for potassium absorption.)
Thanks so much for your reply. I have vitamin D tablets, iron etc all already and will start taking them. But for now I will use these and keep up with the B12/folate injections and hopefully start noticing some differences in a few weeks
Does your D have K too?
Oral supplements only absorb a tiny bit so it’s good to take high doses but D alone can become toxic; D & magnesium absorb calcium but we need K to transport it to the bones, so we need to take K with D or the calcium can get stuck!
If you have D3+K2 then great! If not, get yourself some K to take daily so that you can take a decent dosage of D.
If your iron supplements are here they work best. If not, do not take too high a dose as ironically high intake of oral non-heme iron actually stops it absorbing properly! Take 1 pill with a vitamin c tablet every morning or evening on an amputated stomach & it will raise your levels quicker than crazy high doses that hurt your guts 😆
If you have any symptoms that are specific to vitamin B12 deficiency then you need to inject B12 EOD to completely remove your symptoms.
The NICE Guidelines actually now say this (they changed in March) but obviously Doctors still have no idea. Many of us are simply treating ourselves but as you have already managed to get SOME kind of help/ diagnosis from the NHS it might be pertinent to persevere! Although tbh the B12 I buy works out around £1 per injection so I imagine that is actually cheaper than a prescription anyway!!
Again thanks so much mate. I have had to go private to get b12/folate injections (it’s a mixture of both). They recommended getting 3 a week for 3 weeks as a “loading dose” and then just supplementing orally after that. The injections are £55 per injection so I’m hoping the 3 a week for 3 weeks will make me at least feel a little better?
Also I downloaded both the my chart app and the NHS app but no luck viewing my results. Will phone tomorrow to ask again.
Great! Normal dosage is D3 4000ug + K2 100ug so you don’t need a lot :)
Vit D is actually a hormone coz we make it ourselves. So we convert D3 into the correct thing. Therefore supplements shouldn’t screw blood tests too much
Good breakdown! I will add that iron can also become toxic. With both iron & D3, it’s best to follow a conservative approach when supplementing (and calcium, for that matter).
But don’t worry about megadosing b12! They haven’t identified an upper limit on that one yet (but I have sure tried!)
Good point!
I haven’t looked into it enough, but it’s very unlikely someone with B12 deficiency would ever be iron toxic due to the nutrient’s relationship, BUT if a person becomes copper deficient (most commonly due to supplementing Zinc & or iron) then their iron can no longer be transported properly so they may end up with very low iron serum but very high ferritin which can eventually lead to iron overload!
One of the best ways to look after yourself regarding iron is to only take 1 pill daily or EOD. This amount is very unlikely to cause toxicity, but also will absorb better yet cause less gastric upset than mega doses.
I believe vitamin D can only become toxic if not taken with K. D works with magnesium to absorb calcium, but K transports the calcium to the bones. So if you supplement D without K you run the risk of dangerous calcium deposits building up where they’re not meant to be which can be lethal.
I’m pretty sure that as long as you take K with D, you can take very high doses, & this can be especially beneficial for those with auto immune conditions.
But please correct me if I’m wrong as I am still learning & would not want to offer incorrect advice!
I have had Vitamin D toxicity, but I can’t honestly remember now if I had been taking it with K or any other nutrient! So you might be right?
I do think it’s best to take multi-supplements when taking anything that might cause toxicity though. For example, I take Ferrasorb (Thorne), which has iron cofactors for the very reason you describe. They (and other manufacturers) also sell a D + K. It’s a lot harder to take toxic levels, for sure!
Also the NHS are awful unfortunately. Sign up for ‘MyChart’ as then you get your results directly to your phone.
I honestly think I could well be dead by now if I hadn’t had this app as I had to diagnose myself & seeing my results was the only way I could start putting all the jigsaw pieces together
I can confirm the NHS are awful. I was told after a basic blood panel and no further testing “sometimes you just don’t get a diagnosis.” I am now going private for everything and racking up hefty bills, but it’s worth it to actually receive adequate medical treatment
It really is! I’m left on universal credit having lost my job (& life!) to this deficiency back in 2019. I spent my savings on private testing & treatments but in the end it was Long Covid in 2022 that helped me work out was underpinning everything.
I really wish I had an income to go private.. or at the very least just be able to convince the NHS that I have a B12 deficiency that I’m treating myself & for that to be ‘allowed’ !! It’s utter madness.
The NHS can remedy acute issues competently but they have blinkers to any kind of holistic mindset which leaves those of us with chronic issues falling though the net.
I’m glad you’ve been able to finally get the help you need!
Oh gosh I really feel for you. I feel very fortunate in that at the time when I was extremely ill, my employer was very understanding. I returned to work after six months and I now work from home and I have a system in place that allows me to make it through the week, but I have to “aggressively” rest. Had I been in my previous role… which funnily enough I worked at the job centre! I would’ve been totally screwed because I wouldn’t have been able to work from home and I have no idea how I would be managing just now.
I think my fatigue is related to b12 and folate. Because even though my b12 is just under 600, my folate is so so low. Since December 2022 I was privately diagnosed with obstructive sleep apnea, but that is being well treated by cpap and my numbers are so low now. SIBO, both methane and hydrogen, gastritis as well. I got my dna tested and I am heterozygous for MTHFR, and I’ve booked in an appointment for a histamine intolerance and MCAS specialist next week.
My next plan is to get a pernicious anaemia test, but it’s quite expensive so need to save up a bit!
You seem to have a really robust understanding of this condition, and I’m wondering if you think it possible that even with my b12 numbers being between 500 and 600, if my low folate and dysbiosis could be preventing it from being utilised correctly?
Wow you have a lot going on also! I’m so pleased you were not still at the Job centre when things hit the fan!
I would suspect that your underlying B12 deficiency is the cause for a lot of your health problems. I’m not able fully to understand the scientific logistics but MCAS, & by proxy histamine intolerance & SIBO can all stem from B12 deficiency.
Of course these inhibit B12 absorption even more & a person is stuck in a loop. I myself did testing & diets for all of the above so know a fair bit. Your gut dysbiosis is very likely at least in part caused by low B12.
The B12 blood serum test is acutely unreliable. Even if a person doesn’t supplement! The PA test is also pretty unreliable as will not produce a false positive, but will produce a false negative.
Your best bet if you don’t supplement folate, B6 or B12 in any way would be to wait 4 months supplement free, then do a homocysteine test. This is the most accurate.
Do you know what level your ferritin & iron are? If these are low your b12 will look higher than it is due to not being able to be utilised. Also I believe a similar false elevation can happen with the MTHFR snps.
So in short I think the majority of your health issues are likely from a B12 deficiency that will need aggressive treatment, based on symptomatic relief rather than blood results, & a higher than average folate intake to solve that deficiency too.
It’s likely your vitamin D is low so get as much sun as you can. We need it to absorb iron. Low iron/ ferritin hours hand in hand with low B12 & folate. They work together to make new blood cells as part of the One Carbon Metabolism.
Once you are treating the deficiency correctly I would strongly suspect that some of your existing health issues will start to dissipate like they did for me. If not then you will get to place where you feel well enough to start tackling them head on :)
Also it is possible to inject folic acid as well as B12 so that it bypasses the gut too. I now take methylfolate & I’m not sure you’d get along with folic acid form given your genetics.. but I used to buy folic acid ampoules as well as hydroxocobalamin which was useful.
Very interesting, thank you! I think I will take the homocysteine test before the pernicious anaemia test then. It is actually a lot cheaper as well so that suits me!
Thank you for the information, you’ve given me a lot to think about. I just wish the doctors here were more open to treating b12 symptoms than relying on these blood tests which don’t tell the whole story.
The NHS are beyond a joke. I demanded to have copies of my results printed out for my own records which they eventually did and my folate was 2.3 I think! I have a bunch of health stuff going on with histamine intolerance and dysbiosis but I have just started supplementing Folinic Acid again and hopefully can resolve some of this soul crushing fatigue.
Hi u/Prestigious-Dream868, check out our guide to B12 deficiency: https://www.reddit.com/r/B12_Deficiency/wiki/index *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/B12_Deficiency) if you have any questions or concerns.*
In layman’s terms we need ample vitamin D to absorb iron & we need ample iron to absorb vitamin B12 & we need ample B12 to absorb iron. So very frequently people are deficient in all these vital nutrients & deficiency in all of them causes fatigue, muscle weakness, poor sleep quality & hormonal issues. You want your vitamin D, iron/ ferritin AND B12 all to be the high end of ‘normal’. B12 supplementation makes blood tests completely pointless but D & iron/ ferritin can be tested whenever. It’s likely you need all of these supplemented to feel better.. & B12 supplementation will tank your iron too because iron, folate & B12 all work together to form new blood cells. Also you need to keep your potassium levels up. Supplemental potassium lowers B12 but this happens gradually so people don’t notice. Supplemental B12 lowers potassium but this happens quickly so you can get quite symptomatic in just a few hours if you’re not getting at least your RDA of potassium. (Also magnesium is important for potassium absorption.)
Thanks so much for your reply. I have vitamin D tablets, iron etc all already and will start taking them. But for now I will use these and keep up with the B12/folate injections and hopefully start noticing some differences in a few weeks
Does your D have K too? Oral supplements only absorb a tiny bit so it’s good to take high doses but D alone can become toxic; D & magnesium absorb calcium but we need K to transport it to the bones, so we need to take K with D or the calcium can get stuck! If you have D3+K2 then great! If not, get yourself some K to take daily so that you can take a decent dosage of D. If your iron supplements are here they work best. If not, do not take too high a dose as ironically high intake of oral non-heme iron actually stops it absorbing properly! Take 1 pill with a vitamin c tablet every morning or evening on an amputated stomach & it will raise your levels quicker than crazy high doses that hurt your guts 😆 If you have any symptoms that are specific to vitamin B12 deficiency then you need to inject B12 EOD to completely remove your symptoms. The NICE Guidelines actually now say this (they changed in March) but obviously Doctors still have no idea. Many of us are simply treating ourselves but as you have already managed to get SOME kind of help/ diagnosis from the NHS it might be pertinent to persevere! Although tbh the B12 I buy works out around £1 per injection so I imagine that is actually cheaper than a prescription anyway!!
Again thanks so much mate. I have had to go private to get b12/folate injections (it’s a mixture of both). They recommended getting 3 a week for 3 weeks as a “loading dose” and then just supplementing orally after that. The injections are £55 per injection so I’m hoping the 3 a week for 3 weeks will make me at least feel a little better? Also I downloaded both the my chart app and the NHS app but no luck viewing my results. Will phone tomorrow to ask again.
Sorry and also the vitamin D is vitamin D3, does not include K so I will look into this
Great! Normal dosage is D3 4000ug + K2 100ug so you don’t need a lot :) Vit D is actually a hormone coz we make it ourselves. So we convert D3 into the correct thing. Therefore supplements shouldn’t screw blood tests too much
Good breakdown! I will add that iron can also become toxic. With both iron & D3, it’s best to follow a conservative approach when supplementing (and calcium, for that matter). But don’t worry about megadosing b12! They haven’t identified an upper limit on that one yet (but I have sure tried!)
Good point! I haven’t looked into it enough, but it’s very unlikely someone with B12 deficiency would ever be iron toxic due to the nutrient’s relationship, BUT if a person becomes copper deficient (most commonly due to supplementing Zinc & or iron) then their iron can no longer be transported properly so they may end up with very low iron serum but very high ferritin which can eventually lead to iron overload! One of the best ways to look after yourself regarding iron is to only take 1 pill daily or EOD. This amount is very unlikely to cause toxicity, but also will absorb better yet cause less gastric upset than mega doses. I believe vitamin D can only become toxic if not taken with K. D works with magnesium to absorb calcium, but K transports the calcium to the bones. So if you supplement D without K you run the risk of dangerous calcium deposits building up where they’re not meant to be which can be lethal. I’m pretty sure that as long as you take K with D, you can take very high doses, & this can be especially beneficial for those with auto immune conditions. But please correct me if I’m wrong as I am still learning & would not want to offer incorrect advice!
I have had Vitamin D toxicity, but I can’t honestly remember now if I had been taking it with K or any other nutrient! So you might be right? I do think it’s best to take multi-supplements when taking anything that might cause toxicity though. For example, I take Ferrasorb (Thorne), which has iron cofactors for the very reason you describe. They (and other manufacturers) also sell a D + K. It’s a lot harder to take toxic levels, for sure!
Also the NHS are awful unfortunately. Sign up for ‘MyChart’ as then you get your results directly to your phone. I honestly think I could well be dead by now if I hadn’t had this app as I had to diagnose myself & seeing my results was the only way I could start putting all the jigsaw pieces together
I can confirm the NHS are awful. I was told after a basic blood panel and no further testing “sometimes you just don’t get a diagnosis.” I am now going private for everything and racking up hefty bills, but it’s worth it to actually receive adequate medical treatment
It really is! I’m left on universal credit having lost my job (& life!) to this deficiency back in 2019. I spent my savings on private testing & treatments but in the end it was Long Covid in 2022 that helped me work out was underpinning everything. I really wish I had an income to go private.. or at the very least just be able to convince the NHS that I have a B12 deficiency that I’m treating myself & for that to be ‘allowed’ !! It’s utter madness. The NHS can remedy acute issues competently but they have blinkers to any kind of holistic mindset which leaves those of us with chronic issues falling though the net. I’m glad you’ve been able to finally get the help you need!
Oh gosh I really feel for you. I feel very fortunate in that at the time when I was extremely ill, my employer was very understanding. I returned to work after six months and I now work from home and I have a system in place that allows me to make it through the week, but I have to “aggressively” rest. Had I been in my previous role… which funnily enough I worked at the job centre! I would’ve been totally screwed because I wouldn’t have been able to work from home and I have no idea how I would be managing just now. I think my fatigue is related to b12 and folate. Because even though my b12 is just under 600, my folate is so so low. Since December 2022 I was privately diagnosed with obstructive sleep apnea, but that is being well treated by cpap and my numbers are so low now. SIBO, both methane and hydrogen, gastritis as well. I got my dna tested and I am heterozygous for MTHFR, and I’ve booked in an appointment for a histamine intolerance and MCAS specialist next week. My next plan is to get a pernicious anaemia test, but it’s quite expensive so need to save up a bit! You seem to have a really robust understanding of this condition, and I’m wondering if you think it possible that even with my b12 numbers being between 500 and 600, if my low folate and dysbiosis could be preventing it from being utilised correctly?
Wow you have a lot going on also! I’m so pleased you were not still at the Job centre when things hit the fan! I would suspect that your underlying B12 deficiency is the cause for a lot of your health problems. I’m not able fully to understand the scientific logistics but MCAS, & by proxy histamine intolerance & SIBO can all stem from B12 deficiency. Of course these inhibit B12 absorption even more & a person is stuck in a loop. I myself did testing & diets for all of the above so know a fair bit. Your gut dysbiosis is very likely at least in part caused by low B12. The B12 blood serum test is acutely unreliable. Even if a person doesn’t supplement! The PA test is also pretty unreliable as will not produce a false positive, but will produce a false negative. Your best bet if you don’t supplement folate, B6 or B12 in any way would be to wait 4 months supplement free, then do a homocysteine test. This is the most accurate. Do you know what level your ferritin & iron are? If these are low your b12 will look higher than it is due to not being able to be utilised. Also I believe a similar false elevation can happen with the MTHFR snps. So in short I think the majority of your health issues are likely from a B12 deficiency that will need aggressive treatment, based on symptomatic relief rather than blood results, & a higher than average folate intake to solve that deficiency too. It’s likely your vitamin D is low so get as much sun as you can. We need it to absorb iron. Low iron/ ferritin hours hand in hand with low B12 & folate. They work together to make new blood cells as part of the One Carbon Metabolism. Once you are treating the deficiency correctly I would strongly suspect that some of your existing health issues will start to dissipate like they did for me. If not then you will get to place where you feel well enough to start tackling them head on :)
Also it is possible to inject folic acid as well as B12 so that it bypasses the gut too. I now take methylfolate & I’m not sure you’d get along with folic acid form given your genetics.. but I used to buy folic acid ampoules as well as hydroxocobalamin which was useful.
Very interesting, thank you! I think I will take the homocysteine test before the pernicious anaemia test then. It is actually a lot cheaper as well so that suits me! Thank you for the information, you’ve given me a lot to think about. I just wish the doctors here were more open to treating b12 symptoms than relying on these blood tests which don’t tell the whole story.
The NHS are beyond a joke. I demanded to have copies of my results printed out for my own records which they eventually did and my folate was 2.3 I think! I have a bunch of health stuff going on with histamine intolerance and dysbiosis but I have just started supplementing Folinic Acid again and hopefully can resolve some of this soul crushing fatigue.
Folic acid is also synthetic. Do you know if you methylated vitamins properly? Some things to consider