hi again everyone, really need this clarification please, if you have pernicious anemia or malabsorption b12 and folate defiency , would a multivitamin and increased meat intake (meat overload lol) bring your levels up? I was B12 179ng/l beginning July now apparently I’m 199ng/l folate was July 1.5 not sure what it is now, but does it go up with these things (multivitamin high red meat diet) or would it just continue to go down, thank you in advance,
I also have neurological problems too
I tried but when on b12 Injections. My first ever reading was 106( 200-900)
I didnr hesitate to get Injections as only thing found and was desperately ill.
I needed aggressive b12 treatment.
I tried lots of liver,meat ,b12 oral supplements, sublinguals.
In a bid to have fewer Injections.
I just raised my cholesterol .
I eat what I used to eat now .
A good mixed diet.
Alit of homegrown veg.
I've 'eaten out ' ?3 times in nearly 4 years
I need b12 injections .
Your levels have little change as if a serum b12 blood test there's something like a 20% leeway with results.
Some with your levels are well.
I would go by your symptoms and get treatment promptly
I don't know if I have true PA or not (my mother does), but for both of us tablets will increase levels but not treat symptoms. Prior to injections I used to eat red meat like crazy & my b12 didn't seem to respond much, but my levels were never below 300 either. Everyone seems to react a bit differently. Your levels are still very low even if it goes up or diwn 20 units.
Very excited for you getting injections! Remember, it's normal to get worse before getting better eg more tingling, or jumping around, or new symptoms appearing or showing up in new places. The first months can be a real roller-coaster, some great days followed by long crashes. I slept for 3 days straight after my 2nd shot and I needed daily naps for many months. It will get better!
Good luck!
Scientist, not medic.
By all means try it, but generally the amount of B12 in a multivitamin tablet is probably only about 100% of the daily requirement. You were probably already consuming that without the tablets. If you're unable to absorb via the terminal ileum and IF, then you'd probably need very much more than that. 1mg per day is talked about, and does help some people. That is very, very many more times the normal daily intake.
As for folate, that's not stored so you need a regular replenishment of it.
Good luck.
Hi Flipper thank you for that, I literally only started taking them so they cannot say I have not followed they’re advise be it wrong I know that now, I thought if I do it then I can go back and say see it Doesn’t work now give me the bloody injections please! But they have used it to there advantage but as gambit62 has explained it there is a 20% fluctuation in the test and it can differ by 20% if you repeated the same sample numerous times, I’m just being fobbed off I know that now thanks to you guys PA I recently found out runs in my family my Grandmother and all my dads sisters have it (5of them) they were all injected with vit b12 regular, I also have a hole in my spine top of my bottom crease end of my spine it’s a hole with no end not just a dimple which some people have, my mother and brother have one too, my mother is very very poorly, they thought it was spina biiffida occulta but mri confined it wasent, I’m wondering if you ever heard of this in b12 deficiency it’s a strange thing I know, but must be genetic as mum and brother have them?
I wondered if these links might be of interest.
Some details might be upsetting.
Low B12 and folate levels during pregnancy have been associated with neural tube defects (NTDs) eg spina bifida
NTDs are mentioned in NHS link about B12 deficiency and Folate deficiencynhs.uk/conditions/vitamin-b...
Link about pregnancy and B12 deficiency
Thank you Sleepybunny definitely an eye opener, says B12 can cause NTD as well strangely the PA is prevalent on my dads sides but the actual NTD came from my mums side seeing she has it as well, I absolutely recon she has B12 defiency or folate or both due to her terrible life changing symptoms she can longer walk catheter brain issues etc
I think I’m going to request a referral to the genetic doctor, GP wont like that, they told me the hole is just some freak thing that happened to me whilst in the womb nothing to worry about, and I’d go with that if my Mother and older brother didn’t have the exact same thing All very strange a bit of puzzle really 😳
Hi. We're very strange creatures, and that's a new one on me, but I think you're 'switched on' and will get yourself sorted.
Good luck.
Hi Steph0077, I just thought I'd hop on here to say my daughter has the hole/dimple at the bottom of her spine (along with some other things like tongue tie) and I always thought it was MTHFR related as I'm compound heterozygous. I'm guessing I was pretty deficient in B12 when I had her in 2018 as my serum level when tested in 2017 was 107 (range 185-535 ug/l) and my Folate was extremely low at 1.64. I've not read much about the Sacral Dimple but I'm starting to piece more things together, as I question whether I have Autoimmune Gastritis/PA as well as Hashimoto's!
Good luck in your health journey!
hi there Miss popp
Thanks for your message,please can you tell me what compound heterozygous is? I’ve googled it but not sure if I looking at the right thing as Thalasemia trait/minor is coming up strangely enough my son has Thalasemia trait, and has Hashimotos plus totally convinced he to has b12 deficiency, he although he’s been diagnosed with ME/CFS and Microscopic colitis, (although I don’t think this is the correct diagnosis) yes the sacral dimple/hole has no end to it and my mother and older brother have the same one it’s all very strange isent it, maybe there is some sort of genetic condition that’s being missed. Your levels were very low too, have they not diagnosed you with PA? Do you have any other autoimmune conditions? My mother has many and has under active thyroid/hashimotos, too, you and you daughter seem very similar to our family’s history in some respects, what have they said about your daughters sacral hole/dimple?
Kind regards
Steph
Sorry I was talking about the MTHFR gene itself. There are two common SNPs - C677T and A1298C that tend to have increased risk for certain conditions if you have the ‘bad’ gene copies. It’s all related to the methylation cycle. You can run quite cheap genetic tests nowadays if you don’t know yours yet.
My mum has ME too and I believe these things are all linked. Starting with the wrong genes (susceptibility) and with lifestyle as the trigger that can set everything off.
Although I feel worse than in 2017, my b12 and folate have raised! I started eating meat which I think helped a lot. My vit D is still low though.
My Hashimoto’s diagnosis was only last year so I’m still very early into my research. It’s such a shame we have to take everything into our own hands as it’s rare to find any health professional who understands complex pictures. I would suggest trying your genetic report if you want more root causes. I know Self Decode are quite good or just get raw data through Ancestry and run it through another programme like Livewello or genetic genie.
RE the sacral dimple, I never raised it with the Dr for the above reason!! I knew they wouldn’t have a clue and eventually I’d get there with my research! 😂
if you have PA or a B12 absorption problem then a multivitamin won't increase your B12 levels.More likely the difference is down to the fact that the test method is only accurate to 20% - so if you measured the same sample several times the result would vary by 20%. The results you have may show a rise but it is less than the 20% accuracy - so it isn't statistically different.
Thank you, then that makes total sense, thank goodness I now have this information, how can the Gp and hospital Dr use this as way of getting out of IM injections, by stating that my levels are increasing, tbh I was thinking the same as the DRs that maybe I don’t have true pa or a malabsorption they blatantly keep telling me “You don’t have Prenious anemia you are not anemic! 😳 now you guys have explained that I understand why, the last vit b12 test I had prior was early morning 9am the last one was 12pm at night not sure if that can make a difference also?Some blood tests very depending on time of day and fasting etc not sure if this effected by that
That's biggest mistake I have ever made by thinking that just multivitamin and meat can compensate B12 deficiency, but I was wrong and finally ended in worst neuropathies I couldn't even imagine. If you are not true pernicious anemia patient then take B12 orally which I think highest dose taking daily of slow release form of methylcobalamine can help along with monthly injection for cyanocobalamin and two monthly for hydroxocobalamin. You should also take methyl folate which is active form of b9 and on and off take Iron for raising ferritin level over 40 and under 70 but be careful not to take B6 higher than 40 mcg as it can damage nerves. I wish I could go back in time and tell myself exactly bwhat I've told you!
Once you start B12 injections it would be good to consider a B Complex to keep all the B's in balance
I take Thorne Research Basic B Complex - bought on-line.
Multi-vits not always helpful as some ingredients eg Iron and Calcium - can bind to and negate other ingredients. Could be things you don't need ! Best to test individually and go from there.
Daily injections may be needed with neurological symptoms until things improve. Hope you have a good GP 🌻
I have taken high dosages of sublingual b12 without injections and I was unable to absorb it. I only got sicker and sicker until I returned to injections.
I made the mistake of thinking a multivitamin and/or mega B complex tablet would help to balance my B's because I was getting B12 injections. NO !! I've ended up with B6 toxicity, which has very similar symptoms as B12 deficiency. My feet were getting worse, even with more frequent B12 injections. Thanks to a very good neuroimmunologist, who ordered blood tests for everything that nobody else had thought of. I have now thrown out all my vitamins (even though they cost a lot) tried giving them away but once they heard what they did to me, nobody wanted them. I have to stay off avocados, which I love and have a tree laden with them, bananas, chicken, salmon, green veggies.... lots of good healthy foods that I've been eating in abundance. When my blood levels of B6 are back to normal (hopefully not too long) I can eat those things again but I will NEVER take another vitamin pill. I had no idea. Thinking I was doing a healthy thing for my body.
Do you mind me asking how much B6 was in the tablets you were taking? Thanks.
I'm sorry, Sleepybunny (love the name). I have thrown away my tablets but I know they all had way more than the recommended daily dosage. I have dyscalculia so can't remember numbers but I should have written down what each one contained. The mega B complex ones had about 10 times the amount I think. Some days I had a multi vitamin as well as the mega B. I had no idea I was poisoning myself.
Wow 😳 I’m stopping mine now I don’t know what I’m doing, GP doesn’t either, question everything im leaning more everyday! That’s quite shocking you’d think you be safe on a multi but obviously not, I hope you feel better soon thank goodness for your Doctor 👍🏼❤️
I've always believed all vitamin B's will be peed out if you have too much. That's true for most but not B6. Nobody ever told me that.
NHS page for B vitamins
nhs.uk/conditions/vitamins-...
Thank you, I did not realise that you can overdose on some of them 😳
My story had been very similar to yours and yes, it did make a tiny difference to me too - but not enough to fix any problems.
For some reason I also have problems with iron and my biggest issue is that I don't seem to convert other sources of iron to haem iron. I have to eat red meat and fish at least 2 or 3 times a day to keep my iron deficiency symptoms at bay. I don't need huge amounts at any one time but I do need it regularly.
I have also found that keeping significant amounts of calcium in my diet separate from my sources of heam iron really helps. Calcium locks up all sorts of nutrients and especially iron. Iron is best absorbed on an empty stomach so by keeping iron and calcium 2 hours apart you can get most benefit from it.
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