Refresher: I have b12D Pernicious Anemia with autoimmune metaplasia atrophic gastritis. Recently diagnosed with deficiencies in zinc and copper as well and am taking supplements until in the normal range. B12 sublinguals have worked for me for a 3 years, but I have been taking much more just recently due to fatigue and breathing issues which could also be zinc and/or copper related - either symptoms of deficiency or high doses. I've gone from 1000 mcg of b12 daily to now 2000 in the morning and another 1000 or 2000 in the afternoon if needed. Here are my questions:
. Should I take my b12 with folic acid at the same time or is it ok to take them hours apart?
. Is it ok to take my folic acid every other day? Doc had me on really high dosage for a long while (many years at 2mg/day long before being diagnosed with b12d). I reduced on my own a year ago to 500 mcg/day and just recently reduced to 500 mcg every other day. Is this safe?
. I have read that zinc can cause lowered B12 - have you heard of this and could that be why I'm having worsening symptoms? (by the way, a specialist told me a month ago that deficiency in zinc and copper can be indicative to having no stomach acid and I could be having bile issues and not acid. He gave me a script for sucralfate to take 4 x a day but I've only used it as needed - just every so often).
. Would my MMA and homocysteine levels be affected by zinc? Last tests for these about 4 months ago were normal.
. Because of bad side effects of zinc and copper for two months, the doc allowed me to take them just every other day - but both on the same day and for two more months with a recheck at that time. Have you heard if doing this is still effective?
. My iron always tests normal but my ferritin last time is borderline normal. Taking iron kills by stomach so I take a gentle 28 mg every other day with food. Do you think this is enough?
Thanks in advance, Everyone, for your responses...
Hugs,
..Lynette in USA
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LynetteinUSA
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Thanks, Nackapan. I enjoy reading your responses to others and have learn from you. I will be having my folic acid, ferritin, D3, and iron tested mid July. I get these tested every three months. Zinc and copper will get tested in another month and a half. I think the zinc may be affecting my b12. I actually feel better when I increase the sublinguals. From what I've read, zinc over 40 mg is considered high dosage - doc has me on 50 now every other day. I will know much more after I have the tests.
Hi LynetteinUSA, Happy belated 4t to you as well!!
I'm not a doctor, and I don't have a lot of insight about your zinc and iron issues, but if you have been diagnosed with pernicious anemia and autoimmune metaplasia atrophic gastritis I would really worry about you not getting intramuscular B12 injections. Not sure I understood correctly, that's what it sounded like in your question description.
Sublingual won't cut it for most of us, and if you're having an increase of symptoms like fatigue and breathing issues, I sort of see that as a red flag along with the fact that you don't inject B12. Maybe sublinguals were working for you, but now they're not? I tend to think they wouldn't, or that you would still experience a sneaky decline in health if that's all the B12 supplementation you're getting.
I inject every other day and if I go too long without an injection, I have markedly more difficulty breathing. Wishing you the very best! Take good care ❤️
Hi Cobalt1312. Thanks for your response. I was originally prescribed one injection per month but I had such a severe reaction that I stopped after two and the doctor put me on sublinguals - which actually worked for me. I believe the zinc I'm on is depleting the b12. When I increased the b12 from 1000 mcg to 6000 it really made a positive difference. I have upcoming tests for folic acid, iron, ferritin and vitamin D in the next couple of weeks (I get them done every 3 months), and then zinc and copper will be tested when two months are up.
Wow, I can totally understand why you don't inject! That is a hard complication, especially if the zinc you take is depleting the B12 you get from your sublinguals.
Happy belated Independence Day. I am really sorry to read how you are feeling.
I am not a qualified professional in dietetics or nutrition. There are so many things yet to learn. We are all so different. For my own personal journey, I have worked with them then got very basic qualifications.
For starters, it maybe worth popping onto gluten free guerillas regarding zinc and copper.
I have coeliac disease and still need every supplement. But I only know me and we are all so different. There are a couple of people on there who really know their stuff.
In answer to you taking 28 mg of gentle iron with food every other day ? 🤷♀️ I don’t know. That’s my honest opinion. Factors such as age, height, weight, build, activity, working. Sorry, it really is a politician’s answer.
Most importantly, the low stomach acid is an issue, if the case. I will get back to you on this by tomorrow. On a basic level, people on here use lime juice, something (*brain fog moment*) vinegar or digestive enzymes.
Hi Narwhal10. thanks for your kind response. Interesting that you suggest going gluten free in relation to zinc and copper. What is the connection? I've been reducing gluten quite a bit the last couple of weeks - at least not eating bread but not completely removing all gluten from my diet. I have been tested many times for celiac but test negative.
They are better placed to answer your questions. With regards to blood tests coming back negative for coeliac. It’s called a particular thing in science ‘seronegative’ . You may or may not be gluten sensitive, wheat problems. If you feel better for doing something, reducing gluten then your body is telling you something. I prefer to listen to mine.
Hi there, I'm still pretty new to this but I do know that it is essentual you take 5 mg of folic acid every single day along with a multi b with no be 6 as it can be toxic if it builds up. Take it seperate as needed. also magnesium and probiotic. You need potassium from food every day so eat a banana , broccoli spinach coconut water. Your body needs this to absorb the b12 otherwise it will pool or you will pee it out.
Hi, brenanddave! Thanks for getting back to me. I've read on here other folks who say 5 mg folic acid is drastically too high. Do you mean 500 mcg? Most have said that the top amount should be 400 mcg daily. Probiotics make me ill so I don't take them but I try to eat sugar free low fat Greek yogurt three times a day. It really helps when my stomach hurts. Interesting about the potassium in relation to b12 absorption. My last MMA and homocysteine tests were normal which indicates b12 is absorbing. I have tests done every three months with my next due in a couple of weeks. Geesh! There is so much to keep track of!!🙄
Hi Lynette Yes! I know it seems alarmingly hi folic acid but 5mg is what I take every day now.I am SI daily and took that dose when I was EOD injecting. It is less as you as you need less injections. I am part of the Pernicious Anaemia/B12 deficiency support group and have been following their protocol for the past 2 and a half months which has helped me so much. They have been going for nearly 20 years and have loads of experts supporting and advising you. They have tons of files of info and facts to tell doctors to argue your case .My doctor didn't understand at first why I needed the extra vits to start with but now is totally supporting me with it. He has given me 3 months supply of 5 mg folic acid to take daily and has been supportive of me SI daily.He has refered me to a neurologist and though I did test positive for paietal cell antibodies I came back neg for IF but he didn't worry about that and said I definitly had PA Along with Subacute combined degeneration of the spinal cord and allodynia. You are right! There is so much involved with all of this , Good luck x
No, its not necessary to take 5mg of folic acid every day, unless you are correcting a severe folate deficiency. This myth has been knocking around for years and its a mystery to me where it came from. There is nothing about b12 injections that would boost folate requirements to that level. Most do fine on 400mcg daily.
If you have no absorption problems and eat mostly whole plant foods you can get as much as 1mg (1000mcg) of folate, from diet alone. Thats 2.5x the RDA. That's how much folate I get on a normal day. For me to supplement folate would be complete madness and I regret supplementing it when I was even in the early stages of treating my B12 deficiency as I was always getting more than enough folate.
If you're deficient and a doctor prescribed the 5mg to correct the deficiency, that would make sense but its not a reasonable dose long-term unless some very severe absorption problems are going on in which case the priority should be on solving those so such massive doses are not needed.
I agree with you in pricinple Technoid, but this group's (irrational IMO) insistence (7 years ago) that anything above 400mcg was harmful & crazy for everybody especially if labs were good, kept me more ill than i should have been for over 6 months when i first started SI. It's also why i left this forum for several years. The aggressive stance against f.a. was just too much. Adding in 5 mg folic acid was a lifesaver for me. I know i'm not the only one on this forum who needs (much) more.
For that reason i try to be a bit more measured when discussing folate. We cannot always know when people are having malabsorption problems on a cellular level, just like with functional b12d. Labs are not the whole story. Neither is a blanket approach that everyone needs 5mg f.a.
But that's why in the end, i prefer it here. People are open to these discussions. No disrespect to the other groups, I've also learned a lot on them & everyone is very helpful.. I just like to think that people here are a bit more flexible.
I took B12 supplements for several years and eventually they stopped working for me. My doctor started injections and that got rid of the pain and tingling in my toes. My husband learned how to give me the shots which is awesome since I need them about every 3 weeks and that saves me many trips to the doctor.
Hi Hockey_player. Thanks for your reply. Well, that's discouraging to hear. Sublinguals are not like supplements in that they are dissolved under your tongue and enters your blood stream that way - not through your stomach. My hematologist told me that most of her patients are on those and not the injections ..I tried the shots twice but really got sick. that's when I went to the sublinguals. I sure hope I'll be able to stay on them, but thanks for your warning.
Is there some additive in the shots you are allergic to? I have not heard of others saying it makes them sick but sometimes they are uncomfortable as the shots start the healing.
Not sure, but in part id have breathing issues, very rapid heart, sense of doom, nausea. Had to take to bed. It would last a day, then I'd feel a bit better for just two days and back to square one.
Hello, Im also in the USA. What type of Injection did they give you.?There is Cyanocobalamin which is synthetic. Then there is the natural Methylcobalamin and Hydroxocobalamin which is the shelf stable version which is closer to the natural Methyl one. In the past when I increased my B12 injections, because it was necessary, I also had breathing and concerning heart issues so I decreased my injections, but have had to increase them again due to a lot of symptoms coming back.
I thought I was having a heart attack as my heart felt it stopped in the midst of arrhythmias. Same thing happened again when I increased injections most recently; increased heart rate and I also developed a cough. I thought I was in Heart failure. I am on week two of 4- 5 injections a day and the cough and racing heart has finally stopped. For whatever reason if I do less injections my heart starts racing again and my symptoms flood back rather quickly as of late. Im on Hydroxocobalamin as Cyano never really worked for me.
Liquid methylcobalamin is MUCH less stable than Cyanocobalamin. It is much more sensitive to light and heat and is typically injected in a darker room to avoid degradation.
Hydroxocobalamin injections are standard in Europe whereas I understand that Cyanocobalamin injections seem more common in the US.
Methylcobalamin and Adenosylcobalamin are the two active B12 forms. Hydroxocobalamin is a naturally ocurring inactive form often found in animal foods and used in the body.
All forms of B12 are converted to the base cobalamin molecule before being used in the body so all types of human-usable B12 are biologically equivalent in practical terms.
Some find methylcobalamin to be more effective, some find it causes intolerable side effects - you should use whichever one works best for you. There is no universal best form of B12 and anybody who says there is, is probably trying to sell you something or has been suckered in by the prevalent alt-med nonsense in this area.
I read you often, Technoid, and appreciate your comments to me and others. Methylcobalamin causes me awful side effects. Cobalamin works for me in sublingual form. Since I initially wrote last, I have been paying very close attention to how I feel after taking extra B12 subs during the day and I have to honestly say it helps. What once was 1000 mcg a day for me is now 2000 in the am then I take a thousand if and when I start to feel bad later. Usually within an hour it picks me up. It's about 4 pm here now and I've had 4000 mcgs so far today. Most likely I'll have another 1000 early evening. This regiment will work I think until I see the doc next (in process of finding new hem otologist). My MMA and homocysteine are in normal range.
Thanks 😊 I know at least one other person who reacted very badly to methylcobalamin but another who saw improvements with very high doses of methylcobalamin. I think its important to collect the best information but then we just have to see what works best for us individually.
I don't know much, but I do know that dosing zinc is tricky and shouldn't be done willy-nilly as too much zinc can lead to a "chronic toxicity", resulting in anemia (surprisingly) which will cause fatigue etc. so be sure to have the zinc actively monitored.
"Chronic toxicity of zinc should be considered when iron-deficiency anemia does not respond to iron supplements. More common causes of anemia would be blood loss, an iron-deficient diet, and bone marrow abnormalities, among many others.
Hi B12life! Thanks for your input. You are correct about the zinc (and copper is tricky as well). I am on a doctor's order of 50 mg of zinc daily until I asked to be placed on 50 every other day as I was not feeling well on them. I had been on them daily for two months and then had it checked. It's now in the very low normal range and that's when we switched to every other day. I'll get tested again in two months. the copper is still below normal but I'm on that every other day as well because of side effects. I'm having iron, ferritin, D3 and folic acid tested in two weeks. I am pretty good about getting labs done. thanks again.
I agree with others here, oral b12 in any form or amount, didn't work for me. there may be several things going on. So like Nackapan suggested, get fresh testing done and go from there. Also it won't hurt to try b12 injections unless you have an existing kidney or liver issue caused by something else; otherwise b12 is harmless.
You can read my last reply to you, but I wanted you to know that I tried the b12 shots and got very sick each time. that's when I was switched to sublinguals which were working well until I went on the zinc and copper. In my response to you I also said I have tests coming up. I'm having a liver MRI next month.
Welcome back! And a happy belated 4th to you as well
Lots of good answers already!
My thoughts below. I put your original text in bold.
I have b12D Pernicious Anemia with autoimmune metaplasia atrophic gastritis. ... I've gone from 1000 mcg of b12 daily to now 2000 in the morning and another 1000 or 2000 in the afternoon if needed.
Sounds like it's time for injections - it is the gold standard treatment for PA. This happened with 2 of my relatives - they stayed on sublinguals as long as they could but eventually symptoms started creeping back up. They don't regret switching to injections & are grateful i pushed them to switch.
. Should I take my b12 with folic acid at the same time or is it ok to take them hours apart?
It shouldn't matter much especially if you take both regularly. I try to take my folate shortly before b12.
. Is it ok to take my folic acid every other day? Doc had me on really high dosage for a long while (many years at 2mg/day long before being diagnosed with b12d). I reduced on my own a year ago to 500 mcg/day and just recently reduced to 500 mcg every other day. Is this safe?
400 to 800 mcg per day is considered a safe amount. But some people need much more, some need less or none. I'd start with a blood test to make sure folate is not too low.
. I have read that zinc can cause lowered B12 - have you heard of this and could that be why I'm having worsening symptoms?
I have not heard this but that doesn't mean there isn't a connection. But if i had to guess, i'd guess your worsening symptoms are because tablets no longer work, and you need injections, as you should be getting if you have PA.
... indicative to having no stomach acid and I could be having bile issues and not acid. He gave me a script for sucralfate to take 4 x a day but I've only used it as needed - just every so often).
Yes to that! AMAG leads to low stomach acid, poor digestion. Blockages can cause bile to back up into stomach. Many use lime juice or apple cider vinegar with meals. I don't know about sucralfate sorry.
. Would my MMA and homocysteine levels be affected by zinc? Last tests for these about 4 months ago were normal.
No.
Mine were also normal, due to b12 supplements, but my arms still went numb. Among many other B12D symptoms. Injections healed them over time. I have no explanation but i concluded that even mma & homocysteine are not infallible. With PA, symptoms rule treatment.
. Because of bad side effects of zinc and copper for two months, the doc allowed me to take them just every other day - but both on the same day and for two more months with a recheck at that time. Have you heard if doing this is still effective?
No idea, sorry. Every other day is now commonly done with iron, it's supposed to actually improve absorption but no idea how zinc & copper would react.
. My iron always tests normal but my ferritin last time is borderline normal. Taking iron kills by stomach so I take a gentle 28 mg every other day with food. Do you think this is enough?
Have you had a full iron panel? Ferritin alone is not enough. Need to see actual levels of iron, % saturation, and TIBC to ssy what's enough/too much. Ferritin may be low while iron is ok, and Iron can be overdosed (toxic) as you may or may not know. What is your actual iron level, with the lab's range?
Thank you, Jade!! These answers are so helpful. I will print them off and refer to them again. I can't do the injections as i get terribly sick - that's why I was put on sublinguals. My iron test always include TIBC..folate is off the charts high each time. Have tests due in two weeks - get them done every 3 months. Lime juice I'll have to try. I do eat Greek yogurt everyday and that helps (sugar and fat free). Thanks again.
Oh i'm sorry to hear that! Have we tried to troubleshoot it here before? What happens when you get an injection? Have you tried e.g. hydroxo instead of cyano. Smaller amounts? EiCa also had/has tolerance issues and could maybe give some suggestions.
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