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Quote from Audrey on July 9, 2023, 2:02 pm@methyl B12 does not make me hyper or keep me awake... so I ordered adenosylcobalamin + methylcobalamin and will also be looking for methyl folate!
@methyl B12 does not make me hyper or keep me awake... so I ordered adenosylcobalamin + methylcobalamin and will also be looking for methyl folate!
Quote from angelicarose on July 10, 2023, 6:26 am@jessica2
Hi Jessica, the first thing that stands out to me is that you're taking super high dose. I would start with a regular dose (1000mcg). 1000mcg is already a high dose by design because so little of B12 pills get absorbed. If you check the label you'll see that 100mcg of B12 is over 4000% of the RDA for B12. This is because so little gets absorbed so they have to make the dose high enough to give you a benefit. So yeah, my first guess is just that the dose is too high. If you try a regular dose of B12 and still get those symptoms then there are a few possibilities.
One could be you're not taking enough folate. If your folate is to low to start with you must get your folate to a high enough level for B12 to work. B12 cannot work without adequate folate and folate cannot work without adequate B12. The folate serum test is accurate (unlike the B12 serum test) and is not thrown off by supplementing folate so I recommended getting folate testing. It needs to be in the 3rd quartile of the reference range for B12 to work. Then how much folate you dose depends on how much B12 you're taking and the frequency. I do not know what is is for B12 tablets but here is what is is for B12 injections (this is for a 1000mcg B12 injection).
- B12 injections daily or on alternate days - 5mg (5000 mcg) folic acid daily or the equivalent of 5mg (5000 mcg) folinic acid, daily. This continues until you decrease injections
- B12 injections twice per week - 1600 mcg (1.6mg) folic acid or folinic acid daily
- B12 injections once per week - 800 mcg (.8mg) folic acid or folinic acid daily
- B12 injections once every two weeks, once per month, or once every three months - Depends on your folate level. If you can maintain your folate level in the 3rd quarter of the reference range then you may not have to supplement.
The second possibility is low potassium. B12 is involved in your body making red blood cells. Potassium is needed in the production of red blood cells, so when you do B12 injections you need adequate potassium. The advice in the B12 Facebook group is to eat potassium rich foods, but I know most people on low vitamin A take potassium supplements. So if I were you I would try taking potassium before or with the B12 and see if you get the same response. (Potassium chloride is said to deplete B12 so I would use a different form of potassium).
The last possibility is something called "Start Up Symptoms." When the body gets very low in B12 so many process cannot happen. When you start giving the body B12 again it can "start up" those processes again, and sometimes that causes discomfort/exhaustion/fatigue, etc. Think about getting surgery. You don't expect to feel better just because you got the surgery to fix the thing that was wrong - you expect to be tired and for it to take some time for your body to get back to normal, and to need lost of rest. When you have B12 deficiency the same thing can happen and as your body gets the B12 it's been lacking and starts the healing process you may be tired, have nerve pain from nerves healing and becoming less numb and more sensitive, and all kinds of other "start up" symptoms.
Just out of curiosity why were you supplementing B12? Did you test low?
@jessica2
Hi Jessica, the first thing that stands out to me is that you're taking super high dose. I would start with a regular dose (1000mcg). 1000mcg is already a high dose by design because so little of B12 pills get absorbed. If you check the label you'll see that 100mcg of B12 is over 4000% of the RDA for B12. This is because so little gets absorbed so they have to make the dose high enough to give you a benefit. So yeah, my first guess is just that the dose is too high. If you try a regular dose of B12 and still get those symptoms then there are a few possibilities.
One could be you're not taking enough folate. If your folate is to low to start with you must get your folate to a high enough level for B12 to work. B12 cannot work without adequate folate and folate cannot work without adequate B12. The folate serum test is accurate (unlike the B12 serum test) and is not thrown off by supplementing folate so I recommended getting folate testing. It needs to be in the 3rd quartile of the reference range for B12 to work. Then how much folate you dose depends on how much B12 you're taking and the frequency. I do not know what is is for B12 tablets but here is what is is for B12 injections (this is for a 1000mcg B12 injection).
- B12 injections daily or on alternate days - 5mg (5000 mcg) folic acid daily or the equivalent of 5mg (5000 mcg) folinic acid, daily. This continues until you decrease injections
- B12 injections twice per week - 1600 mcg (1.6mg) folic acid or folinic acid daily
- B12 injections once per week - 800 mcg (.8mg) folic acid or folinic acid daily
- B12 injections once every two weeks, once per month, or once every three months - Depends on your folate level. If you can maintain your folate level in the 3rd quarter of the reference range then you may not have to supplement.
The second possibility is low potassium. B12 is involved in your body making red blood cells. Potassium is needed in the production of red blood cells, so when you do B12 injections you need adequate potassium. The advice in the B12 Facebook group is to eat potassium rich foods, but I know most people on low vitamin A take potassium supplements. So if I were you I would try taking potassium before or with the B12 and see if you get the same response. (Potassium chloride is said to deplete B12 so I would use a different form of potassium).
The last possibility is something called "Start Up Symptoms." When the body gets very low in B12 so many process cannot happen. When you start giving the body B12 again it can "start up" those processes again, and sometimes that causes discomfort/exhaustion/fatigue, etc. Think about getting surgery. You don't expect to feel better just because you got the surgery to fix the thing that was wrong - you expect to be tired and for it to take some time for your body to get back to normal, and to need lost of rest. When you have B12 deficiency the same thing can happen and as your body gets the B12 it's been lacking and starts the healing process you may be tired, have nerve pain from nerves healing and becoming less numb and more sensitive, and all kinds of other "start up" symptoms.
Just out of curiosity why were you supplementing B12? Did you test low?
Quote from angelicarose on July 10, 2023, 10:36 am@jessica2 Were you taking B12 at the time you got these tests done? If you were taking a B complex that had B12 in it then it skewed the results of your B12 serum test. You have to be off of all B12 sources for 4 months to get an accurate result. Even then, the B12 serum test is not always accurate so even with a normal level you can have a B12 deficiency.
As you probably read in my first post you can’t supplement only methylcobalamin, you must also supplement adenosylcobalamin with it.
@jessica2 Were you taking B12 at the time you got these tests done? If you were taking a B complex that had B12 in it then it skewed the results of your B12 serum test. You have to be off of all B12 sources for 4 months to get an accurate result. Even then, the B12 serum test is not always accurate so even with a normal level you can have a B12 deficiency.
As you probably read in my first post you can’t supplement only methylcobalamin, you must also supplement adenosylcobalamin with it.
Quote from angelicarose on July 10, 2023, 12:12 pm@jessica2 Do you have many B12 deficiency symptoms?
@jessica2 Do you have many B12 deficiency symptoms?
Quote from angelicarose on July 11, 2023, 5:38 am@jessica2 If you have pernicious anemia then you won't heal from B12 tablets even if they are sublingual. Pernicious anemia means the body cannot absorb B12 the normal route which is the digestive tract. Sublingual tablets are absorbed under the tongue so this does bypass the digestive route however, a person only absorbs 1-3% of what is in a sublingual tablet so you just cannot supply enough to heal through this route. It is also thought that people with PA cannot store B12 in the liver since they don't absorb it through the digestive route so they can't rely on liver stores. That is why injections are recommended for people with PA. Have you been tested for PA? Or have you only been tested for markers of of B12 deficiency? If you eat meat then you shouldn't have low B12 so you should be tested for PA. The tests for PA are:
Blood Tests: Intrinsic factor antibodies, parietal cell antibodies
Endoscopy tests: H. Pylori, Celiac, Gastritis, SIBO
Also keep in mind there are other reasons for low B12 like the list of conditions/medications in a previous post.
@jessica2 If you have pernicious anemia then you won't heal from B12 tablets even if they are sublingual. Pernicious anemia means the body cannot absorb B12 the normal route which is the digestive tract. Sublingual tablets are absorbed under the tongue so this does bypass the digestive route however, a person only absorbs 1-3% of what is in a sublingual tablet so you just cannot supply enough to heal through this route. It is also thought that people with PA cannot store B12 in the liver since they don't absorb it through the digestive route so they can't rely on liver stores. That is why injections are recommended for people with PA. Have you been tested for PA? Or have you only been tested for markers of of B12 deficiency? If you eat meat then you shouldn't have low B12 so you should be tested for PA. The tests for PA are:
Blood Tests: Intrinsic factor antibodies, parietal cell antibodies
Endoscopy tests: H. Pylori, Celiac, Gastritis, SIBO
Also keep in mind there are other reasons for low B12 like the list of conditions/medications in a previous post.
Quote from angelicarose on July 11, 2023, 12:12 pm@jessica2 You're welcome. Be prepared that most doctors, even hematologists usually don't know a lot about pernicious anemia. It frustrates me that most doctors if they do recognize B12 deficiency won't even test for malabsorption or ask about diet. Doctors should be asking patients if they consume meat and dairy and if the answer is yes they should be recommending injections because the patient will not absorb tablets if they're not absorbing it from food AND they should be testing patients for malabsorption.
It doesn't hurt to just ask for the blood tests yourself and not wait for your doctor to suggest it (intrinsic factor antibodies and parietal cell antibodies) because I've seen time and time again doctors misdiagnosing and missing this disorder because they don't test for it, they just look at B12 markers and they tell you to take B12 and call it a day. Also just so you know you should not have a B12 injection within 2 weeks of having the intrinsic factor antibody test. Also if you've been taking B12 tablets it will throw off the B12 serums tests and homocysteine tests if the doctor orders those. Good luck, hope you get answers.
@jessica2 You're welcome. Be prepared that most doctors, even hematologists usually don't know a lot about pernicious anemia. It frustrates me that most doctors if they do recognize B12 deficiency won't even test for malabsorption or ask about diet. Doctors should be asking patients if they consume meat and dairy and if the answer is yes they should be recommending injections because the patient will not absorb tablets if they're not absorbing it from food AND they should be testing patients for malabsorption.
It doesn't hurt to just ask for the blood tests yourself and not wait for your doctor to suggest it (intrinsic factor antibodies and parietal cell antibodies) because I've seen time and time again doctors misdiagnosing and missing this disorder because they don't test for it, they just look at B12 markers and they tell you to take B12 and call it a day. Also just so you know you should not have a B12 injection within 2 weeks of having the intrinsic factor antibody test. Also if you've been taking B12 tablets it will throw off the B12 serums tests and homocysteine tests if the doctor orders those. Good luck, hope you get answers.
Quote from Dom on September 23, 2023, 10:20 am@angelicarose
I suspect that I have a severe deficiency of b12, I tested b12 in a exam 291 pc/ml, and I've been having symptoms for 4 years now that could actually be a b12 deficiency: chronic constipation( abdominal distention), shortness of breath( it's almost like I can't fully expand my lungs), brain fog( memory issues), hair loss. given that I tried a lot of approaches to fix the G.I issues and that none of them actually gave me relief, do you think that this could be related to b12? I only tried methycobalamin for a month( 1000mcg/ day) it didn't make any sudden difference, but I saw that you told that one have to take at least 2 forms to replenish a deficiency state. I will start supplementing adenosyl/methycobalamin together to see if it works, how much do you think I should take at the start? I was thinking maybe 1000mcg of each one of them in a capsule a day. just for record other exams that I did showed as well low Iga( immune system) something around 100s when it should be at least 400-500. and I also had antibodies for gluten( making me a celiac) but I don't have actually symptoms of usual celiac patient, but the anti trans glutaminase( one of the markers for celiac) was high at 42,0U . so as you can see, I may probably have malabsorption issues as well. that being said, as I previously mentioned, I tried fix gut issues, but with no success. maybe this is something I didn't address yet and could be the game changer.
I suspect that I have a severe deficiency of b12, I tested b12 in a exam 291 pc/ml, and I've been having symptoms for 4 years now that could actually be a b12 deficiency: chronic constipation( abdominal distention), shortness of breath( it's almost like I can't fully expand my lungs), brain fog( memory issues), hair loss. given that I tried a lot of approaches to fix the G.I issues and that none of them actually gave me relief, do you think that this could be related to b12? I only tried methycobalamin for a month( 1000mcg/ day) it didn't make any sudden difference, but I saw that you told that one have to take at least 2 forms to replenish a deficiency state. I will start supplementing adenosyl/methycobalamin together to see if it works, how much do you think I should take at the start? I was thinking maybe 1000mcg of each one of them in a capsule a day. just for record other exams that I did showed as well low Iga( immune system) something around 100s when it should be at least 400-500. and I also had antibodies for gluten( making me a celiac) but I don't have actually symptoms of usual celiac patient, but the anti trans glutaminase( one of the markers for celiac) was high at 42,0U . so as you can see, I may probably have malabsorption issues as well. that being said, as I previously mentioned, I tried fix gut issues, but with no success. maybe this is something I didn't address yet and could be the game changer.
Quote from tim on September 23, 2023, 7:26 pmAbout 0.5% of supplemental B12 gets absorbed via passive absorption independent of intrinsic factor. So about 5mcg of a 1000mcg tablet.
Because B12 testing can be misleading and expensive it can be easier and cheaper to just try a supplement. 1000mcg daily for about six months.
B12 and folate issues can be more complex than just lack of absorption though. Enzymatic pathways can be affected due to autoimmunity or poor liver function. In this instance taking different forms together won't help much. The issue is not in the inability of the enzymatic reactions to occur once, B12 metabolism and recycling requires many transformations of each molecule.
About 0.5% of supplemental B12 gets absorbed via passive absorption independent of intrinsic factor. So about 5mcg of a 1000mcg tablet.
Because B12 testing can be misleading and expensive it can be easier and cheaper to just try a supplement. 1000mcg daily for about six months.
B12 and folate issues can be more complex than just lack of absorption though. Enzymatic pathways can be affected due to autoimmunity or poor liver function. In this instance taking different forms together won't help much. The issue is not in the inability of the enzymatic reactions to occur once, B12 metabolism and recycling requires many transformations of each molecule.
Quote from Liz on September 23, 2023, 10:29 pm@dom grey zone is 200-300 which cannot outrule a deficiency. I am in the grey zone and have had b12 deficiency symptoms for years. I got immediate effect on my first methylcobalamin sublingual but changed to adenosylcobalamin/methylcobalamin to replenish. I would go with a couple lower doses instead of one large as Tim point out the absorption is not great. I only take about 400-600mcg /day total in 1-3 doses and it's a slow climb but in 1 month time I have gone from 100% exercise intolerant, poor balance, lactic acid from walking stairs, daily naps, extreme brain fog and blurry vision (and more).
To being able to take long walks, even strenous bike rides (but still get massive stress response from it so I lay low with those), i can pick pebbles put from under my shoes again while standing on one leg. My blurry vision has improved a lot and I did take an IQ test for fun the other day (i used to love those) and performance was way better than in years, but it made me exhaused afterward. But I managed to complete it. So, a long way to go but massive improvements so far.
Also, my nipples is becoming Pink again. They have been purple for several years and I never really understood why.Since I get a lot of b12 from diet I never thought i'd have a deficiency. But I have had issues in the past which I had forgotten all about. I also got deficient while on keto, believe it or not. So not only vegans risk getting low b12.
Stress gobbles up b12 so if under high stress it's probably wise to supplement.Another thing I have mentioned in another thread somewhere was a tv documentary I saw where 4 families would follow 4 different diets (LCHF, vegan, 5:2 fast and swedish national recommendations) each group had help from an expert.
At the end of 3 months or so blood samples revealed ALL GROUPS had a drop in B12 levels. Despite different dietary advice ALL GROUPS ate a lot more colorful veggies than previoisly. Now that I found interesting...Edit: with gluten antibodies I'd stop all gluten intake immediately which I suppose your doctor has adviced you to do? You may not "notice" symptoms but consider that you think you're b12 deficient there you have symptoms. Celiac = destroys gut lining => malabsorption
@dom grey zone is 200-300 which cannot outrule a deficiency. I am in the grey zone and have had b12 deficiency symptoms for years. I got immediate effect on my first methylcobalamin sublingual but changed to adenosylcobalamin/methylcobalamin to replenish. I would go with a couple lower doses instead of one large as Tim point out the absorption is not great. I only take about 400-600mcg /day total in 1-3 doses and it's a slow climb but in 1 month time I have gone from 100% exercise intolerant, poor balance, lactic acid from walking stairs, daily naps, extreme brain fog and blurry vision (and more).
To being able to take long walks, even strenous bike rides (but still get massive stress response from it so I lay low with those), i can pick pebbles put from under my shoes again while standing on one leg. My blurry vision has improved a lot and I did take an IQ test for fun the other day (i used to love those) and performance was way better than in years, but it made me exhaused afterward. But I managed to complete it. So, a long way to go but massive improvements so far.
Also, my nipples is becoming Pink again. They have been purple for several years and I never really understood why.
Since I get a lot of b12 from diet I never thought i'd have a deficiency. But I have had issues in the past which I had forgotten all about. I also got deficient while on keto, believe it or not. So not only vegans risk getting low b12.
Stress gobbles up b12 so if under high stress it's probably wise to supplement.
Another thing I have mentioned in another thread somewhere was a tv documentary I saw where 4 families would follow 4 different diets (LCHF, vegan, 5:2 fast and swedish national recommendations) each group had help from an expert.
At the end of 3 months or so blood samples revealed ALL GROUPS had a drop in B12 levels. Despite different dietary advice ALL GROUPS ate a lot more colorful veggies than previoisly. Now that I found interesting...
Edit: with gluten antibodies I'd stop all gluten intake immediately which I suppose your doctor has adviced you to do? You may not "notice" symptoms but consider that you think you're b12 deficient there you have symptoms. Celiac = destroys gut lining => malabsorption
Quote from angelicarose on September 24, 2023, 5:37 am@dom I'm not sure what country you live in but in the USA the reference range for B12 tests is usually around 200-900, so you would be on the very low end with a number of 291. That being said, the B12 serum test is a highly inaccurate test and can be erroneous for many reasons. It is not a reliable test for B12 deficiency. The reliable tests are homocysteine, and MMA. You may also want to get an intrinsic factor antibody test and parietal cell antibody test. Since you have the antibodies for celiac is it not unlikely that you may have other antibodies. Most people with celiac have absorption issues with B12. This is because inflammation in the digestive tract can inhibit B12 absorption.
Your symptoms do fall in the category of B12 deficiency symptoms and many people see their digestive issues improve once they address B12 deficiency. As for what form to take, I always suggest people start with hydroxocobalamin. The reason why is some people are overmethylators and end up feeling like they are on speed when they take methylcobalamin (insomnia, etc). Additionally hydroxocobalamin has a longer half life so you do not need to take it as often (it sticks around longer in the body). In some cases where people do not methylate well hydroxocobalamin does not work for them and they need to take methylcobalamin and adenosylcobalamin.
You should not be taking capsules of B12. If you have celiac you can assume you have absorption issues and cannot absorb B12 in your digestive tract. So swallowing a capsule of B12 will do nothing for you. You either want to do B12 injections (the faster route) or sublingual B12 which is dissolved under the tongue. You absorb 100% of an injection. You will absorb 10-20% of a sublingual tablet (depending on how long you can let it absorb under your tongue). So your improvement will be slower with sublingual but it's still possibly to completely recover with that route if injections are not something your want to do or are inaccessible. Hope that helps.
@dom I'm not sure what country you live in but in the USA the reference range for B12 tests is usually around 200-900, so you would be on the very low end with a number of 291. That being said, the B12 serum test is a highly inaccurate test and can be erroneous for many reasons. It is not a reliable test for B12 deficiency. The reliable tests are homocysteine, and MMA. You may also want to get an intrinsic factor antibody test and parietal cell antibody test. Since you have the antibodies for celiac is it not unlikely that you may have other antibodies. Most people with celiac have absorption issues with B12. This is because inflammation in the digestive tract can inhibit B12 absorption.
Your symptoms do fall in the category of B12 deficiency symptoms and many people see their digestive issues improve once they address B12 deficiency. As for what form to take, I always suggest people start with hydroxocobalamin. The reason why is some people are overmethylators and end up feeling like they are on speed when they take methylcobalamin (insomnia, etc). Additionally hydroxocobalamin has a longer half life so you do not need to take it as often (it sticks around longer in the body). In some cases where people do not methylate well hydroxocobalamin does not work for them and they need to take methylcobalamin and adenosylcobalamin.
You should not be taking capsules of B12. If you have celiac you can assume you have absorption issues and cannot absorb B12 in your digestive tract. So swallowing a capsule of B12 will do nothing for you. You either want to do B12 injections (the faster route) or sublingual B12 which is dissolved under the tongue. You absorb 100% of an injection. You will absorb 10-20% of a sublingual tablet (depending on how long you can let it absorb under your tongue). So your improvement will be slower with sublingual but it's still possibly to completely recover with that route if injections are not something your want to do or are inaccessible. Hope that helps.