High dosage of B12 gave me life.

[ChessFox]

Thanks everyone for helping me out when I first suspected gluten and noticed dramatic improvement! 

So around that time about four months ago I introduced vitamins and just happened to have half a bottle of Vitamin D with Vitamin B12. About three weeks later I was processing and reading voraciously and with ease like never before. That little bottle ran out and I just assumed my multivitamin would be enough since it had a little B12 in it. Every few weeks my memory, concentration, and energy gradually deteriorated until I could not even read, listen to audio books, follow along in movies, etcetera. I finally connected the dots. I started taking a high dosage of B12 and many of my symptoms have completely gone. Here are some of them to see if others perhaps can identify with some of them: anxieties / fears, numbness and tingling in body, fatigue, poor memory and reflexes. Writing a little text message felt like climbing the highest mountain. The tingling did not happen until my early 30s. Everything just got progressively worse unfortunately. The body tingling is about 90% gone and the little that I have is hardly noticeable and does not distract me.

I would imagine many here have been affected by vitamin B12 deficiencies. So I am really interested to hear other experiences with this.

Additional information: currently on day eight and taking 2,000 mcg under the tongue.

 

Thanks again.

[Scott Adams]

I've experienced similar things when taking B12 supplements, and for me, especially improved memory. I think most celiacs should supplement B vitamins, especially B12, and take D as well.

[ChessFox]

My memory is improving too. I can remember with greater detail some of my most meaningful ones. I am also taking D.

From what I have read B12 supplements can quickly reverse symptoms caused by the deficiency. Since I have gone so long with these symptoms I do not know if there is permanent damage like on my nerves. But I am going to do my best to not think about that until six months to a year of B12 and B complex treatment.

[Beverage]

Hi. I also had big improvement by taking B-12, but not until I used the methyl form Methylcobalamin. I take this one as recommended by others here:

https://www.amazon.com/gp/product/B003BHUZ68/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

My other big improvement, especially with asthma was B-1 Thiamine, as recommended by @knitty kitty , to use the fat soluble form. I experimented with a few different types, and benfotiamine worked the best for me:

https://www.amazon.com/gp/product/B07G7HPK39/ref=ppx_yo_dt_b_asin_title_o03_s00?ie=UTF8&psc=1

I had such problems, and it was hard to know what was doing what.  Now I take one new thing at a time, for a few weeks, before adding anything new.  If stopping something, wait at least 3 days before introducing anything else new.  Also keep a little log of what you are taking and what changes you notice. It can help, and is a good thing to have handy when talking with your doctor.

 

[ChessFox]

On 9/8/2021 at 6:39 PM, Beverage said:

Hi. I also had big improvement by taking B-12, but not until I used the methyl form Methylcobalamin. I take this one as recommended by others here:

https://www.amazon.com/gp/product/B003BHUZ68/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

My other big improvement, especially with asthma was B-1 Thiamine, as recommended by @knitty kitty , to use the fat soluble form. I experimented with a few different types, and benfotiamine worked the best for me:

https://www.amazon.com/gp/product/B07G7HPK39/ref=ppx_yo_dt_b_asin_title_o03_s00?ie=UTF8&psc=1

I had such problems, and it was hard to know what was doing what.  Now I take one new thing at a time, for a few weeks, before adding anything new.  If stopping something, wait at least 3 days before introducing anything else new.  Also keep a little log of what you are taking and what changes you notice. It can help, and is a good thing to have handy when talking with your doctor.

 

Thanks a lot Beverage. I am really happy for you that you made big improvements with B-12 and B-1.

I am currently taking the Methylcobalamin that you mentioned. It is really helping me with my fatigue, concentration, fears, and mild obsessive-compulsive behavior. My short-term memory is still worrisome. I cannot believe how many times I walk into rooms and completely forget why I am there. Or to jog my memory I have to intentionally walk into every room to see if there is something that actually needs to be done.

I want to start B-1 Thiamine today. I have been suffering from peripheral neuropathy but not just numbness and tingling in the extremities but nerves firing off all over the body. Over the last few years it is like their repertoire has expanded because sometimes the sensations are very soft, other times like little mosquito bites, and then sometimes swarms of bees buzzing under the skin in certain areas.

Yesterday, I was actually having a pretty good health day up until I ate smoked salmon. Quickly my nerve pain and activity went up at least 1000%. Apparently smoked salmon has sulfites which destroy thiamine. So that explains why I was in pretty bad shape right after consuming it.

Hopefully a high dose of B-1 Thiamine will help with other things too like memory, ability to handle stress, and more.

It is a tough pill to swallow sometimes because just like celiac disease certain vitamin deficiencies like B12 and B1 are not always the first thing family doctors think about. And I would imagine a lot of other celiacs, especially undiagnosed, have been suffering just like us with a lot of these symptoms. They do say strength and wisdom comes from struggle. That helps me in trying to make sense of all this.

[Beverage]

I am now experimenting with another B vitamin...niacin. Naturopaths have long recommended the flushing form of niacin (nicotinic acid, not nicotinamide) to clear out atherosclerosis. My boyfriend has that really bad, had a heart attack and 4 way bypass, so we were trying it for him, and I started with it also.

I read some studies about flush niacin and some about melatonin as preventatives for Covid, used together, it's kind of amazing.  Also used in recovery after vax for those that had issues, and recovery for people that got Covid and have lingering problems (aka long haulers).  Covid apparently messes with tryptophan, which is part of the melatonin conversion.  This combination seems to be helping a lot of people.  I believe I have read people taking it for the nerve side effects with long haul Covid.  

I have not had Covid, but am trying it for prevention and overall health.  My BP has been improving with the other B vitamin things, but generally around 120's / 70's.  Last night it was 116 / 69 and I felt really relaxed like I used to when I was a young whipper snapper, and sleep is improving.  I've tried it off and on since June, but had some hard times with my kitties getting sick and having to put them to sleep 2 months apart. 

I am trying it again now consistently.  For some they take right before bed and they sleep amazingly.  That didn't work for me, I have problems taking B vits anytime after breakfast, can't sleep, like someone holding my eyes wide open.  My friend suspects I have that MTHFR thing (problem with energy into cells and can get agitated when the energy is not used properly).  So before breakfast or just after, I take the melatonin first, wait 10 minutes, then take the flush niacin.  Amazingly, the melatonin does not make me sleepy at all when done with the niacin.  I must say, I am feeling another boost up in energy, more than anything else I have tried. I am 65 and shoveled 3/4 yard of gravel yesterday, was not exhausted after, just a little tired, and not even sore today.

My friend that has MTHFR suggested the addition of Liposomal Glutathione for that. So that's what I'm going to try adding next.

[ChessFox]

This is very interesting Beverage. I wish you and your boyfriend the best. That is really great that you are feeling the boost up in energy.

My peripheral neuropathy is getting a lot better. Yesterday I did eat way too many portions of vanilla ice cream. About every 10 to 14 days I sometimes crave something like this. I am trying to work on this. My peripheral neuropathy flared up immediately right after and lasted for quite some time. With a thiamine deficiency I have to really be careful with so much refined sugar. Everything is back to normal again.

I'm going to take a look at the flush niacin.

[Kwinkle]

Hello everyone. I am new on this journey. 😊66 yr old female- i’ve been a lurker for a couple of weeks and you have all helped me so much just by your posts!  I want to start taking B12 and B1 but the recommended dosage and the amount that’s in the supplements are vastly different and I’m confused how much to take?  I know everyone is different, but should I start with a smaller dosage and see if it helps and go up to a higher dosage if not? I hope this makes sense but for instance, the B1 supplement range from 50 MG to 500 MG that’s quite a difference - thanks again everyone 

[trents]

Welcome to the forum, @Kwinkle!

Realize first that the B vitamins are water soluble which means excess is excreted in our urine and does not build up in our tissues like fat soluble vitamins do. So, there is little risk of toxicity with large doses of the B's. 

Second, if you start with smaller doses they may not be large enough to be therapeutic and so will not help.

So, my recommendation is to start with high potency levels. But you also need to realize that the B vitamins work in concert with each other. So, it may not be a good idea to just to dose up on one or two of them. It might create imbalance. It would be a better idea IMO to take a high-potency B-complex. Make sure all supplements are gluten free.

If you live near a Costco, Nature Made Super B-Complex with C is a good choice.

Edited January 4 by trents

[Kwinkle]

Thank you so much for that info!  I really appreciate all of you! This is one heck of a journey after spending 66 years eating anything and everything I wanted 😂 

[Scott Adams]

The one B vitamin that you don't want to take too much of is B6. Too much B9 can also lead to issues.

 

Vitamins and Minerals Generally Safe in Excess of Recommended Daily Allowance (RDA):

Vitamin C (Ascorbic Acid): Excess vitamin C is usually excreted in the urine and is considered safe in higher doses. However, very high doses may cause digestive upset in some individuals.

Vitamin B1 (Thiamine): Water-soluble, excess thiamine is generally excreted through urine. It is considered safe in higher doses but consult with a healthcare professional.

Vitamin B2 (Riboflavin): Water-soluble, excess riboflavin is excreted in the urine and is generally safe in higher doses.

Vitamin B3 (Niacin): Water-soluble, niacin has a well-defined upper limit, but moderate excess is often excreted. Consultation with a healthcare professional is advisable.

Vitamin B5 (Pantothenic Acid): Water-soluble, excess pantothenic acid is generally excreted through urine and considered safe in higher doses.

Vitamin B7 (Biotin): Water-soluble, excess biotin is typically excreted and is considered safe in higher doses.

Vitamin B12 (Cobalamin): Water-soluble, excess B12 is typically excreted in the urine and is considered safe in higher doses. Consultation with a healthcare professional is advisable.

Choline: While not a true vitamin, choline is water-soluble, and excess is usually excreted. It's considered safe in higher doses but consult with a healthcare professional.

 

Vitamins and Minerals with Potential for Toxicity in Excess of Recommended Daily Allowance (RDA):

Vitamin A (Retinol): Excessive vitamin A intake, especially from supplements, can lead to toxicity, causing symptoms like nausea, dizziness, and, in severe cases, organ damage.

Vitamin B6 (Pyridoxine): Long-term use of high doses of Vitamin B6, typically above 200 mg per day, can lead to toxicity. Symptoms of Vitamin B6 toxicity include nerve damage (neuropathy), which can cause pain, numbness, and difficulty walking. The condition is usually reversible once supplementation is stopped, but in severe cases, nerve damage may be permanent.

Vitamin B9 (Folate): The UL for Folic Acid is set at 1,000 mcg (1 mg) per day for adults. This limit primarily applies to synthetic folic acid found in supplements and fortified foods, not naturally occurring folate in food. High intake of folic acid can mask the symptoms of Vitamin B12 deficiency, which can lead to neurological damage if left untreated. This is because folic acid supplementation can correct anemia caused by B12 deficiency without addressing the underlying neurological damage. Some studies suggest that excessive folic acid intake might increase the risk of certain cancers, such as colorectal cancer, particularly in individuals who have precancerous lesions.

Vitamin D -  While moderate excess may be excreted, prolonged high doses can lead to vitamin D toxicity, resulting in hypercalcemia, kidney damage, and other complications.

Vitamin E (Tocopherols): Excess vitamin E is usually excreted, but high doses from supplements may have adverse effects. Obtaining it through a balanced diet is preferable.

Vitamin K: Excess vitamin K from supplements can interfere with blood thinning medications and cause issues in some individuals.

Iron: Excessive iron intake, especially from supplements, can lead to iron toxicity, causing symptoms like nausea, abdominal pain, and, in severe cases, organ failure.

Zinc: While zinc is essential, excessive intake can lead to zinc toxicity, affecting the immune system and causing digestive issues.

Copper: High copper levels, often from supplements, can lead to toxicity, causing symptoms such as nausea, vomiting, and liver damage.

Selenium: Excessive selenium intake, especially from supplements, can lead to selenosis, causing symptoms like hair loss, gastrointestinal issues, and neurological problems.

[trents]

I think you would do well to take a high potency B-complex such that you get more balanced dosage across the spectrum of B vitamins. They work in concert.

[Scott Adams]

Nature Made B-Complex (Costco) contains 2mg of B6, which is close to the RDA for it.