B12

[Moccajoe]

My blood test indicated that my B-12 was 1268. Does that mean my levels are high because my body is not absorbing B-12? I’m confused, I thought low B-12 was common in Celiac. What should I expect next? High numbers could be caused by different medical conditions. Should I expect future work up or expect B-12 injections with a repeat blood test down the road? I got my results but haven’t had the follow up doctor visit yet. 

[cristiana]

Hello Moccajoe and welcome to the forum!

Those levels do sound high but just for clarification, can you give us your lab's normal test parameters?

Also, can you let us know if you have been supplementing or having injections?

Cristiana

 

 

[RMJ]

You must be absorbing it or the blood level wouldn’t be high.

Mine were higher than that (1631 pg/mL) when measured 9 years ago.  I was not taking any supplements.  My gastroenterologist didn’t have an explanation but wasn’t concerned.  So far it doesn’t seem to have caused any harm!

[Moccajoe]

1 hour ago, cristiana said:

Hello Moccajoe and welcome to the forum!

Those levels do sound high but just for clarification, can you give us your lab's normal test parameters?

Also, can you let us know if you have been supplementing or having injections?

Cristiana

 

 

Hi Cristina. The 213-816 is the normal range. Mine came back as 1264. Since my last doctor visit, he recommended prenatal and B-12 supplements. I went to the doctor because I’ve been so very weak, fatigued, short of breath, slight poor memory, tingling in my toe and fingers, tachycardia. I eat very well, more on the line of a modified Paleo. And had been exercising regularly. I had a hard time treating a UTI and then things seemed to get bad very quickly. 

[cristiana]

11 hours ago, Moccajoe said:

Hi Cristina. The 213-816 is the normal range. Mine came back as 1264. Since my last doctor visit, he recommended prenatal and B-12 supplements. I went to the doctor because I’ve been so very weak, fatigued, short of breath, slight poor memory, tingling in my toe and fingers, tachycardia. I eat very well, more on the line of a modified Paleo. And had been exercising regularly. I had a hard time treating a UTI and then things seemed to get bad very quickly. 

My sympathies with the UTI - I have those and find that trying to drink loads and do all the right things to get rid of the bad bacteria plays havoc with my system - not to mention the trouble I've had with some antibiotics.   In fact I've got one now and just took some codeine by mistake and have been wondering why I have been feeling so sick and dizzy!

On the B12 situation, it seems that RMJ has had readings higher than yours and so your doctor too many not be concerned.   I have various "wonky" blood test results from time to time and it is so interesting how different doctors react - my GP always sends things off for further investigation, but if my gastroenterologists see the same results they put them down to coeliac disease and don't bat an eyelid.

Anyway, it will be interesting to see your doctor's take on the readings.   When you mention prenatal supplements, are you expecting a baby now?  If so, in your shoes I think I'd put a quick call through to the surgery asap to make sure the doctor is at least aware of these levels just in case s/he missed them and wants you to stop supplementation.  With pregnancies, it pays to be extra careful.

Do keep us posted.

Edited September 27, 2021 by cristiana

[knitty kitty]

12 hours ago, Moccajoe said:

Hi Cristina. The 213-816 is the normal range. Mine came back as 1264. Since my last doctor visit, he recommended prenatal and B-12 supplements. I went to the doctor because I’ve been so very weak, fatigued, short of breath, slight poor memory, tingling in my toe and fingers, tachycardia. I eat very well, more on the line of a modified Paleo. And had been exercising regularly. I had a hard time treating a UTI and then things seemed to get bad very quickly. 

Welcome to the forum!

The symptoms you mentioned -weakness, fatigue, shortness of breath, memory problems, tingling in extremities, and tachycardia - all are symptoms of Thiamine insufficiency.  

Even the UTI can be a symptom of Thiamine deficiency.

Severe Infections are Common in Thiamine Deficiency and May be Related to Cognitive Outcomes: A Cohort Study of 68 Patients With Wernicke-Korsakoff Syndrome

https://pubmed.ncbi.nlm.nih.gov/27498674/

And another...

https://www.objectivenutrients.com/insights/thiamine-ttfd-bladder-emptying-disorders-of-retention-and-incontinence-stones-interstitial-cystitis/

The group of eight B vitamins all work together.  Your B12 is high because you don't have enough Thiamine to work properly with the B12.  

Dr. Lonsdale explains here....

Are High Folate and Vitamin B12 Linked to Low Thiamine in Autism and Other Disorders?

https://www.hormonesmatter.com/high-folate-vitamin-b12-low-thiamine-autism/

 

At one time, my B12 was very high.  I've forgotten the numbers, but my doctor was alarmed although he couldn't explain what it meant either.  He told me to quit taking B12 supplements. But I was not taking any.  

I researched (I'm a microbiologist) and found that Thiamine (Vitamin B1) is needed to help the other B vitamins work together properly.  

Thiamine is really important because it provides energy for every cell in our bodies.  Thiamine is needed to make certain chemical reactions happen, like the proper use of B12.  Thiamine is needed for nerves to transmit messages properly.  Without Thiamine, we get neuropathy (that tingling in our fingers and toes).  Thiamine is needed for our brains to function.  Our brains can use as much energy provided by Thiamine as someone doing hard physical labor.  (No wonder desk jobs can be so tiring!)  Thiamine helps regulate our heartbeat.  Without enough Thiamine we get tachycardia.  Thiamine is needed for our lungs to function properly.  Thiamine helps digest fats, protein and carbohydrates and turn them into energy for our bodies.  Without enough thiamine we feel fatigued.  

Thiamine deficiency is corrected by taking more than the normally required RDA so that thiamine floods the system and gets into cells easily.  We need to take 300 - 600 mg of Thiamine in small increments (100 mg) throughout the day.  

It's been my experience that doctors don't recognize thiamine deficiency symptoms outside of alcoholism, third world countries and starvation.  Doctors are trained to prescribe pharmaceuticals.  They don't understand importance of vitamins and minerals.  Celiac is a disease that causes malabsorption which results in malnutrition...our bodies can't absorb the nutrients and vitamins we need.  

 I survived Thiamine deficiency.  I've experienced all these symptoms.  My doctors didn't have a clue as to what was wrong with me and wrote me off as a hypochondriac.  I researched and started taking High Dose Thiamine.  Within a few minutes my symptoms improved.  

Thiamine is water soluble and nontoxic even in high doses.  Thiamine is available without a prescription.  I take Thiamine in the forms called Allithiamine and Benfotiamine.  

https://ods.od.nih.gov/factsheets/Thiamin-HealthProfessional/

Not medical advice.  This is my experience with Thiamine.  

Hope this helps!

 

[Moccajoe]

4 hours ago, knitty kitty said:

Welcome to the forum!

The symptoms you mentioned -weakness, fatigue, shortness of breath, memory problems, tingling in extremities, and tachycardia - all are symptoms of Thiamine insufficiency.  

Even the UTI can be a symptom of Thiamine deficiency.

Severe Infections are Common in Thiamine Deficiency and May be Related to Cognitive Outcomes: A Cohort Study of 68 Patients With Wernicke-Korsakoff Syndrome

https://pubmed.ncbi.nlm.nih.gov/27498674/

And another...

https://www.objectivenutrients.com/insights/thiamine-ttfd-bladder-emptying-disorders-of-retention-and-incontinence-stones-interstitial-cystitis/

The group of eight B vitamins all work together.  Your B12 is high because you don't have enough Thiamine to work properly with the B12.  

Dr. Lonsdale explains here....

Are High Folate and Vitamin B12 Linked to Low Thiamine in Autism and Other Disorders?

https://www.hormonesmatter.com/high-folate-vitamin-b12-low-thiamine-autism/

 

At one time, my B12 was very high.  I've forgotten the numbers, but my doctor was alarmed although he couldn't explain what it meant either.  He told me to quit taking B12 supplements. But I was not taking any.  

I researched (I'm a microbiologist) and found that Thiamine (Vitamin B1) is needed to help the other B vitamins work together properly.  

Thiamine is really important because it provides energy for every cell in our bodies.  Thiamine is needed to make certain chemical reactions happen, like the proper use of B12.  Thiamine is needed for nerves to transmit messages properly.  Without Thiamine, we get neuropathy (that tingling in our fingers and toes).  Thiamine is needed for our brains to function.  Our brains can use as much energy provided by Thiamine as someone doing hard physical labor.  (No wonder desk jobs can be so tiring!)  Thiamine helps regulate our heartbeat.  Without enough Thiamine we get tachycardia.  Thiamine is needed for our lungs to function properly.  Thiamine helps digest fats, protein and carbohydrates and turn them into energy for our bodies.  Without enough thiamine we feel fatigued.  

Thiamine deficiency is corrected by taking more than the normally required RDA so that thiamine floods the system and gets into cells easily.  We need to take 300 - 600 mg of Thiamine in small increments (100 mg) throughout the day.  

It's been my experience that doctors don't recognize thiamine deficiency symptoms outside of alcoholism, third world countries and starvation.  Doctors are trained to prescribe pharmaceuticals.  They don't understand importance of vitamins and minerals.  Celiac is a disease that causes malabsorption which results in malnutrition...our bodies can't absorb the nutrients and vitamins we need.  

 I survived Thiamine deficiency.  I've experienced all these symptoms.  My doctors didn't have a clue as to what was wrong with me and wrote me off as a hypochondriac.  I researched and started taking High Dose Thiamine.  Within a few minutes my symptoms improved.  

Thiamine is water soluble and nontoxic even in high doses.  Thiamine is available without a prescription.  I take Thiamine in the forms called Allithiamine and Benfotiamine.  

https://ods.od.nih.gov/factsheets/Thiamin-HealthProfessional/

Not medical advice.  This is my experience with Thiamine.  

Hope this helps!

 

This sure does help! I never thought of Thiamine. The articles are good and it makes sense. I picked up some B1 this morning. How long do you think I will start to feel better if I take 600mg a day? Will this bring the B12 down quickly? I feel so bad I had to rest after holding my arms up just to wash my hair. 

[knitty kitty]

3 hours ago, Moccajoe said:

This sure does help! I never thought of Thiamine. The articles are good and it makes sense. I picked up some B1 this morning. How long do you think I will start to feel better if I take 600mg a day? Will this bring the B12 down quickly? I feel so bad I had to rest after holding my arms up just to wash my hair. 

Moccajoe,

I'm so glad you found the articles informative!  

I started feeling changes within a few minutes, but several weeks passed before I really felt "back to normal", but I was severely deficient.  

How long it takes for you to feel better depends on how deficient you are. Everyone is different, but in the case reports I've read, patients responded very quickly over weeks (mild cases) to months (more severe cases), with almost immediate improvement within hours in all patients.

600 mg a day is great!  The half-life of thiamine is about two and a half hours.  (That means our bodies will excrete half of the amount taken in two and a half hours.)  So we want to take another dose of thiamine at that time.  Taking 100 mg every two and a half to three hours keeps the Thiamine level up.  

You can work your way up gradually by taking 200 mgs then 300 mgs as your body can tolerate.  You can take 100 mg with each meal one day, then 200 mg at breakfast and 100 mg with lunch and dinner. Then the next day take 200 mg at breakfast and lunch, then 100 mg at dinner.  If your system can tolerate more, take more.  Do what works for you.

Some people feel more improvement at very high doses between 1000 mg to 1500 mg.  I made the mistake of taking a thousand mgs all at once and got a tummy ache....same as if I overindulged in any food.  Even so, I strangely craved my Thiamine supplements.  I increased my dose up to that amount by taking smaller doses throughout the day with meals and snacks.  

There may be a few days where you don't feel so hot after seeing improvement.  Don't worry, this is "the Thiamine Paradox".  It's our bodies switching over to functioning on a plentiful supply of thiamine instead of having to ration what little it had to major organs like the brain and heart.  It will pass in a few days, but keep taking the Thiamine! 

Thiamine needs magnesium to function properly.  I take magnesium citrate because it is easy on the digestive system and is highly absorbable.  

You will want to take a good B Complex supplement as well.  The eight B vitamins all work together.  It's rare to have a deficiency in just one vitamin.  All the B vitamins are water soluble and cannot be stored for very long.  So you want to make sure Thiamine has plenty of other B vitamins to work with.

I'm thrilled you are taking Thiamine.  Please be sure to keep us posted on your progress!  

Thanks! 

P.S. Yes, the B12 level should come down and normalize soon.  

  

 

Edited September 27, 2021 by knitty kitty
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[Moccajoe]

I must say I want to cry! I’ve taken 300mg so far and I can’t believe that I actually feel a bit better than I did this morning! Does the Thiamine work on bringing down the B12 levels from my lab result, or is that just stored in the liver, which is why you suggest taking the B supplement? Does the Thiamine need ‘fresh’ B12 to work best?
-I just want to tell you that your  advice may actually change my entire quality of my  life! Thank you so very much! I really value your input. 

[knitty kitty]

Hurrah!  Isn't it astounding how quickly Thiamine works???!!!  

Thiamine will help to take the B12 out of your blood stream and into liver storage and into its proper functions.  

B12 needs thiamine and riboflavin, pyridoxine and folate (B2 and B6 and B9) to do all its functions.  That's why it's important to take a B Complex supplement with the thiamine.  

Thiamine works with niacin (B3) and magnesium, too.  By taking the B Complex you'll have plenty of the B's for your body to resume normal functions.  Don't worry if your B Complex has B12 in it.  Remember that if your body doesn't need a certain B vitamin, the excess will be excreted in urine.  It's rare to have just one single vitamin deficiency.  

Thiamine is the B vitamin that is stored for the shortest period of time...about three weeks (21 days).  We can become deficient in thiamine in as little as nine days.  It's the one that runs out first and the one we need the most to provide us with energy for every cell in our bodies.  We need more if we're ill, if we run a fever, if we have vomiting and/or diarrhea or constipation, if we work outside in hot weather or are doing physical labor including exercise workouts, and if we are under emotional stress.  

Good sources of thiamine include liver and meat.  Veggies and fruits have very little thiamine.  Some foods contain "thiaminases", chemical compounds that break thiamine apart and render it useless.  Raw fish like in sushi has thiaminase.  Sulfa drugs like some antibiotics will break thiamine apart, too.  Teas have thiaminase as does most caffeinated beverages.  How many times do we grab a cola or a cup of coffee as a pick me up when we're feeling sluggish?  And we're actually robbing our bodies of thiamine!  

Also get your Vitamin D level up in the eighties.  Vitamin D works much better than at the lower levels currently thought to be sufficient ( 30-40 nmol/l).  Get out in the sunshine, take a D3 supplement, or eat more liver!  Liver is a great source of all the fat soluble vitamins (A, D, E, and K), plus all the B vitamins.  

And let's not forget Vitamin C!  

I know Thiamine changed my life!  I'm so glad what I learned is helping others!   

Keep us posted on your progress!  

Thanks for letting us know! 

 

 

 

[Moccajoe]

On 9/27/2021 at 6:27 PM, knitty kitty said:

Hurrah!  Isn't it astounding how quickly Thiamine works???!!!  

Thiamine will help to take the B12 out of your blood stream and into liver storage and into its proper functions.  

B12 needs thiamine and riboflavin, pyridoxine and folate (B2 and B6 and B9) to do all its functions.  That's why it's important to take a B Complex supplement with the thiamine.  

Thiamine works with niacin (B3) and magnesium, too.  By taking the B Complex you'll have plenty of the B's for your body to resume normal functions.  Don't worry if your B Complex has B12 in it.  Remember that if your body doesn't need a certain B vitamin, the excess will be excreted in urine.  It's rare to have just one single vitamin deficiency.  

Thiamine is the B vitamin that is stored for the shortest period of time...about three weeks (21 days).  We can become deficient in thiamine in as little as nine days.  It's the one that runs out first and the one we need the most to provide us with energy for every cell in our bodies.  We need more if we're ill, if we run a fever, if we have vomiting and/or diarrhea or constipation, if we work outside in hot weather or are doing physical labor including exercise workouts, and if we are under emotional stress.  

Good sources of thiamine include liver and meat.  Veggies and fruits have very little thiamine.  Some foods contain "thiaminases", chemical compounds that break thiamine apart and render it useless.  Raw fish like in sushi has thiaminase.  Sulfa drugs like some antibiotics will break thiamine apart, too.  Teas have thiaminase as does most caffeinated beverages.  How many times do we grab a cola or a cup of coffee as a pick me up when we're feeling sluggish?  And we're actually robbing our bodies of thiamine!  

Also get your Vitamin D level up in the eighties.  Vitamin D works much better than at the lower levels currently thought to be sufficient ( 30-40 nmol/l).  Get out in the sunshine, take a D3 supplement, or eat more liver!  Liver is a great source of all the fat soluble vitamins (A, D, E, and K), plus all the B vitamins.  

And let's not forget Vitamin C!  

I know Thiamine changed my life!  I'm so glad what I learned is helping others!   

Keep us posted on your progress!  

Thanks for letting us know! 

 

 

 

Hi I must say that I  am not impressed that my doctor’s nurse called to discuss my blood work. He ordered 1000mg shot twice a week for two weeks, then 1000mg IM monthly. No other advice other than take a ‘gummy B vitamin,  nor recommended a follow up apt. The Thiamine def seems to help, so I plan to increase it gradually. I feel like I’m in this alone. Would a B-complex vitamin one a day, magnesium 500mg twice a day, Vitamin D 5000 twice a day seem appropriate? Or would sublingual be better? …..The doctor failed to address that the following week my OBGYN started me on Estriol 2.5mg and Provara 2.5mg. …which I’m assuming means something r/t to my Heath. I know med brands probably can’t be recommended on this site, but could you hint me in the direction re Allitgiame/Benfortamine.? Would this combination be added /be appropriate in addition to the other suppliants above, or would it replace the Thiamine dose above in a month or so? I might need to find a new doctor ;( 

thank you so very much!

joe

[knitty kitty]

Hi, joe! 

You didn't say.... 1000 mg of what...?  If it's thiamine, yes, do get the shots.  You can still take the OTC thiamine on the other days.

Are you having menstrual problems? Why the steroid and estrogen hormone? 

 

Information about magnesium...

https://ods.od.nih.gov/factsheets/Magnesium-HealthProfessional/

And thiamine...

https://ods.od.nih.gov/factsheets/Thiamin-HealthProfessional/

 

This is the brand of Allithiamine I use...

https://www.pureformulas.com/allithiamine-vitamin-b1-50-mg-60-capsules-by-ecological-formulas.html?accountid=53000524&CAWELAID=847733950&CATARGETID=530005240008780909&cadevice=t&gclid=EAIaIQobChMIhdjngJij8wIVKnNvBB2CzQI8EAQYAiABEgJb2PD_BwE

 

This is the brand of Benfotiamine I take...

https://www.lifeextension.com/search#q=Benfotiamine&t=coveo4A2453FD

 

"Plain Thiamine" I take...

https://www.walmart.com/ip/NOW-Foods-Vitamin-B1-Thiamin-100-mg-100-Tablets/180381915

Shop around.

I found the Allithiamine and Benfotiamine are stronger than the plain Thiamine, so I don't have to take as much of them.  I take Allithiamine or Benfotiamine with meals, and plain thiamine or Allithiamine in between.  Allithiamine crosses the blood brain barrier.  (It made all the lights come back on in my head!)  Benfotiamine helps with healing the intestines and helps with glucose control in my type two diabetes.   Experiment to find out what combination works best for you.  (Welcome to the Guinea Pig Club! 😸 )

 

You said "a B-complex vitamin one a day, magnesium 500mg twice a day, Vitamin D 5000 twice a day"

This sounds like what I'm taking, along with the thiamines listed above.  But I'm not a doctor, this is not medical advice.  (My doctors were clueless, too.  At least yours is trying.)

I personally don't care for sublinguals.  They have mannitol or sorbitols (sugar alcohols sweeteners) and weird flavorings I don't like.  But if they work for you, that's fine.

Hope this helps!

[Moccajoe]

19 minutes ago, knitty kitty said:

Hi, joe! 

You didn't say.... 1000 mg of what...?  If it's thiamine, yes, do get the shots.  You can still take the OTC thiamine on the other days.

Are you having menstrual problems? Why the steroid and estrogen hormone? 

 

Information about magnesium...

https://ods.od.nih.gov/factsheets/Magnesium-HealthProfessional/

And thiamine...

https://ods.od.nih.gov/factsheets/Thiamin-HealthProfessional/

 

This is the brand of Allithiamine I use...

https://www.pureformulas.com/allithiamine-vitamin-b1-50-mg-60-capsules-by-ecological-formulas.html?accountid=53000524&CAWELAID=847733950&CATARGETID=530005240008780909&cadevice=t&gclid=EAIaIQobChMIhdjngJij8wIVKnNvBB2CzQI8EAQYAiABEgJb2PD_BwE

 

This is the brand of Benfotiamine I take...

https://www.lifeextension.com/search#q=Benfotiamine&t=coveo4A2453FD

 

"Plain Thiamine" I take...

https://www.walmart.com/ip/NOW-Foods-Vitamin-B1-Thiamin-100-mg-100-Tablets/180381915

Shop around.

I found the Allithiamine and Benfotiamine are stronger than the plain Thiamine, so I don't have to take as much of them.  I take Allithiamine or Benfotiamine with meals, and plain thiamine or Allithiamine in between.  Allithiamine crosses the blood brain barrier.  (It made all the lights come back on in my head!)  Benfotiamine helps with healing the intestines and helps with glucose control in my type two diabetes.   Experiment to find out what combination works best for you.  (Welcome to the Guinea Pig Club! 😸 )

 

You said "a B-complex vitamin one a day, magnesium 500mg twice a day, Vitamin D 5000 twice a day"

This sounds like what I'm taking, along with the thiamines listed above.  But I'm not a doctor, this is not medical advice.  (My doctors were clueless, too.  At least yours is trying.)

I personally don't care for sublinguals.  They have mannitol or sorbitols (sugar alcohols sweeteners) and weird flavorings I don't like.  But if they work for you, that's fine.

Hope this helps!

Hi. It’s 1000mcg of B12. IM shot.  .. I’m 49, and from Canada. I was born with congenital hip dysphasia. And was never expected to walk. One doctor apparently took interest in me and actually looked at the chart. He told my mother that due to the excessive unprotected X-rays he experienced ‘way too many’ , ovarian damage and probably wouldn’t have kids  (Free medical in Canada and an abundance of repeat test ) And I can walk, couldn’t pass a drunk driving test by walking a straight line if I ever had to. Lol. But I deal with it. I believe I went through menopause in my late 30’s. A doctor put me on BCP as a replacement. I took BCP for years, and was in denial of early menopause. Recently I decided to stop the BCP  and actually have the blood work. So yes, early menopause! But I knew in my heart tho. And osteoporosis already my age. .. I didn’t know I had celiac then, which may have contributing to poor absorption of calcium.  When I suggested this to my doctor, they though I was crazy.
And I know you are not a doctor, but I’ve share this with very few people in my life, it’s weird to type it in a forum, but good too. You are the only person that has ever tried to provide some medical based  answers. And I really appreciate it. I’m actually a hospice nurse. 
Joe

[knitty kitty]

Joe, 

I have great respect for you for being a hospice nurse!  

I had a hysterectomy before being diagnosed as Celiac, too.  And I have osteoporosis already, too.  I gave up dairy a long time ago (casein allergy and lactose intolerance), also before Celiac diagnosis.  Obviously I didn't absorb enough calcium, either.  Over time I've had a broken leg, cracked ribs, cracked teeth and most recently crushed vertebrae and cracked pelvis.  But doctors didn't offer any advice or treatment...Heavy sigh...

Which reminds me, I take a Calcium supplement, too.  We're supposed to take twice as much Calcium as magnesium (2:1 ratio).  Take them at separate times or they will compete for absorption.  Obviously food sources aren't enough for us.  

Yes, I know the feeling of being thought crazy.  I've had a lifetime of my Celiac symptoms being ignored or dismissed.  My thiamine deficiency progressed to Wernicke's after being put on Metformin and a thiazide diuretic and several antidepressants (all known to interfere with thiamine pathways and resulting in thiamine deficiency).  I lost my job/career (microbiologist) because doctors didn't recognize Wernicke's since I wasn't an alcoholic.  So I had to find my own answers. 

I'm so thankful to share so others won't have to suffer like I did.  I'm also thankful the site administrator tolerates my unusual point of view.  (But he takes Benfotiamine now for his diabetes.)  

If you're interested, I've put research links about thiamine deficiency and some of my story related in previous posts here...

And, yes, get the B12 injections.  I have faith that the Thiamine supplementation will resolve the high level.  

There's a way to send me a personal message on here, if you like.  

So nice to chat with you!  

{{{Hugs}}}

Kitty