I have Thiamine Deficiency

[Whit]

I'm really excited to find something wrong on paper!

Normal for this test is 8-30 and mine was 4. And evidently a year ago it was 8, which is still low and shows that it has slowly dropped in the past year.

What is disturbing to me is that over the past year I have made a huge effort to try to cure myself through diet (or at least see what improvement I can get through diet). I'm now living with my parents and they have rented out a room in the house to someone in exchange for cooking for me. So I eat all fresh, homemade food. 75-100g of animal protein per day in turkey/beef/buffalo/fish and yogurt. 2-3 bowls of vegetables per day including tons and tons of kale and chard. 5 pieces of fruit every day. A typical day will be 2 bananas, 2 oranges, an apple, and a bowl of blueberries in my yogurt. Plus I've been taking a multivitamin with Thiamin most of the past year, plus "source naturals Coenzymate B complex" which has Thiamin in sublingual form.

Not only that but during the past year I have developed a lot of symptoms some of which seem to match well with Thiamin deficiency. My legs hurt from walking even very short distances, it's a broad ache in the whole muscle in the back of the legs, calf and thigh. I can walk to the kitchen and back about 3 times and then I have to use a wheelchair for the rest of the day. If I push it and keep walking despite the pain, it just gets worse and worse and takes days to recover, and gets so sensitive that even walking to the bathroom makes it worse so I have to crawl. I'm pretty sure it's circulation related or circulation caused because elevating my legs really helps, along with massage and sometimes compression socks. I've also had strange respiratory symptoms like shortness of breath.

So the question now seems to be how I could be deficient. And I'm not sure just taking even more is going to do anything considering that I've been getting at least a decent amount in supplement and food form during the past year, and it has dropped from 8 to 4. My general doctor was baffled. That doesn't mean much though... :Retro wink:

I just spoke to a doctor who seems pretty good (Neil Nathan) and he is going to have some Thiamine injections sent to me and wants me to do 1 injection per day of 100mg. But the Co-enzymate b complex I was taking was sublingual, so that was already bypassing my digestive system.

I've started taking methyl B12 recently, and I'm slowly working up to a full lozenge because when I took the whole dose it gave me insomnia. Other than that I'm just taking D Ribose. I stopped all my other supplements about a month ago just to see what would happen. My symptoms haven't changed since.

I suppose it could be a false test result, the doctor said the test was unreliable. But I've found so little wrong that I'm really excited by this possible news. And I'd love any thoughts anyone has...

 

[merylg]

Consumption of foods high in tannins can cause B1 (Thiamine) deficiency. Think tea, wine, beer.

http://www.ncbi.nlm.nih.gov/pubmed/910744

http://en.wikipedia.org/wiki/Tannin

 

[Whit]

Don't drink tea, wine or beer. I just drink lots of water and a bottle of pedialyte everyday. Though I'm going to switch to cheaper electrolyte tablets soon.

I'm going to do another kind of test tomorrow, so that will give me some more data.

 

[Little Bluestem]

I do not have any kind of medical training. This is just one ill person to another.

I think when you take a nutrient and become more deficient in that nutrient it is an indication that you are deficient in something that is needed to utilize that nutrient. Do you know if Neil Nathan has consulted with Rich VanKonyenburg about your case? He knows quite a bit about metabolism and might have some ideas on why you dont seem to be utilizing Thiamine.

Methyl B12 is a melatonin antagonist. If you take it too late in the day, it may interfere with sleep. Too late can be subjective.

 

[Whit]

Yeah I take the methyl B12 first thing in the morning Maybe Rich will see this thread.

 

[Hanna]

Hi Whit,

I was found Thiamine deficient last year too and experience the same legs symptoms as you do and also severe sound sensitivity (also reported to be related to B1 deficiency by some souece - soory don't recall it). I have been supplementing with regurlar B1 and benfothiamin (200 mg/day) from september 2011 to april 2012. I didn't noticed any major change though.
As Little Bluestem quoted, maybe there is an another nutrient needed for B1 use. According to hair mineral testing I was found very deficient in B2, and B2 is critical for proper use of B1, B3, B6 folate and B12. So since April, I have change my supplements routine, but it is still too soon to see some change (if any). I know, it isn't very helpful, but it is one other possibility...

 

[Whit]

It is really interesting to hear that you have the same leg symptoms, it's been challenging not having any idea what's going on and I didn't think this was a normal symptom of CFS. How much are you able to walk before it starts hurting? It's a general ache that gets worse and worse the more you walk, and putting your legs up in the air (I often do it lying in bed with my legs in the air) helps?

 

[brenda]

Hi

I was found to be highly deficient in b2 as well and have been supplementing it after giving up my b-complex which has apparently caused a depletion of b2 due to it being needed to process other b vitamins.

The thing that stands out for me is the diet you were on as I was eating a huge amount of vegetables with juicing and a really high fruit and veg diet. I now see that it was too high in folates for me due to the recent effects of asparagus which is high in folic acid, after reducing it in my diet. I thought that the more green vegetables I ate the better. The hair sample done at that time was the one showing b2 depletion ( I have had another done recently) backed up by an OA test.

What I want to say is, that recently I have begun to have dream recall which to me shows that b6 levels are coming up which to me helps prove the theory that Dog Person has put forward that common knowledge on b vitamin supplementation is faulty. She says that correcting a b2 deficiency means that we will obtain the other b vits from our food and that is what is happening to me I think due to the evidence of dream recall after years of no dream recall.

 

[Hanna]

It is really interesting to hear that you have the same leg symptoms, it's been challenging not having any idea what's going on and I didn't think this was a normal symptom of CFS. How much are you able to walk before it starts hurting? It's a general ache that gets worse and worse the more you walk, and putting your legs up in the air (I often do it lying in bed with my legs in the air) helps?

It depends on many things. There were days it began to hurt on the very first steps. It has been less disabling for a few months, since I have followed a "grounding" routine. Standing or walking on the grass has helped me a great deal. I still have this stiffness but am able to walk up to 30 mn on good days - walk on grass only!!!. I know it seems strange, but the same attempts to walk on concrete/pavement etc... was a total mess, and I still have to use wheelchair for going out my house.
I have to massage the calves a lot. By the way, there are a few points (among the 18) that are specific to fibropain, so I think it would be pretty common in CFS too.

 

[Whit]

Interestingly, my B12 came back very high. It is 967 and the range is 200-1000. I'm not sure if there are different tests or how accurate this is. But maybe I don't need to take B12.

Feeling really crappy today, as if I have a fever but my temp is low as usual. I'm not sure if it's the DHEA or B1 I just started taking, or something else. :mask:

 

[Vegas]

Sulfites degrade thiamine

Supplementation with moly might be indicated. Might want to lower your sulfur amino intake because this might just be making maters worse by dumping more methionine & cysteine into the equation.

I'm really excited to find something wrong on paper!

Normal for this test is 8-30 and mine was 4. And evidently a year ago it was 8, which is still low and shows that it has slowly dropped in the past year.

What is disturbing to me is that over the past year I have made a huge effort to try to cure myself through diet (or at least see what improvement I can get through diet). I'm now living with my parents and they have rented out a room in the house to someone in exchange for cooking for me. So I eat all fresh, homemade food. 75-100g of animal protein per day in turkey/beef/buffalo/fish and yogurt. 2-3 bowls of vegetables per day including tons and tons of kale and chard. 5 pieces of fruit every day. A typical day will be 2 bananas, 2 oranges, an apple, and a bowl of blueberries in my yogurt. Plus I've been taking a multivitamin with Thiamin most of the past year, plus "source naturals Coenzymate B complex" which has Thiamin in sublingual form.

Not only that but during the past year I have developed a lot of symptoms some of which seem to match well with Thiamin deficiency. My legs hurt from walking even very short distances, it's a broad ache in the whole muscle in the back of the legs, calf and thigh. I can walk to the kitchen and back about 3 times and then I have to use a wheelchair for the rest of the day. If I push it and keep walking despite the pain, it just gets worse and worse and takes days to recover, and gets so sensitive that even walking to the bathroom makes it worse so I have to crawl. I'm pretty sure it's circulation related or circulation caused because elevating my legs really helps, along with massage and sometimes compression socks. I've also had strange respiratory symptoms like shortness of breath.

So the question now seems to be how I could be deficient. And I'm not sure just taking even more is going to do anything considering that I've been getting at least a decent amount in supplement and food form during the past year, and it has dropped from 8 to 4. My general doctor was baffled. That doesn't mean much though... :Retro wink:

I just spoke to a doctor who seems pretty good (Neil Nathan) and he is going to have some Thiamine injections sent to me and wants me to do 1 injection per day of 100mg. But the Co-enzymate b complex I was taking was sublingual, so that was already bypassing my digestive system. It's a little frustrating how passive and slow doctors seem to be. Hard to wait 3 weeks to see what happens. I've been waiting on the "most likely, obvious solutions" for years now, one thing after another that doctors say "lets' have you do this because it's the most likely thing, and check back in a month". 4 years ago I was doing the same thing tracking a possible GI answer, one thing after another, doing one test at a time, waiting month after month to keep hearing "it's all normal" When are they going to get it that I dont' have the most likely, easy thing?! I'll be dead by the time they finish testing me for all the easy obvious answers one at a time.

I've started taking methyl B12 recently, and I'm slowly working up to a full lozenge because when I took the whole dose it gave me insomnia. Other than that I'm just taking D Ribose. I stopped all my other supplements about a month ago just to see what would happen. My symptoms haven't changed since.

I suppose it could be a false test result, the doctor said the test was unreliable. But I've found so little wrong that I'm really excited by this possible news. And I'd love any thoughts anyone has...

 

[Whit]

What would they do? I don't know much science anymore, sorry... Can you elaborate a little more?

 

[Hanna]

Hi Whit,

Here is a quote from a paper that Christine (DogPerson - see hair mineral testing) sent to me, that seems important for those who are supplementing in B1. Manganese level has been found especially low in samples from CFS-ME (together with B2) in Hair Mineral Tests and is a rather critical mineral for our health.


"Here's a paper (obviously very old) but it shows there is a strong relationship between levels of manganese and being able to store thiamine in the liver. Low levels of manganese can cause ataxia. The paper found that when low levels of thiamine were supplemented, it antagonized manganese levels and led to ataxia. You should post it for Whit that has this deficiency also.

J. Nutr.-1954-Hill-73-82[1].pdf

Storage of Dietary Manganese and Thiamine in the Rat
Robert M. Hill and Dorsey E. Holtkamp
Department of Biochemistry, University of Colorado Medical Center, Denver
Received for publication October 6, 1953

"5. With thiamine intake constant at 0.03 mg per rat per day, manganese supplementation of the diet from a level of 0.03 to 1.0 mg. per rat per day increases the storage of thiamine in the liver."

 

[Whit]

Interesting. So you're saying that Manganese and B2 are often low in CFS patients?

Would something like this Manganese supplement be a good idea then? http://www.amazon.com/Solgar-Chelat...ef=sr_1_6?s=hpc&ie=UTF8&qid=1336113924&sr=1-6

 

[Hanna]

I don't know this product, Whit. It seems that a lot of "B2 prorocol" people are taking with success the WaterOz Manganese because of very poor absorption of other forms. Living in the Bay Area I think you won't have any pb to find it.

 

[merylg]

Sulfites degrade thiamine ...Supplementation with moly might be indicated. Might want to lower your sulfur amino intake because this might just be making maters worse by dumping more methionine & cysteine into the equation.

Hi Vegas & Whit,

I learned this from Dog Person (Christine) that: "...you can not manufacture sulfite oxidase enzyme to detoxify them (sulphites) probably because your molybdenum is too low. It keeps dropping when you have too much unbound copper.
As soon as you take B2, you start binding copper and the molybdenum just comes up without supplementation because you only need a tiny amount of mcg/day of it. "

 

[Gavman]

Interestingly, my B12 came back very high. It is 967 and the range is 200-1000. I'm not sure if there are different tests or how accurate this is. But maybe I don't need to take B12. :mask:

My folic acid and b12 were high too, after only a month - and i started getting more defiency symptoms. I decided i'd work the other cycles up instead, and man - that made it all the difference.

 

[therron]

Interestingly, my B12 came back very high. It is 967 and the range is 200-1000. I'm not sure if there are different tests or how accurate this is. But maybe I don't need to take B12.

Feeling really crappy today, as if I have a fever but my temp is low as usual. I'm not sure if it's the DHEA or B1 I just started taking, or something else. :mask:

High b12 can mean a functional deficiency, meaning your cells can't utilize it.

 

[Vegas]

"What would they do? I don't know much science anymore, sorry... Can you elaborate a little more?"

I never knew much science in the first place, so don't bet the farm on this, but here is what I think:

As noted above, the basis for Moly supplementation is that it is a cofactor for the chemical reaction that converts sulfite to sulfate. Excess copper, which is commonly found with mercury toxicity and a common ME/CFS finding, can result in impaired sulfite to sulfate conversion. Presumably, excessive demand on the other Mo-dependent chemical reactions will create the same effect...like the breakdown of aldehydes (yeast). Another one of the Mo-enzymes has an important in a conversion that makes uric acid, which has a role scavenging for nasty reactive oxygen species. So one strategy is to start getting moly replenished to help this SUOX enzyme as well as the others to work better because the typical chronically-ill patient has lots of demands for Mo.

A complementary strategy is to reduce the raw material, methionine/cysteine, that comes from the diet because these amino acids (which are of course found in high quantities in many proteins) can be metabolized to form more sulfite. You don't want more sulfite if the reaction that oxidizes sulfite to sulfate is under-functioning.

Rich might tell you that your relatively high B12 may be an indication of a functional B12 deficit, and he of course has a hypothesis of how this interferes with methylation and the transulfuration pathway that ultimately, if somewhat indirectly, influences the metabolism of sulfite. There may be a role for B12 in your situation, and this has found to improve sulfite metabolism, which I think means it has to interact upstream of the SUOX reaction.

Of course, the more direct method is supplementing with thiamine or perhaps benfotiamine. Don't take this with other b vitamins, take the thiamine or benfotiamine individually...at least it sounds like you only took this with a complex.

The interesting part though comes from Merylg & Hanna's comments. As Merylg contributed "As soon as you take B2, you start binding copper and the molybdenum just comes up without supplementation because you only need a tiny amount of mcg/day of it." If this is true, B2 is something to consider, individually, as well. I will submit that my experience with B2 confirms what Christine has reported: taking B2 in a complex is vastly different from taking it separately. Taking the coenzymated forms of B vitamins together will not overcome this problem.

As what Hanna said about the Manganese, this is also very interesting. Manganese deficiency is another common finding with chronic Hg toxicity, I knew of its role in SOD but hadn't heard about its interaction with thiamine. I will, however, submit that Andy Cutler, who knows a thing or two about hair minerals after have written a book on this and studied thousands of hair tests himself, cautions about Manganese supplementation. I believe he is o.k. with RDA level Manganese supplementation in those with severe deficiency, but he is very cautious of its use due to concerns about toxicity. I would heed his warnings and supplement Manganese cautiously.


Good luck.

 

[Whit]

It looks like source naturals makes individual co-enzymated B vitamins. Would this be the ideal way to go? When you say take them separately do you mean at a different time of day, or just in a separate pill? Why would this matter?