I want to try supplementing extra thiamin, but all the supplements that I can find on Amazon have like 100mg per tablet. That seems like quite a lot, considering that the RDA is just over 1mg. I follow the rule of "start low and go slow" as I know that we can be very sensitive to supplements, and my ME is severe. How can I start low with thiamin when the tablets are 100mg ?! I have a pill splitter, but realistically that will only allow me to get it down to 25mg. Has anyone managed to find a thiamin supplement with smaller amounts than 100mg in??? Or should I not worry about starting low?
Thiamin (Vitamin B1) supplements
- Thread starter Sarah94
- Start date
Carl
Senior Member
- Messages
- 449
- Location
- United Kingdom
It might be worth you getting the enzyme activated version because it require less work for your liver:
Thiamine pyrophosphate, Thiamine pyrophosphate chloride, thiamine diphosphate or cocarboxylase.
If you get a milligram scale you could then get some capsules. Weigh 10 or 20 capsules and find the average. Look up the capsule weight for the capsule size. Total weight / 10 (20) capsules - capsule weight for the average capsule contents. You can then split the capsule up to get the required amount of mg. The capsules will contain fillers so it is not a 1:1 for the Thiamine weight. I prefer pure powder but finding the enzyme activated Thiamine in powder form could be extremely difficult.
I personally dislike tablets.
I have similar problems with Riboflavin 5 phosphate (B2). 50mg capsules are far too large and cause a dramatic rise in blood sugar if I take one.
Thiamine pyrophosphate, Thiamine pyrophosphate chloride, thiamine diphosphate or cocarboxylase.
If you get a milligram scale you could then get some capsules. Weigh 10 or 20 capsules and find the average. Look up the capsule weight for the capsule size. Total weight / 10 (20) capsules - capsule weight for the average capsule contents. You can then split the capsule up to get the required amount of mg. The capsules will contain fillers so it is not a 1:1 for the Thiamine weight. I prefer pure powder but finding the enzyme activated Thiamine in powder form could be extremely difficult.
I personally dislike tablets.
I have similar problems with Riboflavin 5 phosphate (B2). 50mg capsules are far too large and cause a dramatic rise in blood sugar if I take one.
lafarfelue
Senior Member
- Messages
- 433
- Location
- Australia
Unsure about alternative products with smaller amount in them...
But! thiamine is soluble in water so you could (for example) dissolve the 100mg in 100ml and be able to dose yourself at 1ml for each mg?
But! thiamine is soluble in water so you could (for example) dissolve the 100mg in 100ml and be able to dose yourself at 1ml for each mg?
- Messages
- 53
I have done well with fursultiamine. I also did 25mg thiamine hcl 3-4x a day and it did not hurt. I take 100mg fursultiamine 1-2x a day for a month, then cycle off for a little while. You can easily get 1mg of thiamine from diet if you eat pork or sunflower seed.
Mary
Moderator Resource
- Messages
- 17,901
- Location
- Texas Hill Country
Hi @Sarah Metcalf - I don't even look at the RDA for nutrients. I think it's generally much lower than it should be. Here's something about vitamin D and how the RDA was woefully inaccurate: https://www.sciencedaily.com/releases/2015/03/150317122458.htm
I used to have an orthomolecular doctor who treated using high dose vitamin therapy. He was extremely knowledgeable and never hurt me. Unfortunately he died a few years ago.
Also, I think people with ME/CFS in general tend to have higher nutritional needs than healthy persons. At least that's the sense I get from this board and from my own experience.
I think it's likely you would be okay starting with 25 mg. and just seeing what happens. But if that feels like too much for you, then use a knife or pill cutter and cut that in half. I don't think you have to go down to 1 mg. increments, unless you are extremely sensitive to supplements - though some people are. If you are one of the extremely sensitive people, then forget everything I said about the RDA and use your pill cutter or dissolve the tablets to get the dose you want.
The first time I tried taking extra thiamine (I took it because I had read that high doses helped several people with energy), I took 100 mg. and the next day had a really nice boost in energy. But then that was followed by severe fatigue a day or 2 after that, and I had to stop the thiamine to get my "normal" energy back.
A couple of years later I tried 100 mg. thiamine again, with the same results. But this time when the fatigue hit, I thought of refeeding syndrome. It was similar to what happened to me when I started taking methylfolate 9 years ago (I can't believe it's been that long!). The methylfolate boosted my energy but it was followed 2 days later by severe fatigue. The methylfolate had caused my body to start using more potassium as cells began to divide more rapidly and do what they are supposed to do. And this increased need for potassium caused a potassium deficiency, which caused the fatigue. But I had read about this possibility and was able to deal with it by starting to take potassium, and titrating up gradually over a couple of days until I hit the dose needed to alleviate the fatigue - it was 1000 mg a day (in divided doses). I've been taking potassium ever since.
So I speculated that something similar was happening with the thiamine - that it was increasing my need for something, thus causing the fatigue. However, this fatigue felt different than the low potassium fatigue. For one, potassium supplement did not help, and it just felt different. I had read that hypophosphatemia (low phosphate) was the hallmark of refeeding syndrome, so wondered if that was the problem. I found that dairy products are high in phosphate so I drank several glasses of kefir and within several hours that awful fatigue began to abate. Which meant that I was able to keep taking the thiamine! I've continued to need extra phosphate about twice a week, not daily as i have to do with potassium. (I'm taking a low dose of a phosphate supplement)
The B1 I'm taking is in tablet form and my body has no trouble using it. Actually I take 200 mg. a day now, and do fine with it. But I'm so glad I figured out the low phosphorous problem. Here's an article about refeeding syndrome: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2440847/
I used to have an orthomolecular doctor who treated using high dose vitamin therapy. He was extremely knowledgeable and never hurt me. Unfortunately he died a few years ago.
Also, I think people with ME/CFS in general tend to have higher nutritional needs than healthy persons. At least that's the sense I get from this board and from my own experience.
I think it's likely you would be okay starting with 25 mg. and just seeing what happens. But if that feels like too much for you, then use a knife or pill cutter and cut that in half. I don't think you have to go down to 1 mg. increments, unless you are extremely sensitive to supplements - though some people are. If you are one of the extremely sensitive people, then forget everything I said about the RDA and use your pill cutter or dissolve the tablets to get the dose you want.
The first time I tried taking extra thiamine (I took it because I had read that high doses helped several people with energy), I took 100 mg. and the next day had a really nice boost in energy. But then that was followed by severe fatigue a day or 2 after that, and I had to stop the thiamine to get my "normal" energy back.
A couple of years later I tried 100 mg. thiamine again, with the same results. But this time when the fatigue hit, I thought of refeeding syndrome. It was similar to what happened to me when I started taking methylfolate 9 years ago (I can't believe it's been that long!). The methylfolate boosted my energy but it was followed 2 days later by severe fatigue. The methylfolate had caused my body to start using more potassium as cells began to divide more rapidly and do what they are supposed to do. And this increased need for potassium caused a potassium deficiency, which caused the fatigue. But I had read about this possibility and was able to deal with it by starting to take potassium, and titrating up gradually over a couple of days until I hit the dose needed to alleviate the fatigue - it was 1000 mg a day (in divided doses). I've been taking potassium ever since.
So I speculated that something similar was happening with the thiamine - that it was increasing my need for something, thus causing the fatigue. However, this fatigue felt different than the low potassium fatigue. For one, potassium supplement did not help, and it just felt different. I had read that hypophosphatemia (low phosphate) was the hallmark of refeeding syndrome, so wondered if that was the problem. I found that dairy products are high in phosphate so I drank several glasses of kefir and within several hours that awful fatigue began to abate. Which meant that I was able to keep taking the thiamine! I've continued to need extra phosphate about twice a week, not daily as i have to do with potassium. (I'm taking a low dose of a phosphate supplement)
The B1 I'm taking is in tablet form and my body has no trouble using it. Actually I take 200 mg. a day now, and do fine with it. But I'm so glad I figured out the low phosphorous problem. Here's an article about refeeding syndrome: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2440847/
Were you able to find out what caused the fatigue came after the 100 mg?
And. could you say more, whatever you wish to, about the similarities in your supplementation experiences and refeeding syndrome?
I think the studies in refeeding syndrome can tell us much about many things.
Mary
Moderator Resource
- Messages
- 17,901
- Location
- Texas Hill Country
Hi @Hope4 - actually I explained this in my above post - how I determined that the thiamine had caused my phosphorous to tank (low phosphorous can cause severe fatigue), and what I did about it. You may not have read far enough - it's in the second to last paragraph.
I did explain above about methylfolate causing my potassium to tank, which is a manifestation of refeeding syndrome, and how thiamine caused my phosphorous to tank, again due to refeeding syndrome. The article I linked above (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2440847/) states the refeeding syndrome is:
Generally refeeding syndrome is associated with starvation or severe malnutrition (e.g., in alcoholics, or people with eating disorders). I first became aware of refeeding syndrome after reading several of Freddd's posts here about how a sudden drop in potassium can occur when people start taking B12 or folate, and this is due to refeeding syndrome. Methylfolate can cause cells to divide more rapidly and this increases the need for potassium because it uses more potassium, thus inducing a potassium deficiency. And this can happen very quickly and is potentially dangerous.
But I saw an endocrinologist recently and I tried to explain about refeeding syndrome because I wanted to see if he could figure out my low phosphorous issues, but he just cut me right off, would not listen, and said that refeeding syndrome only occurs in situations such as Auschwitz - where are people are starved and extremely malnourished.
However, many people on this board have experienced low potassium after starting B12 and/or methylfolate. I think it's another weird ME/CFS anomaly. Actually anyone who is deficient in B12 and methylfolate and who starts to fix the deficiency can and often will experience low potassium, only most doctors aren't aware of this. I think their training in nutrition is extremely lacking. I think the anomaly is how many people with ME/CFS are deficient in B12 and folate, and how much trouble we have utilizing these nutrients.
@Mary Thanks very much for putting the pieces together for me. I was thinking about the hyperglycaemia and low phosphate in refeeding. I appreciate your pointing out the low potassium concern.
I am sorry the endocrinologist was so dismissive. I hope you have found someone kinder and with the right knowledge.
I often ask the naturopaths at the health food stores about nutrition and biochemical questions.
Thanks again for your help.
I was thinking about the hyperglycaemia and low phosphate in refeeding. I appreciate your pointing out the low potassium concern.I am sorry the endocrinologist was so dismissive. I hope you have found someone kinder and with the right knowledge.
I often ask the naturopaths at the health food stores about nutrition and biochemical questions.
Thanks again for your help.
frozenborderline
Senior Member
- Messages
- 4,405
I started with 1 gram, or 1,000 mg of thiamine hcl, and worked up to 2grams. I also had tried forms like allithiamine that are fat soluble so you can have them effectively absorbed without taking inconvenient amounts
frozenborderline
Senior Member
- Messages
- 4,405
Did they get their potassium tested before and after? I’m curious how they knew this
Mary
Moderator Resource
- Messages
- 17,901
- Location
- Texas Hill Country
I think a lot of them just found out empirically, by either taking a potassium supplement or eating or drinking foods high in potassium, e.g., low-sodium V8. Many people with ME/CFS have low intracellular potassium, despite normal blood work. My potassium was always in the normal range (albeit on the low side) on blood work but I had severe fatigue after starting the methylfolate which was alleviated by potassium. Actually, I'd had symptoms of low potassium even before starting methylfolate, only I never knew what it was. All I knew was it was an awful kind of fatigue which was different from PEM. I never went to the doctor with it because, well, we all know why - So I would just ride it out, lose more days of my life, but after starting the methylfolate, I got the exact same type of fatigue which potassium took care of. And it doesn't happen to me any more.
See here for an explanation of why people with ME/CFS often have low intracellular potassium despite normal blood work: https://forums.phoenixrising.me/thr...ded-in-methylation-treatmt.18670/#post-291422
Some people might have gotten tested for potassium, I really don't know, but the testing quite possibly might not have shown anything wrong. Several people who did have awful symptoms after starting methylfolate or B12, reported that they began to feel better after getting more potassium, whether through supplements or food or juice, etc. I usually recommend people try drinking several glasses of low-sodium V8 - it's high in potassium and very often within several hours they start to feel better. It's an easy safe way to find out if low potassium is an issue, and if it is, then they can decide what to do from there.