Bad reaction to 50mf TTFD thiamine (allithiamine)

[shock_master]

Thought I'd do a post as there seem to be many here up on the intracacies of supplementation. 2 days ago I took one 50mg dose of TTFD (allithiamine), based on rave reviews from quite a few people on r/cfs. Of course now that I've gone looking there's plenty of reports elsewhere of negative reactions.

I had an intense reaction-felt very wired and anxious, heart palpitations, and also now drop in mood + some anhedonia, the intensity has dropped somewhat but these are all still issues.
I obviously stopped at one dose, but I'm wondering why I'm still feeling effects now more than 48 hours later? What might it have disrupted?

 

[splusholia]

Could it have reduced phosphorus? I think this happened to someone else on this forum. Also, needs to be taken with co-factors: magnesium and b-complex, from what I remember.

 

[shock_master]

Could it have reduced phosphorus? I think this happened to someone else on this forum. Also, needs to be taken with co-factors: magnesium and b-complex, from what I remember.

Yeah maybe? I take magnesium and all the BS so I don't think that was a problem. I think I've settled now but that was 60hrs of feeling like something was seriously up with my brain

 

[splusholia]

Yeah maybe? I take magnesium and all the BS so I don't think that was a problem. I think I've settled now but that was 60hrs of feeling like something was seriously up with my brain

It might also be worth reading articles by Derek Longsdale about paradoxical start up reaction to thiamine. I take allithiamine with no problems, but obviously we’re all different.

 

[L'engle]

I tried benfotiamine a few times earlier in the year and felt badly on it. It may be the phosphorus issue but it's hard to get phosphorus supplements so I haven't tried.

 

[Mary]

Could it have reduced phosphorus? I think this happened to someone else on this forum.

Yeah maybe? I take magnesium and all the BS so I don't think that was a problem. I think I've settled now but that was 60hrs of feeling like something was seriously up with my brain

@shock_master - the allithiamine might have reduced your phosphorous with a refeeding syndrome reaction. Taking magnesium and B vitamins won't replace phosphorous.

When I first took thiamine (100 mg I think) several years ago, it did make me a bit jittery at first but it also gave me really nice energy for a day, and then I was hit with severe fatigue. It took a couple of years and one or two more tries before I figured out that the thiamine was depleting my phosphorous due to refeeding syndrome. Hypophosphatemia is the hallmark of refeeding syndrome:

Refeeding syndrome can be defined as the potentially fatal shifts in fluids and electrolytes that may occur in malnourished patients receiving artificial refeeding (whether enterally or parenterally5). These shifts result from hormonal and metabolic changes and may cause serious clinical complications. The hallmark biochemical feature of refeeding syndrome is hypophosphataemia. However, the syndrome is complex and may also feature abnormal sodium and fluid balance; changes in glucose, protein, and fat metabolism; thiamine deficiency; hypokalaemia; and hypomagnesaemia

Refeeding syndrome: what it is, and how to prevent and treat it - PMC (nih.gov)

When I stumbled across the possibility of low phosphorous for my severe reaction to thiamine, I looked up good sources of phosphorous, read that dairy was good so drank about 3 glasses of kefir and within a few hours my energy was coming back. I was so happy - it meant that I could keep taking the thiamine. I worked my way up to 400 mg of thiamine a day, and I have to take a phosphorous supplement about 3 times a week.

I'd also experienced refeeding syndrome when I started taking methylfolate - this time my potassium tanked quite badly, again causing severe fatigue and some other symptoms, but different than the low phosphorous. But I was prepared for this thanks to Freddd's posts about methylation and potassium. And I still have to take potassium daily, some 12 years later. Oh well - it keeps me going!

 

[L'engle]

@Mary Where do you get your phosphorus supplement? I haven't been able to find one through a quick search of iherb or google.

 

[Mary]

@Mary Where do you get your phosphorus supplement? I haven't been able to find one through a quick search of iherb or google.

@L'engle this is where I've been buying my phosphorous for the last year or so. Sodium, Potassium, Phosphorus Powder Concentrate (Sugar Free) 100 Pack – Hargraves Online Healthcare (hargravesotc.com)

As you can see, they have 11 units left - this has been typical for the past year. They'll run out, and then a month or 2 or 3 later will have more, I'm guessing due to supply chain issues. Each packet is equivalent to about 20% of the RDA. I need about 3 or 4 of these a week, my need can change.

Swanson Vitamins used to sell a monosodium phosphate product but they stopped a few years ago, unfortunately. It can be hard to find a good phosphorus supplement.

I've found a few other possibilities (Phos-nak among others), but have been doing well with this so am sticking with it as I am able to. The one doctor I tried to talk to about my need for more phosphorous, trying to explain refeeding syndrome to him, was a bust - he told me that people at Auschwitz or starving developed refeeding syndrome, not healthy looking people like me - and I could not explain anything to him.

 

[shock_master]

@shock_master - the allithiamine might have reduced your phosphorous with a refeeding syndrome reaction. Taking magnesium and B vitamins won't replace phosphorous.

When I first took thiamine (100 mg I think) several years ago, it did make me a bit jittery at first but it also gave me really nice energy for a day, and then I was hit with severe fatigue. It took a couple of years and one or two more tries before I figured out that the thiamine was depleting my phosphorous due to refeeding syndrome. Hypophosphatemia is the hallmark of refeeding syndrome:


Refeeding syndrome: what it is, and how to prevent and treat it - PMC (nih.gov)

When I stumbled across the possibility of low phosphorous for my severe reaction to thiamine, I looked up good sources of phosphorous, read that dairy was good so drank about 3 glasses of kefir and within a few hours my energy was coming back. I was so happy - it meant that I could keep taking the thiamine. I worked my way up to 400 mg of thiamine a day, and I have to take a phosphorous supplement about 3 times a week.

I'd also experienced refeeding syndrome when I started taking methylfolate - this time my potassium tanked quite badly, again causing severe fatigue and some other symptoms, but different than the low phosphorous. But I was prepared for this thanks to Freddd's posts about methylation and potassium. And I still have to take potassium daily, some 12 years later. Oh well - it keeps me going!

Hi Mary, thanks so much for this response! Do you have a phosphorus supplement that you'd recommend? Yes I've had the same thing with folate/b12 and needing potassium

 

[Mary]

Hi Mary, thanks so much for this response! Do you have a phosphorus supplement that you'd recommend? Yes I've had the same thing with folate/b12 and needing potassium

Hi @shock_master - see post #8 right above your last one where I describe what I'm taking

Also, you might be able to get your doctor to prescribe a phosphorous supplement so insurance could pay for it. I did get one doctor to prescribe something (it was like phos-nak which for unknown reasons costs about 3 times the Rugby supplement I linked above though I think it's the identical product). Unfortunately I couldn't really explain to her or she didn't get it that my need changes week to week - some days I need more, some days I don't need any, and she just didn't prescribe enough. So it was easier for me to just buy my own.

I am careful with it. I do muscle testing to determine how much I need, if any, on any given day (I've been doing this for a long time with all my supplements). Ideally I'd have a more scientific way of dosing, but this is working for me.

 

[Mary]

@L'engle - I meant to tag you in the above post - your doctor might prescribe a phosphorous supplement for you so your insurance would pay for it. Though buying it on my own worked out better for me.

 

[Judee]

@L'engle this is where I've been buying my phosphorous for the last year or so. Sodium, Potassium, Phosphorus Powder Concentrate (Sugar Free) 100 Pack – Hargraves Online Healthcare (hargravesotc.com)

@Mary, I also found these as another source of phosphorus just in case you run out again. I may try them at some point myself. They're from overseas though so I don't know how much shipping and VAT would be. The chat bot mentioned something about using it to compute those fees.

https://www.metabolics.com/magnesium-phosphate-pot-of-90-capsules.html

Edit: They say, "Metabolics.com Magnesium Phosphate has about a quarter of the RDA of magnesium in each capsule, this is another general purpose magnesium supplement, with good bio availability. It also has the added benefit of about 18% of the RDA of phosphorus."

Anyway just a thought.