100mg IV HCL Thiamine = severe neuro symptoms.

[Bobbi007]

Anyone wihh the any ideas why an iv of 100mg hcl thiamine would cause the following?

Increased GI motility (27 BM’s the day after)
Fine motor issues in fingers and feet
Feeling intoxicated and off balance
Head pressure and pain
Severe weakness in legs and arms
Vision issues in right eye

It basically created all the symptoms it’s deemed to treat. I discontinued all b1 since. It’s been 3 weeks and still a mess - Al thought maybe not as bad . Anything I can find on toxicity says symptoms abate after hours to couple days. Not my experience. It feels like a TBI / neuro-inflammation.

Any ideas?

 

[Faith2007]

I'm not a doctor or medical researcher, but I have read in two separate places that thiamine can strengthen the immune system and/or may have antiviral properties. So in addition to you possibly having an intolerance to either hcl or thiamine or any other ingredient included in what you took, I'm wondering if you could possibly be having a die off reaction exacerbating your symptoms. ME/CFS patients are recommended to start low and slow with any type of new treatment they are trying due to intolerances. I have been allergic down to the vitamin level of something before.

 

[Bobbi007]

Thank you so much for replying. Yes I was going low and slow initially and things were getting better. I had regained so much function except for persisting respiratory weakness. Went from 2000 steps a day to 14000!!!! Then a doctor said I should try it to see if it made me feel better. Now, not only am I an utter mess but the doctors refuse to believe that iv thiamine would do this.

It almost feels like refeeding syndrome like perhaps the metabolism was w switched on too quickly and my body is struggling to adapt to those changes . I have to be ridiculously vigilant about my electrolytes or they tank. This is all so incredibly heart breaking to have a glimpse of remission then have the treatment be the poison 😞 I had a blood test that revealed thiamine deficiency so unsure of path forward at this point 💔

 

[andyguitar]

Anyone wihh the any ideas why an iv of 100mg hcl thiamine would cause the following?

Could it be the IV that has caused the problem rather than the thiamine itself? @sunshine44 might find this interesting if they are around.

 

[Bobbi007]

In what way could the iv have caused issues?

 

[Judee]

I think ME/CFS just makes us super sensitive. ("Sensitivities" is listed in the ICC as a symptom of this disease even though your doctor may not be aware of that.)

I can take Thiamine (and B1) once in a while and indeed it helps me with gray hair actually but every day and it does the opposite and ages me fast.

I think IV anything is too much for us (with maybe the exception of saline). I don't know what to tell you on how to come down off it though. I'm sorry.

It sounds like you may be aware of the Hormones Matter and their discussions on Thiamine but if not: https://www.hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/

This thread might also help some though I haven't read it in a long while: https://forums.phoenixrising.me/thr...eficiency-as-a-main-contributor-to-cfs.89406/

 

[Faith2007]

Glad to hear you were going slowly.

So andyguitar is referring to the speed with which your IV was administered possibly causing a problem.

Here's a good article https://www.ncbi.nlm.nih.gov/books/NBK482360/ and it does briefly mention that parenteral thiamine can contain aluminum, which could accumulate and cause neurotoxicity if your kidneys function poorly. In the back of my mind I was thinking about areas that thiamine gets stored in your body, and whether or not those parts were functioning well enough to clear the thiamine out properly. It is water soluble and should just pass out through urine, in a normal person.

I will say at a point where my health worsens and my current doctors can't help me, I add on a different kind of doctor. I wouldn't just accept your doctors saying IV thiamine hasn't affected you. And I feel sad that they've done that. Keep us updated.

 

[Judee]

Just noticed the Hormones Matter site is talking about a particular form of Thiamine called TTFD but I do think the site and the comments have info on some of the other forms as well.

There is also a couple FB groups that I think I mentioned in that PR thread previously.

 

[andyguitar]

In what way could the iv have caused issues?

Any medical intervention can have a strange effect on an me/cfs patient.

 

[Mary]

It almost feels like refeeding syndrome like perhaps the metabolism was w switched on too quickly and my body is struggling to adapt to those changes . I have to be ridiculously vigilant about my electrolytes or they tank.

@Bobbi007 - 100 mg. of thiamine (oral) caused my phosphorous to tank badly. At first it gave me very nice energy for a day or so, and then severe fatigue hit. It's a long story and unfortunately it took me a couple of years to figure this out. So initially though it made me feel so good I had to stop it, and this happened a couple of times. Until I figured out it was due to refeeding syndrome and hypophosphatemia is the hallmark of refeeding syndrome. Potassium, btw, did nothing to help with this.

Research showed dairy is high in phosphorous so I drank probably 3 glasses of kefir (it was several years ago) and within a few hours the horrible fatigue abated. I eventually got a phosphorous supplement and I'm able to take thiamine with no problem now.

I also had a refeeding syndrome reaction to methylfolate - first I had great energy for a day or so, and then boom - the fatigue hit. I was aware of the possiblity of my potassium tanking so was prepared to add it in and I titrated up to 1000 mg a day of potassium gluconate (in divided doses) over a couple of days, until the fatigue abated, and have taken it ever since (2010).

So you might be having a refeeding syndrome reaction to the thiamine though 3 weeks does seem like a long time to still be having symptoms, but you never know. I would try some phosphorous. I don't drink kefir daily or have much in the way of dairy products but it's a good way to see if it helps your symptoms and then you can decide if you want or need to take a phosphorous supplement.

Low phosphorous caused severe fatigue and weakness, double vision and pills sticking in my throat. It affects the small muscles first (eye and throat) but will end up making everything weak.

Why did the doctor give you the thiamine by IV? I thought IVs were usually used to deliver larger doses of nutrients over a period of time. Thiamine tablets work great for me.

This article has a good definition and description of Refeeding Syndrome: https://www.ncbi.nlm.nih.gov/pmc/ar... syndrome?,whether enterally or parenterally5).

 

[Tammy]

Yes I was going low and slow initially and things were getting better. I had regained so much function except for persisting respiratory weakness. Went from 2000 steps a day to 14000!!!!

What were you going low and slow with initially?