r/Thiamine

Hello, I'm looking for advice really as to whether I should be pursuing a possible b1 deficiency.

Ive been suffering from dizziness pretty much constantly for the past 6 months which all started shortly after a bad spell of gastritis and a couple of migraines this seemed to cause. I also had a 2 week course of omeprazole.

I had tingling in arms, legs and feet and pins and needles in the night.

This seemed to ease after a couple of months but its now back again along with a general rubbish feeling of fatigue and gloom.

Ive tested my active b12, homocysteine and mma and all were well within normal range. In fact my active b12 and folate were raised.

My magnesium and calcium were also within range.

Is it possible to have b1 deficiency if b12 is normal.

If so are injections my best bet or would tablets work?

Im pretty lost and fed up of feeling terrible when just a few months ago I was very active.

I was convinced it was b12 until I had my tests.

Im also awaiting a cardiac mri as a 24h holter found some tachycardia episodes but thankfully my cardiologist didnt seem too concerned.

Maybe its my heart causing this but trying to explore all options.

Thanks for reading.

Went to the ER for tachycardia episodes that doesn't resolve with resting and I feel hypoglycemic at night and have to eat at night to sustain myself. What can I do to get them to get me a bag of IV Thiamine? The doctor is severely misinformed.

Edit: I got one, but it was only one at 100 mg

Edit edit: check out the comment below for an answer about the hypoglycemic symptoms

As the title says, i doubt the genuinity of benfo being sold near me, but thiamine hcl is available im internstional brands so i trust it.

Anyone with any calculations please help.

I'm 12 days in supplementing with a combo of benfotiamine/hcl. I'm taking a low dose and have seen improvement, but today my health anxiety went crazy and I couldn't stop researching wet beriberi out of fear. I haven't gotten much sleep either. Anyone else experience fearful health anxiety during the early supplementation process after having dry beriberi?

Hi all, I wanted to know if any of you have experienced symptoms similar to mine and whether you were able to make a full recovery without lasting neurological damage.

My symptoms started to creep up early during my pregnancy about a year ago. I started having weird issues like not being able to sense temperature, a lessened sense of pain, unsteady gait. Then over time I developed severe mental health issues like anxiety, panic attacks, and depression to the point that I landed in a mental health unit twice.

I got put on a lot of psych meds and my mental health was relatively under control, but the weird physical symptoms still remained and I had severe brain fog that felt like part of my brain had been turned off. I went to see a neurologist and she didn't find anything conclusive on her tests, other than some reduced functioning on a neuropsych evaluation.

Desperate for answers I started doing my own searching and came across a scientific article about causes of confusion during pregnancy, which listed thiamine deficiency as a possible cause. Since I didn't have anything to lose I started taking thiamine (with cofactors) and instantly I felt like I was slowly starting to wake up from a bad dream. And every day I take it I am starting to feel a tiny bit more like myself again.

I'm going to see my doctor next week to push for more tests and more aggressive treatment, but I wanted to ask you all, have any of you recovered from nearly a year (or longer) of neurological symptoms? How long did it take you to feel better and do you have any lasting damage?

I saw an nhs neurologist today. I normally go private, bu went through the nhs for my mri.

I feel this doctor also works privately. As I told her I inject HCL and B12, as my Genova test showed I’m deficient, she was very encouraging and told me to keep injecting B12 and B1.
I mentioned I’m taking LDN for any inflammation and it’s helping
.

Hello! I'm supplementing 100mg thiamine HCL with magnesium, electrolytes and a b complex right now.
Issue is I have to avoid b-complexes for a while, as I'm trying to test for b12 deficiency and thus can't take any supplements containing b12 before testing as this can inflate results.

My solution is to just take necessary b vitamin cofactors individually because it's extremely hard to find b-complexes without b12 / they're super expensive. But I've seen a lot of conflicting information on what b vitamins actually matter in the b complex, and I'm not trying to buy a supplement for each B vitamin because that's expensive. As of rn my understanding is B2 and B5 are good (in that order of importance respectively).

Please let me know if there's any other b vitamins I should be taking, or if B2 and B5 should hold me down until I can take the whole complex again!

Hi everyone,

I am new to recovering from a B1 deficiency and I hope this is the right community to ask this question.

I went through severe alcohol withdrawals followed by benzo withdrawals and severe malnutrition for around 2.5 years. I also experienced carbon monoxide poisoning during this time. I experienced severe neurological symptoms, delirium, and seizures for around 2.5 years which left me unable to pretty much function.

I received a thiamine infusion at a hospital and they sent me home with directions to take vitamin b1 100mg daily from there. Received the same instructions from multiple hospital visits.

A couple months ago my family doctor sent me for a Plasma Thiamine blood test. When I complained and explained that it’s not a sufficient blood test she refused to send me for the whole blood test instead. I have since fired her and work with a nurse practitioner while I wait for a new doctor. I am completely covered when referred but don’t mind paying out of pocket.

My understanding is that plasma thiamine measures only the small amount of thiamine circulating in the liquid portion of the blood, which can be influenced by recent food intake or supplements, while whole blood thiamine (TDP) measures the active form of thiamine found primarily inside red blood cells. Making it key to measuring deficiency and long-term stores.

Am I accurate here?

I have been working hard on my recovery eating foods high in B1 as well as taking vitamins. I also work with a dietician so the correct test will help us measure progress.

Thanks for any advice!

since I started TTFD, I react so BAD to high histamine food.

One night it was a left over (3-5 days) and last night it was parmesan cheese...

I gets weird leg crawling feelings and nerve pain its crazy... (and high HR...)

If I take a anti-histamine it calms everything, vut I do not sleep super well... IDK if its a paradoxical reaction to the TTFD...

Anyone had that? Will it pass!? how long, when!?

Hello

Thank all of you for the guidance. My health would not be where its at.

I have been treating my b12 deficiency for about 2 months and my b1 for 5 weeks.

Physically I am all healed except some slight feelings of uncoordination but only when doing mtn biking.

My memory is coming back day by day and my mood is improving. I work as an engineer and my snt that energetic but I can force some thinking.

But I still have lingering brain fog and fatigue. It is no longer debilitating but frustrating non the less. Those pf you that have healed how long did that last 20 percent take? Any tips besides just diet and exercise?

I am taking 100 to 200 mg ttfd, 800 benfo and all the co factors. 2 to 3 x b12 injections but I slacked pretty bad for the last 3 weeks.

I just received my package from Germany and I got Benfotiamin 300 mg, I think I'll start cutting them in 4 so I don't get massive wake up symptoms. I'm currently getting Thiamine HCL shots that have been helping my gut issues but I don't want to inject anymore, I don't get bad reactions from it but nothing other than the gut help either.

I'm having a lot of troubles falling asleep and with a lot of health anxiety and feeling of doom as I feel generally very drained after a major PEM crash I had a the end of May. I'm trying to get things slowly to build tolerance as I have dysregulated system.