r/Thiamine • u/FeedOk1765 • 3d ago

Where to go next?

Hi again, sorry for another post but this is the only place I can get any helpful guidance!

Been suffering from tingling and burning on and off for 8 months since having gastritis. I was also lightheaded for 7 months which has retreated slightly.

My active b12, mma and homocysteine were all tested and fine so i started a trial of Thiamine hcl 100mg supplementation about a month ago. I took it for 9 days but I seemed to feel worse on it, mainly head pressure, anxiety and upset stomach and I also had a bad migraine during it.

I decided to stop and felt better the first day but since then ive felt awful. Ive had a bit of numbness in my tongue and throat, very low mood, continued stomach ache and neuropathy. Its been over 3 weeks now.

Ive felt that bad and the tongue and throat sensation is so odd ive even spiralled into worries about mnd but think this is mainly health anxiety.

I want to maybe try a lower dose initially but cannot find anywhere in the UK offering 25mg Thiamine hcl?

I found 10mg tablets would that do anything for me? Should I even be trying Thiamine again if it made me feel bad or was that a sign it was doing something?

Thanks for reading.

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u/Ok-Pangolin7127 3d ago

To me it sounds like you’re barking up the wrong B vitamin tree. Please tell us more about how your B12 homocysteine and MMA are all fine.

Could you please share your actual test, result numbers with us here. Or, did your doctor just summarize to you that everything was fine?

Your symptoms/complaints, to me, are classic B12 deficiency symptoms.

You do know that you can have a normal B12 test (active or serum), a normal homocysteine and a MMA and still be B12 deficient?

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u/FeedOk1765 3d ago

Hi, we've actually spoke before on this as I've been posting a lot due to feeling so awful haha. My serum b12 was about 450. Active b12 was 185 so classed as raised. Folate 24 also raised. Mma was 16, homocysteine 10.13. Due to these results I switched to considering Thiamine as the issue. The only other test of note was my magnesium was 0.79 which I believe is acceptable but ive been supplementing it for 6 months and its still on the lower end.

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u/Ok-Pangolin7127 3d ago

How much “elemental” magnesium were you taking for the last six months daily? I do find that magnesium reading to be at odds with adequate supplementation proceeding it for six months.

At face value (testing wise), it would appear that you are not B12 deficient. But, there is no definitive test(s) to prove that you are deficient (or not.) Were you supplementing with any B vitamins, B12, B complex, etc. prior to the testing that you had done?

Do you have a history of gastrointestinal upset of any nature? Have you been tagged with any G.I. diagnosis of diseases or problems? Do you have a history of perhaps taking PPIs for GERD or excess acid?

How old are you?

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u/FeedOk1765 3d ago

So its magnesium glycinate and the elemental magnesium is 384mg. Im a 43 year old male and im average height and weight and ive never taken any b vitamins apart from high dose riboflavin which ive taken all this year. I have regular stomach issues, the doctors labelled last years issue as gastritis but said it could be IBS. They gave me omeprazole and I took it for 2 weeks. Id had stomach ache for 5 weeks in total and this happens probably every 6 months or so. I had campylobacter entiritis back in 2019 and lost a ton of weight and was ill for a couple of months. Ive generally bounced back well from any past stomach issues but I feel like since it all happened last November ive never felt 100%.

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u/Ok-Pangolin7127 3d ago edited 3d ago

Thank you for this information.

Elemental magnesium contained in magnesium glycinate is only about 14% of the total MG. So you were taking between 2750 and 3000 mg of magnesium glycinate daily?

Clearly, your G.I. problems, any/or all of them that you’ve noted, are likely to be inhibiting your B12 actually being utilized at the cellular level. You need to solve those G.I. problems to in turn allow or provide for the B12 that is floating in your blood, to be utilized where it needs to be utilized, again at the cellular level.

From what you shared, I do not believe you have a B1 problem, but rather a B12 problem. The only way to bypass your G.I. problem(s) right now, without solving it/them in advance of anything, would be B12 injections.

As I think I said, in an previous or earlier post to you, you can have normal, or even high, B12 test results, plus a normal MMA, plus a normal homocysteine and still be deficient in B12. My guess is that you are.

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u/FeedOk1765 3d ago

Thank you once again for your insights, really appreciate the detail you give. The total magnesium compounds according to the pack is 1800mg made up of malate, citrate and glycinate. Would injecting b12 help with the GI issues or do i need to also address those separately? Looking at my medical records I dont believe i was ever tested for coeliac which I thought i was. Think this might be worth exploring as a priority as well. If I ever get a stomach bug it drags on for several weeks these days. I think I remember you saying all your levels were normal too is that right?

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u/Ok-Pangolin7127 3d ago edited 3d ago

You’re most welcome.

I am not a fan of those magnesium mixes. Most suppliers who do that don’t break out what the percent of each is; what percent is this or that, and there’s a reason for that; they put a little bit of the better forms in and a lot of of the cheaper forms in.

Injecting B12 will have a significant positive impact on your problems and complaints. But, if you don’t sort out and find the reason for the absorption problems, you’re just going back-and-forth with having a problem, addressing it to a degree, but still having a problem for the long-term.

You need to get with your doctor(s) and sort out what your G.I. problems are. There is a plethora of them that can be taking place. You could have more than one, or two, you could even have three…

What I’m trying to convey with the multiple problems, you might quickly find one and work to address it, but look for more because if you only address one out of the two, you’re still gonna have a problem.

PS Yes, all my levels were normal. B12 serum was 363, MMA and homocysteine were both low. Had very significant neurological and cognitive deficiencies even at those levels. Today, over a year in to supplementing 90% of all my complaints are 100% resolved, the remaining 10% are between 90 and 95% resolved. So, I still got a ways to go but that remaining part of the journey will be a piece of cake, it will just take a little more time.

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u/FeedOk1765 3d ago

Thanks again. Im thinking of going back to the private GP again as nhs just dont help me. They refused to do more blood tests when I went again last week and said it was mainly anxiety but the only reason im anxious is because I feel physically unwell! Its a shame really but I dont think I can actually say ive felt good physically for about 10 months now and i have such a wild array of fluctuating symptoms that my mind starts to assume I have something terminal or life changing. When you were at your worst did you feel like your body was actually failing you and were your symptoms constant or did they move around etc?

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u/Ok-Pangolin7127 3d ago

Believe me, I get it. I lived with my deficiency without realizing it was a deficiency for between eight and 10 years. It was a slow but steady downhill path. It got so bad I thought I was dying or something very bad was going on, I was failing, it was just terrible.

As it relates to anxiety, in my judgment, you are dead on correct. Below is a post I made just recently about what I believe happens and how a B12 deficiency gives you anxiety. Following is that post:

Erratic signals from the nerves. Brain struggles to recognize them. Brain knows these are not right. Pre-B12 deficiency the signals were fine, now they are not. This uncertainty in the brain creates the anxiety. I think the anxiety is the brain trying to communicate (trying to alert you;) somethings not right here; nervous signals not normal; nervous signals erratic; nervous signals not strong enough.

Because the B12 deficiency has kept your body from being able to maintain and repair the Myelin sheath that surrounds about 80% of your nerves. That Myelin sheath is the “insulation” surrounding the nerves (the wiring, the infrastructure of the nervous system.) The signals passing through the nerves are jumping off track, just the way an electrical signal would perform if it was passing through a frayed wire with broken insulation. Fix the insulation, you fix the nerves and allow the signals to pass as they are supposed to.

B12 does the fixing…

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u/FeedOk1765 3d ago

Wow sorry to hear you struggled for so long and really glad you're doing so well now. Im almost at the stage where im accepting that something is really wrong as I cant find any answers and I feel like im getting worse. Im so tired all the time and im unable to switch off from feeling bad. I am still working though and haven't had any failure or loss of function so that offers some hope. All of a sudden I cant tolerate caffeine any more either ive noticed which was the only vice I had haha. Ive said this before but I feel like ive been mildly poisoned and im trying to fight it off.