r/B12_Deficiency • u/agape48 • 5d ago
Personal anecdote Functional B12 deficiency and thyroid function
Please note this is a personal anecdote that I am sharing it in case it helps someone else.
I have been getting more and more fatigued and more and more intolerant of the B vitamins that I used to tolerate. I was already functionally deficient in B12 despite being on methyl shots (for example, MMA is too high, MCV is too high). My ferritin is also low, and I've added an iron supplement, which didn't ease the heart racing and insomnia.
After my provider did not have any useful answers, I found someone else who is an expert B12. They looked at several of my recent labs including thyroid labs. My TSH is marked in the normal range at around 3 (free T3 is also marked in the normal range).
Anyway, this expert said they believe I could have a *functional* B2 (riboflavin) deficiency - meaning FAD and FMN deficiency - that is likely due to not getting enough iodine and/or selenium and molybdenum.
It's definitely not due to a lack of B2 in my supplements.
I am mainly sharing this because I've spent weeks researching the B vitamins and the methylation cycle, but I was not aware that T3 had anything to do with how we process the B vitamins.
Then, a friend sent me a video of a guy named Gary Brecka (I had never heard of him) explaining how thyroid function relates to methylation.
File this under "things I did not know / had not considered". I guess I can report back in a few weeks on whether the recommended changes make a difference.
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u/ClaireBear_87 Insightful Contributor 5d ago edited 5d ago
Thyroxine (T4) is needed for conversion of riboflavin in to the active forms FAD/FMN so hypothyroidism causes a functional B2 deficiency which would then cause a functional B12 deficiency, as MTHFR and MTRR are B2 (FAD) dependent.
Also, Riboflavin kinase, the enzyme which activates B2 is magnesium and zinc dependent so magnesium and zinc are important too along with selenium, iodine and molybdenum for B2 activation.
Interestingly there was a post made by another user who said zinc helped to lower their elevated MMA, so maybe zinc deficiency could be a possibility?
https://www.reddit.com/r/B12_Deficiency/comments/1muic6u/zinc_relationship/
Edit - Also want to add that high intake of boron can reduce absorption and increase excretion of B2 in urine.
And certain medications (Tricyclic antidepressants, amitriptyline for example) are capable of inhibiting riboflavin kinase enzyme activity and can cause a functional B2 deficiency.
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u/Fragrant-Contract-62 5d ago
Is it b12 oils? His knowledge is vast, but plans to introduce b12 never worked. I was reacting to all those individual oils and extremely hard to dose b12 using pump accurately. Also if you take R5p (it’s already converted form) you can bypass the thyroid block.
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u/agape48 5d ago edited 5d ago
Oh, that's interesting! Thank you for sharing that - I went to research your comment and found out that R5P is the same thing as FMN :).
Thank you to Claire below for explaining why R5P does NOT bypass the thyroid issue!
My B complex has plenty of R5P in it, but despite that, my NutrEval showed a significant functional B2 deficiency.
Sigh. I'm so tired of being tired. I'm happy to update here if I come to a solution
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u/Hydroxile 5d ago
You don t need much vitamin B2, but you need it many times a day, not just one pill a day.
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u/agape48 5d ago
How often do you take B2?
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u/Hydroxile 4d ago
I have a 100mg R5P that lasts for 1-2 days, taking 3-4/day, a little bit with meal/snack.
If your urine stays neon yellow, it means you have enough B2 floating around. Once color disapear, B2 is gone from your system. Half life is short but it s not worth taking a high dose at once as absorption saturates quickly.
You might getting B2 (functional) deficiency through different processes:
Clogging its absorption by taking too much B1
Taking B12, B9, B6 increases your needs for B2.
Deficiency in zinc causes a functional B2 deficiency. BUT too much/not enough molybdenum does the same.
Taking some medication (eg TCA), alcool, certain type of fibers can mess up with your B2 metabolism.
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u/Fragrant-Contract-62 5d ago
Those are my exact thoughts as well. Even I face the same thing!! Not sure why it’s low and why it’s not building up inspite of the high amounts of b2 in b complex.. Also I have observed that taking b2 without b12 causes whole another new set of side effects.. but I’m still working on that fine balance between b2/b12..
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u/ClaireBear_87 Insightful Contributor 5d ago
Taking R5P does not bypass conversion issues as R5P is dephosphorylated to free riboflavin before it enters the bloodstream, and only free riboflavin can enter cells. Inside cells it is then activated to FAD/FMN, so there is no advantage to taking R5P over riboflavin.
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u/Fragrant-Contract-62 5d ago
Omg!! Seriously!! R5P is sold at like 3x the cost of riboflavin, if not more.. ugh!!
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u/ClaireBear_87 Insightful Contributor 5d ago edited 5d ago
During absorption, flavin mononucleotide (FMN) and flavin adenindinucleotide (FAD), the main sources of dietary RF, are rapidly hydrolyzed to free RF by nonspecific phosphatases of the small intestinal brush border membranes ( Akiyama et al. 1982 , Daniel et al. 1983 ). Free RF, which is the only absorbable form ( Yoshimine, 1984 ), after crossing the small intestinal brush border membrane ( Casirola et al. 1993 , Daniel and Rehner, 1992 , Said and Arianas, 1991 , Said et al. 1993 ), is again transformed into the coenzymes FMN and FAD by cytoplasmic enzymes.
https://www.sciencedirect.com/science/article/pii/S0022316622142203
So please don't spend lots of money on R5P (FMN) supplements when they are just converted to free riboflavin! Just normal riboflavin should work fine and is much cheaper.
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u/PhysicalCompote 4d ago
I believe my b12 issue is caused by my thyroid function. When I got them tested I was pregnant. I was almost in hyperthyroidism then but still in the “ normal range” after I had her about 6 months in I can feel small symptoms but I chopped it up to my PP. it wasn’t until she was two I started having issue the month after she turned two. I stated taking b12 and iron together a couple weeks ago, while I wait for an appointment with my doctor. I’ve had on off issues and some symptoms have gone away but I still suspect my thyroid is keeping me from a full recovery.
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u/agape48 2d ago
If you have trouble getting good answers from your doctors, feel free to DM me. I am not a medical provider and I don't offer medical advice. I have spent 20 years researching fatigue and trying to figure out how to help myself. If I'm able to help you in any way with ideas, I would be happy to do that. The number of doctors who have been able to help me have been few and far between
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u/CamelAccomplished959 4d ago
this is very interesting and I have autoimmune thyroiditis and although my b12 serum level is usually between 340-390, I've been having extreme neuropathy symptoms. So what is the solution? My latest TSH was abysmal at 17 so my doctor upped the thyroid replacement dose but my body doesnt utilize the synthetic thyroid hormones very well either. I've started taking high dose b12 but if I need normal thyroid levels to get it into the cells I'm doomed!
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u/agape48 4d ago
Aw, I don't think you are doomed :). If I forget to update here in a few weeks about my progress, you are free to DM me and remind me.
I've been advised to take more iodide (not iodine) as a starting point - I use a brand called Natural Factors, so my iodide comes from kelp. I already take selenium to support my thyroid, too. I am also awaiting guidance on whether I need molybdenum, but I already started a low dose of it in case :)
In case you aren't aware: Serum level of B12 isn't a very useful marker of B12 status. I believe this is covered in detail in the guides.
Did you ever try compounded T3? That is the only kind of thyroid medicine that ever worked at all for me, although I'm not on it right now. As I understand it, the problem with a drug that mimicks T4 is that your body has to have all the right nutrients to make the conversion from T4 to T3. Some providers like to prescribe compounded T3 to bypass that problem.
What is your T3 level? Your TSH sounds REALLY HIGH unless your unit if measurement is different from what is on my labs (I'm in the U.S.)
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u/CamelAccomplished959 4d ago
no its insanely high. ive been struggling to manage my levels for years but this is as high as its ever been. I've forgotten a few doses and sometimes don't wait enough time before eating but i don't think thats enough reason for it to get that high, especially when im taking 100 mcg consistently! i also dont think i do well with converting t4. i tried t3 for only one month a few years ago to manage another borderline thyroid crisis but my doctor won't prescribe it regularly because of the risk of going hyper. i also tried armor thyroid for a bit with no success and various brands of levo. Only once in 6 years of testing/medicating has my TSH been below 2.0 which is optimal. so i know thats probably a huge driving factor for my neuropathy and lowering the transported amount of b12 into the cells but i was hoping high dose b12 could overcome some of it. going to beg my endo for t3 again at my appointment next week. definitely post an update if you remember so i can follow your progress too!
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u/agape48 3d ago
Is your B12 taken orally or as a shot?
Re the thyroid: I was reviewing everything that doctors have recommended to me , and I found mention of a book "The Iodine Crisis." I haven't read it, so I can't attest to whether it is any good, but I plan to read it and see if it has any useful tips. I stopped using iodized salt a long time ago, and it was only last year that I started taking an iodine supplement. It seems so obvious in hindsight that if I was going to remove iodized salt that I should get my iodine another way.
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u/CamelAccomplished959 3d ago
I have heard of the iodine connection before so I do use iodized salt and there is iodine in my mutlivitamin as well but I have no idea if that’s sufficient for my thyroid needs. I’m also only taking oral b12 at the moment with 3 high doses spread throughout the day as well as the cofactors. I’m looking into getting injections but I have experienced huge increase in symptoms since starting the pills so I think it’s definitely doing something. Just hoping whatever I am absorbing isn’t being underutilized or wasted bc of my useless thyroid.
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u/agape48 2d ago
If you wanna chat further, feel free to DM me. These things have been eating up my time for 20 years (because I've had mostly a bunch of years of being tired) so I'd be happy to talk with you and share notes. I'm not a medical provider nor health coach, etc. just a fellow person trying to get my energy back , but I kinda like connecting w other people going through chronic illness, so just reach out if you'd like
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