I've been recommended by my GP and long COVID clinic to try out 400mg B2 riboflavin to treat my weekly migraines. Has anyone else tried this?
I'm also taking: vitamin K2, omega/algae oil, vitamin D, magnesium, and iron (taken at a different time). A lot of these tablets I found on this forum (so thank you!). I also get B12 injections every 10-12 weeks (I don't have pernicious anaemia but it seems to work better for me than tablets). I also make sure to eat a couple of Brazil nuts a day for selenium.
I'm thinking of taking vitamin C and zinc (maybe in an effervescent tablet), Coq10, L-Carnitine, creatine, and perhaps a B complex and folate tablet (if I'm having B12 shots and if I start taking B2, I can imagine it might lead to an imbalance?) Also, are we meant to not have iodine? Or are we meant to have it?
Unfortunately, I've been diagnosed with a bunch of other conditions (Joint hypermobility syndrome, MCAS, POTS, hypertension, sleep apnoea, long COVID syndrome, rosacea, cystic acne, perioral dermatitis, eczema) and I've been feeling dreadful and weak lately, and my skin has been awful, so I'm trying to focus on what I can do to feel better!
Curious to see what other people take and what recommendations you might have
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Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)
Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.
Some people need a bit less than guidelines, some a bit more
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
What are your most recent vitamin D, folate and ferritin levels
How much vitamin D are you taking
Yes when taking B12 it’s recommended on here to also take a daily vitamin B complex
B vitamins best taken after breakfast
Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose and may need 2 per day and/or may need separate methyl folate couple times a week
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-6 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg)
Levothyroxine contains all the iodine you need. Don’t supplement iodine
Hi again, thank you so much for your replies! Since my last post, I sent an e-consult to my GP asking for them to test my folate and asking to go up on my levothyroxine dosage and they booked me a telephone appointment for 4 weeks' time... I'm 63kg so should be on a higher dose, my coeliac test was negative, and I have had my antibodies tested and an ultrasound on my thyroid, all clear. So in the meantime I thought I'd try to make sure I get my supplements all sorted out! So if I take that B complex, I can find a 400mg B2 and take that, too? I didn't realise levothyroxine had iodine in, thank you!! I almost bought salt with iodine in 😆
thanks - I’m just following the GP, Covid clinic, and NICE guidelines about the B2 “ NICE recommend riboflavin (400 mg once a day) as it may be effective in reducing migraine frequency and intensity for some people [NICE, 2021].”. There are also hundreds of research articles on it if anyone was interested in reading about it. I’m on Mercury Pharma as it’s the only one that doesn’t cause a rash. I have had coeliac blood test (twice in my life) before I cut out gluten (as well as allergy testing).
Headaches (at one point for years every 4-6 weeks and then closer to diagnosis (Hashis) multiple times a week) were one of my earliest symptoms, as well as rosacea.
Both resolved entirely when I got close to my full replacement dose of thyroid hormone replacement.
Which is to say, that these are the mandatory vitamins to make optimal: folate, b12, ferritin and d3 (with k). That’s because these all play a part in the complex body and cellular processes that thyroid needs to function. Without those, even a “healthy” thyroid won’t have the environment it needs.
Magnesium is the other “most” of us take.
Selenium comes up a lot.
Zinc… make sure you test your zinc and copper together if supplementing zinc. The level of both is as important as the ratio. Don’t supplement zinc blindly.
The others, others will have opinions on, and there are lots others in the long tail. On my short list is omega 3 and maybe some amino acids.
Iodine is one thing even the smartest people here will have nuanced opinions of. I think it’s less an issue for those who are not on thyroid replacement. But if you’re on Levo, Levo has iodine, in fact 4 iodine molecules! Ie, T4! I think some of the confusion comes in because YES we need iodine. But it’s where you get it from and how much to consider.
But in my personal opinion, and given how expensive it all is, for me and many others, optimizing thyroid corrects so many symptoms, and I am now at the point where I may add others one by one and see if I feel different and importantly watch how it impacts TSH and free t’s.
That’s probably why SD answered your question about vitamins by talking about your thyroid.
When we are under replaced there is a sense of panic becasue we continue to feel so dysfunctional. Stay focused on your TSH, ft4 and ft3. But I’ve answered your question
Hi, that's interesting. I developed rosacea in my 20s (25 years before being diagnosed with Hashi's). Is there a strong link? Last time I looked they believed SIBO was a cause (which makes a lot of sense), and I suppose Hypothyroidism can lead to SIBO. Is that the link or is there something else? Thanks
But from my experience - part of rosacea is genetic predisposition, (for example my mom and dad have had it BUT they are NOT hypo or sibo or any of those things.)
Then I think if that is there, there are two distinct triggers - vascular when it comes to flushing, and inflammation when it comes to the little pimple like dots.
Being hypo exacerbates both of those triggers. Hypo can also include gut issues or histimine reactions that also cause inflammation triggered rosacea flare ups.
That’s probably where the sibo link comes from.
Hormone changes throughout our monthly cycle can also trigger blood vessel dilation issues and inflammation.
On top of it, there’s a mite/bacteria issue, a certain type is at play with rosacea.
So I learned that metrogel (common treatment) inhibits and reduces the bacteria and mites, and therefore reduces the inflammation because there are less of them. But it also doesn’t target any hormonal or histimine causes of the redness.
But soolantra (a newer treatment) kills the mites entirely, AND it also targets inflammation pathways directly .
Personally the metrogel never worked and the soolantra noticeably works overnight esp when I catch a pimple early.
That being said - rosacea is one where it helps to understand the chain reactions of the symptom… as there are a lot of contributing conditions yet they all trace back to a root cause of the vascular or the inflammation. So whatever causes those can trigger what you are already genetically predisposed to.
Also - rosacea for me popped up 8-10 years before diagnosis. Never connected it until the symptoms kept stacking up : )
For me it flares with the estrogen surge post ovulation through day 1 of my period.
It was one of my earliest symptoms… and one of the earliest to largely resolve (yah!) except for one dot that showed up in the same place every month… tip of the nose of course! And… THAT (I think) I have squashed with HRT (progesterone only right now, still in perimenopause) to manage estrogen dominance (as I’ve theorized, still testing). Currently - no more “Rudolph the red nosed reindeer”… I hope it sticks!
Personal experience for me is that taking a b complex gave me headaches and worst fatigue, whether it was 50mg or 20mg. I managed to find, after 10 years of different trials the sweet spot of taking very specific combinations then not taking anything but still get triggered on occassion with tingling due to too much b6 or brain spark by too much folic acid. The only b vitamins I sweem ok with in abundance is b12, b1, b5. The others are quite potent in causing one problem or the other. They are needed in micro doses.
- Biotin actually causes me migraines.
- Folic acid gives me tingling like b6 (as methylated or non methylated form)
- Riboflavin seems ok but gives me yellow wee
- niacin at 50mg is ok with mininal flush but too often causes chronic fatigue and depression, likely due to using up all my methyl groups
I now eat slim fast meal replacement bars nearly every day. Not for slimming. For the perfect combibation if daily vitamins. If i take 2 a day on 2 consecutive days I get headaches, insomnia. If I miss 2 days my fatigue starts creeping back. Its a fine balance.
Conclusion
Everything you read here or elesewhere is not the answer to what youe body needs. You literally have to experiment to find the opimised harmony of amounts. Keep a diary.
Thank you - the GP is the clinical lead for Long Covid in the South West, and it is a NICE guideline “NICE recommend riboflavin (400 mg once a day) as it may be effective in reducing migraine frequency and intensity for some people [NICE, 2021].” but he doesn’t have any interest in hypothyroidism which is why I tried to ask here about it. My migraines are so debilitating and I’ve had them since a child (before my thyroid got messed up) so I’m hoping to find something that helps. Thank you for sharing your experience with the B vitamins. My vitamin D levels are also very high so it’s interesting if it can deplete B vitamins, I’ll look into this!
My interest was peaked by your early mention of Long Covid….which I have had for nearly 5 years now with disabilitating dysautonomia ( from tilt table test mine is ‘postural hypotension not Pots’) and much longer diagnosis of hypothyroidism, diabetes and fibromyalgia. I was curious as to where the research about taking the high dose Riboflavin came from, as I have never come across it, only use of high dose B1 and even that derived from much earlier research by Lonsdale…which not surprising I tried without result.
I had Covid and nearly died in 2020 - then my thyroid got worse after that and I needed levothyroxine then. There are hundreds of research articles about B2, and the NICE guidelines about the B2 state “ NICE recommend riboflavin (400 mg once a day) as it may be effective in reducing migraine frequency and intensity for some people [NICE, 2021].”.
I can copy and paste the relevant research articles in if you’re interested in reading about it
UK charities like the migraine trust also recommend 400mg of B2.
The GP who recommended I take it is a long COVID specialist and is the clinical lead for Long Covid NHS in South West England. But he doesn’t have any special interest in hypothyroidism, which is why I thought I’d ask here, but
Fortunately I do not get migraines so have probably not gone that Long Covid ‘rabbit hole’ looking for solutions, but I see Riboflavin seems to have been mentioned in relation to Covid 19 itself rather than Long Covid. I have taken B Complex supplements for many years as per thyroid protocol recommended in this forum so I’ve no reason to believe I could be deficient in any of them, but continued LC makes one open to suggestions!
long covid oh how terrible 5 years ! i'm coming up 16 months and my GP said it usually settles after 2 years. i still feel messed up and hard to find the wherewithal to go on, but 5 years is awful, so sorry and hope you recover fully.
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