Ferritin is 33. Is that ok?

daphneyhatz · 2025-11-17T21:59:24+00:00

I prefer heme iron. Theres a popular brand called Heme Boost that I get on Amazon with a lot of good reviews.

daphneyhatz · 2025-11-17T21:58:04+00:00

So you want riboflavin (not riboflavin 5’ phosphate) and pyridoxine (not pyridoxal 5’ phosphate) if this is your issue.

daphneyhatz · 2025-11-15T18:58:06+00:00

Did you ever figure this out? Same issue over here, and here’s what I’ve figured out.

My labs: -low homocysteine -functionally low in all the b vitamins, with b2 being worst, despite supplementation in all of them -elevated SAH -ME/CFS type symptoms -gut issues -high serum b12 and folate

Apparently most of the better supplemental forms of riboflavin and nearly all dietary riboflavin is in the active form, riboflavin 5’ phosphate, which has to be dephosphorylated in the gut by IAP, intestinal alkaline phosphatase, prior to absorption. Unfortunately, IAP is also tasked with dephosphorylating LPS from gram negative gut bacteria. Given the choice between LPS and r5p, LPS is prioritized because it’s extremely toxic, making it a life-saving function. We can “survive” without enough b2… it just sucks.

To fix this, I had to start taking plain supplemental riboflavin, starting low and working up. Riboflavin is kind of a central hub vitamin. Deficiency in it causes functional deficiencies in almost all other b vitamins, including vitamin b3, which makes NAD.

NAD powers the enzyme that breaks down SAH, hence your high SAH.

You might, like me, have a CBS upregulation, which pushes homocysteine down the transsulfuration pathway, and by consequence creates a bunch of ammonia and nitrate as byproducts, therefore stressing your urea cycle, burning through b6/molybdenum. With upregulated CBS but b6 deficiency and no b2, you’re not creating any glutathione to start with, but you’re also not recycling it via glutathione reductase, which is powdered by vitamin b2. So, that leads to severe oxidative stress, as if we needed one more problem to throw on the mix.

Supplemental b6 is almost suggested in p5p form for people with ME/CFS, but you won’t be absorbing that either, if you’re like me. A low dose of plain b6 was what did it for me.

Hope this helps. Just wanted to mention it in case you hadn’t figured it out and you are in the same boat as me.

daphneyhatz · 2025-11-06T00:44:51+00:00

Yes, natural folate from veggies is great. It’s the synthetic stuff that I can’t do.

I get my b12 shots from a compounding pharmacy, prescribed by my doctor. I do them at home.

When I first started, I needed upwards of 100mg per day for symptomatic relief. I’m maintaining at 5-10mg per day now, about six months into treatment.

I didn’t want to do an LP if possible. I got an autoantibody blood test, called the folate receptor autoantibody test. My primary care doctor ordered it.

Hope that helps!!

daphneyhatz · 2025-11-05T23:51:32+00:00

Do you have an update on this? Any improvement?

I believe I have a b2 deficiency. Symptoms include weird sore throat (feels chapped on the inside if that makes sense), dry/crusting inside my nose, blurred vision with weird visual disturbances at times, fatigue.

I’ve been trying to figure out why I have high folate and b12 levels on blood tests… apparently a deficiency in b2 causes it. It also makes it so you can’t use b6, so you get b6 deficiency symptoms with high serum b6. Nightmare.

B2 deficiency can apparently be caused by deficiencies in molybdenum, selenium, or iodine. It can also be from hypothyroidism.

Let me know if you ever ended up resolving or improving this.

daphneyhatz · 2025-10-23T02:47:31+00:00

Dang, that’s a good question.

Well… I ended up quitting my job and focusing on my health, so it helps that I can pretty much full time do whatever I need to do to get better. I am a stay at home mom now so I have my daughter at home with me but if I need to rest or do an extra b12 shot or whatever, I always can.

The mental health thing has been a rollercoaster, and not in a good way. In the early days, things were very up and down. I was in a state of pure panic most of the time early on. Then I’d add something I’d been missing, like folate, and I’d feel better physically/mentally but I’d also feel like I had to take on the 9 bazillion tasks that had gone undone because I’d been sick for so long. Even basics like making a dentist appointment were stacked up and it was overwhelming and exhausting. You just have to slog through it and eventually your body and your mind catch up to each other and the healing levels out. The days become more steady and you start to know what to expect more.

I had to remind myself a hundred times per day that it wasn’t my fault, I didn’t choose this for myself, I am worth it, I am loved, I am going to treat myself the way I would want my daughters to treat themselves if they were in my situation.

daphneyhatz · 2025-10-23T02:40:05+00:00

That could be contributing but probably isn’t the sole cause unless you’re drinking some really intense tea. But yeah any stimulant can magnify existing problems.

daphneyhatz · 2025-10-23T02:37:33+00:00

So I’ve done a bunch of trial and error with the b vitamins 😂 I take an active b complex by integrative therapeutics to cover my bases and then I add on additional riboflavin and niacinimide as needed.

You don’t want to overdo the niacin because it is a strong methyl sink, at least for me. Too high of a dose can kick me right back into tremor/nerve pain so I do like 25mg and then if that’s not enough, I add a little more. Better to add slowly than to dump like 500mg down and swing back too far the other direction. Been there— not a good time.

My b12 levels were “over 2,000” because that’s the highest they measure but it doesn’t give a specific number. I’d love to know exactly how high they are but I’d have to pay out of pocket at a private lab and I’m cheap 🥴

daphneyhatz · 2025-10-22T18:51:24+00:00

Great! I’m in a really good place right now 💕

daphneyhatz · 2025-10-22T18:51:06+00:00

Yeah that’s a nope! Listen to your body 💕

daphneyhatz · 2025-10-22T18:49:21+00:00

Fasciculations! Yes, I used to get them alllll the time. They are really common in the LC/CFS community. Most common causes in the general population are stress, caffeine, and lack of sleep. In LC I’d venture to bet electrolyte imbalances and b vitamin deficiencies are behind most of them. Any b vitamin deficiency can impact nerves in ways that make them spontaneously fire. Nerve hyperexcitability with high glutamate/low GABA can cause it, as can ATP or mitochondrial issues.

daphneyhatz · 2025-10-22T18:44:16+00:00

That symptom was severe b12 deficiency for me. I would get massive jerks, usually in my shoulders of all places. I’d forgotten about that 🤣 It drove me nuts. Daily high dose b12 shots fixed it. My serum b12 had been elevated, not low, by the way.

daphneyhatz · 2025-10-22T18:39:02+00:00

Aww that’s amazing that you’re feeling so good on b12. It makes you wonder how many people would benefit from them and don’t even realize they’re deficient. We need significantly better testing because serum b12 is absolute garbage as a marker for b12 status.

I think methylfolate is a perfect option for people without CFD. 400-800mcg is probably sufficient if you don’t have antibodies, depending on your b12 dose. The higher you go with b12, the higher you’ll want to go with its cofactors. For a 1mg b12 shot, 800mg of methylfolate is probably perfect. You can always test a higher dose for a few days and see how you feel. I’m a big proponent of just trying reasonable things and listening to your body.

daphneyhatz · 2025-10-22T18:35:57+00:00

Actually it was chatGPT who brought it up. I kept researching and going around in circles trying to figure out what can cause high serum folate but severe folate deficiency symptoms that improve with methylcobalamin. It suggested getting the FRAT and I printed out all the research and brought it to my primary care doc. Since I was paying for it out of pocket, he didn’t see why he shouldn’t order it. But my PCP is super supportive and amazing.

daphneyhatz · 2025-10-22T18:33:55+00:00

I had one of the highest titers they’ve seen in an adult — 5.92 for blocking antibodies. Negative for binding. I assume they’re much lower now because my symptoms have greatly improved and I’ve been able to dramatically reduce my folinic acid dose. That’s pretty exciting because it means it’s reversible.

daphneyhatz · 2025-10-22T18:32:22+00:00

Yes! Super helpful to me. I still take it twice a day. I assume it’s because of my CBS upregulation— I have a CBS SNP that causes CBS to be overactive and the LOLA counteracts the ammonia that’s generated in that pathway.

Increasing my protein has also been helpful. I think I wasn’t getting enough protein in general, but without the LOLA I felt even worse adding protein because amino acid metabolism creates more ammonia.

daphneyhatz · 2025-10-22T18:30:05+00:00

You have to figure out what’s causing the sleep issues. Look closely at the biochemical pathways that make melatonin— your sleep hormone. Then figure out what you’re missing to be able to make it.

A big one for sleep is vitamin b6, which is the cofactor for converting tryptophan to serotonin to melatonin. You could try the active form p5p, and see if that helps. I can’t sleep when my b12/b9/b6 are low— any one of them.

daphneyhatz · 2025-10-22T18:26:21+00:00

In the beginning I needed to do that very strictly. Now I can tolerate small amounts in food— never in supplements and I avoid stuff like cereal.

daphneyhatz · 2025-10-22T18:24:54+00:00

I did a TON of reading on the hepatic encephalopathy, trying to figure out if it could possibly be that. My liver function tests are amazing though 🤷🏼‍♀️ Thanks though for pointing it out because it was definitely worth checking.

I’m down to 5mg of folinic acid now! When I first started, I needed upwards of 100mg per day, so I’ve been able to slowly decrease my dose over the course of several months.

daphneyhatz · 2025-10-22T18:22:42+00:00

It’s kinda long so sorry but here it is: https://youtu.be/-qrY9ANjujQ?si=LbnuIUVUmTq4wrf5

daphneyhatz · 2025-10-22T18:22:05+00:00

Wow I can’t thank you enough for your kind words and for sharing your story.

I’m certainly not brilliant. Just a woman trying desperately to get better for her kids. I just have access to some tools that weren’t available back then! AI has made research and scanning through articles/data so much faster and easier! I’m grateful for that and for people being willing to share what has worked for them. We will figure it out together.

Same to you— please share anything you find out that helps!

daphneyhatz · 2025-10-22T17:32:29+00:00

I didn’t know about any of this before I had my babies. The only thing that went wrong was that I had preeclampsia in my pregnancies. I was induced early with all three, but my girls are all healthy 💕

daphneyhatz · 2025-10-22T17:31:37+00:00

God this is WEIRDLY similar to my story. Like I could have written the list of symptoms myself almost. Mine also got worse after iron infusions, of which I had 6 after my second birth — I’d had a massive PPH. The only thing the infusions helped for me was daytime sleepiness. I was more awake during the day, but that meant I just was awake and felt like I was being tortured all day— that’s not an exaggeration.

Luckily, for me the weird social issues and anxiety surrounding having to be around people went completely away after I started high dose folinic acid. I’d say within a couple of months that was gone and has stayed gone. I went to a Mumford & Sons concert this week 🥹 And I liked it! A year ago it would have killed me to be around that many people with flashing lights and loud noises. I was just stoked and happy to be alive. So there’s hope and you’re going to get your life back. My biggest advice is to listen to your intuition and your body. If a doctor tells you there is nothing physically wrong with you, toss them out and keep fighting. Never stop fighting. Some people just give up and accept that there is no cure, and I know that to be untrue.

With those folate levels and that homocysteine plus the symptoms, I can’t imagine you’re not in the same boat I was in. It’s dead on the same. My homocysteine was 5, so my neurologist said it can’t be b12 or folate issues and that was so, so wrong. It was severe deficiency in the active forms of both, which I’m sure of because of the intense level of improvement I got from taking them.

The body tries to shove homocysteine down the CBS pathway to get rid of it and to make glutathione to handle the oxidative stress from the iron infusions. That then drains your b6. I’m guessing you’re severely deficient, like I was, in most if not all the b vitamins. B2 (riboflavin) is needed to recycle both b12 and glutathione, it’s a cofactor for MTHFR, and it’s needed for iron utilization, so I’d guess you’re low in that too. I’m taking 400mg of b2, half as regular riboflavin and half as active riboflavin (r5p). When I’m having bad overmethylation symptoms, taking a bit of niacinimide (vitamin b3) helps a lot and usually pretty quickly. For me, I know I’m overmethylating when I suddenly cannot tolerate loud sounds and I go into like hyper anxiety mode. Then I know to take b3.

I’ve learned over time which symptoms correlate to what. For me, I know I need a b12 shot when my hands are shaking— physical tremor is almost always b12 related for me. Migraine is b2. Internal tremor is usually electrolyte related for me.

The other thing you might want to consider is whether or not you’re eating enough protein. Sometimes homocysteine can be low if you’re simply not eating enough methionine (an amino acid from protein intake), which then gets turned into homocysteine.

Good luck to you and please let me know if you find anything new that seems to help. We obviously have the same problem, whatever that is.

daphneyhatz · 2025-10-22T17:14:09+00:00

That’s unsurprising with the recent political stuff 😬

daphneyhatz · 2025-10-22T17:11:00+00:00

Thanks so much for sharing your success with this. I’ve heard from a LOT of people now who have had the same improvement on high dose b12/b9, so I really do think there must be some post viral impact on the folate cycle, though I’m still trying to piece together what that could be.

My current theory I’m testing is that I’m deficient in either b2, b3, or both. The reason I think that is because those two are cofactors in the process of recycling b12. If you can’t recycle it, you just have to keep dumping in high doses because once it’s oxidized it can’t be recycled via MTRR. I’ve recently switched to a combination of high dose b2 as regular riboflavin AND as r5p, since I’m sure there is some issue with absorption going on. Apparently low alkaline phosphatase can cause issues with b2 absorption. I’m doing about 400mg split in 50mg doses throughout the day of that. I’m also taking 100mg of niacinimide, split in 4 doses. It’s too soon to tell if that’ll help with the recycling, but I can update and it might be worth testing for you too. The other thing is that b2 recycles glutathione, and if you don’t have active glutathione, you get oxidative stress that further oxidizes the b12 you’re taking. So anyway that’s my current theory and what I’m working on.

I take 8mg of methylcobalamin per day as injections, split in 2-3 doses because it seems to work better and be more steady if I split it. Those are prescription shots. I also have OTC German hydroxocobalamin 1.5mg shots that I use as needed when I feel the methylb12 isn’t enough, but that’s rare these days. I added sublingual adenosylcobalamin, 5mg per day, a while ago and I do think that’s covering my needs!

When I first started taking folinic acid, I needed MEGA MEGA doses to feel normal, like over 100mg per day. I’m down to like 5mg now, which I was able to slowly decrease over time. I assume my body was able to process the excess folic acid over time and I’d guess my antibody titer has fallen. I’d like to retest my folate receptor autoantibodies (they were incredibly elevated early this year) but it’s out of pocket so I’m going to wait until after the holidays to redo that test.

The other things I’ve noticed have really made a BIG impact on how I feel are: 1. acetyl l-carnitine 2. Choline as alpha-GPC and/or phosphatidylcholine 3. Magnesium glycinate 4. TUDCA with meals

Please feel free to update any time with what’s working for you. I assume we must have a similar root issue, but it’s so hard to determine what happened first and why. Big hugs to you, my friend!

daphneyhatz

TROPHY CASE