Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Could my Methyl B vitamins have caused my symptoms?

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Konflict, Feb 21, 2017.

  1. Konflict

    Konflict Senior Member

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    Beginning of November 2016 I started taking 800mcg Metafolin, 5000mcg Methylcobalamin, 33mg P5P, 50mg riboflavin, 400 iU vitamin E mixed tocopherols, and 1000mg vitamin C. I had been taking a regular B complex (metagenics vessel care) but decided to try some bioactive forms to try and get my energy up and ease my slight brain fog. *Note, I took these without knowing if I have an MTHFR mutation (not sure if this matters, not very knowledgeable on methylation).

    After 2 weeks into the new regimen I started getting VERY tired, as well as a decreased appreciate and weight loss. I thought it was the flu and kept taking the vitamins. The first week of December I stopped taking the vitamins and felt instantly better, but with a few new side effects: insomnia, constipation, less sympathetic (more aggressive), slight head pressure.

    After a few weeks I decided to try a low carb paleo diet. Mid January I "crashed" with even worse symptoms that have not gone away and continue to get worse, these include: severe joint instability, joint/bone pain and cracking, worsening insomnia and constipation, excessive urination, total body dehydration, fat/water weight loss, acne, heightened sense of hearing and smelling, always hungry, decreased body temperature, thin dry skin, anxiety, depression. It feels as if I have tendinitis and osteoarthritis throughout my body.

    My blood work has kept coming back "normal" according to my doctor and not even he can figure out what's going on. I suspected low estrogen from the vitamin E (binds to estrogen receptor) but the blood test was only slightly low. I have been searching the Internet for hours a day trying to find out what I did to myself, and came upon the side effects of methylated vitamins. Maybe I caused an imbalance somewhere that hasn't stabilized?

    I'm frightened because I have declined drastically in just over a month and can't figure this out. I caretake for my mom and now both her and I suffer from whatever I've done to myself. Any advice or insight into this situation would be extremely appreciated. I will post the blood work that I have done throughout the last few months.
     
  2. arewenearlythereyet

    arewenearlythereyet Senior Member

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    Did you slowly increase the dose of the b vits or just go for it? It took me 6 months of small increments every 2-3 weeks to get up to a dose that improved my symptoms (10000 mcg mB12 and 1200mcg methyl folate). I started on 1000 mcg of b12. There is a lot of variation amongst members on how much they can or can't take at the start and some crash even with a small amount. some people get on better with hydroxy form of b12 or a combination of methyl and adenosyl. There are also key co factors that are needed e.g. Potassium and magnesium. Some of the symptoms you describe after you stopped taking the supplements sound like some of my folate and b12 deficiency symptoms so it's possible that the chopping and changing is having an effect?

    I would reduce your doseage and go low and slow if you decide to resume. I also found that splitting the folate dose into 3 parts during the day worked better than all in one. This was based on a recommendation by Fredd to compensate for what he called its "half life". B2 and b6 are similar in this respect I believe.
     
  3. Konflict

    Konflict Senior Member

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    Labs from 12/13/16:
    Testosterone, Free: 49.6 pg/mL (46.0 - 224.0 pg/mL)
    Testosterone: 295.20 NG/dL (175 - 781 NG/dL)
    T3, Free: 3.88 PG/mL (2.5 - 3.9 PG/mL)
    TSH: 0.96 uIu/mL (0.34 - 5.60 uIu/mL)
    Vitamin B-12: > 1500 PG/mL (200 - 914 PG/mL)
    Vitamin D3: 43 ng/mL (30 - 100 ng/mL)
    Vitamin D2: < 4 ng/mL

    Labs from 1/24/17:
    TSH: 2.75 uIu/mL (0.34 - 5.60 uIu/mL)
    T3 Free: 3.55 PG/mL (2.5 - 3.9 PG/mL)
    DHEA: 213.6 uG/dL (5 - 690 uG/dL)
    Total Estrogens: 88 pg/mL (60 - 190 pg/mL)
    Estradiol: 18 PG/mL (<40 pg/mL)
    Free Testosterone: 62.7 pg/mL (46.0 - 224.0 pg/mL)
    Testosterone: 341.27 NG/dL (175 - 781 NG/dL)
    Vitamin D3: 45 ng/mL (30 - 100 ng/mL)
    Prolactin: 10.4 NG/mL (2.6 - 13.1 NG/mL)
    Glucose: 101 MG/dl (70 - 140 MG/dL)

    Sodium: 136 MMOL/L. (35 - 143 MMOL/L)
    Potassium: 4.2 MMOL/L. (3.6 - 5.1 MMOL/L)
    Chloride: 99 MMOL/L. (98 - 107 MMOL/L)
    C02: 30 MMOL/L. (22 - 30 MMOL/L)
    BUN: 8 MG/dL. (7.0 - 21.0 MG/dL)
    Creatinine: 0.8 MG/dL. ( 0.6 - 1.2 MG/dL)

    Labs from 2/6/17:
    Cortisol - 11.22 UG/dL (6.7 - 22.6 UG/dL)
    Lactate Dehydrogenase - 114 IU/L (98 - 192 IU/L)
    C-REACTIVE PROTEIN,HIGH SENSIT - 0.05 MG/dL (0.0 - 0.7 MG/dL)
    Sedimentation rate Automated - 2 MM/HR (0 - 15 MM/HR)
    LYME AB IGG - NEGATIVE
    LYME AB IGM - NEGATIVE
    Rheumatoid Factor < 7 IU/mL < 14 IU/mL

    Labs from 2/15/17:
    Blood sodium: 139 mmol/L (135-143 mmol/L)
    Urine sodium: 16 mmol/L (28-272 mmol/L). - LOW!!!
     
  4. arewenearlythereyet

    arewenearlythereyet Senior Member

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    Blood tests for this sort of thing are a bit limited, but it would be good for you to test for folate as well as vitamin b12
     
  5. Konflict

    Konflict Senior Member

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    The folate and b6 levels were basically the same dosage when I switched products (but changed to the bioavailable forms), but the riboflavin went from 5mg to 50mg and the b12 went from 1000mcg to 5000mcg.

    I feel I am losing all my electrolytes due to the excessive urination, no matter how little or how much water I drink it just keeps coming out out me....it's always the same pale yellow color, never clear or overly dark. Also it's very foamy. I have been supplementing with small dose balanced electrolyte liquid in my water, and adding a few extra tsp of sea salt to my drinks but no change in any symptoms.

    If I don't correct this would these symptoms just keep getting worse? I'm not experienced in Methylation or MTHFR, I just was trying a new kind of vitamin which I thought would give me more energy throughout the day. I feel like I possibly crashed my serotonin and cortisol levels somehow.

    I had my b12 tested back in December but they didn't give an actual number, just that it was high and not below range. I'm planning on seeing a naturopath I used to see a few years ago, hoping she can prescribe me some tests so I don't have to pay out of pocket.....my current insurance is very tight on giving many tests.
     
  6. Paralee

    Paralee Senior Member

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    I'll just say something about B6 @Konflict , be vewy careful. I don't see where you had it checked but I had B6 toxicity, it was 4-5 times the RDA and my muscles and joints were in agony. It's more than just a regular B vitamin. I need to say though, that I had Cipro toxicity too, and the symptoms can be the same. But I can tell a difference now that I've had my B6 back down for a while. Really, some people can take gobs of it but some of us can't and even P5P can do damage.
    Also, what time a day was your cortisol taken?

    Some people have a hard time with high Free T3, some don't. Your serum sodium looks better on the last one, I didn't know your urine sodium had to be a certain amount if your serum was ok, I'll have to look into this.
     
  7. arewenearlythereyet

    arewenearlythereyet Senior Member

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    That seems to be jumping up the dose quite fast. One thing I found is that the b12 oils gave a smoother ride than the sublinguals. There is a whole thread on b12 subdermal oils but it is a long read. This may help reduce some of the ups and downs of folate and b12 deficiency symptoms. You also don't mention supplementing with magnesium potassium or Carnitine? There are quite a few threads on methylation. it sounds like you went to fast? Perhaps check that you have all bases covered as far as the co factors?
     
    Paralee likes this.
  8. Basilico

    Basilico Florida

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    I think that many of your symptoms could be related to the supplements, but it's hard to know exactly what is going on here. When both my husband and I were doing the Yasko methylation protocol, one of her supplements (pretty sure it was the multivitamin) made us both pee all night long. It was awful. As soon as we stopped taking that one, the nighttime urination disappeared. I still don't know what it was about that vitamin that caused that, and what's even weirder is that he and I almost never react to the same supplement. Another example is a few years ago, I took a high dose of pregnenalone and niacinamide and felt amazing (almost like being on amphetamine good!) but that lasted only 3 days, while when my husband took a lower dose of pregnenalone, he got super aggitated and had almost like a rage until he stopped it. It happened both times he tried it - still have no idea what happened there. The point of this is that supplements can have very strong and weird affects, and if I were you at this point, I might consider stopping anything I suspect might have had a weird effect and once I start feeling a bit more 'normalized' start taking those things one at a time and in the smallest doses possible.

    I really have no way to know what happened in your case, but if I had to take a guess, I'd say there was something in the B complex that you really needed, maybe even upregulated something or made some process function better (which would explain the increase in energy). However, possibly you were taking too much of something problematic, which started giving negative effects. Stopping the B vitamins all together might have upset whatever cycle just started working properly, which then got disregulated again. I'll use my husband as an example again- he started taking some B vitamins, was fine, then switched to a B complex and got serious adrenaline issues, attacks all throughout the day and even at night - he'd wake up froma deep sleep with insane adrenline attacks. One time we even went to the emergency room because it scared him so much (boy what that an expensive trip! but at least we had the experience of riding in an ambulance and got to cross that off the bucket list.) We eventually figured out that P5P (b6) was feeding some kind of adrenline production loop and due to his SNPs, he doesn't break down adrenline properly. He can now taken methylfolate and MethylB12 without a problem, but the minute he takes something with P5P, the adrenline problems start back immediately.

    When you switched to a low carb paleo diet (which I myself did for years) it could be that either you started eating something that isn't agreeing with you (just as an example, if you are eating a lot of bacon/deli meats, it could be the nitrites contributing to an excessive peroxynitrite cycle, something that is hypothesized to be a major issue for CFSers) or perhaps your body is struggling with being in ketosis and just can't become efficient with this new way of eating. Without knowing any details of how you were eating before the switch, how you're eating now, and how quickly you made the change, it's all just guesswork. Again, if you don't seem to be adjusting to the new diet, maybe you should consider resuming how you were eating previously. If you can't narrow it down to specific foods bothering you, you could try a moderate to high carb paleo diet (adding more fruit, white rice, potatoes) to try to understand whether it's something to do with the change in carbs that your body isn't coping well with.
     
    Last edited: Feb 21, 2017
  9. Crux

    Crux Senior Member

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    Paleo diet can often be high protein, which is ok, but, it can be high in iron. Meats are high in bioavailable , or heme iron.

    I've had most of the symptoms you've listed, and I have iron overload.

    Here's a list of some of the symptoms, but not everyone has them all. Some have other symptoms.

    http://www.irondisorders.org/iron-overload
     
  10. Konflict

    Konflict Senior Member

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    First off thank you for all the replies. I'll try to answer everything in a single post:

    I take magnesium oxide 500mg at night before bed and have for about the past 5 years....never supplemented potassium or carnitine, but since these issues I've started taking a balanced liquid electrolyte supplement with very small amounts of sodium, chloride, magnesium, potassium and zinc.

    Maybe I did jump up too fast with the b12, and for sure with the riboflavin, I just didn't know that it mattered as I always thought that whatever you didn't use would be urinated out :/ I was and still am very uneducated on this subject.

    My diet before switching to the methyl b supplements was a fruit/greens juice for breakfast, mostly whole grains (not much unprocessed grains/flour), healthy fats like olive oil and animal fats, it was a pretty decent diet. I continued that diet during the time I took the methyl vitamins and up until I switched to the paleo. Basically during the paleo diet I was eating a lot of eggs, pork chops, chicken, whey protein, low sugar Greek yogurt, tuna. It was a high fat/high protein and very low carb (less than 25-30g a day).

    I had to stop working out and eating decently healthy very soon after mid January as my joints literally feel as though they don't exist anymore, like there's very little connective tissue left. They crack vey easily without much resistance, as well as my neck and back and it's VERY painful.

    At first I thought maybe I ketosis as I lost a lot of fat and water weight after the symptoms arose, then I thought maybe I crashed my estrogen or damaged the receptors because vitamin E binds to estrogen receptors and going too low carb has issues with Aromatization long term (hence the rise in testosterone from December to January). But after looking up the methyl b side effects I feel it's more likely I messed something up taking those, and possible crashing my adrenals with the low carb diet. I'm hoping my naturopath can help me figure this imbalance out.

    I'm hoping to get some more blood work done and will make sure I get the folate and b12 tested, possibly b6 if there's a test for that. I'm also trying to get my insurance to pay for a heavy metals test since it costs a lot out of pocket.
     
    Izola likes this.
  11. Konflict

    Konflict Senior Member

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    I think the sodium was higher on the last test because that was after a 12 hour water fast. And the cortisol test was taken at 11am.

    And currently I'm taking no types of supplements other than vitamin D, Magnesium, and low dose liquid electrolyte balance.
     
    Last edited: Feb 22, 2017
  12. Konflict

    Konflict Senior Member

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    Could I have possibly messed up my estrogen metabolism from taking the supplements I took? I'm reading how important methylation is for estrogen metabolism, and I have many of the symptoms of low estrogen (I'm male btw). Taking the vitamin E as well as the methyl B vitamins, could this has possibly mad things a lot worse for me? Here's an article on how vitamin E effects estrogen receptors:

    https://www.ncbi.nlm.nih.gov/pubmed/16091003
     
  13. Crux

    Crux Senior Member

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    There were some studies that showed folate lowered zinc, but another didn't.

    Low copper can present with connective tissue disorders, fatigue, etc.
    http://lpi.oregonstate.edu/mic/minerals/copper

    Nuts are a good source of vitamin E, copper, magnesium, etc.
     
  14. Gondwanaland

    Gondwanaland Senior Member

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    Methylation supps left me in a similar state back in 2014. It took me years to figure it all out.
    The most significant lab result I got back then was urine magnesium which was very low just like your sodium (I didn't test urine sodium, but I craved salt).
    I think you are in the right track. After being harmed by a bunch of drs who prescribed me progesterone, a couple of months ago I asked my dr for estrogen replacement and I am finally seeing improvements in brain fog and general energy. However, the estrogen receptors are blocked (I think they tend get calcified in prone, low-estrogen women), and proteases enzymes are what activate them (this could be a recipe for breast cancer :eek: ).

    Apparently methyl donors speed up estrogen breakdown - LCHF and paleo diets do too, I used to love avocadoes every now and then, but eating them too frequently lead me to intolerance, for 2 reasons I guess, I became salicylate intolerant after methylation and also because they are progesterogenic (progesterone inhibits estrogen).

    From low estrogen you get low serotonin = poor gut motility. Regarding thyroid (yours seems normal), I think women need estrogen (the serotonin from it) to convert T4 into T3. I suppose men rely on another mechanism.

    As for estrogenic foods, soy and flax contain phytoestrogens but at the same time receptor inhibitors (I guess lignans in flax), so they might help for a short while and then you will lose the benefits because the receptors will get all blocked.

    Another thing that methylation supps mess up is uric acid and glucose metabolism. If you are to draw blood anytime soon check your insulin (the best is an insulin-glucose assy of at least 2 hours) and uric acid.

    You might have blocked hormone/neurotransmitter receptors, while he doesn't.

    Just guessing. The above is what I retained in my memory from reading studies, online nutritional info and talking with my drs.
     
  15. Paralee

    Paralee Senior Member

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    @Konflict , did you say your urine is foamy? I think I've read that could be protein in the urine, or maybe oxalates? I don't know, and gotta get ready for a doc appt. ...... kinda makes me wonder about the appt.'s.

    With all those B's and a multi could that be it? And there's something in a Bcomplex I can't take.....but I gotta go.
     
  16. Konflict

    Konflict Senior Member

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    So my theory isn't out of bounds thinking I blocked them? I'm new to all of this and trying to understand a lot in a short period of time. Is there anything I can do or take to try and free up the receptors....or a test I can do to prove its the estrogen receptors I blocked? I've never experienced anything like this ever and it keeps getting worse and it's only been a little over a month.

    I read about another guy who blocked his estrogen receptors taking Aromatase inhibitors and his body became crippled in a year from all his bodies connective tissue was breaking down, I feel I'm headed down the same path and I'm totally frightened. Maybe a DNA test from 23andme?
     
  17. Gondwanaland

    Gondwanaland Senior Member

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    This will do nothing for you. The supplements you take today are not imprinted in your genome. You are manipulating metabolism and must go by lab results and symptoms. Your glucose is highish.

    I am not sure if the methylation supps block receptors like phytoestrogens and other dietary interventions do. I think they just deplete the hormones.

    Looking back, what high dose B12 and folate did to me was mixed with the effects of the LCHF diet I was following. Here is a list of things:
    • hyperthyroidism followed by hypothyroidism
    • depletion of other B vitamins
    • depletion of minerals & electrolyties
    • messed up neurotransmitters and hormones (excessive breakdown)
    • messed up uric acid synthesis (upregulated) consequently messing up with glucose transport as well

    Activating estrogen receptors is probably dangerous, but I am taking proteases to do just that (and also to get some energy from the food I eat).

    High manganese foods, herbs and teas are very useful as well. If you can digest gluten (I can't), rye and oats are great.

    Of course I already had those issues before trying methylation, and methylation was the wrong intervention for me just making me worse.
    Here is an interesting thread about it. I found that arachidonic acid and COX-2 play a role in it too. I hope tomorrow I will have a chance to share my research results on those in the linked thread.
     
  18. Konflict

    Konflict Senior Member

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    Is there any specific testing I can have done to see if I have some sort of estrogen gene alteration? Sorry if I sound like a noobie, I'm just learning about all of this basically in a "crash course".

    So if I indeed felt some sort of effects from the methylated vitamins, but never too much effect from a basic b complex, then is it safe to say I have a MTHFR mutation? I also still suspect low estrogen, would an estrogen metabolism test confirm how it's working in my body?

    I have an appointment with my naturopathic endocrinologist tomorrow, I think she's very known for hormone balancing and it mentions she deals with MTHFR patients.....I hope she can help me out, I need to start getting better (if it's possible) so I can start care taking for my mother again. It really saddens me that I out myself in this Current state.

    And thank you for all the responses and input so far! Everyone here seems very knowledgeable on health!
     
    Last edited: Feb 23, 2017
  19. Learner1

    Learner1 Forum Support Assistant

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    Tests that could be helpful to you might be:

    - DUTCH test - dried urine test of comprehensive hormones - will tell where all your sex hormone metabolites are and rest cortisol, too

    - Genova Diagnostics NutrEval - will give status of B vitamins and many other nutrients. Get the full Physicians report with the 12 pages of written info very useful in finding patterns of what's wrong. It also tests heavy metals.

    - 23andme - is extremely useful for many of us. Many of my problems stem from my genetics, and understand what my body may be likely to do when faced with various environmental factors has been quite valuable. Once you do the test, it'd need to be interpreted, but there are several tools to do it.

    Some thoughts-

    - most magnesium supplements have arsenic contamination. Is yours clean? I found out the hard way when I started mobilizing it through a treatment that should have helped me... could be the Bs are helping you mobilize something toxic. And your kidneys may be reacting to this.

    - playing with methylation nutrients without understanding them can lead to all sorts of unpredictable symptoms. The testing above can help you sort out what you need. Learn more about methylation, as much as you can. It happens in your mitochondria and us especially important for thosecif US with CFS

    - your TSH moved up. Maybe do a full thyroid panel with antibodies and reverse T3? Or, maybe it'll calm down if you solve the other problems.

    - Paleo is a great diet for most of us. Ketogenic can be great, too. But maybe you went too hard core too fast. Check out Paul Jaminet's Perfect Health Diet - it's a variation on Paleo that may help you while you solve the other problems.

    - B6 does a lot of things - it's essential in heme synthesis, cell membrane production, detoxification and methylation. I'd be wary of saying its bad. If taking it causes a reaction, it's likely you need to adjust another cofactor somewhere. It's used everywhere. My body needs 350mg of it when the DV is something like 1.5-2. The NutrEval test can help you figure out what you need.

    I'm sure others will chime in, too.

    Good luck!
     
  20. Konflict

    Konflict Senior Member

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    Yes my urine is always foamy and always the same pale yellow color. The thing is the majority of severance of my symptoms only started when I was eating low carb for a few weeks....I had an appointment when a naturopathic endocrinologist yesterday, she thinks I over methylated and then when starting the low carb diet I wasn't getting the nutrients I needed and crashed badly. She seems to understand methylation but I have no idea how much of an expert she is as I really don't understand anything about it.

    She gave me a B complex (my old original one, only the b12 is methyl) and told me I should take them in halves and see if I feel better.....I feel really tired today. I honestly think I may have done permanent damage with all this, as she couldn't understand why I'm experiencing total boldly dehydration, inability to hold water, insomnia, why I'm having muscle tremors, and why my joints and bones are cracking and hurting. I'm assuming it's from the dehydration, but idk what's causing it other than possibly messing up my estrogenic genes/receptors, or when I was overmethylating I allowed heavy toxins like copper or Mercury into my system to wreak havoc.

    I feel so fatigued I can hardly leave the house or even walk outside to get some sun. I'm 30 and am my mothers caretaker and now she's mine.....I feel so bad for her.
     

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