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  1. Branston

    Branston

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    On a Urinary Amino Acid test my Methionine was 4.9 ( 8-50 )
    I have MTHFR C677T +/+ MTR +/- MTRR +/+ BHMT 2,4 8 all +/+
    I have concentrated on using 5MTHF and HyB12, MeB12, but now thing that this alone will not do anything given that I have significant defects in botht he long and short pathways, and very low Methionine.
    So I have started taking Methionine, 500mg twice a day, I never knew that it was used as a treatment for Arthritis I have no idea if this dose is high enough, given how low my level is.
    Anyone care to comment?
    http://www.livestrong.com/article/477945-methionine-arthritis/
    I




     
  2. Branston

    Branston

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  3. dbkita

    dbkita Senior Member

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    Some people tend to frown on taking methionine every day since it can slow down the methylation cycle. But then again it will vary from person to person since methionine is in food as well. 500 mg twice a day is not a small dose.

    That being said with your experiences and your labs and genetics, you might want to reconsider the hb12 and go to mb12. Also how much p5p and r5p do you get? I have similar BHMT mutations and am mulling what to do as in whether PS, PC or TMG.

    Good luck.
     
  4. Branston

    Branston

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    How does it slow down the Methylation Cycle? I would have thought it would be the opposite... that low levels would slow down. I am already doing 5MTHF and Hydroxy and Methyl B12
    What is r5p?
     
  5. Xara

    Xara Senior Member

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    Riboflavin 5 Phosphate, an active form of vitamin B2.
    HTH
     
  6. dbkita

    dbkita Senior Member

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    Feedback inhibition. If you provide it directly then you slow down the methionine synthase reaction. Rich Vank and others have warned about this and other direct interventions in some of the posts that surrounded his SMP. What you propose is a temporary fix only.

    If your methionine is so low (what is your homocysteine btw) then your methylation cycle is not running very well. I would seriously reconsider the hb12 and the amounts of 5mthf and methylb12. Again what amount of p5p and riboflavin / r5p are you taking? If those are too low as cofactors then everything grinds to a halt. The other boogie monster in the room is your ATP cycle functionality. What are your energy levels like?
     
  7. Branston

    Branston

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    Thank you for your helpful reply. My Homocysteine is 5. I am doing 800mcg of 5MTHF.... sometimes I have to reduce it to 400mcg because i get such a strong metallic taste in my mouth and feel so ill. I take 2mg of HB12 and 2mg MeB12, and have also done 2mg of AdB12 at times. The P5P I have only done a bit hit and miss and I can't remember the dose...... I think it might have been 25mg. The r5p I had never heard of until just now !!
    My energy level is dreadful.... I am mostly housebound. My MCV is 107..... I know I have major issues with Folate.
    I have Hemochromatosis and when I was first diagnosed 5 years ago had a pint of blood removed every 2 weeks for a total of around 20. I had no idea that I had MTHFR +/+ at that time. It obviously made my already existing Folate problems a LOT worse.
     
  8. dbkita

    dbkita Senior Member

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    Ok I have hemachromatosis too so let me give you something to think about. If your ferritin is below 100 you will feel tired. If it is in the single digits like mine was on phlebotomies for a long time then all the folate in the universe will NOT get rid of the fatigue. Regardless of what is discussed on these forums, there are other things than folate and mb12.

    Iron is hugely important. I understand the concerns regarding hemachromatosis. What was your ferritin levels when the doctors diagnosed you? Mine was 500. They drained me and kept me low for eight years. It has taken me another six years to get my ferritin back above 100. Be careful. Low iron especially anemia is one of the worst stress you can subject your body to. Also riboflavin / r5p is critical to iron storage; vitamin A in an opposite manner.

    The metallic taste can be several things. For me it always meant I needed more zinc. Based on your SNPs I have no idea why you are on hb12. Just my opinion. The p5p is an essential part of the methylation protocol. The dose is up to you but 25mg is probably an ok amount to experiment with. The MCV suggests your mb12 is very low. That would be expected from some of your MTR and MTRR problems. Maybe you need methionine supplements now, see how they do, get other supports in place and then try to wean off it over time. Dunno for sure. If you are not taking B2 of any type, I would seriously consider it.

    What are your ferritin, iron serum, TIBC, and hematocrit number like nowadays? Taking supplemental iron is always dangerous if you have hemachromatosis. But you may need to reconsider any further phlebotomies. Also what hemachromatosis mutations do you have. The distinction between which ones makes a BIG difference. I am compound heterozygote which makes my hemachromatosis highly variable and dependent on epigenetic triggers.
     
  9. invisiblejungle

    invisiblejungle Senior Member

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    Hi Dbkita,

    I don't have hereditary hemachromatosis (at least according to 23andme), but I've had ferritin tested 3-4 times over the past 5 years, and it's usually around 300. I once saw a hematologist, but he didn't think it was an important issue. I did have regular phlebotomies over a year and got my ferritin down to 100 at one time, but I didn't see any benefits.

    What is your opinion regarding optimal ferritin levels? I understand that excess iron is inflammatory, but I haven't seen any definitive conclusions as to just how much ferritin is too much.
     
  10. dbkita

    dbkita Senior Member

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    Ferritin is iron stored in the liver. For inflammation your serum levels are more relevant. If you do not have hereditary hemachromatosis and even then unless your ferritin is 500+ and rising and other markers are also in agreement, I would not TOUCH a phlebotomies with a 10 foot pole. The usual explanation for someone with higher than optimal ferritin without hemachromatosis is low vitamin A levels (for which serum testing is notoriously unrealiable btw). The optimal ferritin for a man is 150-200. For a woman probably 100-150. But if you are 100 it should still be fine provided it does not keep falling. Many people walk around with 250-300 (men or women; my Mom is perenially in the high 200s her whole life). Like I said usually vitamin A levels are lower. There can be other factors but A is the usual suspect. If you want to raise ferritin in a hurry if you ever need to, R5p is the way to go, since taking iron supplements can feed bad stuff in the gut. Lactoferrin is good way to sequester iron in the gut for your own purposes as opposed to microbes. My advice: lose the phlebotomies. Period. If you are worried about inflammation check your serum levels and some of your hemoglobin markers. People who push a link between above normal ferritin and inflammation don't understand how the iron metabolism works. The serum is where inflammatory damage could occur. Unless of course you have hemachromatosis. They you have runaway iron "thermostat". I have the hereditary compound heterozygote. I was pushing high 400s before phelobotomies. I let myself get talked into it. WORST decision I ever made. I already outlined the meltdown in my prior post. Ironically it was a hematologist who pulled me OFF phelobotomies while another was perfectly willing for me to keep doing them beside full blown anemia. I love the medical establishment (/sarcasm off).
     
    invisiblejungle likes this.
  11. Rand56

    Rand56 Senior Member

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    hi dbkita

    I read your previous post saying that if ones ferritin is under 100, you will be tired. In your post above you say the optimal level for males should be 150-200. The last time I had my ferritin tested I was 74. At the time I was told that level was fine. Now I'm wondering from what you said, if atleast in part, my fatigue is stemming from my ferritin being too low.
     
    heapsreal likes this.
  12. Rand56

    Rand56 Senior Member

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    I have a question if anyone can answer it for me. I know zinc is antagonistic with iron. Does this antagonism mostly happen at the intestinal level as far as absorption or can they still be antagonist, albeit maybe to a lesser degree, once both are in your system?
     
    heapsreal likes this.
  13. Branston

    Branston

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    Great to 'talk' with someone who has an understanding of HHC as well as Methylation issues. I have C282Y +/+, which in theory is the worst. My Father had C677Y/H63D and was a blood donor a couple of times a year for around 40 years, so when he was diagnosed at 80 his levels were all fine. My kid brother has C282Y +/-, which in theory is no big deal, but at diagnosis his Ferritin was 1800 and , having been de-ironed, he now requires a Phleb every 4 months and is in fine health.
    My Ferritin at diagnosis was only around 380, but my Iron was around 30 ( 7-26 ) and my TS% was 95. So I had a series of Phlebs and the aim was to get the Ferritin down to around 20. My Hematologist was still alarmed at my TS% being always around 90-95 and ordered a couple more Phlebs. I had one and then refused any more.......taking my doctor info about iron Avidity. Technically, I don't think I 'became' Iron Avid, since my TS% is always high,
    I have not had a Phleb now for 18months and I don't appear to be loading hardly at all. My ferritin now is around 60. It has dropped significantly in the past as a result of taking Zinc. I know I have a high Lead load from renovating an old house, so took Zinc to help with the Mettalothionine detox........ but my Ferritin dropped so that I had to have a whole lot of tests looking for an occult bleed. When I stopped the Zinc, my ferritin started to go up again. Zinc competes with Iron for absorption.... so I found out.
    My aim now is to get my Ferritin up and keep it between 100-150. I will refuse any further Phlebs. I have no idea how to get the TS% down..... I wonder whether your B2 suggestion will help with that?
    Now my Hb is 141, Hematocrit is 0.41, rbc and Platelets were always low, but have come up now to low normal on the 5MTHF.
    My MCV is still 107 this week. I also have Chronic Chlamydia Pneumonia infection, and that is associated with antibodies to B12. I cannot take much more than 5mg of mB12 because I get SUCH a metal dump and feel so lousy. My adrenals are already in bad shape, and I am on Cortef 22.5 mg/day. I don't want the metal dumping to affect my kidneys.
    I am taking HyB12 because that is what Rich suggested in the SMP.......
     
  14. Branston

    Branston

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    I think it competes in the intestines for absorption......... I have had BIG problems with this. But some people have no trouble at all and can take very large doses of Zinc with no trouble. Probably all comes down to genetics. I would say it is OK to take Zinc provided you are aware of the iron issue and keep an eye on it.
     
  15. Branston

    Branston

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    The Iron Disorders Institute now says to keep the Ferritin between 50-150. As a general rule that is good........ but I know several people with HHC who say they feel at their best when the ferritin is around 20.
     
  16. Rand56

    Rand56 Senior Member

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    hi Branston

    Thanks for your info. I'm all for having general rules to make sure one is in a range, but I'd like to know, even though I'm in that range, whether I would feel even "better" if I got my ferritin levels up to more of an optimal level that dbitka stated. When you said above that you know several people with HHC who say they feel at their best when the ferritin is around 20....you sure that isn't a typo and you meant to maybe say 200?
     
    heapsreal likes this.
  17. Branston

    Branston

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    No....definitely 20 ! I don't get it either..... when my Ferritin was low like that I was SO tired. I guess it is all because it is part of a bigger picture. I definitely wouldn't advise someone to aim for a Ferritin as low as 20.
     
  18. dbkita

    dbkita Senior Member

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    A ferritin of 20 = biological disaster at the biochemical level.

    My own reaction to phlebs and my TS% very much mirror yours. My TS% was ridiculously high and had the hematologist all in a fluster. The original target was 20 which in hindsight was a mess. And like you I went through the wasteland of trying to get it up. I have found r5p + whatever (within reason) dietary iron seemed to work pretty well. I went from a ferritin of 60 to 150 in a few months and have since then plateaued between 120 and 150 for a long time doing what I am doing. I also think it about your general health as well. If it sucks then getting iron up is really hard. But it being high in the first place meant certain stressors / trigger were pushing your body that way along with the genetics. Now your brother with an 1800 is serious no doubt.
     
  19. Rand56

    Rand56 Senior Member

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    Ok. I was really confused when you said 20. It just didn't make any sense and it still doesn't. Atleast you agree with that as well.
     
    heapsreal likes this.
  20. Branston

    Branston

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    So you think that the r5p increases iron absorption? What sort of doses do you use? I did , for a while, increase the steak and red wine, and my TS% came down a bit.... but that is not a good long term plan, for a number of reasons.
     

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