Discussions By Condition: Medical Stories

MTHFR, MTR, MTRR, B12 deficiency

Posted In: Medical Stories 3 Replies
  • Posted By: Ladybug12
  • September 29, 2012
  • 01:17 AM

Hi! I am new to this forum and heard about from my ND.
My story begins almost 7 years ago. I was 50 and just went into menopause when my first symptom appeared. It started as
a tingling sensation across my nose then moved to my teeth. There was no pain at the time, just sensitivity. Also, I started having
hot flashes and night sweats. By early 2006, my teeth began to hurt (nerve pain). This pain was (and still is) chronic and severe. It feels like the nerves in my teeth are burning, stinging, throbbing and there is numbness. My teeth don't feel real to me. Also at that time,
my tongue and the roof of my mouth, gums and lips were experiencing the same sensations. I will not go into detail about how many drs, and dentists as well as other health care professionals and their treatment, but nothing has worked. About three years ago, my hands and feet developed neuropathy: burning, tingling and numbness as well. Then my joints (all my joints) started cracking, snapping and popping....there is no pain, just very noisy joints. Then more recently, my left ear rings. It is constant and is a very high pitch ringing or hissing sound. I have headaches and feel very bad. I don't feel tired really, just awful nerve pain, joint cracking and ear ringing is what is giving me the fits!!!
I received a diagnosis of having MTHFR and also B12 deficiency as well as Vit D and pantothenic acid deficiency. My lithium levels are low and I am not able to hold estrogen. (I had a total hysterectomy in 2007). My binding capacity for B12 is abnormal. WHILE I NEED B12 TO HEAL, I CANNOT TAKE IT AS IT MAKES MY NEUROPATHIC PAIN SO MUCH WORSE, I CAN BARELY STAND IT AND HAVE TO STOP. My ND is working very hard to hel me, but is finding my case very challenging. I have lived with this for almost seven years and things only get worse. I hear a constant clicking in my head (NOT TMJ), but I haven't found anyone who can tell me what the clicking is. I suspect maybe I am low in estrogen and so dried out internally, that perhaps the biestrogen and progesterone I take will help...if anyone knows what this could be, I would love to hear from you.
At this point and time, I cannot take the Active B12 methylcobalamin. But I take lithium, fish oil, krill oil, turmeric, zinc, Vit E, CoQH,
acetyl L carnitine and alpha lipoic acid and a good probiotic.
I just got my results from the 23 and me DNA tests. It did reveal that my body is screaming for B12, and very low in estrogen and I had a few other SNP's.
I would welcome any suggestions you can give me. I don't know how I could live for 50 years without any nerve pain like I am having then almost overnight, I have gotten so sick and always in extreme pain. My ND suggested that I write on this forum.
Let me add that in 2009, I was diagnosed with toxic levels of B6. I was told at the time that, that was the cause of my neuropathic pain and once off the B6, I would only improve. My levels are normal, but I have only gotten worse the last three years.
Thank you for listening.
Best, Susan~

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3 Replies:

  • Hi! I am new to this forum and heard about from my ND. My story begins almost 7 years ago. I was 50 and just went into menopause when my first symptom appeared. It started asa tingling sensation across my nose then moved to my teeth. There was no pain at the time, just sensitivity. Also, I started havinghot flashes and night sweats. By early 2006, my teeth began to hurt (nerve pain). This pain was (and still is) chronic and severe. It feels like the nerves in my teeth are burning, stinging, throbbing and there is numbness. My teeth don't feel real to me. Also at that time,my tongue and the roof of my mouth, gums and lips were experiencing the same sensations. I will not go into detail about how many drs, and dentists as well as other health care professionals and their treatment, but nothing has worked. About three years ago, my hands and feet developed neuropathy: burning, tingling and numbness as well. Then my joints (all my joints) started cracking, snapping and popping....there is no pain, just very noisy joints. Then more recently, my left ear rings. It is constant and is a very high pitch ringing or hissing sound. I have headaches and feel very bad. I don't feel tired really, just awful nerve pain, joint cracking and ear ringing is what is giving me the fits!!!I received a diagnosis of having MTHFR and also B12 deficiency as well as Vit D and pantothenic acid deficiency. My lithium levels are low and I am not able to hold estrogen. (I had a total hysterectomy in 2007). My binding capacity for B12 is abnormal. WHILE I NEED B12 TO HEAL, I CANNOT TAKE IT AS IT MAKES MY NEUROPATHIC PAIN SO MUCH WORSE, I CAN BARELY STAND IT AND HAVE TO STOP. My ND is working very hard to hel me, but is finding my case very challenging. I have lived with this for almost seven years and things only get worse. I hear a constant clicking in my head (NOT TMJ), but I haven't found anyone who can tell me what the clicking is. I suspect maybe I am low in estrogen and so dried out internally, that perhaps the biestrogen and progesterone I take will help...if anyone knows what this could be, I would love to hear from you. At this point and time, I cannot take the Active B12 methylcobalamin. But I take lithium, fish oil, krill oil, turmeric, zinc, Vit E, CoQH,acetyl L carnitine and alpha lipoic acid and a good probiotic. I just got my results from the 23 and me DNA tests. It did reveal that my body is screaming for B12, and very low in estrogen and I had a few other SNP's. I would welcome any suggestions you can give me. I don't know how I could live for 50 years without any nerve pain like I am having then almost overnight, I have gotten so sick and always in extreme pain. My ND suggested that I write on this forum.Let me add that in 2009, I was diagnosed with toxic levels of B6. I was told at the time that, that was the cause of my neuropathic pain and once off the B6, I would only improve. My levels are normal, but I have only gotten worse the last three years.Thank you for listening.Best, Susan~ Hi Susan,I am sorry to here that you are in so much pain. It is strange with MethylB12, at the beginning, the more you need it, the more problems it will give you.I believe that it is the only way you will heal though.You are right. Your body is screaming for it. Even if your pain increases, I think you should give it another try. You didn't mention how much and how often you took the active B12. Very small amounts(the smallest crumb), very often (every hour) is the best way at the beginning.You could also try a less active form, hydroB12.Best of luck,mogy
    mogy73 18 Replies
    • October 26, 2012
    • 04:35 AM
    • 0
    Flag this Response
  • Hi! I am new to this forum and heard about from my ND. My story begins almost 7 years ago. I was 50 and just went into menopause when my first symptom appeared. It started asa tingling sensation across my nose then moved to my teeth. There was no pain at the time, just sensitivity. Also, I started havinghot flashes and night sweats. By early 2006, my teeth began to hurt (nerve pain). This pain was (and still is) chronic and severe. It feels like the nerves in my teeth are burning, stinging, throbbing and there is numbness. My teeth don't feel real to me. Also at that time,my tongue and the roof of my mouth, gums and lips were experiencing the same sensations. I will not go into detail about how many drs, and dentists as well as other health care professionals and their treatment, but nothing has worked. About three years ago, my hands and feet developed neuropathy: burning, tingling and numbness as well. Then my joints (all my joints) started cracking, snapping and popping....there is no pain, just very noisy joints. Then more recently, my left ear rings. It is constant and is a very high pitch ringing or hissing sound. I have headaches and feel very bad. I don't feel tired really, just awful nerve pain, joint cracking and ear ringing is what is giving me the fits!!!I received a diagnosis of having MTHFR and also B12 deficiency as well as Vit D and pantothenic acid deficiency. My lithium levels are low and I am not able to hold estrogen. (I had a total hysterectomy in 2007). My binding capacity for B12 is abnormal. WHILE I NEED B12 TO HEAL, I CANNOT TAKE IT AS IT MAKES MY NEUROPATHIC PAIN SO MUCH WORSE, I CAN BARELY STAND IT AND HAVE TO STOP. My ND is working very hard to hel me, but is finding my case very challenging. I have lived with this for almost seven years and things only get worse. I hear a constant clicking in my head (NOT TMJ), but I haven't found anyone who can tell me what the clicking is. I suspect maybe I am low in estrogen and so dried out internally, that perhaps the biestrogen and progesterone I take will help...if anyone knows what this could be, I would love to hear from you. At this point and time, I cannot take the Active B12 methylcobalamin. But I take lithium, fish oil, krill oil, turmeric, zinc, Vit E, CoQH,acetyl L carnitine and alpha lipoic acid and a good probiotic. I just got my results from the 23 and me DNA tests. It did reveal that my body is screaming for B12, and very low in estrogen and I had a few other SNP's. I would welcome any suggestions you can give me. I don't know how I could live for 50 years without any nerve pain like I am having then almost overnight, I have gotten so sick and always in extreme pain. My ND suggested that I write on this forum.Let me add that in 2009, I was diagnosed with toxic levels of B6. I was told at the time that, that was the cause of my neuropathic pain and once off the B6, I would only improve. My levels are normal, but I have only gotten worse the last three years.Thank you for listening.Best, Susan~ Hi Susan,There is a forum at Pheonix Rising (ME/CFS) that discusses MTHFR, MTR, MTRR, B12 deficiency.mogy
    mogy73 18 Replies
    • October 26, 2012
    • 04:39 AM
    • 0
    Flag this Response
  • Dealt with the same thing. Happy to report that taking a time-release Naicin suppliment has worked like a charm. See article here (from a doc who is actually specializing in MTHFR...http://mthfr.net/methylfolate-side-effects/2012/03/01/?inf_contact_key=09c856b18dd1a04341b982d4d06e7897d29d0f4841cefa35b5aefc14a36a2806
    CWReding 0 Replies
    • December 31, 2013
    • 07:41 PM
    • 0
    Flag this Response
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