Sorry for the long post, I wanted to give my full history. Thanks to anyone that reads it. My questions are at the end if you want to skip.
History
First of all, I suffer from the C677T mutation of the MTHFR gene. I have a few other mutations that may affect methylation but I don't understand the significance of them. I also suffered from some serious gut issues (IBS/IBD and/or leaky gut) for some years, but happy to say that I seem to have resolved that now so I won't go into it.
I have always had difficulty sleeping (average time to fall asleep 3-5 hours) and I never feel rested, no matter how much sleep I get. For most of my adult life I have always felt tired and low energy and have difficulty finding the energy to do things because I feel so wiped out all the time. I am male, 34 years old.
In early 2019 I went to the doctor complaining about the tiredness (not for the first time). At various times I've previously been diagnosed with depression, and insomnia (both true). This time they did some blood tests and discovered that I had very low levels of B12. They prescribed B12 injections, and the difference was incredible! I realised I had lived most of my life with the energy levels of an 80 year old, and I was just so used to it that I didn't realise I wasn't supposed to be like that. Suddenly I had the energy to do things, I felt happier, more motivated, didn't feel like I was going to collapse whenever I did exercise.
I wanted to know why I was deficient. I am an omnivore and eat plenty of meat, fish, eggs and dairy, so I shouldn't be, which to me suggested an absorption issue. But unfortunately the doctors in the UK are not very good and basically didn't want to give me any more attention. They just said to get tested again after a year. Because of Covid lockdowns, in 2020 the doctor locked their doors and switched off their phone lines so I couldn't get treated.
By April 2021 I felt like I was dying. I can't stress enough the unbelievable fatigue I felt. It was like all the energy had been drained from me by a vampire. That feeling when you have the flu and feel overwhelming debilitating tiredness - I felt that 24 hours per day. But couldn't sleep regardless. I couldn't exercise. I continually felt like I was going to collapse or faint.
Worst of all, my brain wasn't working properly. I couldn't think. I couldn't remember things. In fact I had completely forgotten about the B12 deficiency. It was like I was in a fugue state, just struggling to get through each day. Sometimes all I could do was lie down.
I was struggling to do my job and kept getting called into disciplinary meetings to ask what was wrong with me. They asked me if I was having health issues or personal issues, but I didn't know what to say. I didn't know why I was doing so bad, it was just like my memory didn't work and I couldn't think or concentrate.
I continually tried to get in contact with the doctor, but the NHS is so bad and oversubscribed. The only service available was a text-based service whereby the GP replies with half a sentence of broken English and you can't reply to it. I naively kept getting tested for Covid because I thought there must be something seriously wrong. But it always came back negative.
I continually suffered from digestive issues. It was like my stomach wasn't emptying. I had trouble digesting food, low appetite, frequent diarrhoea, abdominal pains which I thought might have been my pancreas, gall bladder or stomach ulcers.
I kept trying to get in touch with the doctor but very little help was available to me. I was also depressed and suffering all kinds of psychiatric issues, irritability, inability to concentrate, hypersensitivity to everything (smells, noises, light, touch) and really bad tinnitus. I was even having difficulty walking - it was like my brain couldn't work out how to put one foot in front of the other so I had a weird gait.
It was at this point that I found a Reddit thread in which someone in the comments linked to a big thread on this forum, and suddenly I remembered B12. Of course... why did I forget? It's so obvious now. I must have been deficient again. It was more than 2 years since I had the injections.
I contacted the doctor and asked be tested, and they said "yes, you should have been tested again before now". Unfortunately with the waiting times on the NHS, the wait to have a blood test was almost 3 weeks, and then it would be 4-7 days to get the results, and then another 1-2 weeks before I would get the injections.
During that time I deteriorated further. I couldn't do my job any more. I was struggling to do basic things like cooking. When I touched my scalp, clumps of hair would come out. I was having frequent heart palpitations. My tongue was sore and too big for my mouth. I had sores in my mouth. I had dry red scaly patches of skin all around my mouth and nose, and on my arms, torso, feet, pretty much everywhere were patches of red skin that wouldn't heal for weeks or months.
My hands were tingling with pins and needles 24/7 and going numb. My toes had been purple and swollen for a year and I couldn't feel them. My vision was blurry. My brain was barely functioning at all. I couldn't concentrate on anything and didn't know what I was doing from one moment to the next.
Sublingual B12
So I decided I couldn't wait for the blood test, and I was worried about suffering permanent neurological damage. I read up on the posts here and ordered some sublingual methylcobalamin and adenosylcobalamin.
The relief was remarkable. Within a few hours it was like a fog being lifted. I felt energy return and I felt my mind become clear. Over the next few days everything healed - all the sore patches of red skin went away. My tongue stopped being swollen, my hair stopped falling out. After 2 weeks my toes stopped being swollen and returned to normal size (my theory is it was megaloblastic anemia meaning the red blood cells couldn't get into the small capillaries?). The heart palpitations and weird out of sync heart beats also seem to have stopped. My mood improved. I am even falling asleep quicker (1-2 hours instead of 3-5 hours).
When I finally had the blood test, my B12 levels came back OK (about 210pg/100mL). Presumably because the sublingual bioavailable B12 had worked, but this meant they didn't give me any injections or any further possibility of treatment or discussion with a doctor.
I have continued to take the sublingual B12 every morning (about 2400 mcg, but I doubt I'm absorbing all).
Whilst the energy levels and all other symptoms have improved a lot, the tingling and numbness in my hands remains and in fact has seemed to be getting worse. From reading on this forum, I'm wondering if that is part of the healing process?
My questions:
* Should I keep taking the sublingual B12? Am I wrong to keep taking it even though my blood test came back with acceptable B12 levels?
* Should I take an even higher dose? I read that it's virtually impossible to overdose on B12.
* Should I spread the dose out throughout the day instead of taking it all in the morning?
* Is it important to take anything else? I take methylfolate as well because of my genetics, and I also take a high dose of thiamine and sometimes riboflavin.
* Should I avoid NAC? I was taking that earlier in the year and I'm wondering if it precipitated my rapid decline due to using up the cobalamin. I've read mixed things about it, with some people saying it protects cobalamin, and other people saying it causes it to be excreted.
* Will the numbness and shakiness/clumsiness of my hands get better eventually? It's the thing I'm most worried about.
* Do you think I have caused permanent damage to by brain or body by going untreated for so long?
I would appreciate any advice about what I should or should not be doing.
History
First of all, I suffer from the C677T mutation of the MTHFR gene. I have a few other mutations that may affect methylation but I don't understand the significance of them. I also suffered from some serious gut issues (IBS/IBD and/or leaky gut) for some years, but happy to say that I seem to have resolved that now so I won't go into it.
I have always had difficulty sleeping (average time to fall asleep 3-5 hours) and I never feel rested, no matter how much sleep I get. For most of my adult life I have always felt tired and low energy and have difficulty finding the energy to do things because I feel so wiped out all the time. I am male, 34 years old.
In early 2019 I went to the doctor complaining about the tiredness (not for the first time). At various times I've previously been diagnosed with depression, and insomnia (both true). This time they did some blood tests and discovered that I had very low levels of B12. They prescribed B12 injections, and the difference was incredible! I realised I had lived most of my life with the energy levels of an 80 year old, and I was just so used to it that I didn't realise I wasn't supposed to be like that. Suddenly I had the energy to do things, I felt happier, more motivated, didn't feel like I was going to collapse whenever I did exercise.
I wanted to know why I was deficient. I am an omnivore and eat plenty of meat, fish, eggs and dairy, so I shouldn't be, which to me suggested an absorption issue. But unfortunately the doctors in the UK are not very good and basically didn't want to give me any more attention. They just said to get tested again after a year. Because of Covid lockdowns, in 2020 the doctor locked their doors and switched off their phone lines so I couldn't get treated.
By April 2021 I felt like I was dying. I can't stress enough the unbelievable fatigue I felt. It was like all the energy had been drained from me by a vampire. That feeling when you have the flu and feel overwhelming debilitating tiredness - I felt that 24 hours per day. But couldn't sleep regardless. I couldn't exercise. I continually felt like I was going to collapse or faint.
Worst of all, my brain wasn't working properly. I couldn't think. I couldn't remember things. In fact I had completely forgotten about the B12 deficiency. It was like I was in a fugue state, just struggling to get through each day. Sometimes all I could do was lie down.
I was struggling to do my job and kept getting called into disciplinary meetings to ask what was wrong with me. They asked me if I was having health issues or personal issues, but I didn't know what to say. I didn't know why I was doing so bad, it was just like my memory didn't work and I couldn't think or concentrate.
I continually tried to get in contact with the doctor, but the NHS is so bad and oversubscribed. The only service available was a text-based service whereby the GP replies with half a sentence of broken English and you can't reply to it. I naively kept getting tested for Covid because I thought there must be something seriously wrong. But it always came back negative.
I continually suffered from digestive issues. It was like my stomach wasn't emptying. I had trouble digesting food, low appetite, frequent diarrhoea, abdominal pains which I thought might have been my pancreas, gall bladder or stomach ulcers.
I kept trying to get in touch with the doctor but very little help was available to me. I was also depressed and suffering all kinds of psychiatric issues, irritability, inability to concentrate, hypersensitivity to everything (smells, noises, light, touch) and really bad tinnitus. I was even having difficulty walking - it was like my brain couldn't work out how to put one foot in front of the other so I had a weird gait.
It was at this point that I found a Reddit thread in which someone in the comments linked to a big thread on this forum, and suddenly I remembered B12. Of course... why did I forget? It's so obvious now. I must have been deficient again. It was more than 2 years since I had the injections.
I contacted the doctor and asked be tested, and they said "yes, you should have been tested again before now". Unfortunately with the waiting times on the NHS, the wait to have a blood test was almost 3 weeks, and then it would be 4-7 days to get the results, and then another 1-2 weeks before I would get the injections.
During that time I deteriorated further. I couldn't do my job any more. I was struggling to do basic things like cooking. When I touched my scalp, clumps of hair would come out. I was having frequent heart palpitations. My tongue was sore and too big for my mouth. I had sores in my mouth. I had dry red scaly patches of skin all around my mouth and nose, and on my arms, torso, feet, pretty much everywhere were patches of red skin that wouldn't heal for weeks or months.
My hands were tingling with pins and needles 24/7 and going numb. My toes had been purple and swollen for a year and I couldn't feel them. My vision was blurry. My brain was barely functioning at all. I couldn't concentrate on anything and didn't know what I was doing from one moment to the next.
Sublingual B12
So I decided I couldn't wait for the blood test, and I was worried about suffering permanent neurological damage. I read up on the posts here and ordered some sublingual methylcobalamin and adenosylcobalamin.
The relief was remarkable. Within a few hours it was like a fog being lifted. I felt energy return and I felt my mind become clear. Over the next few days everything healed - all the sore patches of red skin went away. My tongue stopped being swollen, my hair stopped falling out. After 2 weeks my toes stopped being swollen and returned to normal size (my theory is it was megaloblastic anemia meaning the red blood cells couldn't get into the small capillaries?). The heart palpitations and weird out of sync heart beats also seem to have stopped. My mood improved. I am even falling asleep quicker (1-2 hours instead of 3-5 hours).
When I finally had the blood test, my B12 levels came back OK (about 210pg/100mL). Presumably because the sublingual bioavailable B12 had worked, but this meant they didn't give me any injections or any further possibility of treatment or discussion with a doctor.
I have continued to take the sublingual B12 every morning (about 2400 mcg, but I doubt I'm absorbing all).
Whilst the energy levels and all other symptoms have improved a lot, the tingling and numbness in my hands remains and in fact has seemed to be getting worse. From reading on this forum, I'm wondering if that is part of the healing process?
My questions:
* Should I keep taking the sublingual B12? Am I wrong to keep taking it even though my blood test came back with acceptable B12 levels?
* Should I take an even higher dose? I read that it's virtually impossible to overdose on B12.
* Should I spread the dose out throughout the day instead of taking it all in the morning?
* Is it important to take anything else? I take methylfolate as well because of my genetics, and I also take a high dose of thiamine and sometimes riboflavin.
* Should I avoid NAC? I was taking that earlier in the year and I'm wondering if it precipitated my rapid decline due to using up the cobalamin. I've read mixed things about it, with some people saying it protects cobalamin, and other people saying it causes it to be excreted.
* Will the numbness and shakiness/clumsiness of my hands get better eventually? It's the thing I'm most worried about.
* Do you think I have caused permanent damage to by brain or body by going untreated for so long?
I would appreciate any advice about what I should or should not be doing.
