Aa
What could be wrong, 29 year old male
whoever answers back I am so grateful I am a 29 year old male it up into 2 years ago I was completely healthy. Two years ago I develop extreme gluten intolerance and dairy intolerance also diagnosed with an IGA deficiency. I change diets and was doing wonderful. I also suffer from a severe herniated disc. In August of 2016 I noticed some strange symptoms beginning I began to have very bad weakness in my legs burning tingling unable to walk long distances whereas I usually can walk up to 4 miles a day. then for a period of three weeks I had muscle twitching all over my entire body. huge amount of tests done found I was toxic levels of B6 and completely deficient in vitamin B2 they also found my thyroid levels we're completely all over the place. I was then put on B2 supplement of 400 milligrams a day now my body has Burning Sensations all over my feet hands thighs and genitals although the twitching has completely stopped since taking you to. dr. Still pretty much have no clue what is going on yet the scary thing is I seem to be suffering now from some exaggerated form of Raynaud's disease I have horrible burning in my hands and feet and they are completely ice cold as the days progress they now are starting to get dryer rudder. I had two MRIs done without contrast as they wanted to rule out MS. I am worried that this is undiagnosed vasculitis or something autoimmune more is going on all of these health issues including food allergies started can someone please give me some insight that I can ask my doctors about I am going to see a rheumatologist soon as well my hands are now very red on and off and skin is dry the weakness in my legs is gone however the burning in my feet and legs thighs and sometimes the tip of my nose is very concerning my wife and I are having a baby in 5 months I'm praying to God I get better before then I wish someone on here to help me or talk to me because I feel that the doctors are giving up on me do you all think it's my thyroid which has tested awkwardly or you think it's still could BMS even though the MRI showed nothing except a swollen ocular nerve which could have been from extreme stress
Your energy metabolism is all over the place and discontinuing the B2 completely IS A MISTAKE!
The side effects of the B2 were analogous to your unnecessary high dose.
Had your doctor taken a more sensible approach
and put you on a reasonable B2 dose, you would have avoided a lot of unwanted effects.
You body is holding on to B6 (in its unusable form), because it senses a functional deficiency.
Otherwise it would excreted, being water soluble, right?
Folate , B12 and other vitamins could be in a similar predicament, as it seems that you may have a MTHFR
gene mutation affecting your methylation cycle.
You thyroid would be affected as this deficiency remains untreated, because energy metabolism depends on B2 and a functional anemia caused by its deficiency would lower thyroid function. Do you have the thyroid test results with lab ref. values?
Your glutathione (the master antioxidant) levels would be low as it does not recycle without B2, meaning your body is oxidizing excessively with less antioxidants around.
There's a good chance you will recover from this, but honestly I think your doctors have done a poor job so far.
Sticking with them, may not be your best option.
I would look for a reputable Functional Medicine Practitioner.
The aforementioned - B6, B2, glutathione, low methylation,
hypothyrodism and other imbalances/deficiencies must be corrected before any further investigation takes place.
It is impossible for your body to recover and function well,
if this is not done soon!
You may probably have a lot of questions and you're welcome to post again or pm me anytime, however please note that my comments are not intended to replace medical advice.
Best wishes,
Niko
The side effects of the B2 were analogous to your unnecessary high dose.
Had your doctor taken a more sensible approach
and put you on a reasonable B2 dose, you would have avoided a lot of unwanted effects.
You body is holding on to B6 (in its unusable form), because it senses a functional deficiency.
Otherwise it would excreted, being water soluble, right?
Folate , B12 and other vitamins could be in a similar predicament, as it seems that you may have a MTHFR
gene mutation affecting your methylation cycle.
You thyroid would be affected as this deficiency remains untreated, because energy metabolism depends on B2 and a functional anemia caused by its deficiency would lower thyroid function. Do you have the thyroid test results with lab ref. values?
Your glutathione (the master antioxidant) levels would be low as it does not recycle without B2, meaning your body is oxidizing excessively with less antioxidants around.
There's a good chance you will recover from this, but honestly I think your doctors have done a poor job so far.
Sticking with them, may not be your best option.
I would look for a reputable Functional Medicine Practitioner.
The aforementioned - B6, B2, glutathione, low methylation,
hypothyrodism and other imbalances/deficiencies must be corrected before any further investigation takes place.
It is impossible for your body to recover and function well,
if this is not done soon!
You may probably have a lot of questions and you're welcome to post again or pm me anytime, however please note that my comments are not intended to replace medical advice.
Best wishes,
Niko
3 Comments
You are an amazing person and so grateful for your response. Mthfr is something I researched recently and I asked them about it. They said they would test me for it but insurance does not cover it. I still take 200mg of B2. I too think EXAXTLY what you said is correct. Can't tell you how much u appreciate your response. How is MTHFR gene mutation treated, and how could this have just shown up after 29 years? Btw my beta globulin was low as well. Vitamin b6 originally 76, B2 5.1. I eat a completely gluten/lactose free diet. How could B6 even build up in me when I never tske supplents of it. I just have had enriched gluten free bread. In my heart I feel I am dealing with a vitamin deficiency only and not true hashimotos like the neurologist thinks. Just the constant body cold is hard to work with. I am so happy you responded, MTHFR is exactly what I feel is going on but I am not a doctor etc I didnt want to sound off. I am just hoping and praying doctors get me balanced when my child arrives
Genetic susceptibility is one of various factors in the development of disease processes and the onset of illness.
" Stress + Infectious Agents + Toxins +Genetic Susceptibility = Health Condition"according to Dr. Amy Yasko, an authority in Nutrigenomics.
She's the author of many books, including :
"Autism" :
"The Pathway To Recovery".
It's a free download and a very interesting read with much information on the MTHFR gene.
The good news is that the "fix" is relatively easy.
Basically you need what are called
"methyl donors" to facilitate the methylation process, since you have a deficiency in these substances.
A methyl donor is simply any substance that can transfer a methyl group [a carbon atom attached to three hydrogen atom (CH3)] to another substance to complete many biochemical processes in the body which have to do with methylation, including:
-Repairing and regenerating your cells, tissues and DNA
-Controlling Homocysteine
-Regulating gene expression and protein function
-Synthesizing neurotransmitters
-Controlling inflammation
-Helping the liver in processing fats
-Activating and regulating the immune system
-Detoxification of toxins and heavy metals.
Look into MTHFR supplements as a trial :
Methylocobalamin B12, Methylfolate
and P5P .
P5P is the bioactive form of B6.
All 3 above must be taken.
Alternatively, TMG ( Trimethylglycine)
is the least expensive option.
SAMe and DMG are other options as well.
Please take time to research these,
but keep in mind every case is different, so whatever you decide to do, take a conservative approach and start slow, implementing gradual increases as improvements are experienced.
Careful monitoring of intake and changes is highly recommended.
You may benefit temporarily from a starting dose of Armour (Natural thyroid supplement-prescription needed) until your body hopefully rebalances from the effects low methylation and B2 levels increase to counter any functional anemia issues.
If you're expecting, it is important that
you thyroid function is regulated, since it can affect your unborn baby.
Talk to your OB/Gyn!
Don't blame your doctor for lack of knowledge in MTHFR
It is not a money driven field, since basic cheap vitamins constitute effective treatment for low methylation, so the entire medical/pharmaceutical system is showing little interest :(
I"m glad you're still on the B2, however, look into lowering the dose in order to lessen the side effects.
You don't necessarily benefit from taking a higher dose, so why risk it.
Any more questions, just post again.
Best wishes,
Niko
" Stress + Infectious Agents + Toxins +Genetic Susceptibility = Health Condition"according to Dr. Amy Yasko, an authority in Nutrigenomics.
She's the author of many books, including :
"Autism" :
"The Pathway To Recovery".
It's a free download and a very interesting read with much information on the MTHFR gene.
The good news is that the "fix" is relatively easy.
Basically you need what are called
"methyl donors" to facilitate the methylation process, since you have a deficiency in these substances.
A methyl donor is simply any substance that can transfer a methyl group [a carbon atom attached to three hydrogen atom (CH3)] to another substance to complete many biochemical processes in the body which have to do with methylation, including:
-Repairing and regenerating your cells, tissues and DNA
-Controlling Homocysteine
-Regulating gene expression and protein function
-Synthesizing neurotransmitters
-Controlling inflammation
-Helping the liver in processing fats
-Activating and regulating the immune system
-Detoxification of toxins and heavy metals.
Look into MTHFR supplements as a trial :
Methylocobalamin B12, Methylfolate
and P5P .
P5P is the bioactive form of B6.
All 3 above must be taken.
Alternatively, TMG ( Trimethylglycine)
is the least expensive option.
SAMe and DMG are other options as well.
Please take time to research these,
but keep in mind every case is different, so whatever you decide to do, take a conservative approach and start slow, implementing gradual increases as improvements are experienced.
Careful monitoring of intake and changes is highly recommended.
You may benefit temporarily from a starting dose of Armour (Natural thyroid supplement-prescription needed) until your body hopefully rebalances from the effects low methylation and B2 levels increase to counter any functional anemia issues.
If you're expecting, it is important that
you thyroid function is regulated, since it can affect your unborn baby.
Talk to your OB/Gyn!
Don't blame your doctor for lack of knowledge in MTHFR
It is not a money driven field, since basic cheap vitamins constitute effective treatment for low methylation, so the entire medical/pharmaceutical system is showing little interest :(
I"m glad you're still on the B2, however, look into lowering the dose in order to lessen the side effects.
You don't necessarily benefit from taking a higher dose, so why risk it.
Any more questions, just post again.
Best wishes,
Niko
Hey, sorry, I got temporarily gender
confused in my last post.
I knew you stated male in your 1st post, however, I wrongly assumed female when you mentioned arrival of your baby your 2nd post, lol!
Cheers,
Niko
confused in my last post.
I knew you stated male in your 1st post, however, I wrongly assumed female when you mentioned arrival of your baby your 2nd post, lol!
Cheers,
Niko
Can too much b2 cause joint pain as well? Just an update. Vitamin levels have gotten better. I continue to have traveling joint pain and minor burning. My muscke twitching is 95% better. My new diet has led me to weight loss but 5 doctors said I am ok. A rheumatologist thinks I may have minor bowel infection. I do have celiac
Hello~Along with all the above poster has shared, I highly recommend seeing a chiropractor. Some of the burning and tingling and lack of circulation could be due to pinched nerves in your spine and neck. The Chiropractor will take some x-rays and will be able to determine what areas, if any, are affected. After a few treatments, you should start to feel lots better.
3 Comments
Good aftenoon all. Will keep you posted as this may help others. Blood tests came back b2 went up and b6 down 30 points. Taking b2 and mughelfolate as well. Endo said thyroid levels are returning to normal again. The burning continues and weird leg hand feelings but has improved since past week. Waiting on more tests. Endo is convinced I an having nerve problems that are repairing from vitamin deficiency he also feels based upon my appearance I look better. Possibly neuropathy from vitamins. I am feeling 50% better since septemner. I also ordered 23 and me and will keep you posts with more info
How long does it take to recover from severe vitamin b2 defuciency? One doctor said 3 months another said 20 weeks
It is not possible to establish a clear timeline,since there are too many variables.
IDK what the above doctors' comments were based on.
Absorption rates depend on multiple factors, such as diet, frequency of B2 intake, digestive and/or G/I health, taken with or w/o meals, etc.
To optimize absorption and shorten
the recovery time, take the smallest dose (is it 25 mg?) preferably with each meal, rather than a single larger dose.
Are you still doing the 200 mg?
If yes, discuss it with your doctor, as you might be unnecessarily suffering from increased side-effects of this higher dose.
It is water-soluble and any excess B2 gets excreted in urine, however, this does not mean the extra B2 is inert while in the body!
The RDA for males is only 1.3 mg,
so even in the worse possible scenario the smallest available formulation at 25 mg is plenty!
Best wishes,
Niko
IDK what the above doctors' comments were based on.
Absorption rates depend on multiple factors, such as diet, frequency of B2 intake, digestive and/or G/I health, taken with or w/o meals, etc.
To optimize absorption and shorten
the recovery time, take the smallest dose (is it 25 mg?) preferably with each meal, rather than a single larger dose.
Are you still doing the 200 mg?
If yes, discuss it with your doctor, as you might be unnecessarily suffering from increased side-effects of this higher dose.
It is water-soluble and any excess B2 gets excreted in urine, however, this does not mean the extra B2 is inert while in the body!
The RDA for males is only 1.3 mg,
so even in the worse possible scenario the smallest available formulation at 25 mg is plenty!
Best wishes,
Niko
God bless you, IL keep you posted on this. Going to my doctor with these exact words. Going to get tested on 23andme for ZMthfr
3 Comments
Going to endocrinologist in 2 days. What exact tests should I ask for? Regarding MTHFR and thyroid issues
If your Endo is not familiar with MTHFR mutations and Nutrigenomics/Epigenetics, I'd say leave it for after 23andme emails you the genetic report.
It's going to take some time, because you need to order the test kit and send your saliva sample off, which eventually will end up in Holland (at least mine did) since they have been mandated not to conduct genetic tests in the US.
I don't know where you live-I'm in Canada btw- but it may have something to do with genetic testing being considered as a threat by the entities which stand to lose business.
Alternatively, you may opt for a TMG trial, starting with the minimum dose, while waiting for your results.
The earlier, the better, before any significant organ/system involvement takes place as a result of the suspected low methylation.
As far as thyroid testing goes, it is necessary to get Free T3, Free T4
and Reverse T3 * thyroid tests so you can rule out
Type 1 and Type 2 Hypothyroidism
Type 2= Thyroid resistance..which does not show up on the conventional tests TSH and T4!
In the event you have prolonged stressed adrenals, your thyroid function would be down-regulated for adrenal recovery, thus being classified as secondary hypothyroidism, which will likely be
type 2 (thyroid resistance).
In the latter case, treating the thyroid
without treating the adrenals would likely backfire and your condition would worsen. Watch out for high RT3 values. You may post the results here.
You would then likely need an Adrenal Stress Profile* ( saliva test for 4x Cortisol and DHEA-S average)
Your Endo may not be very co-operative, as Endos normally do not check the adrenals unless they suspect Adrenal Insufficiency,
a little too late, since there's no cure at this (end) stage!
* Usually not covered by insurance.
I know it's a lot of information to sort out, however, it is important to get a good grasp of the basics, as this will put you miles ahead on your road to recovery.
Do yourself a big favor and DO NOT rely entirely on the Endo!
Best wishes,
Niko
It's going to take some time, because you need to order the test kit and send your saliva sample off, which eventually will end up in Holland (at least mine did) since they have been mandated not to conduct genetic tests in the US.
I don't know where you live-I'm in Canada btw- but it may have something to do with genetic testing being considered as a threat by the entities which stand to lose business.
Alternatively, you may opt for a TMG trial, starting with the minimum dose, while waiting for your results.
The earlier, the better, before any significant organ/system involvement takes place as a result of the suspected low methylation.
As far as thyroid testing goes, it is necessary to get Free T3, Free T4
and Reverse T3 * thyroid tests so you can rule out
Type 1 and Type 2 Hypothyroidism
Type 2= Thyroid resistance..which does not show up on the conventional tests TSH and T4!
In the event you have prolonged stressed adrenals, your thyroid function would be down-regulated for adrenal recovery, thus being classified as secondary hypothyroidism, which will likely be
type 2 (thyroid resistance).
In the latter case, treating the thyroid
without treating the adrenals would likely backfire and your condition would worsen. Watch out for high RT3 values. You may post the results here.
You would then likely need an Adrenal Stress Profile* ( saliva test for 4x Cortisol and DHEA-S average)
Your Endo may not be very co-operative, as Endos normally do not check the adrenals unless they suspect Adrenal Insufficiency,
a little too late, since there's no cure at this (end) stage!
* Usually not covered by insurance.
I know it's a lot of information to sort out, however, it is important to get a good grasp of the basics, as this will put you miles ahead on your road to recovery.
Do yourself a big favor and DO NOT rely entirely on the Endo!
Best wishes,
Niko
Oh, one more thing, you could ask for an MMA test for Methylocobalamin B12 and Methylfolate levels.
Standard blood tests only test for the
regular forms of the above vitamins,
whose levels could be misleading for the practitioners not familiar with MTHFR mutations.
Unfortunately, I don't know how much the Endo will be able to do for you.
This stuff is complicated, specially at first and if your Practitioner is not someone you can work with on a whole body level to truly help to guide you through this maze, it can be not just disappointing, but it could set you back a lot.
If you have the financial means, consider seeing a reputable Functional Medicine or Naturopathic Doctor.
Standard blood tests only test for the
regular forms of the above vitamins,
whose levels could be misleading for the practitioners not familiar with MTHFR mutations.
Unfortunately, I don't know how much the Endo will be able to do for you.
This stuff is complicated, specially at first and if your Practitioner is not someone you can work with on a whole body level to truly help to guide you through this maze, it can be not just disappointing, but it could set you back a lot.
If you have the financial means, consider seeing a reputable Functional Medicine or Naturopathic Doctor.
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