Mysterious Undiagnosed Illness-seeking advice, suggestions and stories!

[Booksellercate]

@Booksellercate - yes, many here have trouble with digestion and absorbing b12 when taken orally so I totally agree with you there. Sublingual tablets bypass the digestive tract - they're absorbed through the mouth. And the liquid I take, I leave it under my tongue as much as I can so again I'm absorbing it primarily through my mouth. And if you want to use methylcobalamin, sublingually can be effective, bypassing the digestive tract. It may be worth an experiment since your progress has been slow. I've been taking Bluebonnet liquid methylcobalamin 5000 mcg. per dose. it costs about $20 a bottle on Amazon and lasts me a month.

For your info, on blood work my B12 levels are very high, well above the normal range; but on hair analysis it's almost undetectable. Again, many here have the same issue - we have to take very high doses of B12 to get enough that's actually useable.

I can't find that brand in the UK but I have found some alternative liquid methylcobalamins.

Yes, I've heard that too. I had my MMA tested, quite some time within my supplementation period and it was within range. I think that indicates, it's getting into my body.

 

[Booksellercate]

Okay I see. In that case i'd suggest getting some autonomic testing done (probably by a cardiologist), a tilt table test would be a good start to test for POTS/dysautonomia, the symptoms you describe point towards that (I have POTS myself so I can relate to the leg weakness/low blood pressure and faintness).

I believe it is my autonomic nervous system which is going to be tested at Kings Hospital in London-I'm waiting for my referral.
Have you found a way to manage the symptoms of your POTs?

 

[bombsh3ll]

Hi I am sorry you are suffering without answers, I just wanted to say that your presentation sounds very much like mine, I am 37 and have been ill with ME & severe orthostatic intolerance for 3 years. I have had numerous tests with the only abnormality being low aldosterone. I supplement with b12 sublingual tablets - my b12 has never been checked as far as I know but I have been on omeprazole for many years which can impair absorption. I cannot say b12 has helped me at all. One supplement which did help me significantly for a few months before the effects faded although I still take is licorice root capsules from Swanson, 2 daily. This helps boost blood volume and helps with standing and blood circulation to the brain. It is not the deglychyrrinised form (DGL) that you want for this purpose, as this has had the active ingredient removed.

I am glad you have access to autonomic assessment which may result in other helpful treatments. I live in Scotland where there are no autonomic specialists and English NHS clinics will not accept referrals from north of the border due to funding differences.

 

[arewenearlythereyet]

I would suggest also taking a b complex which will hopefully sort out b1 b2 and biotin (I notice you take biotin separately). I had b12 levels similar to you before supplementing but also low folate. I now use transdermal hydroxy/methyl oil from b12oils.com. I take quite a high dose of these (3 squirts per day) but only take 1200mcg of folate (split in 3 doses). I have a problem processing folate and even so this is much lower than your dose. It's possible your folate is too high and you may also need some b2 or other b vitamins. For my regime I take "b right" which has some folate in it 2 x daily. It's available on Amazon. It's a bit of a rollercoaster so if you do decide to make changes to your regime go low and slow and review your potassium while you make changes.

I also take creatine daily which helps take some of the burden off of the methylation cycle, but this may not help everyone. This worked miracles for me though.

Are you taking vitamin c and selenium? It would also be worth considering a good multi mineral for things like iodine etc

 

[Valentijn]

There are two reasons behind my actions-first it's quite common for B12 deficient sufferers to alternate two different types-although perhaps less common to alternate these two types admittedly-as the body tends to respond differently to both.

People generally alternate because the active forms do different things, or because they want both an active form to do its job and hydroxoB12 to support it or act as an antioxidant. But the cyanoB12 doesn't do anything that the hydroxoB12 doesn't already do, aside from adding cyanide to your system (which the hydroxoB12 fortunately scavenges).

I definitely understand avoiding methylB12 - it doesn't work for me either. I do 10mg of hydroxoB12 twice a week, from a Belgian manufacturer. When injected into the muscle, it should get distributed to the rest of the body slowly enough that daily injections aren't needed.

But high doses of folate also mess some people up. It might be worth experimenting with lower doses. Even with 20mg of hydroxoB12 per week, I do fine with 400mcg folate daily from a normal B multivitamin.

 

[sharks]

You sound a lot like me. Have you been tested for Lyme, EBV and all your minerals?

I can speak for anyone else. But I started to get better when I got a dr that saw my EBV test and saw it was reactived and put me on famvir. I had all my minerals tested and they came back low for iron. Then I started to take suppliments and forced myself to get sleep with benedryl and I am feeling so much better. It's still a slow process for me. Make sure you get it all checked out.

 

[Alvin2]

Aye carumba, i'm so sorry to hear about your condition. I get the feeling you have something that is not yet diagnosed, though you have had a lot of tests done.
What medical specialties have you seen?
What is your B12 currently?

The folic acid is not a good idea to take high dose, since it has to be converted this form can cause problems. That said a low dose methylfolate if you can tolerate it may be a good idea if your deficient otherwise.
That all said if something is not really helping then no real need to find new ways to try it, stick with B12 if you continue to need it and you should have done any healing possible within 6-12 months, so beyond that make sure your levels are good and look elsewhere. Also try taking yourself off the supplements one at a time for a month or two each and see if any difference is made, for two reasons, one to see if its helping or not (sometimes what you take no matter how well intentioned can cause problems), and two to see if there is a change that provides a clue that leads to a test or specialist that leads to diagnosis.

Sometimes we need to keep going to new specialists till we find the one who knows what it is, recently i was reading these and have been surprised how abstract some of the conditions are and what was needed to discover them
http://www.washingtonpost.com/sf/national/collection/medical-mysteries/
https://www.nytimes.com/column/diagnosis

That said i don't have any specific ideas at present, but do keep in mind your financial situation, don't burn your money hoping the next supplement or expensive treatment is the cure, or you will run out of money before you get a diagnosis and learn the treatments available.

 

[Booksellercate]

Hi I am sorry you are suffering without answers, I just wanted to say that your presentation sounds very much like mine, I am 37 and have been ill with ME & severe orthostatic intolerance for 3 years. I have had numerous tests with the only abnormality being low aldosterone. I supplement with b12 sublingual tablets - my b12 has never been checked as far as I know but I have been on omeprazole for many years which can impair absorption. I cannot say b12 has helped me at all. One supplement which did help me significantly for a few months before the effects faded although I still take is licorice root capsules from Swanson, 2 daily. This helps boost blood volume and helps with standing and blood circulation to the brain. It is not the deglychyrrinised form (DGL) that you want for this purpose, as this has had the active ingredient removed.

I am glad you have access to autonomic assessment which may result in other helpful treatments. I live in Scotland where there are no autonomic specialists and English NHS clinics will not accept referrals from north of the border due to funding differences.

Hi, thanks for your reply. Did your symptoms come on suddenly? Who checked your aldosterone? I had to have mine done privately. Thanks for the licorice root supplement recommendation. I think anything is worth a try.

Is there no autonomic testing facility in Scotland at all? It sounds unbelievable that this loophole can exist

 

[Booksellercate]

I would suggest also taking a b complex which will hopefully sort out b1 b2 and biotin (I notice you take biotin separately). I had b12 levels similar to you before supplementing but also low folate. I now use transdermal hydroxy/methyl oil from b12oils.com. I take quite a high dose of these (3 squirts per day) but only take 1200mcg of folate (split in 3 doses). I have a problem processing folate and even so this is much lower than your dose. It's possible your folate is too high and you may also need some b2 or other b vitamins. For my regime I take "b right" which has some folate in it 2 x daily. It's available on Amazon. It's a bit of a rollercoaster so if you do decide to make changes to your regime go low and slow and review your potassium while you make changes.

I also take creatine daily which helps take some of the burden off of the methylation cycle, but this may not help everyone. This worked miracles for me though.

Are you taking vitamin c and selenium? It would also be worth considering a good multi mineral for things like iodine etc

Thanks for replying. It might not have been clear but the Solgar V-75 includes generous quantities of all the B vitamins so I take this now instead of a separate B supplement. I know the B vitamins work best when all in balance. It also has selenium, iodine and vitamin C. I have struggled with potassium before-coconut water seems to have saved me in this area and I managed to get my levels about 4.0 regularly with it.
I don't yet know if I have a methylation issue-but creatine has been recommended to me before-I think to help my poor stomach!

 

[Booksellercate]

People generally alternate because the active forms do different things, or because they want both an active form to do its job and hydroxoB12 to support it or act as an antioxidant. But the cyanoB12 doesn't do anything that the hydroxoB12 doesn't already do, aside from adding cyanide to your system (which the hydroxoB12 fortunately scavenges).

I definitely understand avoiding methylB12 - it doesn't work for me either. I do 10mg of hydroxoB12 twice a week, from a Belgian manufacturer. When injected into the muscle, it should get distributed to the rest of the body slowly enough that daily injections aren't needed.

But high doses of folate also mess some people up. It might be worth experimenting with lower doses. Even with 20mg of hydroxoB12 per week, I do fine with 400mcg folate daily from a normal B multivitamin.

People generally alternate because the active forms do different things, or because they want both an active form to do its job and hydroxoB12 to support it or act as an antioxidant. But the cyanoB12 doesn't do anything that the hydroxoB12 doesn't already do, aside from adding cyanide to your system (which the hydroxoB12 fortunately scavenges).

My message may not have been clear-I would actually like to include methyl B12 injections - unfortunately I've not been able to source them in the UK. I am thinking about experimenting with lowering my folate-it'd save me a small fortune as well!

 

[Booksellercate]

You sound a lot like me. Have you been tested for Lyme, EBV and all your minerals?

I can speak for anyone else. But I started to get better when I got a dr that saw my EBV test and saw it was reactived and put me on famvir. I had all my minerals tested and they came back low for iron. Then I started to take suppliments and forced myself to get sleep with benedryl and I am feeling so much better. It's still a slow process for me. Make sure you get it all checked out.

Hi! Not yet-EBV has come up a few times in conversation. I'm not sure how this is tested on the NHS (UK), I was refused a Lyme test for example. It seems quite difficult to get some testing done here. If you have the money, it's often easier and quicker to do things privately-I'm out of work at the moment so it's not an option for me at the moment. Likewise with the mineral status. However due to my stomach issues, I'm certainly malnourished at the moment so my current nutritional status is very different to when I fell ill last year and was able to eat relatively normally. Again, it's something which probably has to be done privately in the UK - and therefore expensive. Sleep is something I'm working on too...

 

[Booksellercate]

Aye carumba, i'm so sorry to hear about your condition. I get the feeling you have something that is not yet diagnosed, though you have had a lot of tests done.
What medical specialties have you seen?
What is your B12 currently?

The folic acid is not a good idea to take high dose, since it has to be converted this form can cause problems. That said a low dose methylfolate if you can tolerate it may be a good idea if your deficient otherwise.
That all said if something is not really helping then no real need to find new ways to try it, stick with B12 if you continue to need it and you should have done any healing possible within 6-12 months, so beyond that make sure your levels are good and look elsewhere. Also try taking yourself off the supplements one at a time for a month or two each and see if any difference is made, for two reasons, one to see if its helping or not (sometimes what you take no matter how well intentioned can cause problems), and two to see if there is a change that provides a clue that leads to a test or specialist that leads to diagnosis.

Sometimes we need to keep going to new specialists till we find the one who knows what it is, recently i was reading these and have been surprised how abstract some of the conditions are and what was needed to discover them
http://www.washingtonpost.com/sf/national/collection/medical-mysteries/
https://www.nytimes.com/column/diagnosis

That said i don't have any specific ideas at present, but do keep in mind your financial situation, don't burn your money hoping the next supplement or expensive treatment is the cure, or you will run out of money before you get a diagnosis and learn the treatments available.

Hey, thank you for your thoughtful and sensible comments.
I agree-there are pieces of this puzzle which I can't yet see or know about. I've had a few tests done-but only a fraction of what could be.
I've seen a neurologist and a gastroenterologist (I believe my stomach issues sit alongside my other issues and were triggered by some distressing episodes last summer). I've been referred for autonomic testing I believe. However the neurologists are my local hospital didn't believe anything was wrong as my MRIs were more or less clear. They wanted to sign me off with anxiety-although I've not actually been diagnosed with anxiety and have no history of mental illness. I think I am really at risk of running up against a brick wall here

My B12 hasn't been checked recently - it's been in the upper end of the range and I assume is so now too. I've had some improvements in some areas since being on the injections -in joint pain, bladder issues and leg weakness-so I'm happy to continue with injections for some. I have bumped into people online who continue, albeit slowly, to improve 2-3 years after starting daily injections. It's something I'm able to maintain-and given my 31 years as a vegetarian B12 deficiency is not something I've ruled out-although I accept I may have permanent nerve damage and and further improvement may not be possible.

I am going to experiment with switching to folate and lowering my dose. I am going to give my stomach a break next week, the multivitamin aside, as I'm struggling to treat this gastritis. This will be an opportunity to reintroduce supplements gradually, as you suggest.

I do not mind being investigated, tested until an answer is stumbled across. My fear, and a real one from speaking to other patients in the UK, is that you simply get given up on and dismissed with anxiety. There are very limited resources and funds and it can be difficult to get tests done. I've had Lyme disease refused for example. Ferritin, potassium, MMA and B12 injections are other basic and relatively cheap things which were also refused to me and had to be funded myself. I have a list of tests which I would like to have done, but I will think carefully before getting my credit card out. Being reliant on a very flawed health service but not financially independent to partially fund your own tests leaves you in a very vulnerable position. I am concerned about my future.

 

[Alvin2]

Hey, thank you for your thoughtful and sensible comments.
I agree-there are pieces of this puzzle which I can't yet see or know about. I've had a few tests done-but only a fraction of what could be.
I've seen a neurologist and a gastroenterologist (I believe my stomach issues sit alongside my other issues and were triggered by some distressing episodes last summer). I've been referred for autonomic testing I believe. However the neurologists are my local hospital didn't believe anything was wrong as my MRIs were more or less clear. They wanted to sign me off with anxiety-although I've not actually been diagnosed with anxiety and have no history of mental illness. I think I am really at risk of running up against a brick wall here

Events can trigger conditions that were about to erupt but its not likely your symptoms were actually caused by distressing episodes, they just made it erupt. One thing i have found very useful is to get a copy of all my medical records, so i can see what they are skipping (my MRIs showed more then the doc mentioned) and you can take them to new docs when you do, saves time when they ask the result of something. Guard them with your life, don't forget them somewhere and don't let anyone keep your originals.
Docs like to say things are psychosomatic, easy diagnosis, makes them feel important and gets them off the hook. What could be better, except that its usually wrong

My B12 hasn't been checked recently - it's been in the upper end of the range and I assume is so now too. I've had some improvements in some areas since being on the injections -in joint pain, bladder issues and leg weakness-so I'm happy to continue with injections for some. I have bumped into people online who continue, albeit slowly, to improve 2-3 years after starting daily injections. It's something I'm able to maintain-and given my 31 years as a vegetarian B12 deficiency is not something I've ruled out-although I accept I may have permanent nerve damage and and further improvement may not be possible.

I was writing a reply before you replied to me which is below that covers some of this, but you would know in 6 months its going to help, though slow continued improvement can come over time, but you would already know if that was the cause by the rapid progress you should have made already.

I am going to experiment with switching to folate and lowering my dose. I am going to give my stomach a break next week, the multivitamin aside, as I'm struggling to treat this gastritis. This will be an opportunity to reintroduce supplements gradually, as you suggest.

I do not mind being investigated, tested until an answer is stumbled across. My fear, and a real one from speaking to other patients in the UK, is that you simply get given up on and dismissed with anxiety. There are very limited resources and funds and it can be difficult to get tests done. I've had Lyme disease refused for example. Ferritin, potassium, MMA and B12 injections are other basic and relatively cheap things which were also refused to me and had to be funded myself. I have a list of tests which I would like to have done, but I will think carefully before getting my credit card out. Being reliant on a very flawed health service but not financially independent to partially fund your own tests leaves you in a very vulnerable position. I am concerned about my future.

I very much understand, navigating the medical system is a headache for the healthy, for the unhealthy its practically torture (Geneva convention here we come ). Sometimes getting to a new doc who is open minded can work wonders, i often find dealing with anyone who is not on your side is pointless so once a doc is dismissive i drop them and move on. Hopefully your GP is supportive but you need specialists to figure this out, a rheumatologist or endocrinologist might be good ways to go form here. I think endocrinologist may be a good next step.
I know the future is scary, with what i have i hope there is progress made and if not i'm also in real trouble. I do hope what you have is treatable and the best you can do is find the person who can decipher it or find a way to figure out what it is.
I think of it this way, if you do nothing it will progress, but if you work on treating it you have the best chance of getting better, and i hope you do. I am happy to post any ideas i can and the people here are a great bunch who would post any insights they have.

This is the reply i was working on before you replied to my post

A few ideas, have you considered genetic testing? This won't be definitive because not all conditions have been discovered yet and i don't know the laws for or against genetic discrimination where you live but it may be worth investigating
Your sinusitis makes me wonder if there is a mold/fungus issue involved somehow, there was an article recently about this posted on this forum (can someone link it?). I'm not a big fan of the mold/fungus "lobby" but its possible.
Sublingual B12 is as effective as injections for most people, there was a study i read a while back that found 2000mcg daily is as good as an injection (i forget how often the injection). No harm trying it, but if 4-6 months doesn't do much then i don't think B12 is the issue and its a comorbid issue at best. What you can do is get a blood test once you've been off your other forms for 2 months (yes 2 months), start the sublingual methylcobalamin and do another test a month later to see if the levels went up, as a way to know if your absorbing it. You can also get 5000mcg tablets for not very expensive shipped from places, in Canada we can buy it at the health food store, not sure about where you live.
I feel bad suggesting this but what if you ate some meat for a few months to see if there is any change. Please don't be mad at me for suggesting it, i don't have anything against vegetarianism. Also you may want to try a gluten free diet even though you tested negative, some people have found it helps them even though the test showed nothing. If you have no improvement or change then you don't need to continue it (same with eating meat, if you try it for a few months and it does nothing then no need to continue it either) Going gluten free for 3-6 months is hard, i know from experience, but if it is the cause its worth trying.
Your nucleated red blood cells seems to stand out to me, are there known conditions that could cause this, could it be some kind of leukemia? I know, scary
What type of immune testing have you had done? This could be some type of autoimmune condition, but its hard to say.

 

[sharks]

Hi! Not yet-EBV has come up a few times in conversation. I'm not sure how this is tested on the NHS (UK), I was refused a Lyme test for example. It seems quite difficult to get some testing done here. If you have the money, it's often easier and quicker to do things privately-I'm out of work at the moment so it's not an option for me at the moment. Likewise with the mineral status. However due to my stomach issues, I'm certainly malnourished at the moment so my current nutritional status is very different to when I fell ill last year and was able to eat relatively normally. Again, it's something which probably has to be done privately in the UK - and therefore expensive. Sleep is something I'm working on too...

In the US I had to fight, lie, push and annoy to get doctors to test what I needed. I'm finding a lot of brits on this fourm do not push doctors to get the tests you need. I hate to be bad news but you may have to go private to get the help you need. Do not take no for an answer.

 

[Alvin2]

One thing i forgot to mention, everything i suggested do one at a time, so you know what caused the change if there is one. Genetic testing won't matter, and you can try both "diets" at the same time and if it works undo one at a time to see what happens.

 

[Booksellercate]

Events can trigger conditions that were about to erupt but its not likely your symptoms were actually caused by distressing episodes, they just made it erupt. One thing i have found very useful is to get a copy of all my medical records, so i can see what they are skipping (my MRIs showed more then the doc mentioned) and you can take them to new docs when you do, saves time when they ask the result of something. Guard them with your life, don't forget them somewhere and don't let anyone keep your originals.
Docs like to say things are psychosomatic, easy diagnosis, makes them feel important and gets them off the hook. What could be better, except that its usually wrong


I was writing a reply before you replied to me which is below that covers some of this, but you would know in 6 months its going to help, though slow continued improvement can come over time, but you would already know if that was the cause by the rapid progress you should have made already.


I very much understand, navigating the medical system is a headache for the healthy, for the unhealthy its practically torture (Geneva convention here we come ). Sometimes getting to a new doc who is open minded can work wonders, i often find dealing with anyone who is not on your side is pointless so once a doc is dismissive i drop them and move on. Hopefully your GP is supportive but you need specialists to figure this out, a rheumatologist or endocrinologist might be good ways to go form here. I think endocrinologist may be a good next step.
I know the future is scary, with what i have i hope there is progress made and if not i'm also in real trouble. I do hope what you have is treatable and the best you can do is find the person who can decipher it or find a way to figure out what it is.
I think of it this way, if you do nothing it will progress, but if you work on treating it you have the best chance of getting better, and i hope you do. I am happy to post any ideas i can and the people here are a great bunch who would post any insights they have.

This is the reply i was working on before you replied to my post

A few ideas, have you considered genetic testing? This won't be definitive because not all conditions have been discovered yet and i don't know the laws for or against genetic discrimination where you live but it may be worth investigating
Your sinusitis makes me wonder if there is a mold/fungus issue involved somehow, there was an article recently about this posted on this forum (can someone link it?). I'm not a big fan of the mold/fungus "lobby" but its possible.
Sublingual B12 is as effective as injections for most people, there was a study i read a while back that found 2000mcg daily is as good as an injection (i forget how often the injection). No harm trying it, but if 4-6 months doesn't do much then i don't think B12 is the issue and its a comorbid issue at best. What you can do is get a blood test once you've been off your other forms for 2 months (yes 2 months), start the sublingual methylcobalamin and do another test a month later to see if the levels went up, as a way to know if your absorbing it. You can also get 5000mcg tablets for not very expensive shipped from places, in Canada we can buy it at the health food store, not sure about where you live.
I feel bad suggesting this but what if you ate some meat for a few months to see if there is any change. Please don't be mad at me for suggesting it, i don't have anything against vegetarianism. Also you may want to try a gluten free diet even though you tested negative, some people have found it helps them even though the test showed nothing. If you have no improvement or change then you don't need to continue it (same with eating meat, if you try it for a few months and it does nothing then no need to continue it either) Going gluten free for 3-6 months is hard, i know from experience, but if it is the cause its worth trying.
Your nucleated red blood cells seems to stand out to me, are there known conditions that could cause this, could it be some kind of leukemia? I know, scary
What type of immune testing have you had done? This could be some type of autoimmune condition, but its hard to say.

Thank you. I requested seeing an endocrinologist but was declined. The system here works very differently and is not in favour of complex illnesses. I cannot really change my doctor - they are not employed by me or an insurance company. I will find out how much traction others get from writing letters of requests/complaints. I currently cannot get around without a wheelchair due to weakness and lightheadedness/balance issues-so I am severely affected enough to speak loudly, so to speak which might work in my favour.
Are you referring to 23andme Genetic testing? It's something I'd like to do, funds dependent.

The mold/fungus issue is also something I've thought about - especially with chronic sinusitis- but not sure how to test. An organic acids test showed high levels of arabinose, but all other bacterial/yeast markers were relatively low-I don't know if this is enough to suggest a mold/fungus issue is unlikely. Sinus issues do run in my family...

I've managed to get some methylcobalamin sublinguals, I'll figure out how to test this. I admit to being quite reluctant to stop injections when I am still unsure how much a part B12 deficiency is (was) playing. Most people report a regression during the healing process if B12 is stopped.

I've been gluten free for some time-I can't say I've noticed any difference in my health. Meat, I've spent most of my life wanting to eat meat (being a vegetarian child in the 1980s was akin to having an eating disorder then It was neither understood, accepted or accommodated). Unfortunately I simply cannot tolerate the taste or smell. I was always careful to eat yoghurt, milk/fortified nut milks, eggs - although I cannot say with certainty that I had enough. The doctor refused MMA, homocysteine or inactive B12 tests when I first became unwell last March and prior to injections. I really wish I'd known what I do know and I would have paid for the tests myself-which may have answered many of my questions.

In terms of immune testing-simply IgA and IgM (I think!). I showed a weakly positive ANA pattern-again, I requested this was followed up and investigated and was refused. You get the picture-the doctors here are not very helpful and patients have little power. Most are forced to give up and spend their savings/remortgage their house to go private. Are there any tests which might be useful? I can request- or at least know what I should be thinking of in terms of testing.

Thank you

 

[Booksellercate]

In the US I had to fight, lie, push and annoy to get doctors to test what I needed. I'm finding a lot of brits on this fourm do not push doctors to get the tests you need. I hate to be bad news but you may have to go private to get the help you need. Do not take no for an answer.

This is an interesting comment. I think patients here feel they have little power because they do not directly employ or pay for doctors-it's a hugely subsidised system which gives the doctors the 'power'. If I do not like my doctor or what he says, I cannot simply 'fire them' and get a new one. There are issues with getting B12 injections here. Many write letters of complaint which seldom yield results. If a doctor feels he knows best, he has the right to defend his decision and it won't be overturned. I don't know how far you can go in complaining-but you can be 'struck off' from a surgery or doctor which could make your life difficult. Having money is, as always, having power.

 

[caledonia]

Long term vegetarianism is a risk factor for vitamin B12 deficiency. You have many symptoms of B12 deficiency and have improved somewhat with supplementation.

So it seems to me that tweaking your B12 protocol should be beneficial.

-=-=-=

A couple of observations - you're taking 2 injections of B12 per day - one cyano and one hydroxycobalamin.
I assume each injection is 1000mg.

Then you're taking 4.8mg of folic acid.

Over time, this would cause methyl trapping, which would be counter productive as it would inhibit methylation. The amount of B12 should be somewhat higher than folate to avoid methyl trapping. (Let's say 20%.)

My first suggestion would be to either raise B12 or lower folate, or a little of both, until you get to the right ratio.

-=-=-=-=

Then the forms of these vitamins you're taking may not be ideal. It depends on what your genetic SNPs are. (SNP = Single Nucleotide Polymorphism or a mutation from normal function.)

If you have MTHFR, then folic acid doesn't convert well. Depending on your SNPs there could be a partial block of anywhere from 20% to 80%. It will also leave unmetabolized folic acid which can cause cancer.

4.8mg is also quite a high dose. A normal dose is about 400 - 800mcg. If you're a vegetarian, presumably eating lots of vegetables and thus getting lots of vegetable folate, you actually may not need any supplementation - your test showed high (assuming the kind of test you got was accurate for what's in the cells). It may be that B12 is all you need.

For B12, there are also SNPs that can reduce functioning, but I haven't seen as good of research such as "X SNP produces Y% block in functioning" like there is for folic acid. Anyway, the SNPs that control B12 are MTR (B12 intake) and MTRR (B12 recycling). If you have both (like me), it's like a double whammy. Adding other risk factors like vegetarianism and gut absorption issues makes it even worse.

The easiest form for your body to metabolize regardless of SNPs is methylcobalamin, which is an already converted version, so your body doesn't have to do the conversion.

You're having trouble finding injectable methylcobalamin. The information that I have seen is that sublingual B12 is just as effective, if not more effective than injection.

As you seem to be tolerating the folic acid and B12 well and in high amounts, you probably won't have any trouble with switching forms.

My second suggestion would be to switch to a sublingual methylcobalamin (either a liquid that you hold under your tongue or a lozenge that you let dissolve in your mouth) and methylfolate (just in case you have MTHFR).

As far as adenosylcoblamin - that doesn't affect methylation, but it does affect the mitochondria and thus may increase energy. Hydroxycobalamin is converted in the body to methylcobalamin and adenosylcobalamin.

 

[Booksellercate]

Long term vegetarianism is a risk factor for vitamin B12 deficiency. You have many symptoms of B12 deficiency and have improved somewhat with supplementation.

So it seems to me that tweaking your B12 protocol should be beneficial.

-=-=-=

A couple of observations - you're taking 2 injections of B12 per day - one cyano and one hydroxycobalamin.
I assume each injection is 1000mg.

Then you're taking 4.8mg of folic acid.

Over time, this would cause methyl trapping, which would be counter productive as it would inhibit methylation. The amount of B12 should be somewhat higher than folate to avoid methyl trapping. (Let's say 20%.)

My first suggestion would be to either raise B12 or lower folate, or a little of both, until you get to the right ratio.

-=-=-=-=

Then the forms of these vitamins you're taking may not be ideal. It depends on what your genetic SNPs are. (SNP = Single Nucleotide Polymorphism or a mutation from normal function.)

If you have MTHFR, then folic acid doesn't convert well. Depending on your SNPs there could be a partial block of anywhere from 20% to 80%. It will also leave unmetabolized folic acid which can cause cancer.

4.8mg is also quite a high dose. A normal dose is about 400 - 800mcg. If you're a vegetarian, presumably eating lots of vegetables and thus getting lots of vegetable folate, you actually may not need any supplementation - your test showed high (assuming the kind of test you got was accurate for what's in the cells). It may be that B12 is all you need.

For B12, there are also SNPs that can reduce functioning, but I haven't seen as good of research such as "X SNP produces Y% block in functioning" like there is for folic acid. Anyway, the SNPs that control B12 are MTR (B12 intake) and MTRR (B12 recycling). If you have both (like me), it's like a double whammy. Adding other risk factors like vegetarianism and gut absorption issues makes it even worse.

The easiest form for your body to metabolize regardless of SNPs is methylcobalamin, which is an already converted version, so your body doesn't have to do the conversion.

You're having trouble finding injectable methylcobalamin. The information that I have seen is that sublingual B12 is just as effective, if not more effective than injection.

As you seem to be tolerating the folic acid and B12 well and in high amounts, you probably won't have any trouble with switching forms.

My second suggestion would be to switch to a sublingual methylcobalamin (either a liquid that you hold under your tongue or a lozenge that you let dissolve in your mouth) and methylfolate (just in case you have MTHFR).

As far as adenosylcoblamin - that doesn't affect methylation, but it does affect the mitochondria and thus may increase energy. Hydroxycobalamin is converted in the body to methylcobalamin and adenosylcobalamin.

Hey-thanks for replying! I agree-I am not ruling severe longterm B12 deficiency out just yet, although I am looking at other things as well. In 2003 a blood test showed I had macrocytosis - this usually appears in the later stages of a B12 deficiency. Unfortunately it wasn't followed up with a B12 test then. I have often felt 'not right' or as if I should feel better as I am reasonably health, active and eat well. I am wondering if I was limping along with B12 deficiency symptoms for many years which I simply dismissed as modern life tiredness and stress.

The cyanocobalamin is actually 3mg (although I think this dose is too high as my urine occasionally has a pinkish hue some hours after). I have to order in bulk but I think that perhaps I will simply stick to hydroxo once my supply of cyano has finished. I have some methyl sublinguals on the way - some earlier messages also convinced me to reinstate them. Same with folate and I have reduced the dose to 1mg folate from today-I'll see how I fare with that.

I am currently suffering with severe gastric symptoms - so my diet is incomplete. I am struggling to eat.

I admit to knowing nothing of my SNPs - I have had no genetic testing done yet. It's something I'd like to have looked at but I've been off work for a year and have to be very careful with how I allocate my very limited funds.

I feel I should learn a little more about the chemical processes involved in B12...

 

[ryan31337]

Hi @Booksellercate,

I can very enthusiastically recommend a doctor in Orpington that is an absolutely fantastic lead doctor for complex conditions. He is a consultant cardiologist with special interest in OI and POTS, but is also acutely aware of many overlapping issues. After seeing him so much of what I was previously told was 'just ME/CFS' has actually been clarified as individually treatable conditions.

The most encouraging thing (aside from the fact he gives you an hour appointment!) is that he absolutely knows his limitations and will refer onto his select colleagues that understand their specific areas, but still personally takes responsibility for managing you. One of his colleagues, a consultant endocrinologist, is also absolutely fantastic with complex fatigue conditions and fully embraces the significance of B12, MTHFR, EBV, SIBO, MCAS etc. After having seen maybe a dozen run-of-the-mill consultants over 20 years I was gobsmacked to find a 'proper' doctor that appreciates these things and will also champion your cause.

Feel free to message me if you want to know more - thread here has some details too:
http://forums.phoenixrising.me/inde...ll-very-promising-pots-treatment-in-uk.43598/

Hope its helpful,
Ryan