Homocysteine testing

[Cinders66]

Has anyone tested for homocysteine? Is it thought worth doing, ie an area likely to show abnormalities in ME/CFS or is it more people have resorted to trying to find anything themselves because of the lack of research to get us better via standard means.
I wondered if I might have high level being bedridden etc. i read about it years ago in association with vitamin B & gene mutations. I had thought that there would be research published one way or the other by now But there’s not. So I’m striking out alone. Any advice regarding testing , treatments and the genetics mutation relation gratefully received. I’m in the UK where there’s no medical Advice or support Beyond pacing. Thanks.

 

[anni66]

My daughter had homocysteine testing. I argued the case as we have a family history of heart issues and MTHFR SNPs.

It is not a " normal" GP test so we had to get it to the hospital lab within 30mins of blood draw to get centrifuges.

It came back low normal, so looks like MTR and MTRR SNPs are balancing out .

I believe you can do it from a fingerpri ck test with private labs

 

[Cinders66]

My daughter had homocysteine testing. I argued the case as we have a family history of heart issues and MTHFR SNPs.

It is not a " normal" GP test so we had to get it to the hospital lab within 30mins of blood draw to get centrifuges.

It came back low normal, so looks like MTR and MTRR SNPs are balancing out .

I believe you can do it from a fingerpri ck test with private labs

thanks, yes it was a finger prick test I was looking at, I wouldn’t even attempt through the nhs for me. I suppose just for general health it might be worth checking Out.

 

[heapsreal]

Has anyone tested for homocysteine? Is it thought worth doing, ie an area likely to show abnormalities in ME/CFS or is it more people have resorted to trying to find anything themselves because of the lack of research to get us better via standard means.
I wondered if I might have high level being bedridden etc. i read about it years ago in association with vitamin B & gene mutations. I had thought that there would be research published one way or the other by now But there’s not. So I’m striking out alone. Any advice regarding testing , treatments and the genetics mutation relation gratefully received. I’m in the UK where there’s no medical Advice or support Beyond pacing. Thanks.

Yes had my homocysteine tested last year i think. It was sky high. I think its a sign of inflammation, supposedly a risk factor for heart attacks. At the same time i had tested fasting glucose and insulin levels as well as cholesterol which all were good.

After this test i started using a homocysteine formula from vitacost which has good levels of b6, b12 and folate as well as a few other thing. I took it for a few months and didnt notice any symptoms changes. Recently bought more of this formula and will look at testing my homocysteine levels again after being on it for awhile.

 

[Pyrrhus]

After this test i started using a homocysteine formula from vitacost which has good levels of b6, b12 and folate as well as a few other thing.

Yes, high homocysteine is a classic sign of low B12, folate, and B6, so it would be interesting to see if your homocysteine levels have come down after taking those supplements...

 

[heapsreal]

Yes, high homocysteine is a classic sign of low B12, folate, and B6, so it would be interesting to see if your homocysteine levels have come down after taking those supplements...

Ive had multiple b12 tests over the years. At one point my b12 levels were way way over the range lol. Ive probably got at diet that generally would cover most vitamins for a healthy non cfs person but cfs who knows???? I will try to remember to post my results here when i test homocysteine in a month or so's time. It would be interesting to know what levels most cfsers have, maybe an indirect marker of inflammation in many of us.

Ive never thought to actually look into it but i use n-acetyl-cysteine nac so i wonder if it can give a high reading or a negative high reading????

 

[heapsreal]

As for nac, a quick google shows it generally lowers homocysteine. Struth!! Im up the creek without a paddle. I guess it cpuld be worse or maybe nac and other antioxidants are protecting me in some way, i hope🤞

 

[Pyrrhus]

At one point my b12 levels were way way over the range lol.

A lot of people get this. Sometimes it's because they are deficient in glutathione, so the B12 can't be used in the cells, and the B12 ends up just recirculating in the blood. Sometimes it's because the person is taking cyano-B12 supplements but their metabolism can not convert it into the main blood form of hydroxo-B12, so the cyano-B12 ends up just recirculating in the blood. There are probably many other possible explanations as well.

It would be interesting to know what levels most cfsers have, maybe an indirect marker of inflammation in many of us.

There's one paper that might help answer your question:
https://pubmed.ncbi.nlm.nih.gov/9310111/
Note that it's common to find high homocysteine in the cerebrospinal fluid, with normal levels in the blood.

Ive never thought to actually look into it but i use n-acetyl-cysteine nac so i wonder if it can give a high reading or a negative high reading????

N-acetyl-cysteine (NAC) is used to boost glutathione (GSH) levels in the body. Note that brain glutathione may be reduced in ME patients:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3896084/

So, taking NAC to boost glutathione may actually lower the B12 levels in the blood, since glutathione allows for proper utilization of B12 inside the cell:
https://pubmed.ncbi.nlm.nih.gov/15606130/
https://www.researchgate.net/public...diate_in_the_formation_of_cobalamin_coenzymes

But the actual effect of NAC on blood levels of B12 may turn out to be more complicated than that.

Struth!!

One of these days, I will try to learn to understand the Ozzie language.

 

[heapsreal]

A lot of people get this. Sometimes it's because they are deficient in glutathione, so the B12 can't be used in the cells, and the B12 ends up just recirculating in the blood. Sometimes it's because the person is taking cyano-B12 supplements but their metabolism can not convert it into the main blood form of hydroxo-B12, so the cyano-B12 ends up just recirculating in the blood. There are probably many other possible explanations as well.



There's one paper that might help answer your question:
https://pubmed.ncbi.nlm.nih.gov/9310111/
Note that it's common to find high homocysteine in the cerebrospinal fluid, with normal levels in the blood.



N-acetyl-cysteine (NAC) is used to boost glutathione (GSH) levels in the body. Note that brain glutathione may be reduced in ME patients:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3896084/

So, taking NAC to boost glutathione may actually lower the B12 levels in the blood, since glutathione allows for proper utilization of B12 inside the cell:
https://pubmed.ncbi.nlm.nih.gov/15606130/
https://www.researchgate.net/public...diate_in_the_formation_of_cobalamin_coenzymes

But the actual effect of NAC on blood levels of B12 may turn out to be more complicated than that.



One of these days, I will try to learn to understand the Ozzie language.

Hydroxycobalamine shots i used, it was around 5000mcg 3 times a week at one stage. I think that was a Dr Cheney thing.
I watched an interesting video where a dr/cardiologist went over a patients blood work. When it came to homocysteine he basically said it a somewhat broad inflammatory marker. He didnt seem to concerned about it being a cardiac risk factor but then again he had more precise cardiac testing such as coronary artery calcium scan and a few others.
So in relation to cfs it could be just showing inflammation from cfs or possible cardiac risk i guess??

 

[Pyrrhus]

Hydroxycobalamine shots i used, it was around 5000mcg 3 times a week at one stage.

Well now, that would explain your very high B12 blood levels better than any of my explanations!

So in relation to cfs it could be just showing inflammation from cfs or possible cardiac risk i guess??

Elevated homocysteine has indeed been linked to inflammation, but it's not specific for cardiac inflammation. It could be any type of inflammation.

If you have elevated homocysteine in the cerebrospinal fluid (CSF), but not in the blood, then the inflammation is probably in the nervous system. That is what was seen in this study:
https://pubmed.ncbi.nlm.nih.gov/9310111/

Hope this helps.

 

[heapsreal]

Well now, that would explain your very high B12 blood levels better than any of my explanations!



Elevated homocysteine has indeed been linked to inflammation, but it's not specific for cardiac inflammation. It could be any type of inflammation.

If you have elevated homocysteine in the cerebrospinal fluid (CSF), but not in the blood, then the inflammation is probably in the nervous system. That is what was seen in this study:
https://pubmed.ncbi.nlm.nih.gov/9310111/

Hope this helps.

Inflammation in the nervous system makes sense plus its hard for many medications to cross the blood brain barrier eg my thoughts are the ability to get into the nervous system and exert effects on viruses like cmv etc instead we wait for them to reactivate and entre the blood stream outside of the cns where antivirals can work, probably why for those that antivirals help it can take a long time to lower viral load. If i recall correctly neuroinflammation can make the bloid brain barrier harder for drugs/substances to cross.
So do you have a cure for neuroinflammation because that would be awesome 😉
Thanks for that study link too🍻

 

[Okian]

I had this test done a few weeks ago, and for me personally was in the normal range...

 

[Cinders66]

Thanks for the replies, I think that i Will investigate, even if it doesn’t help the ME. DID ANYTHING get published on the B 12 folate study, that possibly OMF were funding a few years ago?

 

[Pyrrhus]

eg my thoughts are the ability to get into the nervous system and exert effects on viruses like cmv etc instead we wait for them to reactivate and entre the blood stream outside of the cns where antivirals can work

Yes, the ability to cross the blood-brain-barrier is an issue with some antivirals. But many direct antivirals that target herpesviruses (Valtrex, Valcyte, Famvir) are what's called "nucleoside analogues", and nucleoside analogues tend to cross the blood-brain-barrier fairly easily.

So do you have a cure for neuroinflammation because that would be awesome 😉

First we have to figure out what's causing the neuroinflammation, and then we have to fix that. Remember that neuroinflammation is only a symptom of a disease, it is not the disease itself.

Hope this helps.