Jump to content

High Homocysteine Level???


Recommended Posts

Anyone have this with normal to high B12 and otherwise normal blood levels involving cardiovascular issues?

How if at all is it related to the big picture of POTS? All I could find was info about IBD, GI issues, heart rate issues and peripheral nerve issues....all of which I have but I don't have heart disease or any other signs of it and am not malnourished or taking medication. I do have very stretchy ligaments and skin.

Has anyone figured out how this may or may not play a role?

Thanks

Link to comment
Share on other sites

I have it. Very high homocysteine, and already tested positive for MTHFR gene mutation C677T homozygous (=inherited from both parents). 10-15% of the caucasian population have this mutation.

I have high B12, (missing enzymes can't break it down!), normal folic acid. AND: I am almost sure this is the underlying cause of my small fiber neuropathy - which is again connected to POTS!

I am personally convinced, this is an important part of the while picture, it's even on the root level!

(I also don't have any cardiovascular issues - but IBD, benigne heart rate problems and the neuropathy, just like you)...

Link to comment
Share on other sites

WOW so weird! Is there anyway you would be able to remember a timeline or any more information. I have a big tests coming up on Thursday and next Monday. I have been chasing this issue for so many years.

I also have high good cholesterol...which is weird but I read about something about it not being processed and somehow oxidizing....I could not make sense of it. I have low bad cholesterol.

What is your prognosis? What do you do to help your situation? Iv read so many scary things about this situation and I don't know what to believe.

I did not know it was so prevalent. I have not had gene testing yet but if I am armed with good info, I can request it and get it.

Link to comment
Share on other sites

I also thought it was very weird that I have way too much B12. I thought it was water soluble and the body would take what it needed and discard the rest....so when my numbers came back high, I thought...how can this be. It must not be processed. So Why then do "they" say that taking B vitamins is protective against the damaging effects? B6 is supposed to be more beneficial...so Iv read. Im really just beginning to start making sense of what I am reading. There is not much variance in the information I can find. I read that not much attention is given to this because there is no pharmaceutical investment in studies. Is that true?

What do you use to deal with the symptoms? What is your quality of life? What is your life expected to be like? You don't have to answer these questions if it is too depressing or causes you anxiety.

Link to comment
Share on other sites

As others have suggested, I suspect it's related to MTHFR mutation. The C677T mutation seems to be related more to high homocystiene levels than the A1298T mutation.

I have seen one EDS specialist from South America speculate that this mutation may also play a role in the EDS component so many of us have. Since these genes affect how we utilize B vitamins, especially folic acid, he theorizes that just as folic acid deficiencies in pregnancy can cause spina bifida, our mutations may somehow affect connective tissue development.

Depending on ethnic background, up to 40% of a specific population may have this mutation. However, my ME/CFS doc says that 95% of his patients have these mutations so while it may not be THE cause of our symptoms, he feels like it's a big player in the whole picture. Treating it with supplements has certainly improved many of my symptoms.

The whole methylation cycle (which is what the MTHFR mutation affects) is incredibly complicated but there's a lot of info out there on it if you google it.

Your PCP can order the basic tests for the two mutations I've noted above or you can do something like 23 & Me for more complete gene data. You then download your raw data from 23 & Me to one of several sites like Genetic Genie, Promethius, MTHFR support or another site which will then give you more info on the genes you have that may be playing a role in this issue.

Link to comment
Share on other sites

Yep mine is high, I have the mthfr gene defect. Currently experimenting with methylation but have some side effects. Going to see a doc who specialises in it next month.

Link to comment
Share on other sites

After hearing all of this, I have been crying...from joy, frustration, sadness, ....everything...

Sorry, I have been trying to interact but something happened to my account after my computer got a virus. My Hotmail and everything was compromised....so is my ability to use this site for some reason.

Taking in all the info and researching...hoping the helpful monitors will figure it out.

Link to comment
Share on other sites

So as far as symptoms go....I know they are in my mothers side of the family but I did not get to know my father.

Recently, I got a heart rate watch and have been wildly surprised. I took a few days off of eating "tons" of salt and my resting heart rate went from the 80's to over 100 laying down. Yes, I work out and am slim.

So how do these really fit together? I get that it is somehow the ROOT cause...but how does not being able to break down stuff, maybe mast cell and POTS...nerves being ruined...GI total mess work with this gene abnormality? Iv been reading but I don't see the whole picture yet.

What I "see" is a bunch of partially broken down proteins and stuff floating around ramming into healthy cells, breaking up the end pieces that allow for DNA to zipper up correctly upon regeneration....thus wreaking havoc. Somehow B6 and folate are able to buffer this process but B12 seems to not be processed.

For some reason I feel like I should be an ocean mammal with all the salt and water I need! Ever want to be a whale with a polka dotted tail? And I feel like a rubbery octopus.

The pieces are slowly coming together. Long day of testing tomorrow.

Thanks

Link to comment
Share on other sites

OK. These sites are useful. Its a good place to start looking into genetic testing now that my blood work all points in this direction.

Dizzyallie, will you keep me posted on what you find out next month?

This last year has been long and I am tired. My son got a bone infection and had a PICC line to treat with broad spectrum antibiotics. This led to him either getting or flaring for the first time with crohns. He is on enteral nutrition through a GJ tube and went into remission quickly but that is not the "end" of course. It has been a year of reading, studying, advocating, running around, constant care giving. I feel like this situation with me is a bit of an answered prayer of course, but I am already exhausted....spent....I don't know if I can dive in like I did for him and still have to do for him. One good thing is that his needs and mine are not much different as far as eating, rest, stress level, holding on to hope, taking things day by day. I guess my hope is that I can set a great example for him but just getting up everyday with a smile, give hugs and show him how to keep moving. If you stop moving in a forward direction, you quickly slide backwards.

Link to comment
Share on other sites

Sure will sunshine girl. I just hope I can handle side effects of the tabs. It is absolutely tiring I agree. It overwhelms me even though I'm in my 12th year being sick.

Link to comment
Share on other sites

Dizzyallie,

After reading your med history, I have a few questions. Did the brain stem dysfunction cause the POTS? What occurred other than IBS that your large bowel was removed? I ask because I have major digestive issues and my son has crohns. I also had a very bad TBI when I was a child. What do you mean by a low GI diet. Are you saying low residue?

Not trying to get off topic....

Went for neuro testing yesterday. The cattle prod was excruciating. This time, when they put the needles in me, they stabbed them in far. The sheet was all bloody. Im still hurting. The tilt table test, sweat and blowing on things was not too bad. I had not laid flat for months so I almost immediately had to urinate but was all hooked up. I slept for 22 hours, nearly straight, after getting home. I wont know the results for about a month.

I told the neuro about my high levels as he had not had time to review them yet. I had forgotten the acronym for the genetic issue so I said " it looks like mother but without vowels and an F in it"....he knew exactly what I was talking about. I think that is a good sign! Who would guess from my description! But I had just been stabbed a few too many times. Ha Ha...

Link to comment
Share on other sites

Hey there, well I'm not sure. I think the brain stem dysfunction came from the Cfs/me to be honest but I might be wrong. Sorry you have bowel issues too. Mine was removed due to blockages, motility disorder, prolapse and pain. I could barely tolerate food and was living on laxettes to use bowels. Was awful. I don't regret having it out at all. Sadly though I've had the CFS, pots, dyes autonomic, dizziness as a result I think. It triggered it all I guess. Sorry your son has chrons. A friend of mine has it too. Awful thing. By low Gi it's just slowly sustained blood sugar level regulating foods. I do it for my cfs plus I'm borderline diabetic. So it's eating like you have diabetes. Foods that sustain you longer eg porridge, bananas, etc. I've had to cut out packaged foods, sugars etc that cause glucose to be all over the place.

I hope you can get somewhere with your symptoms too. and that they can offer you some treatment options. All the mthfr stuff is soo confusing!

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...