Any one need B complex supplements? Any RH negative issues?
Hi there, just replied to your other post I have weird B things going on, which lead to me getting my dan tested. My B12, B6, B2 and sometimes folic acid gets really high without relevant supplementing (just a low dosed multi) I am homozygous for those two SNPs. On the two big MTHFR SNP’s I am only hetero on MTHFR A1298C rs1805087 This one is not associated with high homocysteine. Did you run the whole B12 METABOLISM template? Any more variations there?
My B12 has been getting higher for years and I’ve always thought that it must have been too good to be true as I have symptoms of a deficiency. Even my active B12 is way to high, so I figured it can’t get into the cells so there must be a cellular deficiency and B6 probably too. I haven’t start supplementing. What are your experiences?
Neural tube defects, spherocytosis, and pernicious anemia run hard in my family (all genetically and MD confirmed). I need methylated b12. Regular B12 does not work for me. I found this out through MD genetic testing and the results matched with 23andMe and Genos. Try to find a Hematologist specializing in this sort of thing. The librarian at a teaching hospital can find article written by staff members in your local teaching hospital, and you can try that doctor… Patient Liason can help you find a qualified physician at a teaching hospital. Just call the main number and ask for Patient Liason. Call NIH and they can match you geographically with MDs that specialize in these things. They are very good, and they pick up the phone. Large foundations often have a list of physicians that specialize in a particular disorder, and rare or underdiagnosed disorders. They may have help lines as well, where you can talk to a real human that has the same thing that you have. People who have been through it can be very helpful.
Thanks for your reply. Did you find these ones you listed related to your issues? I noticed they are the FUT2 group, which are quite common and may be related to gut issues but not sure if they explain any B trouble for me. I’m homozygous in all 3, and found that’s usually the case, they sort of go together… I’m in Europe and have seen an internist for this in july. She told me to stop the supplements (multi) as she thought they were the likely cause. I’m supposed to get everything tested through my GP after 3 months and if I still have symptoms (currently attributed to B6 toxicity) or levels have not gone down significantly he should refer me back. She is not especially good with these issues, but I know from research where this hospital is mentioned there is knowledge there
I already suspected methylation issues, that’s why I had this done and am now trying to find a dr who can help me with this in my area, which is very hard, even in this big city I live in. It’s just too ‘new’ apparently… Regular drs in hospitals disregard the entire MTHFR stuff, unless there’s ‘clinical relevance’ in the form of blood results, but mine are currently not even relevant enough, lol. Only some nutritionists in my country have taken courses to help with this stuff. The trouble is insurance doesn’t cover them and most of them got their knowledge through a weekend course. You’ve probably run into a similar amount of drs that have hardly any knowledge of your genetic issues and still scorn you for doing your own research. I can’t help but wonder if it’s worth the money and energy to travel to find someone with ‘some’ knowledge of this if I can just follow advice from US drs like Yasko etc. Maybe start gently with some glutathion and later ad in methylated B’s…I just hope methylated versions of the folate, b12, B6 may help me, also with neurotransmitter, autonomic and muscle issues.
What muscle issues? I have an ion channelopathy that would paralyse me. I had to take lethal doses of potassium. It seems to have calmed down, but I was mainlining it for a couple of years. Get your electrolytes tested, and read the results yourself. Borderline results can have significance.
In my family, folic acid deficiency caused spina bifida and chiari. B12 caused spherocytosis and pernicious anemia. I was able to go to pediatritions as an adult. They often more knowledgable rhan internists. If taking supplements makes you feel bad, it probably is not the right supplement. Go cruise around the biggest hospital you have, go to patient services, the medical library, the genetics department. Start asking questions. You may be surprised at the amount of information you can get. This does not work over the phone.
Wow that sounds seriously debilitating. Did you get quick relieve from the other symptoms wit the Methylated versions of you B-vitamins?
I do have some trouble with electrolytes, keeping my levels in check. Magnesium always low, supplementing orally does not seem to do much even with 600-800 mg elementary mag from -malate, taurate etc. After an epsom bath I feel great, muscle wise, but it doesn’t last long. My potassium was low after it was tested in ER after an episode with tachycardia, seizures, hypothermia etc. Not much was found then, but after a couple of IV bags with electrolytes I magically recovered… I can not keep my temp up, that’s a real problem. I have Raynouds, but this is different. As soon as I get cold and it can be just from sitting still in a room that is just 2 degrees too cold for me, I start peeing insane amounts, probably lose electrolytes too and get dizzy from low BP within hours, especially when I warm up.
D tends to be low and I have to drink a lot and take lots of salt for low blood pressure issues. You need B6 to get magnesium into the cells and enough mag to take up potassium and D, so since my B6 is doing weird things this made some sense to me. Did the Pyruviate B6 panel, probably came back mostly yellow and red too, like all my panels, but no clue how relevant this is. Will see GP soon to retest B-levels, together with mag etc…
My muscle issues are tightness (leading to subluxations and contractures)and pain with and after exercise (prolonged) fatigue and loss of strength.
Not really for the B vitamins… I could not tolerate the shots. I just kind of gave up. The Effer-K potassium with magnesium really helped. Effer-C over the counter fizzy packet drinks help. Runners use it for electrolyte depletion. I have to take a lot of salt. Do you know what kind of EDS that you have?
I don’t seem to have an issue with my b12 levels, but genetically I have the potential to have problems related to multiple vitamins… such as b12, folate, b6, vitamin A and possibly vitamin D (which I do have an issue with becoming too low). I suppose something would have to trigger it.
So you’re not taking methylated B6 as p5p and methylfolate? Methylcobalamin can also be taken sublingually. Yes I meet the clinical criteria for Classic so that’s my diagnosis for now., Also had many low impact fractures so they looked at both col1 and col5 with OI overlap syndrome in mind. The defect was not found, but they did find other defects on those genes, the meaning of those is uncertain. I’m due for skin biopsy as soon as they have an electron microscope at my geneticists office…
I stopped all medical intervention 2 years ago for a variety of reasons. I feel like I have pretty much done everything that can be done at this point. I do go to medical conventions and seminars. That and participating in research studies is where I have gotten most of my information. Losartan may help you. It helped me. It is used off label for Marfans, Loeys Dietz and Ehlers Danlos. Look up Dr. Hal Dietz, Johns Hopkins. I was on it for a couple of years. Try a TENS unit for pain, and a heavy duty massager like they use in physical therapy. I have been able to work out some pretty bad kinks with both of those. The side effects of the drug treatments I tried were horrific. Dr. Teals has cheap magnesium shower soap that I adore. It really helps.
I am also heterozygous for the A1298C, but have homozygous mutation for MTRR and MTHFS if I’m remembering correctly. I don’t have my data in front of me at the moment. But, when I read your post saying that you have weird issues with your serum levels of B6, B12, and folic acid, I swear I have these same exact issues! The doctors always assured me that my levels were “great”… except for the fact that I’m mostly a vegetarian and have been for 15 years and that excluded eggs and dairy as well. After much research into the methylation pathway and associated cycles (like Trans-sulfuration), I discovered that I’ve had a functional deficiency, as I’m sure you found as well. These B vitamins have just been pooling in our blood, unused, functional deficiency. Sigh… mind if I ask what programs you ran your Raw genetic data through? And what you’re doing now to treat your issues? Thanks!
Yes, I have severe vitamin b12 deficiency and take prescription vitamin b12 by injection.
Check lithium orotate supplementation to improve absorption of B12 into cells.
I have high levels too! I supplement with activated forms of B vitamins. I take hydroxocobalamin. II think you are right we are not getting the vitamins into the cells or it just cannot methylate. I do feel better taking the vitamins and avoid folic acid that is in processed foods.
I have high B12 and Folate levels as well and I have been taking MethylB12 for a few years. My symptoms would suggest deficiency in these vitamins yet my levels are high. I am also hetero for hemachromatosis (excessive iron storage) I went to a Hematologist for iron deficiency anemia(symptomatic,very ill,ferritin level was a 5) They started me on iron infusions which I could not handle because of the side effects and fast build up of iron in my system. My Hematologist described my blood as a bit wacky due to gene mutations,so the iron infusions were discontinued. There is malabsorption occurring in my body, but pinpointing the cause is a journey of future discovery. slight_smile:
My B12 drops to practically nothing if I don’t take a supplement. I take nature’s balance sublingual and it works great. The injection is unbelievably painful when all your muscles are super tight and the muscles grip the needle! Also a screwed and sensitive nervous system doesn’t help the pain on that one. Never again lol.
Have you read the B12 section and B12 methylaion sections of the book “Genetic Testing Defining Your Path to a Personalized Health Plan”. The book covers health issues and how to avoid them. The book can go along with a genetic report too.