ibcdbwc Posted January 6, 2014 Report Share Posted January 6, 2014 (edited) Sorry- misspelled the title!!! I have spent the last several days reading the "internet" regarding MTHFR and nutritional balancing. It's taking me a bit of time to digest. I know there are some very knowledgable people on this board - LLM in particular i know has extensive knowledge in this area. Would love advice as to where to start? 23&me as first step? Here are a few "abnormalities" : Complains of joint pain, fatigue, facial flushing.. and episodic anxiety OCD, depression et cetera et cetera-- PANDAS/PANS since age 7 (maybe 5). Labs below drawn after "sporadic" occasional multivit supplement that did have alot of B12 500 mcg and 400 mcg folic acid: (but we gave him this only 2 -3 times a week for just a few weeks prior to labs). B12 HIGH (1467) (reference range 211-946) FOLATE Upper levels >19.9 (reference >3 is normal) Ferritin alwasy runs at very bottom or reference range. Chronically swollen nasal turbinates/ sinus infections. TSH was consistently high despite normal T3-T4. Placed on levothryoxine all values have remained stable on medication X 2 years. Anti- adrenal antibody confirmed presence. Normal is less than 1:10. DS level was 1:10. No one seems to think this is a problem including our endocrinologist. Ig E low 2011 bu high (just outside reference range) with last test November 2013. Mild G2 and G3 subclass deficiencies. My question: our psych doc recommends inositol. I don't want to add anything else until I understand more about his MTHFR status. Any clues above? Do we order and wait for 23&me kit despite it's more regulated limitations? Edited January 6, 2014 by ibcdbwc Link to comment Share on other sites More sharing options...
LNN Posted January 6, 2014 Report Share Posted January 6, 2014 If you don't yet know your MTHFR status, I'd vote for doing 23andMe testing. Even tho the FDA has made the co. stop providing its health care reports, those reports weren't particularly useful anyway. The real value is in the raw data, and you're still able to get that. For $99, you get an enormous amount of data, even tho this represents only 1% of your DNA. The FDA isn't questioning the reliability of the raw data. It's saying that when the 23andMe health reports tell people "you have a 1.6x higher chance of developing heart disease" the co. can't validate that risk rate. In fact, when a reporter ran her spit thru two different companies - 23andMe and one other, one told her her risk of xyz disease was 1.6x higher and the other co. put the risk at 1.2x higher. Both companies agreed that her 123 gene had a heterozygous mutation (so they agreed on the raw data) but the FDA fears people will go into a tizzy and take drastic steps (i.e. mastectomies) based on that report that says your risk is 1.6x. The raw data is what you're after and there doesn't seem to be an issue in that arena. That said, do realize that genetic testing does open some potential for issues securing life insurance - NOT health insurance. In the same way having a history of heart attacks puts you into a higher risk pool with higher life insurance premiums, so could having certain genetic tests results. It's possible that in the future, life insurance companies will ask not just about history, but about genetics. But then, they may require the tests at some point in the future for all applicants, whether you get one done now or not. I just mention it as something to be aware of. Ok - so if you don't yet know your status, and you decide to do 23andMe testing, here are the steps http://latitudes.org/forums/index.php?showtopic=3928&page=2 (see Post# 18). From your lab results, it wouldn't be surprising if you have an MTHFR issue and the labs are showing the results of a folate trap (folic acid being consumed but the body not being able to convert it into usable methylfolate or to use methyB12 to convert homocysteine into methionine and then into ATP for cell energy). If you have high homocysteine, you may also have a CBS gene mutation to work around. But don't guess! I assumed my DD got the mutation from me and started taking the same supplements she needed and it turns out I needed the opposite. Her supps ended up making me depressed and cranky. When I switched to the ones right for me, I felt worlds better. So do the test. For the other issues, they may or may not be affected by MTHFR but could also be a result of other genetic/methylation issues. MY DD has MTHFR +/- and also had high TSH (in the 5 range - nothing hugely out of whack) without any other elevated thyroid numbers. Treating MTHFR did not change this. But doing small steps like hydration, CoQ10, and addressing some nutritional deficiencies (choline and some minerals) has helped. I've not found any quick fix for adrenals. But...you can take your 23andMe raw data and look for genes associated with adrenal diseases and then see if those antibodies warrant further investigation. On the inositol - my friend just told me it's a methyl donor. So it'd be best to know your tolerance for methyl donors, and 23andMe will help you figure this out. (You need to look at MTHFR, COMT, VDR Taq, MTR, MTRR and MAO-A genes to get a handle on this question). Personally, I didn't find inositol all that helpful for either kid - one with MTHFR who needs methyl donors and and one who doesn't tolerate methyl donors. BUT - treating my DDs MTHFR issue made an enormous improvement in her mood issues - anxiety, bipolar mood cycling, irrational anger, depression...So once you find and treat methylation issues, you may find the inositol unnecessary anyway. Link to comment Share on other sites More sharing options...
ibcdbwc Posted January 6, 2014 Author Report Share Posted January 6, 2014 THANK YOU!!!!!!! Link to comment Share on other sites More sharing options...
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