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Unexpected test results... I would be grateful for some guidance

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Bluebell, Jun 28, 2013.

  1. Ema

    Ema Senior Member

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    Your thyroid antibodies aren't awful but they are starting to creep up. Low levels of antibodies very commonly turn into full on autoimmune disease over time. Especially in the face of inflammation and infection. The immune system gets overreactive in many cases and reacts to everything.

    Here's an essay you might find interesting as well as a podcast on the Cyrex testing:

    http://undergroundwellness.com/glutathione-autoimmune-connection-part-one/

    http://www.blogtalkradio.com/underg...n-sensitivity-and-celiac-disease-with-dr-thom

    Ema
  2. rlc

    rlc Senior Member

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    Hi Bluebell, re

    These sleep patterns would almost certainly cause altered Cortisol tests. They are designed for people who follow what are called whether rightly or wrongly normal sleep patterns. Awake around 7-8 am sleep 10-11 pm.

    ACTH stimulation test is different it involves being injected by an endo with synthetic ACTH and then having the bodies responses to it measured by blood tests it is the gold standard test for adrenal problems.

    However the ACTH blood test is useful, on this page is a chart that shows the different adrenal tests and what the results mean see http://en.wikipedia.org/wiki/Adrenal_insufficiency if you can get these tests done it will very much help you to get an idea if you have a adrenal problem or not.

    Yes that is the calcium test, it is normal range so from what I have read on sites like Vitamin D council etc, you are ok to get as much sun as possible without getting burned and take Vit D3, if you do experience any bad symptoms with this, it would be a good idea to recheck calcium just in case.

    It looks like you have already found most of the info on your nail problems. There is a differential diagnosis for beau lines here http://www.fpnotebook.com/Derm/Nails/BLns.htm

    Unfortunately they are not nail conditions that lead to an easy diagnosis, but they do show that you are unwell. I recommend printing some of the information that shows beau lines are caused by severe illness and pictures of beau lines. And take it with you to doctors, it may help to get them to take you seriously.

    All the best
  3. caledonia

    caledonia

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    I think it's wise to go gluten free in any case.



    The best test is the Metametrix GI Effects stool test. I wouldn't bother with any other test. $400 though.

    You can take some extra magnesium to get your bowels moving better. The more you take, the looser your bowels get, so you can make things exactly how you like by adjusting the amount. Any form except magnesium oxide is ok. Mag oxide is cheap, but doesn't absorb well. So - magnesium glycinate, taurate, citrate, etc. are ok.

    If you stools are white, that's a liver problem. I have a friend with Hep. C. who said this happened to her. I don't think clay-like is the same as white though. Mine were like that and I think that's more a reflection of diet?

    Floaters are due to fat in the stools. I take quite large amounts of fish oil and that causes this.
    Valentijn likes this.
  4. Bluebell

    Bluebell Senior Member

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    My private loans that were taken out with a co-signer could not be discharged -- on the small chance that I would be able to get them included in a bankruptcy, the loans in their entirety would be placed on the shoulders of the co-signer, which I would not want to happen.
    Valentijn likes this.
  5. Bluebell

    Bluebell Senior Member

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    This is good to know - that an un-challenged ACTH level can be so helpful in figuring out what is happening.

    It looks, from the chart in this entry http://en.wikipedia.org/wiki/Adrenal_insufficiency, that:
    The first situation you describe, Addison's, with high ACTH and low cortisol, would also be accompanied by high DHEA-s, which I do not have.
    The second situation you describe could possibly fit me, since I have low DHEA-s, and don't yet know my cortisol or ACTH levels -- and it looks as if, in secondary insufficiency, both cortisol and ACTH would be low, so maybe I ought to just test one of them to see how it looks -- and, as you say, testing for cortisol first might be the way to go.

    Thank you for mentioning that they have coupons. I did get a marketing email from them (after my results were back) that I have not opened yet, and it may contain that coupon. For my first order from them, I found a coupon code on retailmenot.com which I think was for 15%.
    For the other site I got tests from last week, labsdirect or directlabs, the best discount I could find was 10% off. I got 2 of my tests last week at a better price from them, compared to privatemdlabs' pricing. Checking both sites for their prices on every test I was thinking of taking saved me about $45, so it was worth it. I also looked at a couple of other test-ordering sites, but privatemdlabs seemed to be consistently less expensive than most, for most things.
  6. Bluebell

    Bluebell Senior Member

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    That's one of my problems with getting good doses of direct sunlight, especially in the summertime - time to redness is about 5-10 minutes! :redface: I am pretty pale.
  7. Bluebell

    Bluebell Senior Member

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    aaaaauuuuuggggghhhhh. :aghhh:

    But I know, I know, it's a good idea. :)

    I don't actually think I could handle going full-fledged gluten-free now, for a couple of reasons.

    However, the good news is that I have really cut down on my wheat intake in the last few months; where possible, I have switched to products made with the older wheat varieties like spelt; and, in the last month I have avoided all food items which might have artificial folic acid in them (which so many things do, to comply with the US law that grain items have to be fortified with it) -- and I think this has made a positive difference.

    This recommendation is good to have! I'll put it on my "maybe/future" test list.

    I've been taking a reasonable amount of magnesium citrate for the past couple of years, 500 mg I think, with no appreciable increase in bowel frequency/looseness. I noticed that this much magnesium was above the recommended daily upper level for adult women (which I realize isn't a maximum that is set-in-stone or valid for all people), and at the same time I was about to lower my calcium citrate amount from about 500 mg to 250 mg, so I reduced the magnesium down to about 375 mg. I've taken as much as 750 mg in a day to see if it helped my bowel speed, and it didn't. Same goes for Vitamin C -- occasional doses of 2000 mg didn't seem to speed things up. Though I didn't try these higher doses continuously over a period of time. Bulk-forming things like psyllium just gum me up and are counter-productive.

    This is a light grey-brown (less brown, more grey), and the consistency is like clay. It's not like that always, but frequently.
    Seems to be a problem with not having enough bile where it's needed in the system. "The liver releases bile salts into the stool, giving it a normal brown color. You may have clay-colored stools if you have a liver infection that reduces bile production, or if the flow of bile out of the liver is blocked." http://www.nlm.nih.gov/medlineplus/ency/article/003129.htm
    http://ibdcrohns.about.com/od/otherdigestivediseases/a/palestool.htm

    While some sources say it's mainly about fats (such as: http://www.askanaturopath.com/faqs/floating-stools/p/212), I have also seen other sources that say it's not due to fat, but to gas in the stool:

    "Many things can cause floating stools. Most of the time, floating stools are due to what you eat. A change in your diet may cause an increase in gas. Increased gas in the stool allows it to float. Floating stools may also happen if you have a gastrointestinal infection. Floating, greasy stools that are foul smelling may be due to severe malabsorption, especially if you are losing weight. Malabsorption means your body is not properly absorbing nutrients. Most floating stools are not caused by an increase in the fat content of the stool." http://www.nlm.nih.gov/medlineplus/ency/article/003128.htm

    "Floating stools are seen in a variety of different situations. Most are diet-related, or occur during a gastrointestinal infection. A change in diet can lead to an increase in the amount of gas produced by the bacteria found in the (healthy) gastrointestinal tract....
    One wrong idea is that floating stools are caused by an increase in the fat content of the stool. In fact, it is increased gas in the stool that makes it less dense and allows it to float.
    Increased levels of nutrients in the stool that have not been absorbed by the GI tract supply the normal bacteria that live in the gut. These bacteria, in turn, produce more gas. This results in more gas-rich stools that float.
    ...Dietary changes, diarrhea, and malabsorption can cause floating stools."
    http://health.nytimes.com/health/guides/symptoms/stools-floating/overview.html

    In my case, I only have diarrhea about once every 5 years, so it's not due to that. My diet doesn't change that much (except I have reduced ingestion of mainstream wheat in the last few months, as mentioned above). I have not taken any supplements for the last 8 weeks, and still have incidents of floating, so it's not due to fish oil. The floaters aren't particularly "greasy and foul-smelling", but kind of dryish-looking.

    Also, in just the last year, about once per month, I'll notice that a 5-inch strand of cloudy-but-mainly-clear mucus (maybe 1/3rd inch in diameter) comes out during a bowel movement. (I know, it's yucky - sorry!) I tried to look it up - seems to be a sloughing off of the lining of the intestines?

    For most of my life, until the last few years, my poo was in the shape of thick, heavy, dense logs with cracks on the surface (for example, 1.5 in x 6 in in size) (type 3 on Bristol Stool Chart: http://en.wikipedia.org/wiki/Bristol_Stool_Scale), but in the last few years it has been separate balls the size of walnuts, and usually each ball is entirely separate (type 1 on Bristol Chart), but sometimes they appear in the bowl partially-melded together (Bristol type 2). Some balls float, some don't. I am so sorry if this is way too much information, haha! :zippit:
  8. Bluebell

    Bluebell Senior Member

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    I would like to ask the folks who are reading my thread and who have had success with methylation -- in terms of reducing their thyroid medications and just general healing -- what type of protocol have you followed?
    Yasko's, Rich van K's, or?
  9. caledonia

    caledonia

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    Take more. 1500mg worked good for me for a long time. The reason is, if you have weak adrenals, you'll be leaking out electrolytes like crazy. So the amounts for normal people do not apply here. You will need to constantly replenish magnesium and/or potassium and sodium. A little vitamin C with this helps too.

    I do a homemade electrolyte formula of magnesium glycinate powder, salt and BioEnergyC (vitamin C buffered with ribose) all mixed into water and drunk down four times a day. I need a lot more at night before bed, so I can get through the night without my feet twitching and waking me up. Note: I'm one of the few people who don't need potassium, most people seem to need it.

    Note, once you start methylation, the need for magnesium, and or potassium will greatly increase even more. This is theorized to be due to cell rebuilding. After starting methylation, I actually require more magnesium than my bowels can tolerate (3300mg!). I'm trying out a new brand that's supposed to absorb sublingually and not bother your bowels.

    If you're not supplementing with these electrolytes, your constipation will likely get much worse (not good).

    =-=-=-==-=-=

    Clay colored stools = liver infection or flow of bile is blocked
    Floaters = gas in stool due to GI infection

    I wouldn't be surprised that I had some or all of these. I've seen mucous from time to time too. My Nutreval results show problems in all 3 GI areas - malabsorption, dysbiosis, and fungal infection. You don't have to have diarrhea to have a GI infection. There are many bugs which apparently don't cause much in the way of overt symptoms. The GI Effects test is next on my list.
  10. caledonia

    caledonia

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    I guess you could call mine "Yasko lite" at it's core, but I borrow ideas from everyone - Rich, Yasko, Heartfixer, Freddd, Ben Lynch, stuff people post on here - whatever works.
  11. Bluebell

    Bluebell Senior Member

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    Caledonia, thank you for describing what ideas you are following.

    ------
    ...I thought I recognized a little Lynch influence in your electrolyte replenishment beverage! :)

    I have sensitive teeth, damaged enamel, and exposed nerves/receding gums, so at my dentist's recommendation, I stay away from having citrus/acidic stuff in my mouth more than for brief periods at mealtimes (and then I rinse).

    A lot of my enamel damage occurred in the 15 years that I drank diet soda -- just 2 cans per per day, but I sipped them slowly throughout the day, and in the last 5 years of that, I added insult to injury by adding a slice of lime to it!

    I have to be careful with sublingual tablets (so many have citric acid and other ingredients that can harm enamel) and I avoid chewable vitamins or vitamin c powder that is not put into a capsule.

    ------
    Since I have not taken anything in 8 weeks (in order to have unaffected blood test samples last week), I am about to design my new supplement regime, and I will experiment with the magnesium amount. I can certainly go higher than the recommended daily maximum and see how it goes.

    I'll definitely add in extra potassium, because I sometimes get heart palpitations/flutters, and I think hypokalemia has something to do with it.

    First, I'll go slowly with the amounts of everything, because it's a lot to throw at the tummy. I think my digestion is weak anyway, and I wonder how much I actually absorb.

    The good thing is, with my ferritin at 53 now, I will scale back on my iron supps, and that should help everything else, because iron binds to so much (like some other minerals) before they are absorbed, and is otherwise hard on the system, I have read.

    Even before I had heard of B12 deficiency (which is what I thought had caused my sudden vision loss) and thence found this website this year, I was taking a relatively hefty amount of supplements -- nothing crazy or beyond the pale though, just stuff with good research behind it -- and the number of tablets one has to get down in a day really adds up, especially if not taking multi-vitamin/multi-minerals (because the amounts and forms of some of the individual ingredients in those are never quite what one wishes to take).

    As a first step, this week, I need to get the basics going, the vitamins, minerals, and fish oil at a moderate amount. This is what most people say to do, lay a good foundation -- Lynch, Rich van K, etc.

    I think I'll feel better when this gets into my system, and hopefully my now-alarming hair loss may slow down when I get a decent amount of all the B vitamins in me.

    One would think that it should be a quick and easy thing to just start taking some vitamins, but it's kind of a big production for me that I am dreading starting, because for my supplements, for many years I have kept a pretty detailed Excel sheet of everything (brand, price paid, cost per day/week/month/year, expiration date, doses, time of day to take, days off a week, days off a month, what not to take with what, reactions, separate sheets with experts' recommendations on what to take each day, etc.) and I'll need to scrap my old file and make a new one. But I have made a nice cup of Earl Grey and am going to start that in a few minutes. :sleep:

    [...I guess I can now attribute some of my thoroughness and perfectionism to my recently-uncovered, tendency-to-Aspergers MTHFR compound heterozygosity! :nerd:]
  12. Bluebell

    Bluebell Senior Member

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    caledonia,

    I am procrastinating about working on my new supplements Excel sheet I was reading through Ben Lynch's site this evening and I came across this short discussion thread, which features contributions by a Caledonia (whom I assume is you), and I found it quite helpful in detailing in a brief way how a couple of the main methylation protocols start out, and explaining the reasons for what you decided on doing:
    http://mthfr.net/forums/topic/methylation-pathways-vs-genomic-testing/

    (If you do not wish for me to link to your comments on a different site, let me know and I'll delete this!)
  13. greenshots

    greenshots Senior Member

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    I'll add a few thoughts here with the big disclaimer that I've studied this stuff or years but am by no means an expert. If you are really a complete ACAT, I would be surprised but would like to know if any others have that complete defect. I think this would really be a problem for your mitochondria and gut. I would think Yasko would be interested, too. I would go on that forum and ask them if they've ever seen this before. Just know that if you tell them you have a 23&me test they'll probably ignore it or blame that and not take it seriously.

    I've just learned about the nervous system stuff in the last 9mos or so but you sound REALLY PNS or type B and should not be on a vegetarian diet. I have a link below by bigger brains who have researched this area but PNS people have to have good meat like organic, grass fed beef and more. Just the diet alone can change everything for you. PNS types are prone to low thyroid, low sex hormones, low energy and motivation and so much more.

    I don't think the little cbs a360a is a big deal. It seems like you need B12 but hydroxy seems to be better for adults. Since I am SNS dominant, I know that I really need 5MTF but don't need as much b12, at least in theory. If you look at my MTRR defects it would seem I do need it but I only tolerate low doses right now. Anyway, it seems like it would be opposite for you. You'd need alotta b-12 but less 5MTF. There's a whole list but since I'm SNS, I only know most of those. I do know that since zinc, vit e, and choline are stimulating for my type, they might be very good basics to get for your type as would things for ACAT---if its really +\+ and not -/- like I'm wondering about---like co q 10, vit e, carnitine, zinc, adeno b12, bile salts, digestive enzymes. There are more but I don't keep up on the ACAT as well and its also about the best ones for your nervous type. Please read gestalt's link below because I think it would really help you.
  14. Bluebell

    Bluebell Senior Member

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    greenshots,

    Thank you for your thoughts!

    ACAT homozygous for the minor allele appears to be relatively rare, between 1 and 2% in most populations.

    If that impairs the mitochondria and the gut, I would not be surprised, because my mitochondria and gut have always seemed to struggle, from since I was a baby.

    ----
    Did I get the right rs number for the ACAT1-02? In all the threads and sources that I looked at when I was building my chart of my methylation-related genetic results, it seemed that the correct rs number for Yasko's ACAT was rs3741049. Please let me know if I'm wrong on that.

    ----
    Someone posted what Geneticgenie says about ACAT1-02, and I noted it down in my Excel sheet:
    "ACAT1-02 (acetyl coenzyme A acetyltransferase) plays a role lipid metabolism and energy generation. It can also deplete B12. As with CBS, Dr. Yasko views this as a first priority mutation. Going by Yasko's clinical experience, she says to address them first if you have elevated iron on a UEE, elevated iron on a UEE test, Short Chain Fatty Acid (SCFA) imbalances on a CSA test, suberic acid, beta hydroxyl methylglutaric acid, or other ketone and fatty acid metabolites imbalances on a MAP or OAT test; or if there are severe gut issues or muscle weakness (which can be related to aluminum retention)". She says people with ACAT or SHMT are more likely to experience gut dysbiosis. Because of disrupted flora, microbes may have an affinity for and retain toxic metals. Stabilizing the gut environment is very important."

    ----
    For the last 2 years, I have not been vegetarian - I have eaten meat on most days (not a whole lot of meat, but I think that it's enough).

    For my health, I do not plan to return to vegetarianism, even though I do not enjoy eating meat.

    I only feel okay about eating good-quality, organic-if-possible, poor-creature-was-moderately-familiar-with-being-outdoors meat and dairy (if I can find it, and where I presently live, that is not at all easy -- so every 2 months, I get a ride with someone to go to a store about 70 miles away where it's available.)

    ---
    Before I learned about any of this stuff, I had already been taking your recommendations of "co q 10, vit e, carnitine, zinc", and I plan to put them in my new supplement plan. I am going to go with the bioavailable ubiquinol form of CoQ10 now, instead of the cheaper form ubiquinone, which I had been taking.

    Last month, in anticipation of going on some sort of methylation program after my blood tests were completed, I bought a large container of methylcobalamin which I guess I shouldn't take now, so I will see about getting the hydroxoB12 form that is in Rich's protocol - my understanding is that this is converted in the body to both methylB12 and adenoB12 as needed.

    I also already bought some digestive enzymes for my new program, but not bile salts (which I'm not familiar with, so I will look into those). My bile activity appears to be in terrible shape, so if those could help it, that would be great.

    ----
    To double-check for you about my results on ACAT1-02, rs 3741049 -- I am now copying and pasting straight from my account on 23andme:


    "GenePosition---SNP---Versions---Bluebell's Genotype
    [​IMG] ACAT1---108009927---rs3741049---A or G---AA "

    For this SNP, 23andme reports it opposite to the way the government reports it (using A or G instead of C or T), so they show the customer how their genotype will show up on the dbSNP website. They say that mine will be:
    "dbSNP Orientation: Minus
    dbSNP Genotype: TT"

    Then, to look at that SNP on the government's site, go to:

    http://www.ncbi.nlm.nih.gov/SNP/snp_ref.cgi?rs=rs3741049
    The main allele here is C:
    Ancestral Allele: C

    For TT incidence in all populations known, scroll down on that page to the color bars and look for the blue color.

    23andme says my ancestry background is mainly Northern European with a sprinkling of West-central European and really nothing else [aside from 1/1000th Native American] -- that is just the maternal side, but it should be similar for my paternal side, and looking at the color bars for tested European populations, TT is pretty unusual, something like 0.018.
    ------

    Would there be anything that I should take for my homozygous BHMTs (2, 4, and 8 are +/+)?
  15. PhoenixBurger

    PhoenixBurger Senior Member

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    I just want to say that this website, this forum, and the people who frequent it, are awesome, and this thread is living proof of that. Totally amazed at all the help, and time invested, not to mention the incredible medical knowledge.

    -PB-
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  16. Bluebell

    Bluebell Senior Member

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    I absolutely agree that many wonderful Phoenix Rising folks have been so great in advising me, on this thread and on my genetic results thread!

    :balloons: :hug: :balloons:
  17. greenshots

    greenshots Senior Member

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    You seem to have a good grasp bluebell. I would run your results through geneticgenie.com and get the nice colored Yasko type sheet. This will help clarify that ACAT and if you are ++ I can tell you that no matter what anyone else says, I've seen kids and adults with this defect in my old biomed group and it was always a b%!ch on mito function and gut so I really think its a big one that will someday make the regular roster on other panels. I also think if anyone could tolerate the short cut support, its probably you. I disagree with Yasko on the idea that treating BHMT takes the strain off detox, at least it didn't in my case but then this is the kind of stuff I think nervous system plays a big part. I was miserable but then again, this stuff increases adrenalin and mine was already way too primed. My doc has said she's also seen this alott and told me to poke a hole in the PS complex and take a blob of that to start. Boy did I notice that! So maybe someone more PNS can take a blob and slowly up it and do well. The short version is PS complex and DHA, which I take in low doses.

    You need b12 so wo knows, maybe you could do the methyl b12 in low dose and get by. I wouldn't start it before the ACAT and ahortcut stuff though. Its also true that hydroxy needs to be converted into active types like adeno and methyl but its much easier to take. Maybe start with a really low dose of that and try to add a tad of methyl B12 once the others are covered. I'd also be sure to have a good B complex and some basic minerals and amino acids, but avoid chelated types since theyre excitotoxic. If your PNS then your body won't like alotta mag or potassium but others should be good.
  18. Bluebell

    Bluebell Senior Member

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    I'm pretty sure that I have the ACAT result right, because I carefully followed Geneticgenie's and others' instructions about the rs number that Yasko uses.

    It's not too unusual (at least for me -- I'm a frequent outlier in life :cool:) to be in a 2% minority of the population for something --- for example, 23andme tells me that I am in the top 2% of the global population for having the most Neanderthal (not totally human) genes! :alien:

    As for the red/yellow/green chart, when I got my 23andme results, I made my own colored sheet (after taking lots of notes about what others had said were the rs numbers which Yasko was talking about - I compared data from at least 5 different sources on the internet, including Geneticgenie and the chart that was their inspiration to create their program, and all of them agreed on the rs numbers).

    I'll attach that colorful chart as an attachment to this post here. For readability, I only included the +/+ and +/- results in this version of the chart. (My full Excel sheet has my allele results on 45 SNPs so far.)

    Regarding my VDR-Taq: You are probably aware that there is controversy about how Yasko treats the VDR-Taq result -- she calls the majority's VDR-Taq alleles a red-colored +/+, whereas if her notation followed the typical pattern of designating the majority result to be the benign one, they would be called a green -/-. I personally have no idea if the more-typical human VDR-Taq allele is problematic, but it's the one that I have, and Yasko would call mine a red +/+ in her system, so I included it at the bottom of my chart here (but still I decided to be dogmatically bloodyminded in marking it a green -/- because my result matches the alleles of the majority).

    I didn't get the quasi-official Geneticgenie chart done because I would rather not release my entire 23andme data to any strangers [beyond 23andme (and whatever govt facility in Utah or whereever that is capturing everyone's internet communications!)], non-profit or otherwise, fellow member of PhoenixRising or not, so I decided at the outset not to run my data through Promethease, GeneticGenie, etc. -- at least while I was still new to all this stuff. I may do it later.
    (I certainly crossed one personal privacy hurdle yesterday by going into such detail about my BMs in a public forum, goodness gracious! :redface: )

    Attached Files:

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  19. greenshots

    greenshots Senior Member

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    Well I'd say you've got some real problems with a full ACAT and full BHMTs! That is a big deal and will really be based on how well you get thru detox. I'm a wuss! I had so many metals pouring out with just methylation stuff that I stopped testing. Take the BHMT's, I don't do well but I have slowly but surely increased the PS complex, DHA, and I really do well on SAMe. If you have a BHMT 8 and you start working on this you're likely to get adrenalin surges so SAMe helped my MTHFR A1298C and the nor epi surges. I still think the basics are in order so bile salts, b complex, and the stuff I mentioned above. But from what I've seen in my biomed group, Yasko is right, you'll have to address that ACAT.
  20. sianrecovery

    sianrecovery Senior Member

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    Hi Bluebell

    In response to your question a few posts back - I went on Rich's protocol, and it has helped enormously. The other thing that has made the most difference to me is taking T3. I completely take Ema's points about infection and your current situation, and needing to tread carefully. You might get some benefit from posting on the thyroidpatientadvocacy forum as well. They are by and large very pro thyroid meds, but it does have some good people commenting with knowledge of thyroid autoimmunity as well. They have a good resource section to the website.
    In terms of affordability, and managing health on your own, I benefitted from doing the Donna Eden energy medicine exercise. Most are on you tube or in her book Energy Medicine. It got me out of bed on days when I didn't think I could function. And I didn't have to pay anyone anything for it. It was certainly not a cure, and only effective in tandem with many other conventional interventions, but it did help.

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