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Post by flanagan on Aug 13, 2012 14:28:58 GMT -5
Was just curious if anyone has tried the below listed site for their HFI test. It's one of those private, for profit, outfits that test for a slew of things from a saliva sample you mail to them. $300 US, it's amazing how the price has dropped on genetics the last couple years. I don't know if anybody else has had a hard time getting blood drawn for the HFI test, but my brother hit a brick wall trying to get it drawn and sent, even with a doctors order. My endocrinologist actually had to through a bit of a tantrum with the phlebotomist to get her to draw the blood for my test. I don't know what it's like in other countries, but so many doctors in the US use a 3rd party service for blood draws, and because the HFI labs are small, they are not on an "approved" list for these 3rd party clinics. The clinics keep requesting a "blood draw kit", the labs say they don't provide a "kit", and you end up stuck in limbo. This might be a better option for some people. www.23andme.com/store/cart/ |
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Post by colormist on Aug 16, 2012 10:34:56 GMT -5
This is really awesome, Flanagan. I updated my blog with the link. Not only is this test CHEAPER than the other options out there, but then you get a huge (and frequently updated) list of all the OTHER things that are wrong with you. I'm very tempted. If I had more disposable income, I'd definitely want to run the test. Here's the list of diseases and conditions it tests for: www.23andme.com/health/all/Really, really cool. |
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Post by Tammy on Aug 16, 2012 10:42:27 GMT -5
I am also sooooo tempted for Regina. It's been so many years since they did the blood test I'm wondering if her mutation would show up now. (Hers was negative but DX with liver biopsy)
I see the BRCA gene is also listed there. I'll have to muse this over a little.
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Post by colormist on Aug 16, 2012 11:56:18 GMT -5
As a side note for those of us stuck on US health insurance, I would definitely research whether or not this company shares your results with your insurance company (or even hospitals). I know Obamacare has passed and (here very soon) we can't be denied coverage based on our preexisting conditions, but I'd be happier if that healthcare bill were in a more stable condition.
Of course if the company doesn't share the results with anyone but yourself, then you don't need to worry as much.
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Post by charlie on Aug 16, 2012 14:18:18 GMT -5
Certainly sounds a good option financially, but just wonder if there are storage problems if the sample has to travel a distance and maybe that is why they use blood.
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Post by flanagan on Aug 24, 2012 15:42:04 GMT -5
For those considering it, you may want to wait till my brother tries it out. He is my older brother with near identical taste, so it is almost certain that he has HFI. The mutations will be the most common ones, so this will be a good test to see if they are accurate. If they are accurate, then I'm going to do it just for the overall report. Colormist - I saw on your blog that you only listed two labs for HFI testing in the US. I believe there are a handful. The hospital/lab that did my testing was only $200, I can't recall the name at the moment, but it is posted in another thread in here. Possibly the cheapest test, even including paying blood draw out of pocket. They do not take insurance at all for the HFI test. The person you were responding too said they were in the great lakes area. That's kind of big, but if they are near Chicago, I can fully recommend my endocrinologist. He has at least one HFI patient  Found the name of the lab - University Children's Genetics Laboratory in California |
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Post by colormist on Aug 27, 2012 9:30:37 GMT -5
Thanks Flanagan! I updated that blog posting with the California lab!
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Post by lisamaryt on Mar 5, 2014 9:41:35 GMT -5
Hello-I will be seeing a genetic counselor soon regarding my +/+ ALDOB (HFI) 23andme/Livewello genetic report. I have some +/+ snps at genes associated with Glycogen storage disease also. Did anyone else get the 23and me test done? If yes, do you know any other genes that are possibly involved? I only had to pay $99 and it was all through the mail. It's been very helpful. I have been on a strict no fruit, few vegetable FAILSAFE/RPAH program for 4 years but was eating maple syrup so I understand why I've still been having health challenges. I have switched to rice syrup & will be trying sorghum syrup. I have backed off from eating sprouted lentils and have reintroduced oats & rice instead. I think I'm OK with iceberg lettuce & celery juice but now suspect everything.
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Post by charlie on Mar 5, 2014 15:52:35 GMT -5
Basically if you have HFI everything you have listed may cause reactions. Rice and oats should be ok. There are several who have used 23andme but so far I don't think anyone has had a positive result. Try cutting out all syrups, all fruit and most veg for a time then slowly challenge with a few safe items.
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Post by flanagan on Mar 10, 2014 11:28:14 GMT -5
DenverJay had the 23andMe Test and it indicated possible for HFI. I know they had some issues recently with federal reguations and I'm not sure if they are allowed to report on disease indicators like HFI anymore. If anyone is considering it they should check to see what is still offered on the panel.
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Post by lisamaryt on May 30, 2014 7:37:28 GMT -5
FYI - I used the 23andme raw data to generate a "sandbox" report from livewello.com/23andme. It showed: gene ALDOB, rs1800546, minor allele C, genotype CC, phenotype +/+. I then consulted with a UCSD genetic counselor who wrote in my medical record, "there was a possibility of being a homozygote for the Ala149Pro mutation but 23and me is not accredited." |
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