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NeverLikedRollercoasters

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About NeverLikedRollercoasters

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  1. I'll be seeing my primary this week and will ask for a full panel. He's on my side so he probably wont give me a hassle. Thank you @Bebygirl. I have been tested for cancers of the marrow / bone, and any other genetic mutations my hematologist recommended. All came back clean. Also, only one...
  2. Thank you again Posterboy. Are you a bot, by chance (hehe just kidding). But you seem pretty knowledgeable. I will look into that. I'm assuming part of my fatigue issue is the iron overload as well, but who knows. No problem for me.. call me a sissy if you will but I've never been able...
  3. Hey guys, just finally got a call from my doc. The wait doesn't help the anxiety at all. Anyhow, confirmed deficient in thiamine and start 100mg daily. Also, I've tested positive for two variants of H63D genotypes and with evidence, I have hemochromatosis (still not out of range ferritin though)...
  4. @Posterboy, @knitty kitty, @cyclinglady I just got my B1 results from quest. Haven't spoke to my doctor yet, but I just went in to get the genetic test for Hemochromatosis. Anyhow, I'm deficient in B1. Don't think this is the Erythrocite Transketolase test though as Posterboy mentioned...
  5. Posterboy, you are filled with info. Thank you. I still don't have answers, but I think you're right about the B1 test not being correct. However, just got a call from my hematologist. My 2nd Iron test was still abnormal and NOW he wants to do the genetic test for hemochromatosis. I suspect I should...
  6. I really think it is. I did have it biopsied when it was inflamed back in Jan but I'm not convinced they did it right. I watched her use the 'core tool' right on top of one of the blisters. I've since read that it needs to be next to it. Pathologist came back with dyshidrotic eczema. Strange it...
  7. I haven't tried that one. Last year, this was one of the first things I noticed popping up in me. Quite a while before I started having horrible GI issues and I was still eating gluten. Right around the time my GI issues really ramped up, it really blew up and was pretty much a constant rash for...
  8. Posterboy, too kind. Thank you for all the info. I'll hit the links later on. Just for reference, this picture was taken last year the first time it occurred about 3-4 weeks after when all the blisters popped. I posted this in a thread under the DH section a few days back too. It only comes about...
  9. Wow Posterboy, thanks for all of that. It's quite over my head. I did try to pronounce that test properly to my doctor and I'm sure he knew what I was saying, however, I don't know exactly what he ordered. All I know is i read on Quests site prior to going to the doc that there's specific handling...
  10. I have not had a full panel test for vit/min. Over the course of the past year, I've had tons of tests. None of them include B1/Thiamine. I have only been tested for iron, B12, and vitamin d (I was deficient in this one). Like I said, seemed as though they never tested B1 before in the hematologist...
  11. I certainly will. Like Knitty Kitty, if I can help someone else who is having as much of a hard time as me getting any kind of diagnosis, I will be happy to help. This is complete utter hell not knowing what is wrong when I get so sick and doctors just shrug and/or not order the proper tests at the...
  12. So, no to the hemochromatosis since my ferritin is in check. He ordered the iron test again in case the labs were faulty. He didn't order the genetic test because the labs don't show it, but he agreed getting the thiamine checked. Funny thing was the nurse didn't quite know how to handle the thiamine...
  13. Yeah, I think I will drop it for now (but I miss all the things so much). I've always wanted to get good at cooking so this has kind of forced me to. I rather enjoy it really.
  14. Thank you. I already dropped dairy because that immediately gives me explosive D. The soy, I was vegetarian for almost 20 years until 2 years ago. Thought the tofu was screwing with me originally, but then the beer too. So, I'm not sure about soy, although about 4 weeks ago, I cooked with certified...