Guest guest Posted December 8, 2005 Report Share Posted December 8, 2005 In a message dated 12/7/2005 6:02:26 P.M. Eastern Standard Time, kristinaqls@... writes: So for us, deafness wasn't going to kill her and we had bigger fish to fry. a, Welcome to the list. Our Ian is now 15 but his hearing loss was not detected until he was about 7. His is a progressive bilateral conductive loss now in the moderate range. One set of doctors say he will quite likely be profoundly deaf by the time he is an adult. Another says he might become profoundly deaf, or the loss could stop at any point. Only time will tell who's right. We also were dealing with other medical issues when Ian's hearing loss was detected. The range of tests he went through was staggering and the possibility of a life threatening diagnosis was enough to keep me awake nights. So once we had the final diagnosis (which was not life threatening) and were also informed about his hearing loss, the hearing loss seemed like small potatoes. My thought was, okay, I can deal with this. Of course, learning about and dealing with the hearing loss was tough because we had no support locally. He was far too old for EI services and there is no local D/HOH program. We are a hearing family and knew nothing about deafness, or signing or anything at all really. Our Ian is now 15, a mainstreamed high school sophomore in our local district. He's really just a typical boy who happens to have bright blue hearing aids and red-white-blue swirled molds. How marvelous for you and your daughter that you knew sign! We are just learning now. We have a tutor who comes once. She's a native signer -- the child of deaf parents. We're really enjoying learning and find ourselves using it often. At a scout event this past weekend, my hearing daughter and I had a conversation from across a crowded room. The kids around her were surprised and thought it was cool. (grin) She gives us grief during the classes, a classic sibling rivalry thing, but then when we're out an about, she uses it. Once again -- welcome to the list, Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2010 Report Share Posted June 23, 2010 Hmmm. Sorry – I thought I had. Hi Lee - I believe it would be best if you opened a new thread for your introduction. It is very comfusing when different subjects appear at one thread. Ah..and welcome > > Hi, everyone. I’m new here and thought I’d toss in an introduction. I’m 54 > and was diagnosed with CFS in 2003, although I’ve had problems with chronic > fatigue since I was 18 and had a mystery illness that was diagnosed as > mononucleosis, even though the test was not conclusive. I just never got > better from it. Personally, I think the fatigue, and other related problems > (joint and muscle pain, brain fog, dry skin, weight gain, hair loss, cold > intolerance, etc., etc., etc.), are really due to a thyroid problem, and > have thought that for a long time. > > I have a new doctor after my doctor of 20 years retired. After discussing > my CFS diagnosis, she wants to send me to an endocrinologist, and I have an > appointment in July. We ran a long list of thyroid tests – every one I > could find in doing my own research on hypothyroidism – and they all came > back within the normal range. The only thing I could find in my reading > that might indicate a problem is the ratio of T3 and Free T3 to Reverse T3, > which is why I joined this group. My total T3 was 1.17, Free T3 was 3.27, > and Reverse T3 was 203. > > The other subject I keep running into is adrenal fatigue. However, the > websites where I’ve found information on adrenal fatigue all appear to want > to sell you things, so I kind of distrust the information I’m getting there. > > I did a search of this group’s posts and saw a number of posts on > CFS/Fibromyalgia (which I think are really the same thing), but I’d love to > pick all of your brains about the intersection of CFS/Fibro, adrenal issues > and thyroid issues. Any thoughts? > > Thanks so much. > > Lee > Si Hoc Legere Scis Nimium Eruditionis Habes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2010 Report Share Posted June 23, 2010 Hmmm. Sorry – I thought I had. Hi Lee - I believe it would be best if you opened a new thread for your introduction. It is very comfusing when different subjects appear at one thread. Ah..and welcome > > Hi, everyone. I’m new here and thought I’d toss in an introduction. I’m 54 > and was diagnosed with CFS in 2003, although I’ve had problems with chronic > fatigue since I was 18 and had a mystery illness that was diagnosed as > mononucleosis, even though the test was not conclusive. I just never got > better from it. Personally, I think the fatigue, and other related problems > (joint and muscle pain, brain fog, dry skin, weight gain, hair loss, cold > intolerance, etc., etc., etc.), are really due to a thyroid problem, and > have thought that for a long time. > > I have a new doctor after my doctor of 20 years retired. After discussing > my CFS diagnosis, she wants to send me to an endocrinologist, and I have an > appointment in July. We ran a long list of thyroid tests – every one I > could find in doing my own research on hypothyroidism – and they all came > back within the normal range. The only thing I could find in my reading > that might indicate a problem is the ratio of T3 and Free T3 to Reverse T3, > which is why I joined this group. My total T3 was 1.17, Free T3 was 3.27, > and Reverse T3 was 203. > > The other subject I keep running into is adrenal fatigue. However, the > websites where I’ve found information on adrenal fatigue all appear to want > to sell you things, so I kind of distrust the information I’m getting there. > > I did a search of this group’s posts and saw a number of posts on > CFS/Fibromyalgia (which I think are really the same thing), but I’d love to > pick all of your brains about the intersection of CFS/Fibro, adrenal issues > and thyroid issues. Any thoughts? > > Thanks so much. > > Lee > Si Hoc Legere Scis Nimium Eruditionis Habes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2010 Report Share Posted June 23, 2010 Hmmm. Sorry – I thought I had. Hi Lee - I believe it would be best if you opened a new thread for your introduction. It is very comfusing when different subjects appear at one thread. Ah..and welcome > > Hi, everyone. I’m new here and thought I’d toss in an introduction. I’m 54 > and was diagnosed with CFS in 2003, although I’ve had problems with chronic > fatigue since I was 18 and had a mystery illness that was diagnosed as > mononucleosis, even though the test was not conclusive. I just never got > better from it. Personally, I think the fatigue, and other related problems > (joint and muscle pain, brain fog, dry skin, weight gain, hair loss, cold > intolerance, etc., etc., etc.), are really due to a thyroid problem, and > have thought that for a long time. > > I have a new doctor after my doctor of 20 years retired. After discussing > my CFS diagnosis, she wants to send me to an endocrinologist, and I have an > appointment in July. We ran a long list of thyroid tests – every one I > could find in doing my own research on hypothyroidism – and they all came > back within the normal range. The only thing I could find in my reading > that might indicate a problem is the ratio of T3 and Free T3 to Reverse T3, > which is why I joined this group. My total T3 was 1.17, Free T3 was 3.27, > and Reverse T3 was 203. > > The other subject I keep running into is adrenal fatigue. However, the > websites where I’ve found information on adrenal fatigue all appear to want > to sell you things, so I kind of distrust the information I’m getting there. > > I did a search of this group’s posts and saw a number of posts on > CFS/Fibromyalgia (which I think are really the same thing), but I’d love to > pick all of your brains about the intersection of CFS/Fibro, adrenal issues > and thyroid issues. Any thoughts? > > Thanks so much. > > Lee > Si Hoc Legere Scis Nimium Eruditionis Habes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2010 Report Share Posted June 23, 2010 Thanks. My doctor is pretty good about being open to ideas. She’s told me that if I think at all that the endo is blowing me off, I need to call her and she’ll send me to someone else. So I’m feeling pretty good about being in her hands. And you’ve pretty much confirmed what I’ve learned over all these years. The new idea in this for me is low cortisol. My doctor actually thought my cortisol might be high and tested it. It came out not high, but I don’t remember if it was in range or low. Thanks for sharing all this. hi lee, welcome:D!! you came to the right place think cfs and fibro are generic blanket diagnoses for the same systemic condition... if you have low thyroid, then you have all of the things you mentioned... and you would be " chronically fatigued " ... and have aches and pains. if you have tired out adrenal glands, then you might be low cortisol, and that is the oil for our joint.... then you would have joint aches and pains....like fibroM, plus an array of other symptoms. they have to put these fancy names on it to market and sell to it. its all related and cant be separated into different specific conditions, each treated separately. each person is unique and came to their current state due to a conglomeration of various influences from within and without. you seem to have figured that out, so congrats you also seem to have a doctor that will acknowledge the thyroid connection to how you are feeling, and thats more than a lot of people can say. but dont put all your money on the endo you find for all your answers... stick to your gut and how YOUR BODY feels. you have to be the one to live in it at the end of the day. anyway, this stuff can be overwhelming, but i hope it is encouraging to know you can have a say and can feel better because of it. welcome again;) hope this offers encouragement > > Hi, everyone. I’m new here and thought I’d toss in an introduction. I’m 54 > and was diagnosed with CFS in 2003, although I’ve had problems with chronic > fatigue since I was 18 and had a mystery illness that was diagnosed as > mononucleosis, even though the test was not conclusive. I just never got > better from it. Personally, I think the fatigue, and other related problems > (joint and muscle pain, brain fog, dry skin, weight gain, hair loss, cold > intolerance, etc., etc., etc.), are really due to a thyroid problem, and > have thought that for a long time. > > I have a new doctor after my doctor of 20 years retired. After discussing > my CFS diagnosis, she wants to send me to an endocrinologist, and I have an > appointment in July. We ran a long list of thyroid tests – every one I > could find in doing my own research on hypothyroidism – and they all came > back within the normal range. The only thing I could find in my reading > that might indicate a problem is the ratio of T3 and Free T3 to Reverse T3, > which is why I joined this group. My total T3 was 1.17, Free T3 was 3.27, > and Reverse T3 was 203. > > The other subject I keep running into is adrenal fatigue. However, the > websites where I’ve found information on adrenal fatigue all appear to want > to sell you things, so I kind of distrust the information I’m getting there. > > I did a search of this group’s posts and saw a number of posts on > CFS/Fibromyalgia (which I think are really the same thing), but I’d love to > pick all of your brains about the intersection of CFS/Fibro, adrenal issues > and thyroid issues. Any thoughts? > > Thanks so much. > > Lee > Si Hoc Legere Scis Nimium Eruditionis Habes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2010 Report Share Posted June 23, 2010 Thanks. My doctor is pretty good about being open to ideas. She’s told me that if I think at all that the endo is blowing me off, I need to call her and she’ll send me to someone else. So I’m feeling pretty good about being in her hands. And you’ve pretty much confirmed what I’ve learned over all these years. The new idea in this for me is low cortisol. My doctor actually thought my cortisol might be high and tested it. It came out not high, but I don’t remember if it was in range or low. Thanks for sharing all this. hi lee, welcome:D!! you came to the right place think cfs and fibro are generic blanket diagnoses for the same systemic condition... if you have low thyroid, then you have all of the things you mentioned... and you would be " chronically fatigued " ... and have aches and pains. if you have tired out adrenal glands, then you might be low cortisol, and that is the oil for our joint.... then you would have joint aches and pains....like fibroM, plus an array of other symptoms. they have to put these fancy names on it to market and sell to it. its all related and cant be separated into different specific conditions, each treated separately. each person is unique and came to their current state due to a conglomeration of various influences from within and without. you seem to have figured that out, so congrats you also seem to have a doctor that will acknowledge the thyroid connection to how you are feeling, and thats more than a lot of people can say. but dont put all your money on the endo you find for all your answers... stick to your gut and how YOUR BODY feels. you have to be the one to live in it at the end of the day. anyway, this stuff can be overwhelming, but i hope it is encouraging to know you can have a say and can feel better because of it. welcome again;) hope this offers encouragement > > Hi, everyone. I’m new here and thought I’d toss in an introduction. I’m 54 > and was diagnosed with CFS in 2003, although I’ve had problems with chronic > fatigue since I was 18 and had a mystery illness that was diagnosed as > mononucleosis, even though the test was not conclusive. I just never got > better from it. Personally, I think the fatigue, and other related problems > (joint and muscle pain, brain fog, dry skin, weight gain, hair loss, cold > intolerance, etc., etc., etc.), are really due to a thyroid problem, and > have thought that for a long time. > > I have a new doctor after my doctor of 20 years retired. After discussing > my CFS diagnosis, she wants to send me to an endocrinologist, and I have an > appointment in July. We ran a long list of thyroid tests – every one I > could find in doing my own research on hypothyroidism – and they all came > back within the normal range. The only thing I could find in my reading > that might indicate a problem is the ratio of T3 and Free T3 to Reverse T3, > which is why I joined this group. My total T3 was 1.17, Free T3 was 3.27, > and Reverse T3 was 203. > > The other subject I keep running into is adrenal fatigue. However, the > websites where I’ve found information on adrenal fatigue all appear to want > to sell you things, so I kind of distrust the information I’m getting there. > > I did a search of this group’s posts and saw a number of posts on > CFS/Fibromyalgia (which I think are really the same thing), but I’d love to > pick all of your brains about the intersection of CFS/Fibro, adrenal issues > and thyroid issues. Any thoughts? > > Thanks so much. > > Lee > Si Hoc Legere Scis Nimium Eruditionis Habes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2010 Report Share Posted June 23, 2010 Thanks. My doctor is pretty good about being open to ideas. She’s told me that if I think at all that the endo is blowing me off, I need to call her and she’ll send me to someone else. So I’m feeling pretty good about being in her hands. And you’ve pretty much confirmed what I’ve learned over all these years. The new idea in this for me is low cortisol. My doctor actually thought my cortisol might be high and tested it. It came out not high, but I don’t remember if it was in range or low. Thanks for sharing all this. hi lee, welcome:D!! you came to the right place think cfs and fibro are generic blanket diagnoses for the same systemic condition... if you have low thyroid, then you have all of the things you mentioned... and you would be " chronically fatigued " ... and have aches and pains. if you have tired out adrenal glands, then you might be low cortisol, and that is the oil for our joint.... then you would have joint aches and pains....like fibroM, plus an array of other symptoms. they have to put these fancy names on it to market and sell to it. its all related and cant be separated into different specific conditions, each treated separately. each person is unique and came to their current state due to a conglomeration of various influences from within and without. you seem to have figured that out, so congrats you also seem to have a doctor that will acknowledge the thyroid connection to how you are feeling, and thats more than a lot of people can say. but dont put all your money on the endo you find for all your answers... stick to your gut and how YOUR BODY feels. you have to be the one to live in it at the end of the day. anyway, this stuff can be overwhelming, but i hope it is encouraging to know you can have a say and can feel better because of it. welcome again;) hope this offers encouragement > > Hi, everyone. I’m new here and thought I’d toss in an introduction. I’m 54 > and was diagnosed with CFS in 2003, although I’ve had problems with chronic > fatigue since I was 18 and had a mystery illness that was diagnosed as > mononucleosis, even though the test was not conclusive. I just never got > better from it. Personally, I think the fatigue, and other related problems > (joint and muscle pain, brain fog, dry skin, weight gain, hair loss, cold > intolerance, etc., etc., etc.), are really due to a thyroid problem, and > have thought that for a long time. > > I have a new doctor after my doctor of 20 years retired. After discussing > my CFS diagnosis, she wants to send me to an endocrinologist, and I have an > appointment in July. We ran a long list of thyroid tests – every one I > could find in doing my own research on hypothyroidism – and they all came > back within the normal range. The only thing I could find in my reading > that might indicate a problem is the ratio of T3 and Free T3 to Reverse T3, > which is why I joined this group. My total T3 was 1.17, Free T3 was 3.27, > and Reverse T3 was 203. > > The other subject I keep running into is adrenal fatigue. However, the > websites where I’ve found information on adrenal fatigue all appear to want > to sell you things, so I kind of distrust the information I’m getting there. > > I did a search of this group’s posts and saw a number of posts on > CFS/Fibromyalgia (which I think are really the same thing), but I’d love to > pick all of your brains about the intersection of CFS/Fibro, adrenal issues > and thyroid issues. Any thoughts? > > Thanks so much. > > Lee > Si Hoc Legere Scis Nimium Eruditionis Habes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2010 Report Share Posted June 24, 2010 Thanks for the tip. I will check out the adrenal group. One of the things I like about moving this to an endo is getting an overview of the entire endocrine system because I do suspect cortisol level is part of the problem. My doctor checked it because she suspected Cushing’s, but it wasn’t high. And she checked it in the afternoon, which I verified because I had read that in CFS cortisol is low in the mornings and higher through the day. (Just like my temperature, as a matter of fact – hadn’t thought of that before.) With so many things like this coming out, I’m beginning to feel like a ball of yarn that has been played with by a kitten – all tangled up. J From: RT3_T3 [mailto:RT3_T3 ] On Behalf Of is Sent: Wednesday, June 23, 2010 11:58 PM To: RT3_T3 Subject: Re: Introduction nice, that sounds like a keeper to me:) at the very least, she seems willing to write you lab orders,as those seem to be the real money suckers. i'd check out val's adrenal page as well, as with this group, there are really wonderful moderators who always put together very thoughtful answers. if she did a one-time blood sample for your cortisol levels, that is really not an effective indicator of your 24 hour cortisol rythm (aka your circadian rythm)... for example, you may be too low or normal in the morning, and then too high at night. a saliva test, where you collect 4 samples of saliva at various points of your day, is really your best bet... that'll tell you if your rythm is wacky (or more specifically what stage of adrenal fatigue you might be in) and from there you'll be able to decide what steps to take to support your adrenals. if she wont get you a saliva test, you can always order your own... www.canaryclub.org is a good place to start. they run around $100 i think. again, i'd really suggest going back and forth from here to the adrenal group. we're really only supposed discuss rt3/t3 stuff here and only adrenal stuff over there, but really it's hard to get to the point of having one problem without the other. so its a blessing to have both groups. (and bless the moderators of both!!! they are life savers:)) > >> > > >> > Hi, everyone. I¹m new here and thought I¹d toss in an introduction. I¹m > >> 54 > >> > and was diagnosed with CFS in 2003, although I¹ve had problems with chronic > >> > fatigue since I was 18 and had a mystery illness that was diagnosed as > >> > mononucleosis, even though the test was not conclusive. I just never got > >> > better from it. Personally, I think the fatigue, and other related > >> problems > >> > (joint and muscle pain, brain fog, dry skin, weight gain, hair loss, cold > >> > intolerance, etc., etc., etc.), are really due to a thyroid problem, and > >> > have thought that for a long time. > >> > > >> > I have a new doctor after my doctor of 20 years retired. After discussing > >> > my CFS diagnosis, she wants to send me to an endocrinologist, and I have an > >> > appointment in July. We ran a long list of thyroid tests every one I > >> > could find in doing my own research on hypothyroidism and they all came > >> > back within the normal range. The only thing I could find in my reading > >> > that might indicate a problem is the ratio of T3 and Free T3 to Reverse T3, > >> > which is why I joined this group. My total T3 was 1.17, Free T3 was 3.27, > >> > and Reverse T3 was 203. > >> > > >> > The other subject I keep running into is adrenal fatigue. However, the > >> > websites where I¹ve found information on adrenal fatigue all appear to want > >> > to sell you things, so I kind of distrust the information I¹m getting > >> there. > >> > > >> > I did a search of this group¹s posts and saw a number of posts on > >> > CFS/Fibromyalgia (which I think are really the same thing), but I¹d love to > >> > pick all of your brains about the intersection of CFS/Fibro, adrenal issues > >> > and thyroid issues. Any thoughts? > >> > > >> > Thanks so much. > >> > > >> > Lee > >> > > > > > > > > > > > > > Si Hoc Legere Scis Nimium Eruditionis Habes > Quote Link to comment Share on other sites More sharing options...
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