Guest guest Posted September 7, 2002 Report Share Posted September 7, 2002 Kitty - I know just how you feel! I would have liked to have seen the look on that nurse's face when you told her you had a grad. degree in med. research! And it's not " self-diagnosing " it's " exploring other causes " ! Epidemiologist, wow! That's really cool! The researching is right up your alley! Unfortunately, my goddess rhuemy is in Iowa. Practically the middle of nowhere (part of my problem). Be a bit of a trip for you So with your doc, did he end up running the tests you suggested? I hope so - maybe you'll start getting some answers! When do you find out the results? I especially hate the part of meeting new doctors where you have to rehash your whole previous medical history. It's like somehow you have to " justify " that thre really is something wrong with you. I have to say though, thank goodness for keeping your own copies of records. That has to be one of the single best pieces of advice I've gotten from everyone here. Especially with the glaring errors in my file! What a disaster that could have been! I agree. Yeesh doctors. > Wow, I JUST said the same thing to my DH right before I read your email! I > had a first appt today with a new rheumy. He scared me at first, saying lots > of off the wall things (eyes have nothing to do with autoimmune???duh) but > he slowly got it as I asked him for various tests...like testing for > hyaluronic acid in the urine to see if that is the cause of my strange cysts > on the fingers. In the end he actually got with the program quite a bit. > But the whole thing put me in a foul mood all afternoon and evening. I HATE > meeting new doctors too! > > Gee where is your goddess doc? I live in DC and probably wouldn't recommend > this guy to anyone. I am an epidemiologist by training. I have suffered > with these symptoms for 18 months. No one can figure them out and help > me...I spent the whole week online researching medical journals for all kinds > of finger cysts/nodules etc. in preparation for this appt. And his nurse > actually told me at the end 'you know you are not suppossed to self > diagnose!' I said 'look, I have a graduate degree in medical research, I > know what I am doing. No doctor has been able to help me so far, of course I > am going to research my problem!' > > Yeesh doctors... > Kitty > > > > > > I was so stressed about going to the rhuemy today my hands were shaking. I > hate first appointments! However, it turns out the rhuematologist was a > goddess! She actually spoke the word " Hashitoxicosis " and knew what it was! > Turns out she has an interest in endocrinology > > > ------------------------------------- > The Graves' list is intended for informational purposes only and is not intended to replace expert medical care. > Please consult your doctor before changing or trying new treatments. > ---------------------------------------- > DISCLAIMER > > Advertisments placed on this yahoo groups list do not have the endorsement of > the listowner. I have no input as to what ads are attached to emails. > -------------------------------------------------------------------------- ------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2002 Report Share Posted September 7, 2002 Kitty - I know just how you feel! I would have liked to have seen the look on that nurse's face when you told her you had a grad. degree in med. research! And it's not " self-diagnosing " it's " exploring other causes " ! Epidemiologist, wow! That's really cool! The researching is right up your alley! Unfortunately, my goddess rhuemy is in Iowa. Practically the middle of nowhere (part of my problem). Be a bit of a trip for you So with your doc, did he end up running the tests you suggested? I hope so - maybe you'll start getting some answers! When do you find out the results? I especially hate the part of meeting new doctors where you have to rehash your whole previous medical history. It's like somehow you have to " justify " that thre really is something wrong with you. I have to say though, thank goodness for keeping your own copies of records. That has to be one of the single best pieces of advice I've gotten from everyone here. Especially with the glaring errors in my file! What a disaster that could have been! I agree. Yeesh doctors. > Wow, I JUST said the same thing to my DH right before I read your email! I > had a first appt today with a new rheumy. He scared me at first, saying lots > of off the wall things (eyes have nothing to do with autoimmune???duh) but > he slowly got it as I asked him for various tests...like testing for > hyaluronic acid in the urine to see if that is the cause of my strange cysts > on the fingers. In the end he actually got with the program quite a bit. > But the whole thing put me in a foul mood all afternoon and evening. I HATE > meeting new doctors too! > > Gee where is your goddess doc? I live in DC and probably wouldn't recommend > this guy to anyone. I am an epidemiologist by training. I have suffered > with these symptoms for 18 months. No one can figure them out and help > me...I spent the whole week online researching medical journals for all kinds > of finger cysts/nodules etc. in preparation for this appt. And his nurse > actually told me at the end 'you know you are not suppossed to self > diagnose!' I said 'look, I have a graduate degree in medical research, I > know what I am doing. No doctor has been able to help me so far, of course I > am going to research my problem!' > > Yeesh doctors... > Kitty > > > > > > I was so stressed about going to the rhuemy today my hands were shaking. I > hate first appointments! However, it turns out the rhuematologist was a > goddess! She actually spoke the word " Hashitoxicosis " and knew what it was! > Turns out she has an interest in endocrinology > > > ------------------------------------- > The Graves' list is intended for informational purposes only and is not intended to replace expert medical care. > Please consult your doctor before changing or trying new treatments. > ---------------------------------------- > DISCLAIMER > > Advertisments placed on this yahoo groups list do not have the endorsement of > the listowner. I have no input as to what ads are attached to emails. > -------------------------------------------------------------------------- ------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2002 Report Share Posted September 7, 2002 Kitty - I know just how you feel! I would have liked to have seen the look on that nurse's face when you told her you had a grad. degree in med. research! And it's not " self-diagnosing " it's " exploring other causes " ! Epidemiologist, wow! That's really cool! The researching is right up your alley! Unfortunately, my goddess rhuemy is in Iowa. Practically the middle of nowhere (part of my problem). Be a bit of a trip for you So with your doc, did he end up running the tests you suggested? I hope so - maybe you'll start getting some answers! When do you find out the results? I especially hate the part of meeting new doctors where you have to rehash your whole previous medical history. It's like somehow you have to " justify " that thre really is something wrong with you. I have to say though, thank goodness for keeping your own copies of records. That has to be one of the single best pieces of advice I've gotten from everyone here. Especially with the glaring errors in my file! What a disaster that could have been! I agree. Yeesh doctors. > Wow, I JUST said the same thing to my DH right before I read your email! I > had a first appt today with a new rheumy. He scared me at first, saying lots > of off the wall things (eyes have nothing to do with autoimmune???duh) but > he slowly got it as I asked him for various tests...like testing for > hyaluronic acid in the urine to see if that is the cause of my strange cysts > on the fingers. In the end he actually got with the program quite a bit. > But the whole thing put me in a foul mood all afternoon and evening. I HATE > meeting new doctors too! > > Gee where is your goddess doc? I live in DC and probably wouldn't recommend > this guy to anyone. I am an epidemiologist by training. I have suffered > with these symptoms for 18 months. No one can figure them out and help > me...I spent the whole week online researching medical journals for all kinds > of finger cysts/nodules etc. in preparation for this appt. And his nurse > actually told me at the end 'you know you are not suppossed to self > diagnose!' I said 'look, I have a graduate degree in medical research, I > know what I am doing. No doctor has been able to help me so far, of course I > am going to research my problem!' > > Yeesh doctors... > Kitty > > > > > > I was so stressed about going to the rhuemy today my hands were shaking. I > hate first appointments! However, it turns out the rhuematologist was a > goddess! She actually spoke the word " Hashitoxicosis " and knew what it was! > Turns out she has an interest in endocrinology > > > ------------------------------------- > The Graves' list is intended for informational purposes only and is not intended to replace expert medical care. > Please consult your doctor before changing or trying new treatments. > ---------------------------------------- > DISCLAIMER > > Advertisments placed on this yahoo groups list do not have the endorsement of > the listowner. I have no input as to what ads are attached to emails. > -------------------------------------------------------------------------- ------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2002 Report Share Posted September 7, 2002 You have actually found one that wants to hear it? Yikes! Terry > > Reply-To: graves_support > Date: Sat, 7 Sep 2002 10:58:20 -0500 > To: graves_support > > Subject: Re: Kitty > > I especially hate the part of meeting new doctors where you have to rehash > your whole previous medical history. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2002 Report Share Posted September 7, 2002 You have actually found one that wants to hear it? Yikes! Terry > > Reply-To: graves_support > Date: Sat, 7 Sep 2002 10:58:20 -0500 > To: graves_support > > Subject: Re: Kitty > > I especially hate the part of meeting new doctors where you have to rehash > your whole previous medical history. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2002 Report Share Posted September 10, 2002 Hi Kitty, Have you read Pam B's posts on craneal-scarel ...she says it is wonderful and maybe it would relieve your pressure and end up helping your eyes too? Just make sure you see someone who is certified and trained properly. Massage therapists who do it, many times are not certified and even some that are end up using too much pressure when doing treatment. Hopefully Pam will pop in on this one and comment to you. Jody _________________________________________________________________ MSN Photos is the easiest way to share and print your photos: http://photos.msn.com/support/worldwide.aspx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2002 Report Share Posted September 14, 2002 Kitty - FT4 dropping is going towards the hypo end of the scale. FT4 is elevated in hyper, lower in hypo. Perhaps that TSH is too high *for you* after all. Also, remember that TSH lags about 6 weeks behind changes in T4 and T3. If you haven't had a FT4 since 8/01, I'd definitely find a doctor to check that out immediately! It sounds very likely that the positive ANA is just related to underlying autoimmune thyroid disease. There's now several of us that have recently learned we have a low positive ANA titer. It's reassuring that your Sjorgen's and ATA and APA were negative! Sounds like the same story with us on the fatty liver. We orginally learned about hubby's because he got rejected for life insurance (elevated liver panel, too). Turns out the elevated liver panel = alcoholism to the life insurance underwriters, which is amusing since neither hubby nor I drink. So we had lots of tests to determine it _wasn't_ alcohol related, or hepatitis, or anything like that. He was never on any meds before that, so it's not drug induced. The professional consesus is that he just has a fatty liver. I guess it's just one of those things you have or you don't. It's really weird though! Makes you wonder how you get a fatty liver! Hope you find a new doc soon! and Pam > Hi, > > Forgot to say that tests for Sjorgens was also negative. Also the ATA and > APA. ANA was the only + so far at 1:160. > > I looked at 4 years of thyroid tests just now... my TSH ranges from 1.27 to > 2.03 over 12 tests. Usually it is right in the middle. > > The only weird thing I can see in all these tests is that my Free T4 has > dropped steadily from 1.55 in 2/99 to .47 in 8/01, the last time I had it > tested. > > What does it mean when Free T4 drops? > > I am going to find a new doctor to do a full thyroid panel on me next week. > > > > Any opinions or ideas about the whole thyroid and ANA thing are welcome!!! > > Kitty > > PS > [in 2/2002 I had to get a major fertility surgery done. So I did one of > those whole body scans, just to make sure nothing else was wrong, and I was > told it showed I had 'fatty liver disease'. I have since tried to cut back > on supplements and numbers of meds, and added an herbal liver helper > (dandelion, artichoke, the other blends are too harsh while trying to > conceive). > > I don't know how I got fatty liver. For 4 years, my liver panel blood work > showed up as having an elevated liver panel. They thought it was probably > from the rxs I take, since we don't drink alcohol. > > The other thing to do for fatty liver disease I was told would be to lose > weight. I am trying.!! > > Strangely a few months later I persuaded my mom to have the whole body scan > done. She was also told she had fatty liver disease. That was the only real > problem that showed up on the scan for both of us. Both my parents took > Armour thyroid their whole lives, my mom while preg with me! They are pretty > much healthy in the grand scheme of things.] > > > ------------------------------------- > The Graves' list is intended for informational purposes only and is not intended to replace expert medical care. > Please consult your doctor before changing or trying new treatments. > ---------------------------------------- > DISCLAIMER > > Advertisments placed on this yahoo groups list do not have the endorsement of > the listowner. I have no input as to what ads are attached to emails. > -------------------------------------------------------------------------- ------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2002 Report Share Posted September 14, 2002 Kitty - FT4 dropping is going towards the hypo end of the scale. FT4 is elevated in hyper, lower in hypo. Perhaps that TSH is too high *for you* after all. Also, remember that TSH lags about 6 weeks behind changes in T4 and T3. If you haven't had a FT4 since 8/01, I'd definitely find a doctor to check that out immediately! It sounds very likely that the positive ANA is just related to underlying autoimmune thyroid disease. There's now several of us that have recently learned we have a low positive ANA titer. It's reassuring that your Sjorgen's and ATA and APA were negative! Sounds like the same story with us on the fatty liver. We orginally learned about hubby's because he got rejected for life insurance (elevated liver panel, too). Turns out the elevated liver panel = alcoholism to the life insurance underwriters, which is amusing since neither hubby nor I drink. So we had lots of tests to determine it _wasn't_ alcohol related, or hepatitis, or anything like that. He was never on any meds before that, so it's not drug induced. The professional consesus is that he just has a fatty liver. I guess it's just one of those things you have or you don't. It's really weird though! Makes you wonder how you get a fatty liver! Hope you find a new doc soon! and Pam > Hi, > > Forgot to say that tests for Sjorgens was also negative. Also the ATA and > APA. ANA was the only + so far at 1:160. > > I looked at 4 years of thyroid tests just now... my TSH ranges from 1.27 to > 2.03 over 12 tests. Usually it is right in the middle. > > The only weird thing I can see in all these tests is that my Free T4 has > dropped steadily from 1.55 in 2/99 to .47 in 8/01, the last time I had it > tested. > > What does it mean when Free T4 drops? > > I am going to find a new doctor to do a full thyroid panel on me next week. > > > > Any opinions or ideas about the whole thyroid and ANA thing are welcome!!! > > Kitty > > PS > [in 2/2002 I had to get a major fertility surgery done. So I did one of > those whole body scans, just to make sure nothing else was wrong, and I was > told it showed I had 'fatty liver disease'. I have since tried to cut back > on supplements and numbers of meds, and added an herbal liver helper > (dandelion, artichoke, the other blends are too harsh while trying to > conceive). > > I don't know how I got fatty liver. For 4 years, my liver panel blood work > showed up as having an elevated liver panel. They thought it was probably > from the rxs I take, since we don't drink alcohol. > > The other thing to do for fatty liver disease I was told would be to lose > weight. I am trying.!! > > Strangely a few months later I persuaded my mom to have the whole body scan > done. She was also told she had fatty liver disease. That was the only real > problem that showed up on the scan for both of us. Both my parents took > Armour thyroid their whole lives, my mom while preg with me! They are pretty > much healthy in the grand scheme of things.] > > > ------------------------------------- > The Graves' list is intended for informational purposes only and is not intended to replace expert medical care. > Please consult your doctor before changing or trying new treatments. > ---------------------------------------- > DISCLAIMER > > Advertisments placed on this yahoo groups list do not have the endorsement of > the listowner. I have no input as to what ads are attached to emails. > -------------------------------------------------------------------------- ------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 21, 2002 Report Share Posted September 21, 2002 Hi Kitty, In the files section there is a lab tracker and medical info form, and I have filled out and given both my endo and new primary these. Both were impressed and glad I did this. With the medical info form I didn't have to fill out the new patient office form with my new primary either...and this is much more thorough. I did add a section for labs I wanted run, and for concerns I had at the time. I believe it was Doris who designed both of these and put them in group. Sure does help us so that we don't forget anything, and helps the doctors to have all the info we can provide them with, and we can do this at home when we have time to think and remember as much as possible so they are more accurate, in my opinion. I'm glad your doing the same thing, and hope more people will too. Jody _________________________________________________________________ Join the world’s largest e-mail service with MSN Hotmail. http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
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