Guest guest Posted July 29, 2004 Report Share Posted July 29, 2004 Hi , Just wanted to say hi - I'm a new Hashis patient too and have lots of the same symptoms. (And normal TSH.) You're lucky to have doctors who are so willing to treat your symptoms and investigate your problems - I'm currently waiting to see a second doctor to see if he'll do the same. I don't know the answers to most of your questions, being a newbie myself. But what I've learned from the other people on these groups is that once you have been diagnosed with Hashis, the TSH value basically becomes irrelevant and your progress/treatment should be measured instead by the T3 and T4 levels. Someone also told me that there is one theory that the antibodies mess with the accuracy of the TSH reading. Of course, there is also another school of thought (like my first doctor) that believes that treatment should depend solely on TSH levels. I'm still at the beginning stages too, but the internet has been a godsend. You'll be amazed at how much you can pick up and piece together by reading thru others' experiences - and posting your own questions. Keep in touch and let us know how you are doing on the meds. -Marina > > Our newest member 'curlyrachel2001' writes: > > > > " I was just diagnosed today with Hashimoto's disease. > > I am looking to learn more about it, and how to live > > well with it. " > > > thanks so much for the welcome. here's my story, well the abridged > version. i could give a longer one if anyone's interested, but i want > people to actually read it, so i'll keep it short to start! > > after major hypo symptoms (depression, fatigue, brain fog, etc.) but > " normal " lab values (free t3: 3.7 pg/ml, t4: 7.1 og/dl, tsh: 1.2 > uiu/ml), i went to see the endocrinologist. they said i did have a > goiter (confirming what my gp thought). then she ran a thyroid > antibodies test and some other hormone tests. she had me come back > today for lab results and a sonogram. > > given the goiter, normal values and the fact that my mom has > hashimoto's and my grandmother (her mother) has FMS and my grandfather > (mom's father) had hypothyroidism, i was pretty sure i had at least > hypo, and probably hashimoto's. > > when i went in today the doctor told me that i do have hashimoto's and > that i have three nodules on my thyroid. i assume that the hashimoto's > was confirmed by my antibodies results (thyroid peroxidase >70 iu/ml). > > she started me on synthroid. for the first week, she wants me to take > half a pill. the pill is .05mg. after a week, if i'm not having racing > heart etc. she wants me to up it to a full pill daily. > > my question is, now what? i am so thankful to finally know what's > been wrong with me all this time, but i am sad when i think about the > fact that this is a lifelong illness and will have to be monitored and > maintained throughout my life. i have seen some of the things my mom > has gone through and i am not looking forward to that. > > can you guys reccomend some good books/websites/etc. that will teach > me about how hashimoto's works? i've found lots about hypo, but very > little about hashimoto's specifically. > > also, can anyone help me understand how i can feel so bad, have so > many symptoms, have such high antibodies and still have " normal " tsh, > etc.? my mom mentioned to me one time something about her thyroid (or > maybe it was the nodules) producing a false thyroid hormone. anyone > know anything about that? > > any help, next steps, etc. that you could give would be very much > appreciated. > > rachel. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2004 Report Share Posted July 30, 2004 > Just wanted to say hi - I'm a new Hashis patient too and have lots > of the same symptoms. (And normal TSH.) thanks for the welcome! i am glad to know that i am not alone in having symptoms and hashi's but " normal " tsh. i think tsh is rapidly becoming a dirty word to me! > You're lucky to have doctors who are so willing to treat your > symptoms and investigate your problems - I'm currently waiting to > see a second doctor to see if he'll do the same. i feel so blessed! i have a great gp that will give me referrals very easily, and my endo was recommended to me by a friend. i know some others have had bad experiences with her, but so far all of my concerns have been addressed and i think she's willing to help me! thanks so much! rachel. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2004 Report Share Posted July 30, 2004 Autonomous nodules (those that produce their own hormone) do produce their own T3, which is why he said " false " , as in falso readings on your tests for T3. All nodules don't produce this, but it's enough to wonder what kind of hormone your thyroid itself is actually producing. I wouldn't want to up the thyroid hormone that fast, though you are feeling bad now. I would stay on the 50 for 3 to 4 wks, then up it to the 100 mcgs. I just think that's too fast for most people. T4 is the storage hormone, so you won't get a true reading on each dose for around 6 to 8 wks or so. Has the doctor suggested surgery for removing part of the thyroid, or is he trying to shrink them with the med only? Re: Welcome new member > > > Our newest member 'curlyrachel2001' writes: > > > > " I was just diagnosed today with Hashimoto's disease. > > I am looking to learn more about it, and how to live > > well with it. " > > > thanks so much for the welcome. here's my story, well the abridged > version. i could give a longer one if anyone's interested, but i want > people to actually read it, so i'll keep it short to start! > > after major hypo symptoms (depression, fatigue, brain fog, etc.) but > " normal " lab values (free t3: 3.7 pg/ml, t4: 7.1 og/dl, tsh: 1.2 > uiu/ml), i went to see the endocrinologist. they said i did have a > goiter (confirming what my gp thought). then she ran a thyroid > antibodies test and some other hormone tests. she had me come back > today for lab results and a sonogram. > > given the goiter, normal values and the fact that my mom has > hashimoto's and my grandmother (her mother) has FMS and my grandfather > (mom's father) had hypothyroidism, i was pretty sure i had at least > hypo, and probably hashimoto's. > > when i went in today the doctor told me that i do have hashimoto's and > that i have three nodules on my thyroid. i assume that the hashimoto's > was confirmed by my antibodies results (thyroid peroxidase >70 iu/ml). > > she started me on synthroid. for the first week, she wants me to take > half a pill. the pill is .05mg. after a week, if i'm not having racing > heart etc. she wants me to up it to a full pill daily. > > my question is, now what? i am so thankful to finally know what's > been wrong with me all this time, but i am sad when i think about the > fact that this is a lifelong illness and will have to be monitored and > maintained throughout my life. i have seen some of the things my mom > has gone through and i am not looking forward to that. > > can you guys reccomend some good books/websites/etc. that will teach > me about how hashimoto's works? i've found lots about hypo, but very > little about hashimoto's specifically. > > also, can anyone help me understand how i can feel so bad, have so > many symptoms, have such high antibodies and still have " normal " tsh, > etc.? my mom mentioned to me one time something about her thyroid (or > maybe it was the nodules) producing a false thyroid hormone. anyone > know anything about that? > > any help, next steps, etc. that you could give would be very much > appreciated. > > rachel. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 30, 2004 Report Share Posted July 30, 2004 > > > Autonomous nodules (those that produce their own hormone) do produce their > own T3, which is why he said " false " , as in falso readings on your tests for > T3. thanks for explaining that! it's actually my mom that has the autonomous nodules. (she has hashimoto's too) i don't know if mine are producing hormones. the hormone that the nodules produce, is it " usuable " ? or is it just a waste? > I wouldn't want to up > the thyroid hormone that fast, though you are feeling bad now. I would stay > on the 50 for 3 to 4 wks, then up it to the 100 mcgs. I just think that's > too fast for most people. actually, i'm taking half of a 50mg pill now, then she wants me to up it to a full 50mg pill. do you think that's still too fast? > T4 is the storage hormone, so you won't get a > true reading on each dose for around 6 to 8 wks or so. in two months i'm going back in, i assume she'll do more testing then too. > Has the doctor > suggested surgery for removing part of the thyroid, or is he trying to > shrink them with the med only? she has not suggested surgery but let me know that she is hoping that the meds will shrink the gland and the nodules. if not, she wants a biopsy on the nodules. is surgery normally done for hashi's or hypo? r. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2004 Report Share Posted August 1, 2004 I've not had thyroid surgery, as I haven't had some of the problems directly on the gland that some others have, but, yes, a doctor would want to operate, IF the gland has become unmanageable, i.e., swelling up to choke the trachea, and the size just won't decrease, nor the size of the nodules. Also, if a nodule will not stop producing it's own hormone. That T3 does go into the circulation. That's why I don't understand where this word " false " hormone comes from. No, the gland isn't making it, but it's still T3. T4 is the storage hormone, which means that it should very slowly convert to T3 in the body. The dose you are taking right now will not be a true reading on testing until right around 6 to 8 wks. If he's going to test you again within several wks after the 2 month period, then the dose of 50 mcgs would be what you are looking at on lab results. Re: Welcome new member > > > > > > > Autonomous nodules (those that produce their own hormone) do > produce their > > own T3, which is why he said " false " , as in falso readings on your > tests for > > T3. > > thanks for explaining that! it's actually my mom that has the > autonomous nodules. (she has hashimoto's too) i don't know if mine > are producing hormones. > > the hormone that the nodules produce, is it " usuable " ? or is it just > a waste? > > > I wouldn't want to up > > the thyroid hormone that fast, though you are feeling bad now. I > would stay > > on the 50 for 3 to 4 wks, then up it to the 100 mcgs. I just think > that's > > too fast for most people. > > actually, i'm taking half of a 50mg pill now, then she wants me to up > it to a full 50mg pill. do you think that's still too fast? > > > > T4 is the storage hormone, so you won't get a > > true reading on each dose for around 6 to 8 wks or so. > > in two months i'm going back in, i assume she'll do more testing then > too. > > > > Has the doctor > > suggested surgery for removing part of the thyroid, or is he trying > to > > shrink them with the med only? > > she has not suggested surgery but let me know that she is hoping that > the meds will shrink the gland and the nodules. if not, she wants a > biopsy on the nodules. is surgery normally done for hashi's or hypo? > > > r. Quote Link to comment Share on other sites More sharing options...
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