Guest guest Posted October 19, 2003 Report Share Posted October 19, 2003 Wow , You SOUND hypo! Do you have TPO antibodies? God bless, <A HREF= " http://hometown.aol.com/lisareynolds64/myhomepage/personal.html " >http://ho\ metown.aol.com/lisareynolds64/myhomepage/personal.html</A> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2003 Report Share Posted October 19, 2003 Hi everyone, I have now been off ATDs since 09/17/03. Lately I have been freezing! The weather is getting colder and colder and I am just cold 24/7. My resting pulse this morning was a whopping 64 beats per minute. I'm supposed to go for labs this upcoming week so I'm really curious what my levels are. So far I'm not having any hyper symptoms at all. Maybe my decision to drop the meds was a good one? Only time will tell I suppose. My weight gain has stopped in the last few weeks. The 30 pounds gained over the last year are really depressing. I'm hoping that soon I'll be able to start losing some of that weight. I joined Curves in an effort to up my activity level. So far in the two months I've been going I have gained 3 pounds and several inches. I am noticing though that I am experiencing stamina problems lately at Curves. I just don't seem to have that much strength to make it through the whole work-out. I did not have that problem 2 months ago when I joined. It's only been in the last two-three weeks. I don't know what to think anymore. If someone would just invent an anti-antibody medication we'd all be fine! in MA USA Graves since March 1997 Currently on 0 PTU tablets per day Was euthroid from 2000-2003 Will not undergo RAI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2003 Report Share Posted October 19, 2003 Hi , My current endo dos not believe in antibody testing. While she knows the disease is auto-immune she feels that the anti-body testing has no impact on treatment. Funny this is I don't really know what hypo feels like, so this may be it, huh? Honestly, I feel right now the way I did the majority of my adult life before Graves. And I really feel in hindsight that I probably should not have been medicated this past year. Yes, my thyroid levels were elevated but only slightly. I feel so frustrated by this disease, and not the disease itself but the lack of competent doctors to help me! One more thing, my cycle has been off. I am now getting my period every 21 - 26 days. My gyn says it's most likely thyroid related as I am fine in every other way girl-wise. in MA USA Graves since March 1997 Currently on 0 PTU tablets per day Was euthroid from 2000-2002 Will not undergo RAI Re: 4 1/2 Weeks off Meds Wow , You SOUND hypo! Do you have TPO antibodies? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2003 Report Share Posted October 19, 2003 , If I am getting you correctly, I think you and I are in a similar place right now. I haven't found a doctor who will add T4 to my regimen, so I have been slowly tapering my PTU dose down in an effort to stop my FT4 from sinking (even with a low TSH). While on 1/4 pill a day, I have probably lost half of the hair on my head, which is sad, because I had nice hair. Now it is getting scraggly, and I probably need to get a much shorter cut soon, so that I don't look weird. Wondering aloud to my husband about whether I will soon need a wig, he suggested that I see how I do with no meds (I was very mild/subclinical to start). I do have both TSI and TPO-antibodies, which probably balance each other out. If I have any symptoms, they are mostly on the hypO side (coldness, low HR, facial swelling, slow thinking). I hope I'm doing the right thing in taking myself off meds. I will have labs done frequently, even if on no meds. I am curious about your labs as well--let us know! At 12:12 PM 10/19/2003, you wrote: >Hi everyone, > >I have now been off ATDs since 09/17/03. Lately I have been freezing! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2003 Report Share Posted October 19, 2003 , More frequent periods are associated with hypO. It would be good if you could get some antibody testing (TSI and TPO-Ab). Perhaps you can find a doctor who will run these tests, if your current one refuses. At 01:54 PM 10/19/2003, you wrote: >One more thing, my cycle has been off. I am now getting my period every 21 - >26 days. My gyn says it's most likely thyroid related as I am fine in every >other way girl-wise. > > in MA USA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2003 Report Share Posted October 19, 2003 Hi , Congrats on achieving remission. About 20% of people with GD spontaneously move into hypothyroidism. Usually, it's mild compared to the hypothyroidism induced by surgery or RAI. And sometimes it resolves. Be sure your doctor checks your FT4 and FT3 levels so you can receive treatment if it's indicated. Take care, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2003 Report Share Posted October 19, 2003 Hi , I really feel that I should not have even been on meds this last year. I did it to humor the doctors and now I regret it. I feel better when I'm slightly hyper. My labs last month showed my FT4 at 0.9 (0.6-1.6). That is just way too low for me. So now I'm hoping for a reversal back to slightly hyper where I feel HUMAN! My hair has always been fine and thin. I just wear it kind of short and it looks fine. Hair spray and mousse are my hair's best friends. I go for the labs this week but it takes three weeks to get the results! I'm so tired at night tat I have tried to do some reading in my Graves Disease book (Elaine's book) but can't keep my eyes open long enough and can't seem to retain anything! in MA USA Graves since March 1997 Currently on 0 PTU tablets per day Was euthyroid from 2000-2002 Will not undergo RAI Re: 4 1/2 Weeks off Meds , If I am getting you correctly, I think you and I are in a similar place right now. I haven't found a doctor who will add T4 to my regimen, so I have been slowly tapering my PTU dose down in an effort to stop my FT4 from sinking (even with a low TSH). While on 1/4 pill a day, I have probably lost half of the hair on my head, which is sad, because I had nice hair. Now it is getting scraggly, and I probably need to get a much shorter cut soon, so that I don't look weird. Wondering aloud to my husband about whether I will soon need a wig, he suggested that I see how I do with no meds (I was very mild/subclinical to start). I do have both TSI and TPO-antibodies, which probably balance each other out. If I have any symptoms, they are mostly on the hypO side (coldness, low HR, facial swelling, slow thinking). I hope I'm doing the right thing in taking myself off meds. I will have labs done frequently, even if on no meds. I am curious about your labs as well--let us know! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2003 Report Share Posted October 19, 2003 Hey , I am right there with ya, FT4 at 0.9 on 10/9. I don't need to be slightly hyper -- think mid-range is good for me. I hope you feel better soon! At 09:19 PM 10/19/2003, you wrote: >Hi , > >I really feel that I should not have even been on meds this last year. I did >it to humor the doctors and now I regret it. I feel better when I'm slightly >hyper. My labs last month showed my FT4 at 0.9 (0.6-1.6). That is just way >too low for me. So now I'm hoping for a reversal back to slightly hyper >where I feel HUMAN! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2003 Report Share Posted October 20, 2003 Thanks Elaine! I hope this is remission. I go for labs for my endo this week but she only likes to run FT4 and TSH. I'm going to get in touch with my primary care and see if they'll run some antibody testing on me. Should I ask for TSI and TPO? in MA USA Graves since March 1997 Currently on 0 PTU tablets per day Was euthyroid from 2000-2002 Will not undergo RAI Re: 4 1/2 Weeks off Meds Hi , Congrats on achieving remission. About 20% of people with GD spontaneously move into hypothyroidism. Usually, it's mild compared to the hypothyroidism induced by surgery or RAI. And sometimes it resolves. Be sure your doctor checks your FT4 and FT3 levels so you can receive treatment if it's indicated. Take care, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2003 Report Share Posted October 20, 2003 , TSI, TBII and TPO-Ab should cover it. (TBII will indicate if there are blocking antibodies, even if TSI is negative.) At 11:20 AM 10/20/2003, you wrote: >Thanks Elaine! > >I hope this is remission. I go for labs for my endo this week but she >only likes to run FT4 and TSH. I'm going to get in touch with my primary >care and see if they'll run some antibody testing on me. Should I ask >for TSI and TPO? > > in MA USA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2003 Report Share Posted October 20, 2003 Thanks ! It's just so infuriating that we have to ASK for the lab-work we need! And when we do ask for the labs we need most endos get mad at us! Auto-immune disorders need to be followed not only by the symptoms but by the cause! If you have a broken arm do the doctors just give you pain meds and send you on your way? No, they ex-ray the broken bone, set it, then give you the medications to ease your pain. With Graves, you're given treatment to address your symptoms but not the root cause. I know there aren't any treatments for the cause of the GD as yet, but at least they can monitor the cause! Geez I just get so angry that I have to beg for stupid lab work! in MA USA Graves since March 1997 Currently on 0 PTU tablets per day Was euthyroid from 2000-2002 Will not undergo RAI RE: 4 1/2 Weeks off Meds , TSI, TBII and TPO-Ab should cover it. (TBII will indicate if there are blocking antibodies, even if TSI is negative.) Quote Link to comment Share on other sites More sharing options...
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