Guest guest Posted August 18, 2009 Report Share Posted August 18, 2009 I use HealthNet in Connecticut which is an HMO. They complain about everything. My doctor is one tough cookie though, so she may get it through. Praying for a good outcome with it. Joe > > > > Phil: I went to see my endo today. You remember that my estradiol was 119 in the latest blood work. She wants to start me on Arimidex 1mg daily! She is really concerned about all the cardiac risks in my profile, plus the high hematacrit, and feels the high estradiol is another risk factor that I don't need. I am pretty sure my insurance company won't pay for it, but she is going to try. She is lowering my testosterone shots from 150 to 100. She is also referring me to a urologist because I am having trouble peeing (my prostate feels like a rock) and a hemotologist for the hematocrit. She wants him to do a more thorough study of the issue. She raised my synthroid to 88mcg but left my cytomel as is. The question I have for you is where can I get Arimidex if my plan won't approve it. I have a written prescription. The CVS pharmacy I go to said it would be $497 a month out of pocket. Is there a mail pharmacy where I can get it cheaper? > > > > When I asked her to add me to copy on the next blood work, she started to write down Dr. Noonan! The nurse caught it and the Dr. said that I was one of the best informed patients she's ever had. That is all thanks to you and the members of this board. You all provide such an invaluable service! I really want to thank you Phil and the rest of the board responders. You are a God-send! > > > > Joe > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2009 Report Share Posted August 19, 2009 Great, great news!!! Leila,Maysa, 19 mo, DOC band Grad 5.26.09 www.mymaysa.wordpress.com From: dobenl <dobenl@...>Subject: Good newsPlagiocephaly Date: Wednesday, August 19, 2009, 11:22 AM HI, My son was put in helmet after long disagreement with his doctor.When we visited CIRS s measurement was 16.7 mm ! It is his 6th week in helmet and his yestarday visit was really great. His number is now 8.6mm HIs head grown 13mm total.We are so happy. Maybe he will graduate before his 1st birthday!Doben & /9month old/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2009 Report Share Posted August 19, 2009 Glad he's doing so well and that you pushed your doctor for the band. -christine sydney, 3.5 yrs, starband grad > > HI, > > My son was put in helmet after long disagreement with his doctor.When we visited CIRS s measurement was 16.7 mm ! It is his 6th week in helmet and his yestarday visit was really great. His number is now 8.6mm HIs head grown 13mm total. > We are so happy. Maybe he will graduate before his 1st birthday! > > Doben & /9month old/ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2010 Report Share Posted April 27, 2010 That sounds awesome!! My 2 NT kids obviously suffer from the effects that AS has on my oldest son. We take him to get support from a child psych...but it is great to see the siblings getting support as well. Something to think about for sure. > > Hi All, > > I just wanted to share with you all something new that my daughters school is doing. She is my 8 year old NT Daughter. I also have a 11 year old AS son and a 5 year old NT daughter. Anyway the guidance councellor has started a " Super Siblings " group for students who have a sibling with special needs. > > They have only met once but they were able to meet each other and play a game together. I think that it is just wonderful that they would take the time to look to the needs of the siblings that frankly often get left behind because we are busy dealing with the " squeeky wheel " . > > My daughter is thrilled and I think that this will be a great opertunity for her to realize that she is not alone and get some peer support of her own. > > Vickie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2010 Report Share Posted April 27, 2010 How wonderful!! What a great idea!! ( ) Good News Hi All, I just wanted to share with you all something new that my daughters school is doing. She is my 8 year old NT Daughter. I also have a 11 year old AS son and a 5 year old NT daughter. Anyway the guidance councellor has started a " Super Siblings " group for students who have a sibling with special needs. They have only met once but they were able to meet each other and play a game together. I think that it is just wonderful that they would take the time to look to the needs of the siblings that frankly often get left behind because we are busy dealing with the " squeeky wheel " . My daughter is thrilled and I think that this will be a great opertunity for her to realize that she is not alone and get some peer support of her own. Vickie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2010 Report Share Posted April 27, 2010 Wow, that really sounds wonderful. Growing up I could have really benefited from that. One of my sisters has severe mental retardation and I just felt bad about it for all sorts of reasons. Would have been nice to have felt like I was not alone. I'm glad for your daughter! > > > > Hi All, > > > > I just wanted to share with you all something new that my daughters school is doing. She is my 8 year old NT Daughter. I also have a 11 year old AS son and a 5 year old NT daughter. Anyway the guidance councellor has started a " Super Siblings " group for students who have a sibling with special needs. > > > > They have only met once but they were able to meet each other and play a game together. I think that it is just wonderful that they would take the time to look to the needs of the siblings that frankly often get left behind because we are busy dealing with the " squeeky wheel " . > > > > My daughter is thrilled and I think that this will be a great opertunity for her to realize that she is not alone and get some peer support of her own. > > > > Vickie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2010 Report Share Posted December 31, 2010 As for you being hperthyroid, did you have any more than a TSH test? I ask because that's what they kept telling me and I still felt sick. It was my Rheumatologist who finally agreed to have me tested for FreeT3, FreeT4, ReverseT3 and TSH all at the same time after a 12 hour fast and with no meds of any kind at all before the test.  It showed I was not converting from T4 to T3 properly and had way too much Reverse T3 which meant my cells were getting very little of the T3 hormone that they needed to run my body. That's why we always ask people to post their test results including the lab ranges (each lab range is different).  Pay attention to how you feel on a daily basis now that you've decreased the levothyroxine, so that you'll be able to know what to tell the doctor. I'd write it down in a little notebook every day.  I hope it all works out well for you.   <>Roni Immortality exists! It's called knowledge!  Just because something isn't seen doesn't mean it's not there<> From: H <macbarb0503@...> Subject: Good News hypothyroidism Date: Friday, December 31, 2010, 9:47 AM All of you on this forum have impressed me with your knowledge, especially now that I've had more testing done, and found out I have Hashimoto's. My antibiodies were sky high. If I remember right, he said they were over 800. He is sending all the results here, so I should have them next week. Fortunately for me, the biopsy came back benign. You knew all along that there was something more than an underactive thyroid, and you were right. I was very impressed by the Mayo Clinic. The blood was taken on Monday. I saw the endocrinologist on Tuesday, and he apologized because he had tried, but had been unable to schedule the biopsy for the same day as my appointment with him. He spent over an hour with me, explaining things and answering my questions. Wednesday I had the biopsy, and the doctor called me himself with the results right after he saw his last patient. It was just after 5 PM when he called with the good news. The only thing that wasn't clear is why I have swelling behind the collar bone, at the base of my neck, on both sides. When I asked the doctor if the swelling increased the chance there was a malignancy, he said no because he couldn't feel any swollen lymph nodes under the swelling. When I asked him if he had seen swelling there before he said, " Oh maybe a time or two. "  Huh? He said problems with the thyroid can cause swelling, that I should watch it, and if it gets bigger, see my doctor here. He seemed unconcerned about it. He also said I should decrease the dose of Levothyroxin to 1/2 a pill, and go back for blood work in six weeks, because the TSH was too low and I was too hyper taking a whole pill. This should be interesting, because my doctor here told me to go back for more bloodwork in six months, not six weeks. Thank God for valet parking! It was in the mid-twenties in ville, and there was ice on my windshield! The charge was $4. I would have gladly paid much more! Each time a gave them a five dollar bill, they tried to return the change. I would have paid a lot more than $5 to avoid walking in that bitter cold. At least it's bitter cold for FL. Thanks again for all the feedback, help, and support from everyone here. Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2010 Report Share Posted December 31, 2010 I looked up the lump behind your ear, and maybe this is why the doctor is not converned.  Dr. Goce Aleksovski replied January 8th, 2009 Ear, Nose and Throat Disorders Answer A5286 Given your description of a pea-sized bump under the skin behind the ear, you might be having folliculitis (infection of a hair follicle) or sebaceous cyst (closed sebaceous gland). If it continues to grow or becomes painful again, it is advisable that you visit your family doctor, who might perform disinfection, incision, and prescribe a topical or maybe even oral antibiotic treatment. Another possibility might be an enlarged lymph node, provoked by pathological happenings in the ear, throat or other surrounding organs. If it does not heal on its own in the next couple of days, it might be recommended that you visit your doctor. If you decide to go to the doctor I'd choose and ENT who might have some specialized information in that area.  <>Roni Immortality exists! It's called knowledge!  Just because something isn't seen doesn't mean it's not there<> From: H <macbarb0503@...> Subject: Good News hypothyroidism Date: Friday, December 31, 2010, 9:47 AM All of you on this forum have impressed me with your knowledge, especially now that I've had more testing done, and found out I have Hashimoto's. My antibiodies were sky high. If I remember right, he said they were over 800. He is sending all the results here, so I should have them next week. Fortunately for me, the biopsy came back benign. You knew all along that there was something more than an underactive thyroid, and you were right. I was very impressed by the Mayo Clinic. The blood was taken on Monday. I saw the endocrinologist on Tuesday, and he apologized because he had tried, but had been unable to schedule the biopsy for the same day as my appointment with him. He spent over an hour with me, explaining things and answering my questions. Wednesday I had the biopsy, and the doctor called me himself with the results right after he saw his last patient. It was just after 5 PM when he called with the good news. The only thing that wasn't clear is why I have swelling behind the collar bone, at the base of my neck, on both sides. When I asked the doctor if the swelling increased the chance there was a malignancy, he said no because he couldn't feel any swollen lymph nodes under the swelling. When I asked him if he had seen swelling there before he said, " Oh maybe a time or two. "  Huh? He said problems with the thyroid can cause swelling, that I should watch it, and if it gets bigger, see my doctor here. He seemed unconcerned about it. He also said I should decrease the dose of Levothyroxin to 1/2 a pill, and go back for blood work in six weeks, because the TSH was too low and I was too hyper taking a whole pill. This should be interesting, because my doctor here told me to go back for more bloodwork in six months, not six weeks. Thank God for valet parking! It was in the mid-twenties in ville, and there was ice on my windshield! The charge was $4. I would have gladly paid much more! Each time a gave them a five dollar bill, they tried to return the change. I would have paid a lot more than $5 to avoid walking in that bitter cold. At least it's bitter cold for FL. Thanks again for all the feedback, help, and support from everyone here. Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2010 Report Share Posted December 31, 2010 He ordered 16 blood tests Roni, so I think he did. I know he tested more than the TSH because he told me about the antibioties being very high. That test wasn't done where I live. I'll soon know for sure when the results get here. In the cover letter I sent up there, that was passed on to the doctor, I complained that they wouldn't do the four basic thyroid tests here for Free T3, Free T4, Reverse T3, and TSH. I asked some questions, but not too many because talking was difficult. I got laryngitis after visiting my son and grandchildren on Monday after the bloodwork. That day I was feeling so good, I drove at least another two and 1/2 hours after driving 3 hours to get to ville. It was about an hour and a quarter each way. Maybe I overdid it. My Son kept saying he would go with me, or meet me there whenever I wanted him to, but the doctor told me I would be able to drive after the biopsy, and the results wouldn't be known until late afternoon, so I told my son there was no need for him to be there. I just had to hang around the hospital for a couple of hours to make sure there was no swelling or other problems before driving so far. I guess I should have asked about the tests you mention, because by now I should have learned not to take anything for granted. That's a good suggestion to keep track of how I feel every day on 1/2 of a pill by writing it in a notebook. I'll do that, and will be sure to ask for more tests if any were omitted. If the T4 wasn't converting to T3 properly, my TSH wouldn't have gone down from over 8 to under one would it? Sorry, I obviously still don't understand all of this. Thanks for your response and your good wishes. Barb Good News hypothyroidism Date: Friday, December 31, 2010, 9:47 AM All of you on this forum have impressed me with your knowledge, especially now that I've had more testing done, and found out I have Hashimoto's. My antibiodies were sky high. If I remember right, he said they were over 800. He is sending all the results here, so I should have them next week. Fortunately for me, the biopsy came back benign. You knew all along that there was something more than an underactive thyroid, and you were right. I was very impressed by the Mayo Clinic. The blood was taken on Monday. I saw the endocrinologist on Tuesday, and he apologized because he had tried, but had been unable to schedule the biopsy for the same day as my appointment with him. He spent over an hour with me, explaining things and answering my questions. Wednesday I had the biopsy, and the doctor called me himself with the results right after he saw his last patient. It was just after 5 PM when he called with the good news. The only thing that wasn't clear is why I have swelling behind the collar bone, at the base of my neck, on both sides. When I asked the doctor if the swelling increased the chance there was a malignancy, he said no because he couldn't feel any swollen lymph nodes under the swelling. When I asked him if he had seen swelling there before he said, " Oh maybe a time or two. " Huh? He said problems with the thyroid can cause swelling, that I should watch it, and if it gets bigger, see my doctor here. He seemed unconcerned about it. He also said I should decrease the dose of Levothyroxin to 1/2 a pill, and go back for blood work in six weeks, because the TSH was too low and I was too hyper taking a whole pill. This should be interesting, because my doctor here told me to go back for more bloodwork in six months, not six weeks. Thank God for valet parking! It was in the mid-twenties in ville, and there was ice on my windshield! The charge was $4. I would have gladly paid much more! Each time a gave them a five dollar bill, they tried to return the change. I would have paid a lot more than $5 to avoid walking in that bitter cold. At least it's bitter cold for FL. Thanks again for all the feedback, help, and support from everyone here. Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2010 Report Share Posted December 31, 2010 I'm sorry Roni, but you must have me confused with someone else. This is what I wrote: " The only thing that wasn't clear is why I have swelling behind the collar bone, at the base of my neck, on both sides. When I asked the doctor if the swelling increased the chance there was a malignancy, he said no because he couldn't feel any swollen lymph nodes under the swelling. When I asked him if he had seen swelling there before he said, " Oh maybe a time or two. " Huh? He said problems with the thyroid can cause swelling, that I should watch it, and if it gets bigger, see my doctor here. " It's not pea sized, hard, or near my ear. It's soft, swollen, and about the size of a golf ball on the left side. The one on the right is not as large or prominent, but it is definitely there. I know it's easy to get things mixed up, since I do it all the time! LOL! Barb Good News hypothyroidism Date: Friday, December 31, 2010, 9:47 AM All of you on this forum have impressed me with your knowledge, especially now that I've had more testing done, and found out I have Hashimoto's. My antibiodies were sky high. If I remember right, he said they were over 800. He is sending all the results here, so I should have them next week. Fortunately for me, the biopsy came back benign. You knew all along that there was something more than an underactive thyroid, and you were right. I was very impressed by the Mayo Clinic. The blood was taken on Monday. I saw the endocrinologist on Tuesday, and he apologized because he had tried, but had been unable to schedule the biopsy for the same day as my appointment with him. He spent over an hour with me, explaining things and answering my questions. Wednesday I had the biopsy, and the doctor called me himself with the results right after he saw his last patient. It was just after 5 PM when he called with the good news. IHe seemed unconcerned about it. He also said I should decrease the dose of Levothyroxin to 1/2 a pill, and go back for blood work in six weeks, because the TSH was too low and I was too hyper taking a whole pill. This should be interesting, because my doctor here told me to go back for more bloodwork in six months, not six weeks. Thank God for valet parking! It was in the mid-twenties in ville, and there was ice on my windshield! The charge was $4. I would have gladly paid much more! Each time a gave them a five dollar bill, they tried to return the change. I would have paid a lot more than $5 to avoid walking in that bitter cold. At least it's bitter cold for FL. Thanks again for all the feedback, help, and support from everyone here. Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2011 Report Share Posted January 1, 2011 It doesn't make sense to me either. A high TSH means the thyroid is too low, a low TSH means the thyroid is too high. For it to change so dramatically, I would definitely want to have the full set of testing. It could have been a problem with the lab, but there's no real way to find out. There are other factors, but even with that, the huge change so quickly is very puzzling. <>Roni Immortality exists! It's called knowledge!  Just because something isn't seen doesn't mean it's not there<> From: H <macbarb0503@...> Subject: Good News hypothyroidism Date: Friday, December 31, 2010, 9:47 AM All of you on this forum have impressed me with your knowledge, especially now that I've had more testing done, and found out I have Hashimoto's. My antibiodies were sky high. If I remember right, he said they were over 800. He is sending all the results here, so I should have them next week. Fortunately for me, the biopsy came back benign. You knew all along that there was something more than an underactive thyroid, and you were right. I was very impressed by the Mayo Clinic. The blood was taken on Monday. I saw the endocrinologist on Tuesday, and he apologized because he had tried, but had been unable to schedule the biopsy for the same day as my appointment with him. He spent over an hour with me, explaining things and answering my questions. Wednesday I had the biopsy, and the doctor called me himself with the results right after he saw his last patient. It was just after 5 PM when he called with the good news. The only thing that wasn't clear is why I have swelling behind the collar bone, at the base of my neck, on both sides. When I asked the doctor if the swelling increased the chance there was a malignancy, he said no because he couldn't feel any swollen lymph nodes under the swelling. When I asked him if he had seen swelling there before he said, " Oh maybe a time or two. "  Huh? He said problems with the thyroid can cause swelling, that I should watch it, and if it gets bigger, see my doctor here. He seemed unconcerned about it. He also said I should decrease the dose of Levothyroxin to 1/2 a pill, and go back for blood work in six weeks, because the TSH was too low and I was too hyper taking a whole pill. This should be interesting, because my doctor here told me to go back for more bloodwork in six months, not six weeks. Thank God for valet parking! It was in the mid-twenties in ville, and there was ice on my windshield! The charge was $4. I would have gladly paid much more! Each time a gave them a five dollar bill, they tried to return the change. I would have paid a lot more than $5 to avoid walking in that bitter cold. At least it's bitter cold for FL. Thanks again for all the feedback, help, and support from everyone here. Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2011 Report Share Posted January 1, 2011 It's possibly a lipoma which is a fatty tumor. It's usually not a problem unless it grows and starts pressing on other things and causes pain. You could have it check out by an otolaryngologist which is an ear, nose and throat doctor. <>Roni Immortality exists! It's called knowledge!  Just because something isn't seen doesn't mean it's not there<> From: H <macbarb0503@...> Subject: Good News hypothyroidism Date: Friday, December 31, 2010, 9:47 AM All of you on this forum have impressed me with your knowledge, especially now that I've had more testing done, and found out I have Hashimoto's. My antibiodies were sky high. If I remember right, he said they were over 800. He is sending all the results here, so I should have them next week. Fortunately for me, the biopsy came back benign. You knew all along that there was something more than an underactive thyroid, and you were right. I was very impressed by the Mayo Clinic. The blood was taken on Monday. I saw the endocrinologist on Tuesday, and he apologized because he had tried, but had been unable to schedule the biopsy for the same day as my appointment with him. He spent over an hour with me, explaining things and answering my questions. Wednesday I had the biopsy, and the doctor called me himself with the results right after he saw his last patient. It was just after 5 PM when he called with the good news. IHe seemed unconcerned about it. He also said I should decrease the dose of Levothyroxin to 1/2 a pill, and go back for blood work in six weeks, because the TSH was too low and I was too hyper taking a whole pill. This should be interesting, because my doctor here told me to go back for more bloodwork in six months, not six weeks. Thank God for valet parking! It was in the mid-twenties in ville, and there was ice on my windshield! The charge was $4. I would have gladly paid much more! Each time a gave them a five dollar bill, they tried to return the change. I would have paid a lot more than $5 to avoid walking in that bitter cold. At least it's bitter cold for FL. Thanks again for all the feedback, help, and support from everyone here. Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2011 Report Share Posted January 1, 2011 Good News hypothyroidism Date: Friday, December 31, 2010, 9:47 AM All of you on this forum have impressed me with your knowledge, especially now that I've had more testing done, and found out I have Hashimoto's. My antibiodies were sky high. If I remember right, he said they were over 800. He is sending all the results here, so I should have them next week. Fortunately for me, the biopsy came back benign. You knew all along that there was something more than an underactive thyroid, and you were right. I was very impressed by the Mayo Clinic. The blood was taken on Monday. I saw the endocrinologist on Tuesday, and he apologized because he had tried, but had been unable to schedule the biopsy for the same day as my appointment with him. He spent over an hour with me, explaining things and answering my questions. Wednesday I had the biopsy, and the doctor called me himself with the results right after he saw his last patient. It was just after 5 PM when he called with the good news. IHe seemed unconcerned about it. He also said I should decrease the dose of Levothyroxin to 1/2 a pill, and go back for blood work in six weeks, because the TSH was too low and I was too hyper taking a whole pill. This should be interesting, because my doctor here told me to go back for more bloodwork in six months, not six weeks. Thank God for valet parking! It was in the mid-twenties in ville, and there was ice on my windshield! The charge was $4. I would have gladly paid much more! Each time a gave them a five dollar bill, they tried to return the change. I would have paid a lot more than $5 to avoid walking in that bitter cold. At least it's bitter cold for FL. Thanks again for all the feedback, help, and support from everyone here. Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2011 Report Share Posted January 1, 2011 Now there's a doctor I haven't seen. I'll keep that in mind. Thanks Roni. Barb Good News hypothyroidism Date: Friday, December 31, 2010, 9:47 AM All of you on this forum have impressed me with your knowledge, especially now that I've had more testing done, and found out I have Hashimoto's. My antibiodies were sky high. If I remember right, he said they were over 800. He is sending all the results here, so I should have them next week. Fortunately for me, the biopsy came back benign. You knew all along that there was something more than an underactive thyroid, and you were right. I was very impressed by the Mayo Clinic. The blood was taken on Monday. I saw the endocrinologist on Tuesday, and he apologized because he had tried, but had been unable to schedule the biopsy for the same day as my appointment with him. He spent over an hour with me, explaining things and answering my questions. Wednesday I had the biopsy, and the doctor called me himself with the results right after he saw his last patient. It was just after 5 PM when he called with the good news. IHe seemed unconcerned about it. He also said I should decrease the dose of Levothyroxin to 1/2 a pill, and go back for blood work in six weeks, because the TSH was too low and I was too hyper taking a whole pill. This should be interesting, because my doctor here told me to go back for more bloodwork in six months, not six weeks. Thank God for valet parking! It was in the mid-twenties in ville, and there was ice on my windshield! The charge was $4. I would have gladly paid much more! Each time a gave them a five dollar bill, they tried to return the change. I would have paid a lot more than $5 to avoid walking in that bitter cold. At least it's bitter cold for FL. Thanks again for all the feedback, help, and support from everyone here. Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2011 Report Share Posted January 1, 2011 Barb, Excellent news! A great way to start the new year. Happy New Year, everyone. You wrote: > > ... He also said I should decrease the dose of Levothyroxin to 1/2 a pill, > and go back for blood work in six weeks, because the TSH was too low and > I was too hyper taking a whole pill. This should be interesting, because > my doctor here told me to go back for more bloodwork in six months, not > six weeks. A 50% change in dosage is pretty large. Six weeks is needed for things to stabilize after such a change. OTOH, if your local doctor thought the dosage was close to ideal and stable, six months to a year could be appropriate. They both could be right, sort of, just at different times. Let us know what your actual tests showed, though, so we can see if you really were hyperT. If you were only a little over the line, a smaller dosage change might have been more effective. > > Thank God for valet parking! It was in the mid-twenties in ville, > and there was ice on my windshield! The charge was $4. I would have > gladly paid much more! Each time a gave them a five dollar bill, they > tried to return the change. I would have paid a lot more than $5 to > avoid walking in that bitter cold. At least it's bitter cold for FL. > We went from shirt sleeve weather, near 70 oF to the low teens with wind. I almost left my coat in the car last night. I was glad I didn't when I went home. Chuck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2011 Report Share Posted January 1, 2011 Barb, You wrote: > > ...He said problems with the thyroid can > cause swelling, that I should watch it, and if it gets bigger, see my > doctor here. High antibodies means your thyroid gland is going to be inflamed. It is under attack. That is what the -itis in Hashimoto's Thyroiditis means. Inflammation can cause swelling or edema in nearby tissue. If that is what is going on, the swelling should go away when the antibodies calm down. Chuck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2011 Report Share Posted January 1, 2011 I'm so glad you can start the new year with some good news! Even Hashimoto's is in a sense good news, because it provides some level of explanation for some of the confusing issues you have. But I'll be darned if I can understand how it could explain all of them. The bad news about Hashimoto's is that dosing can be a real PITA until your thyroid is completely destroyed. As for knowledge Chuck certainly has a massive level; probably IMHO a lot more than many doctors. And Roni has acquired a lot of expertise the hard way with her quest for improved health. Most of the rest of us learn from them and from others who share their trials and tribulations here and from what we read on the subject; as well as what we have personally experienced. As for the swelling I'm afraid that once again I'll have to admit I haven't a clue if there truly is no lymph node involvement; I would have bet there was. In any event it appears you're making progress; congratulations and all the best throughout the new year. Regards, .. .. > Posted by: " H " macbarb0503@... > <mailto:macbarb0503@...?Subject=%20Re%3A%20Good%20News> > westieabbey <westieabbey> > > > Fri Dec 31, 2010 9:48 am (PST) > > > > > All of you on this forum have impressed me with your knowledge, > especially now that I've had more testing done, and found out I have > Hashimoto's. My antibiodies were sky high. If I remember right, he > said they were over 800. He is sending all the results here, so I > should have them next week. Fortunately for me, the biopsy came back > benign. > > You knew all along that there was something more than an underactive > thyroid, and you were right. > > I was very impressed by the Mayo Clinic. The blood was taken on > Monday. I saw the endocrinologist on Tuesday, and he apologized > because he had tried, but had been unable to schedule the biopsy for > the same day as my appointment with him. He spent over an hour with > me, explaining things and answering my questions. Wednesday I had the > biopsy, and the doctor called me himself with the results right after > he saw his last patient. It was just after 5 PM when he called with > the good news. > > The only thing that wasn't clear is why I have swelling behind the > collar bone, at the base of my neck, on both sides. When I asked the > doctor if the swelling increased the chance there was a malignancy, he > said no because he couldn't feel any swollen lymph nodes under the > swelling. When I asked him if he had seen swelling there before he > said, " Oh maybe a time or two. " Huh? He said problems with the thyroid > can cause swelling, that I should watch it, and if it gets bigger, see > my doctor here. He seemed unconcerned about it. > > He also said I should decrease the dose of Levothyroxin to 1/2 a pill, > and go back for blood work in six weeks, because the TSH was too low > and I was too hyper taking a whole pill. This should be interesting, > because my doctor here told me to go back for more bloodwork in six > months, not six weeks. > > Thank God for valet parking! It was in the mid-twenties in > ville, and there was ice on my windshield! The charge was $4. I > would have gladly paid much more! Each time a gave them a five dollar > bill, they tried to return the change. I would have paid a lot more > than $5 to avoid walking in that bitter cold. At least it's bitter > cold for FL. > > Thanks again for all the feedback, help, and support from everyone here. > > Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2011 Report Share Posted January 1, 2011 Thanks Chuck, The doctor at Mayo said my TSH was too low judging by blood tests taken twice by my doctors here while on one pill a day. He said he didn't like to see it that low. Because I told him my heart rate had been 145 when exercising and 100 resting he thought I might have been hyper. He also based it on the information I gave him that while on one pill a day I was having difficulty sleeping, nervousness, lost 8 pounds in 10 weeks, and was feeling hyper. The blood draw at the Mayo clinic after I had been off of Levothyroxin for about six weeks, with the exception of 5 days, was back up over 7. So I definitely wasn't hyper when I was at the Clinic. After the last blood tests, I was told by the doctor here to go back on the medication, but after 5 days, was told to stop again by the Mayo Clinic. It seems a very small amount of medication makes very big changes in my numbers, so you could be right that a change of 50% could be too much. I'm going to keep a record of how I feel each day as Roni suggested. I will let you know about the blood tests after the paperwork arrives. That was a huge change in your weather! It's a good thing you didn't leave your coat in the car, because you needed it! I hope today is the first day of a very good New Year for everyone here! Barb Re: Good News Barb, Excellent news! A great way to start the new year. Happy New Year, everyone. You wrote: > > ... He also said I should decrease the dose of Levothyroxin to 1/2 a pill, > and go back for blood work in six weeks, because the TSH was too low and > I was too hyper taking a whole pill. This should be interesting, because > my doctor here told me to go back for more bloodwork in six months, not > six weeks. A 50% change in dosage is pretty large. Six weeks is needed for things to stabilize after such a change. OTOH, if your local doctor thought the dosage was close to ideal and stable, six months to a year could be appropriate. They both could be right, sort of, just at different times. Let us know what your actual tests showed, though, so we can see if you really were hyperT. If you were only a little over the line, a smaller dosage change might have been more effective. > > Thank God for valet parking! It was in the mid-twenties in ville, > and there was ice on my windshield! The charge was $4. I would have > gladly paid much more! Each time a gave them a five dollar bill, they > tried to return the change. I would have paid a lot more than $5 to > avoid walking in that bitter cold. At least it's bitter cold for FL. > We went from shirt sleeve weather, near 70 oF to the low teens with wind. I almost left my coat in the car last night. I was glad I didn't when I went home. Chuck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2011 Report Share Posted January 1, 2011 Thank you . It is confusing isn't it? I understand what you're saying about dosing being a PITA. Because of that, I'm surprised doctors don't suggest removing the thyroid surgically while we're younger, rather than waiting until we're older, when surgery could be riskier. Since we know it isn't going to get better, is there really a benefit to keeping it when it seems unlikely it can remain stable? I have a friend who had a non-malignant growth on her thyroid, and surgery was done to remove it. She wasn't having trouble breathing or swallowing, so maybe it depends on the doctor. I don't think the Mayo Clinic doctor had a clue about the swelling either, since he said " maybe a time or two, " when I asked him if he'd seen this type of swelling before. It was not a definitive answer. Maybe I'm just weird. When I go back to the endocrinologist here, it will be interesting to hear what he has to say about it. I'm curious about how these doctors will respond to the fact that I canceled the biopsy here because I was tired of waiting, and had it done at the Mayo Clinic. I would much rather have had the diagnosis here, but the Mayo Clinic did in three days what these doctors couldn't or wouldn't do in four and one half months. Thanks for the good wishes and for writing back. Happy New Year to you and yours also. Barb Re: Good News I'm so glad you can start the new year with some good news! Even Hashimoto's is in a sense good news, because it provides some level of explanation for some of the confusing issues you have. But I'll be darned if I can understand how it could explain all of them. The bad news about Hashimoto's is that dosing can be a real PITA until your thyroid is completely destroyed. As for knowledge Chuck certainly has a massive level; probably IMHO a lot more than many doctors. And Roni has acquired a lot of expertise the hard way with her quest for improved health. Most of the rest of us learn from them and from others who share their trials and tribulations here and from what we read on the subject; as well as what we have personally experienced. As for the swelling I'm afraid that once again I'll have to admit I haven't a clue if there truly is no lymph node involvement; I would have bet there was. In any event it appears you're making progress; congratulations and all the best throughout the new year. Regards, .. .. > Posted by: " H " macbarb0503@... > <mailto:macbarb0503@...?Subject=%20Re%3A%20Good%20News> > westieabbey <westieabbey> > > > Fri Dec 31, 2010 9:48 am (PST) > > > > > All of you on this forum have impressed me with your knowledge, > especially now that I've had more testing done, and found out I have > Hashimoto's. My antibiodies were sky high. If I remember right, he > said they were over 800. He is sending all the results here, so I > should have them next week. Fortunately for me, the biopsy came back > benign. > > You knew all along that there was something more than an underactive > thyroid, and you were right. > > I was very impressed by the Mayo Clinic. The blood was taken on > Monday. I saw the endocrinologist on Tuesday, and he apologized > because he had tried, but had been unable to schedule the biopsy for > the same day as my appointment with him. He spent over an hour with > me, explaining things and answering my questions. Wednesday I had the > biopsy, and the doctor called me himself with the results right after > he saw his last patient. It was just after 5 PM when he called with > the good news. > > The only thing that wasn't clear is why I have swelling behind the > collar bone, at the base of my neck, on both sides. When I asked the > doctor if the swelling increased the chance there was a malignancy, he > said no because he couldn't feel any swollen lymph nodes under the > swelling. When I asked him if he had seen swelling there before he > said, " Oh maybe a time or two. " Huh? He said problems with the thyroid > can cause swelling, that I should watch it, and if it gets bigger, see > my doctor here. He seemed unconcerned about it. > > He also said I should decrease the dose of Levothyroxin to 1/2 a pill, > and go back for blood work in six weeks, because the TSH was too low > and I was too hyper taking a whole pill. This should be interesting, > because my doctor here told me to go back for more bloodwork in six > months, not six weeks. > > Thank God for valet parking! It was in the mid-twenties in > ville, and there was ice on my windshield! The charge was $4. I > would have gladly paid much more! Each time a gave them a five dollar > bill, they tried to return the change. I would have paid a lot more > than $5 to avoid walking in that bitter cold. At least it's bitter > cold for FL. > > Thanks again for all the feedback, help, and support from everyone here. > > Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2011 Report Share Posted January 1, 2011 Thank you Chuck. Do you think the antibodies will calm down when the TSH goes down? I also wonder if eating habits and exercise which help to reduce inflamation in the body, will make a difference in thyroid antibodies. Is it possible to get the antibodies to stop attacking the thyroid, by eating only foods that don't cause inflamation? I know these are probably dumb questions, but this is how I learn. I'm thankful to be able to learn from everyone here, who has experience and knowledge in this area. Barb Re: Good News Barb, You wrote: > > ...He said problems with the thyroid can > cause swelling, that I should watch it, and if it gets bigger, see my > doctor here. High antibodies means your thyroid gland is going to be inflamed. It is under attack. That is what the -itis in Hashimoto's Thyroiditis means. Inflammation can cause swelling or edema in nearby tissue. If that is what is going on, the swelling should go away when the antibodies calm down. Chuck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2011 Report Share Posted January 1, 2011 Barb, You wrote: > > Thank you Chuck. Do you think the antibodies will calm down when the TSH > goes down?... Probably no connection with TSH, diet, or anything else. The antibodies will stop when the thyroid is no longer functioning. In many cases, iodine and our meds, will only accelerate the attack. For some people, the antibody attacks can come and go over a prolonged period before they settle down. All you can do is keep adjusting the meds until you reach a stable (full replacement) dose. Chuck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2011 Report Share Posted January 1, 2011 I think doctors have been blaming patients for their illnesses for such a long time that we now think that if we could just do the " right things " we could help ourselves. When the medical profession starts conducting themselves as doctors instead of fee collectors maybe they will actually be able to help their patients maintain and keep their health. <>Roni Immortality exists! It's called knowledge! Â Just because something isn't seen doesn't mean it's not there<> > > Thank you Chuck. Do you think the antibodies will calm down when the TSH > goes down?... Probably no connection with TSH, diet, or anything else. The antibodies will stop when the thyroid is no longer functioning. In many cases, iodine and our meds, will only accelerate the attack. For some people, the antibody attacks can come and go over a prolonged period before they settle down. All you can do is keep adjusting the meds until you reach a stable (full replacement) dose. Chuck ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2011 Report Share Posted January 1, 2011 Well those antibodies aren't very nice! I'm looking forward to reaching a stable full replacement dose, so they will stop, or at least settle down. Thanks for the information Chuck. Re: Good News Barb, You wrote: > > Thank you Chuck. Do you think the antibodies will calm down when the TSH > goes down?... Probably no connection with TSH, diet, or anything else. The antibodies will stop when the thyroid is no longer functioning. In many cases, iodine and our meds, will only accelerate the attack. For some people, the antibody attacks can come and go over a prolonged period before they settle down. All you can do is keep adjusting the meds until you reach a stable (full replacement) dose. Chuck Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2011 Report Share Posted January 2, 2011 Re: Good News I think doctors have been blaming patients for their illnesses for such a long time that we now think that if we could just do the " right things " we could help ourselves. When the medical profession starts conducting themselves as doctors instead of fee collectors maybe they will actually be able to help their patients maintain and keep their health. <>Roni Immortality exists! It's called knowledge! Just because something isn't seen doesn't mean it's not there<> > > Thank you Chuck. Do you think the antibodies will calm down when the TSH > goes down?... Probably no connection with TSH, diet, or anything else. The antibodies will stop when the thyroid is no longer functioning. In many cases, iodine and our meds, will only accelerate the attack. For some people, the antibody attacks can come and go over a prolonged period before they settle down. All you can do is keep adjusting the meds until you reach a stable (full replacement) dose. Chuck ------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2011 Report Share Posted January 2, 2011 I know what you mean Roni. It was worth a try anyway. I just thought maybe there was something that could be done to slow down the process of the antibodies destroying my thyroid. Too bad we don't understand why they do it. If we did, maybe we would know how to stop it. Barb Re: Good News I think doctors have been blaming patients for their illnesses for such a long time that we now think that if we could just do the " right things " we could help ourselves. When the medical profession starts conducting themselves as doctors instead of fee collectors maybe they will actually be able to help their patients maintain and keep their health. <>Roni Immortality exists! It's called knowledge! Just because something isn't seen doesn't mean it's not there<> > > Thank you Chuck. Do you think the antibodies will calm down when the TSH > goes down?... Probably no connection with TSH, diet, or anything else. The antibodies will stop when the thyroid is no longer functioning. In many cases, iodine and our meds, will only accelerate the attack. For some people, the antibody attacks can come and go over a prolonged period before they settle down. All you can do is keep adjusting the meds until you reach a stable (full replacement) dose. Chuck ------------------------------------ Quote Link to comment Share on other sites More sharing options...
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