Guest guest Posted August 12, 2003 Report Share Posted August 12, 2003 Hi , So happy you shared your and Lillie's experience here. You seem to be doing a great job as a mom, and to have found a great doc, too. I don't have any strong recommendations, but maybe a bit of experience that might be relevant: I have found a dramatic difference between taking my ATD's in one daily dose as opposed to dividing it. You don't mention how Lillie takes her meds, so I mention it because I found that once I started dividing it into 3x a day dosing, I started getting better really fast. My feeling is that it allows the thyroid to relax/rest/heal or something like that, if there's a steady level of suppression rather than a roller-coaster of once a day. Also, I'd say with her FT4 number a drop to 10mg. from 20 is warranted, again just from my experience. I made the mistake of trying to drop slowly and ended up hypo, where if I'd simply dropped a bit more quickly I wouldn't have had those symptoms. If you have a doc you trust, I'd go with her program on dosing and simply watch symptoms and get blood work done as needed. it seems to me that when we've had moms in the group talking about their kids atd experience, there have often been quite dramatic level changes. Amy's Pam, if she's around (you might put her name in a header) could probably attest to that. I suspect that kids respond really well to ATD's and that ending up hypo because it's time to drop the dose is pretty common. Finally, ending up on a maintenance dose of just a few mg. a day is not unheard of--that's where I am now, and quite comfortably. So don't believe all the reports that anything less than 5 mg. a day " doesn't do anything " when you hear them. Best to you and Lillie, Terry dx '95, ATD's currently about 2 mg. a day (split 1/2 and 1/2 AM PM), plus Chinese herbs > > Reply-To: graves_support > Date: Tue, 12 Aug 2003 17:01:10 -0000 > To: graves_support > Subject: Another mom > > Hello! > > My name is , and I'm the mother of Lillie, 17 yrs old, diagnosed > with GD in late May 03. After Tosha's and Betsy's letters, and the > responses, it seems like the time for me to jump in. > > I have corresponded with Elaine, as I was shy to join the group, being > a mother and not the patient. > > First of all, to Tosha: > My daughter has been doing very well on ATDs for 4 months, now, with > no adverse effects. I've done a ton of research, and have come to the > conclusion that ATD's are the only way to go. After the first month, > the endo ordered a battery of tests for white and red blood cell > counts, and all was well. > The odds are in your daughter's favor, especially with you as her > advocate. My heart goes out to you. > > I'd like to share with the group some of what I've sent to Elaine. > I'll start with the labs, and follow with personal info. > > I've been reading your posts, and have learned so much, including the > fact that it's good to follow your instincts and get lab-work done > sooner rather than later sometimes. > Recently Lillie's been a bit lethargic -- sleeping more than usual, > unmotivated. So we went to get her labs done 2 weeks sooner than > recommended. It was a good thing we did, as it's changed a good deal! > Now we're in the tricky part, I guess, and so I'd like to share her > lab and med history with all of you, and get your take. > > > 5/5/03: > TSI: 332 (<130) > T4 free, direct: 5.53 (0.83 - 1.44) > TSH: 0.051 (0.360 - 5.800) > T3: 565 (91-164 - for girls 16-18 yrs. old) > Thyroid uptake and scan: 82% (should be 25%) > > She began taking 30 mg of Methimazole on 5/8/03 > > 6/10/03: > T4 free, direct: 1.92 (0.83 - 1.44) > TSH: 0.055 (0.360 - 5.800) > T3: 247 (91-164) > (her white and red blood cell counts were tested on this day and found > to be normal) > > 7/7/03: > T4 free, direct: 1.60 (0.83 - 1.44) > TSH: 0.051 (0.360 - 5.800) > T3: 191 (91-164) > > Dosage lowered to 20 mg of Methimazole on 7/18/03 > > 8/8/03: > T4 free, direct: .86 (0.83 - 1.44) > TSH: 0.055 (0.360 - 5.800) > T3: 113 (91-164) > > Her dosage was just lowered yesterday, 8/11/03, to 10 mg. > > Our concern of course, is the low T4. > Is the new dosage of 10 mg correct under the circumstances, do you > think? > Is it OK to change so rapidly from 20 to 10 mg, or should she taper > for a few days, at 15? > How long before we see a change in the TSH? > Is there any way to know what to expect next? > Is there anything we should be on the lookout for? > Her eyes are about the same - slight proptosis, a bit bloodshot. > Goiter still present, but not really noticeable to untrained eye. > Her pulse is much closer to normal, her heat intolerance and her > trembling and palpitations have stopped. > Emotionally, she's remarkably stable right now. > Last question: Are there any mothers of teenagers with Graves out > there??? And does anyone know of a support group for teens that my > daughter might join? > > Here's the short version of her long, complicated story: > I hardly know where to start. She feels, and we agree, that she'd > probably had Graves for at least 3 years before being diagnosed. > Around when she was 13 and 14, her behavior and appearance changed > drastically. She went from being an extra-healthy, excellent student > in grade school, to a spiral of disastrous emotional and > school-related difficulties. Of course, we just thought she was having > an extra-rough adolescence (not so uncommon), and it never occured to > us that there might be a physiological explanation. There have been > many ups and downs -- Suffice it to say that we've all been through > the wringer for the past few years! It's a testament to her own > intelligence, resiliance and strengths that she is doing so well right > now. She is an amazing and beautiful young woman. Making the long > story short -- currently, after failing 11th grade, she's decided to > stop going to high school (i hate the term " drop out " ). It just seemed > like too much for her under the circumstances. The sky did not fall > in. She relaxed after making this hard decision -- a weight lifted > (stress reduction!). We've come up with what we feel is a good program > for her for the fall, including taking the GED (high school equilancy > diploma), art classes, music lessons, and a job. (Art and music are > her loves.) She might begin taking classes at the local community > college in the spring, or next fall. She would like to go to art > school when she gets better. > She's basically doing pretty well, now, and is in pretty good spirits. > We know we must be vigilant to keep her from going into > hypO-thyroidism. > > I look forward to hearing from the group, and to sharing info and > support. It's all still so scary, even if it is getting a bit more > comprehensible. > Thanks in advance, > > - > > By the way, I'd like to recommend Lillie's endocrinologist. She is a > young woman, named Dr. Ayesha Cheema, in Kingston, NY (Hudson > Valley/Catskill region). > She's been very responsive and thorough, and has not pushed the RAI on > us. In fact she recommends ATD's as the preferred treatment. > Oh and Lillie's also been doing cranio-sacral therapy. She seems to > > > > > ------------------------------------- > 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 August 12, 2003 Report Share Posted August 12, 2003 Dear Terry, Thank you for responding and for your encouraging words -- it means so much! >> I mention it because I found that once I started dividing it into 3x a day dosing, I started getting better really fast. My feeling is that it allows the thyroid to relax/rest/heal or something like that, if there's a steady level of suppression rather than a roller-coaster of once a day. The doc said it's OK to take one 10 mg pill a day, BUT, from reading the board, we decided to do 5 mg, twice a day. I'll show Lillie your post, and see what she thinks about trying to split it to 3 times a day. >> Also, I'd say with her FT4 number a drop to 10mg. from 20 is warranted, again just from my experience. I made the mistake of trying to drop slowly and ended up hypo, where if I'd simply dropped a bit more quickly I wouldn't have had those symptoms. If you have a doc you trust, I'd go with her program on dosing and simply watch symptoms and get blood work done as needed. Thank you! -- that was just what we were wondering ab Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2003 Report Share Posted August 13, 2003 Hi, , This is Amy's Pam. I've been out of the loop for a few days so missed some of the posts. Yes, I can definitely attest to the fact that Amy did respond quite nicely to the ATD's. The doctor was impressed as well. It was a real relief to see her stabilize so quickly after having had two others doctors attempt to force us into RAI, then to have a bad reaction to PTU. After beginning Tapazole, Amy's condition improved in just a month's time, with continued improvement all along. She didn't feel great right away, had lots of muscle aches, tired, irritable, etc., but she did make improvement and today is just on 5mg twice a day of Tap. She no longer needs to see the doctor every month, but is seeing him only every three months. That is great for her, especially since she used to get freaked out (a Graves' issue, I believe) every time she had to go in. Hang in there with what you're doing and if you have any questions, you can email me directly or through the group. Group might be better since other moms are out there gleaning what they can. Amy's Pam In a message dated 8/12/2003 2:18:45 PM Central Daylight Time, aldente@... writes: > it seems to me that when we've had moms in the group talking about their > kids atd experience, there have often been quite dramatic level changes. > Amy's Pam, if she's around (you might put her name in a header) could > probably attest to that. I suspect that kids respond really well to ATD's > and that ending up hypo because it's time to drop the dose is pretty common. > > Finally, ending up on a maintenance dose of just a few mg. a day is not > unheard of--that's where I am now, and quite comfortably. So don't believe > all the reports that anything less than 5 mg. a day " doesn't do anything " > when you hear them. > > Best to you and Lillie, > > Terry Quote Link to comment Share on other sites More sharing options...
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