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Post by ShawnS on May 17, 2004 16:10:26 GMT -5
Hello all,
Was wondering if any of your kids have hypothyroidism? Ryan is on 25mcg of lavoxyl for his and every time they try to raise the dosage he wiggs out, he cant sleep, and is obviously in discomfort. Is this normal? He is 19 months old and weighs 20 lbs. He has been euthyroidic since he started the meds at 2 weeks of age. Is it possible to miss diagnose hypothyroidism or can they out grow it? Ive asked the endo doc and he just shrugs me off. Every time we see him he says lets increase the dosage because he is getting bigger. What do yall think? Thanks, Shawn
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Post by wrblack on May 17, 2004 16:55:25 GMT -5
Charlie 4 3/4 has been under treatment for hypothyroidism since his 3 yr well check up. For a very brief time we made him artificially hyperthyroid. But we adjusted the dosage downwards based on labs, T3, T4, and TSH. I think I might be looking for a second opinion, and maybe another pediatric endocrinologist, if I had one who wanted to up dosage of synthetic thyroxine just because kid was getting bigger. Ohhh, Charlie may be overdue for another stick, I'd better check the calendar and see if I need to call anybody. But we're already slated to visit the new Trisiomy 21 program at CHOP (Children's Hospital of Philadelphia) next month. Maybe I'll just wait and check with them then. Let me know if you want any more of the boring and/or gory details of managing Charlie's hypothyroidism.
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Post by ashliesmomheidi on May 17, 2004 16:56:08 GMT -5
Ashlie had Hypothyroidism when she was 3 and then outgrew it supposedly at age 5, Then at age 6 was diagnosed with Hasmotos Disease a.k.a. Chronic Thyroiditis that leads to Hypo so she has been on Levoxyl for over a year now, She is at 100 mcg but she is also 7 and 50 pounds I noticed when it has to be raised by her attitude, She will get really sluggish and not herself at all so we do bloodwork every 6 mos with her Endo. and he watches her Blood Levels and Raises the dose when needed, He said she will probably stay on this dose for a couple years. I would definitley talk to your Endo or Ped about it, Something definitley doesnt sound right. As they do get bigger the doses to go up though Hugs Heidi
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Post by justinsmom on May 17, 2004 19:04:36 GMT -5
HI Shawn, Jackie here mom to Justin almost 4(June 10th) he is 42 inches tall and 41lbs and takes 25mcg of Levoxyl every day and has been since the age of 1. I have to agree with the others something doesn't sound right. Does he get his blood work prior to the doc wanting to increase or does the doc just assume because he is older he needs an increase. Justin has never had a decrease or increase but we have his levels checked every 6 months and they have been perfect on the same dose even with him getting older. It is suppose to go according to the levels not age and if your son is wigging out on a higher dose it's probably cause it's too strong and there wasn't a reason for increasing it. I would definitely get a second opinion or at least have his blood work done before increasing it. Also from what my pediatrician said the 25mcg is like a maintenance dose, their thyroid just needs a little kick in the pants so to speak , but for now that's all he needs.
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Post by coopersmoma on May 17, 2004 21:16:47 GMT -5
Cooper was started on synthroid 25 mcg when he was 1 month old, we give him a crushed pill w/baby food. We have actually just switched to the pill from a liquid compounded form of synthroid. Our pediatrician says that he doesn't think that compounded meds are as accurate as pill form. He has done well on this dosage and the Dr said we can wait a few more months before checking his TSH. Cooper is only 6 months old and I am really not sure how this effects him. The ped's at ACH(Arkansas Children's Hospital) told me that when there are problems w/thyroid that it can cause an irregular heart beat. Cooper is doing well.
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Post by MaggiesMom on May 18, 2004 1:05:44 GMT -5
Maggie started out as hyperthyroid, but now her levels are swinging back to hypo! Weird huh?
She has never been on meds, although her first endocrinologist wanted to put her on some. I got a second opinion at UVA and Dr. Clarke there said that it was not rare for EVERYONE's thryoid level to go up and down throughout the day. So if you haven't had but one set of blood work done, ask to have it repeated.
I know it's a nightmare to get that blood, it was for us, but it was worth it. Ask for a NICU nurse if you have to. They are usually very good at sticks.
The doctor told us at our last annual check up that as long as Maggie's anitbodies weren't acting up, we didn't have to medicate her.
I'd go with a second opinion too. We had the best in our area, and he didn't know squat about DS and thyroid problems.
Hang in there.
Robin M - Maggie's mom
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Post by YoshsMom on May 18, 2004 9:22:27 GMT -5
Yosh was on levoxyl for a while, until his bloodwork showed he didn't need it anymore. He took alternating doses of 12.5 mcg and 25 mcg by using a whole and then a half pill so he wouldn't get too much. I'd get more bloodwork done if I were you. Good Luck!
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Post by didmyheartgood on May 18, 2004 11:23:26 GMT -5
Hi Shawn... Brace has hypothyroidism. He is now 4 years old and weighs approx. 36 lbs. He is on .05 MG of synthroid daily.(pill form that is crushed and mixed with liquid) About 4 months ago, Brace was sleeping excessivly, very sluggish when awake and just wasn't acting like himself. After illness, or other problems were ruled out, his dr did all the lab work to determine thyroid levels... Brace had been on .25mcg, since birth. Blood work always revealed normal levels, so we never adjusted the dosage. Once his dosage was increased, Brace was back to his normal self within a couple of weeks. We have it checked annually, unless there is a problem showing before that. Brace has not had any "side affects" from his medicine, he has done great on it, once we got the dosage right for him. We personally did not experience any rapid heart rates or heart problems, but that doesn't mean they don't occur with thyroid medications. I wish you the best in finding a Dr that works well with you. That can make you have rapid heart beat, no doubt!! Take care, Kim
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Post by ShawnS on May 18, 2004 11:39:47 GMT -5
Thanks to all of you! Yes, he does have blood work done every visit which is once every 4 months or so. His levels have always come back normal. His endo doc says that at 1 or 18 months or by weight that he ussually will increase the meds because typically they need a little extra as they grow and get older. I agree with all of you that there doesnt seem to be a need to up the dosage if he is fine on the current levels. Anyhow, I guess Ill have to get a second opinion or just a different doc. Thanks, Shawn
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Post by meghans_mom on May 18, 2004 21:02:27 GMT -5
Shawn - you've already gotten some great advice but I'm just seconding it...if the levels are coming back normal - there's no reason to up the dose just because age or weight increases. It should be based on the labs. I'm a pharmacist and up until recently worked in a nursing home -- and we had patients at 60, 70, 80 - all different sizes and shapes -- some were on 25mcg, some were on 200 mcg. and every dose in between.
one word of caution with the thyroid meds...you said he's getting levoxyl. make sure that you get the same "brand" Levoxyl each time from the pharmacy...(which he should be if the RX is written properly)...the generics for Synthroid can vary greatly even at the same strengths which can wreak havoc on a person and the way they may absorb it or be affected. It's just something to double check w/ your pharmacist.laurie laurie
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Post by ALLISA on May 19, 2004 0:45:23 GMT -5
Shawn, My daughter Erin has been on Levoxyl since birth as well. She is now 4 and currently takes about 37 mcg's ( a pill and a half) a day. Like everyone else we get the blood work done periodically and they sometimes change the dose... she has been on the same dose now for over a year. Her doctor told me that it was possible to "outgrow" it and ever since he said that to me.... I constantly wonder if she still needs it. He also said that it was so important to not fool around espeically for the first 3 years of life when so much development was happening that it was best to be safe. Once over the summer we missed 5 days of medication because the pills were left at our vacation spot when we went home. I SWEAR she had a great week that week... she seemed to listen and respond and have GREAT eye contact... which at the time was rare for Erin. Of course I asked my docotr, but he said there couldn't be any corelation (sp?). Anyways....she is still on it... but she is pretty small for her age and her weight gain seems real slow to me.... she turned 4 in February and weighs about 23 pounds... wears 24 months for clothing. All her docs & specialist plot her growth and they say it if fine and prgoessive... so here I am still wondering if she really needs it. I'd like to NOT give it to her before her next blood test and see what the results from that are... I think my doctor would frown at that suggestion. And Thyroid problems are rampant in my family... I can scarecly think of an aunt or cousin who hasn't been affected (hypo & hyper)...so maybe it is just the genes !
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