Methimazole

[Dibs42]

My daughter (6 years old) was diagnosed the beginning of June with Graves.  Since then we've been on Methimazole.  We started with Atenolol but 3 weeks into it was put on Propranolol 4 times a day  to get her heart rate under control.  We were told that in a couple of weeks if her numbers weren't down we'd be doing RAI.  Next visit the numbers had moved T3 was down from 15.9 to 7.1.  We were happy to finally see progress.  We just had blood last week and will be going back this week to see if the numbers are continuing to go down.  My question is....if her numbers are going down, why does she still have so many strong symptoms?  We have a good day here and there and many, many bad days.  She gets severe joint pain.  She woke up a few nights ago in pain because her knee had swollen and she could not move it.  The week before it was in her ankle and toe.  At six years old, if the medicine is causing severe side effects, what is the next best treatment?  There are no surgeons in this area to handle this kind of surgery for a 6 year old and I'm not convinced that RAI for my little girl is the best option either.  How long can a person "safely" be on methimazole and propranolol?  When her levels are "normal" will she ever be back to a normal life or will we always be on this roller coaster?  

[Mark Lupo, M.D.]

Tapazole can be safe, but there are severe side effects of liver toxicity and low white blood count that must be kept in mind and monitored.  PTU has  a higher risk of liver damage, particularly in children and is usually avoided.

With this severe/early onset Graves, it may not go into remission with anti-thyroid drugs like tapazole, so definitive therapy should be considered.  I would be reluctant (ie, not likely) to give RAI.

Certainly an expert thyroid surgeon could address this, but it may be necessary to go to a university center where they have such expertise.  Do your research to make sure the surgeon does at least 2 thyroidectomies a week and operates on children regularly.

[punkin1515]

ok it is ... about thyroid.com
by Mary Shoman scroll down and you will see forum. Hope to see you there soon. If you don't want to join just browse through on the Graves section. There is a little girl named Elizabeth who is 5 years old on our forum, I think you would be most intrested

[punkin1515]

I think your daughter may be too young for RAI. The MMI is ver safe and its a great med. you need weekly labs to monitor WBC. I was 4 weeks into the MMI and my WBC crashed. It was horrible sores in my mouth and 1 week in hospital Cancer ward to escape germs.
The Propranolol is also safe and helps with the T3. I also have a swollen knee and severe joint/bone pain on the MMI. I am now on the PTU and not doing well on that either.
Please google....thyroid disease support info ... great site and many moms with young children on here. Also go to Elaine Moore site. She is wonderful post your question there. These are not Doctor sites just many whom have and are going through what you and you daughter are. It is wonderful. Please join us. Cara (carebear on that forum) I will keep your daughter in my thoughts and prayers. It is so NOT FAIR that a child must endure this disease. TC Cara