[vvny]

#1059183

Hi,

I am 16 years old, and I have been diagnosed hyperthyroidism. My doctor put me on Methimazole, but I had an allergic skin reaction so it was discontinued. As of right now, I am only on a beta blocker to help keep my heart rate down. My parents and I have been contemplating other options we could take. They are firm believers in alternative medicine, and although I don’t believe it could help, I am having a hard time convincing them otherwise. They are worried that the hormone supplement will hinder me in the future if I have to take it everyday for the rest of my life. Have any of you had experience with this? Can you help me persuade my parents?

Also, I am planning to go on vacation in 11 days or so. Is it too late to get the treatment before? And if I do, will I experience side effects during?

I’m not going to lie, I am very afraid of making the wrong decision and marring my future, but there seems to be no other options. Concerning the hormone supplement, are any of you dealing with that? Does it impact your life significantly? And is there some sort of a given schedule that I need to follow in taking it?

Thank you.

[Kimberly]

#1172774

vvny – Hello and welcome to our forum. I’m so sorry that you are dealing with this at age 16! I have not had RAI, but here are a few thoughts…

1. You can read more about the Foundation’s position on alternative treatment options in the “Treatment Options” thread in the Announcements section of the forum (above the regular posts). Bottom line, abandoning conventional treatment in pursuit of an unproven, alternative treatment can be extremely dangerous, and we do not advocate this approach.

2. The latest guidance on treatment of hyperthyroidism (which you can also find in that “Treatment Options” thread, notes that for “minor” skin irritation, you can keep taking the drug in conjunction with antihistamines. For minor and persistent reactions, switching to the other anti-thyroid drug (PTU) is an alternative, if treatment via RAI or surgery are not options. However, a doctor would need to make a judgment call as to whether or not your reaction was “minor”. Continuing to take an anti-thyroid drug – or switching to the other anti-thyroid drug – is not recommended for more serious reactions.

3. There are generally no side effects from taking thyroid hormone replacement. However, it’s important to understand that finding the right dose of replacement hormone takes time. Once you do go hypo after RAI (or immediately after thyroid surgery), your doc will make his/her best estimate at what your initial dosage of replacement hormone should be, based on factors such as weight and age. Then you will have a follow up set of labs done in 4-6 weeks to determine if that is the correct dose for you. It *does* take several weeks before you know if that is the right dose, because it takes some time for thyroid hormone levels to build up in your body. If the next set of labs reveals that you are hypER or hypO, the doc will make an adjustment, and you will follow up in another few weeks. So it may take several iterations before you find the right dose that will keep your thyroid hormone levels in the normal range – and get you to feeling good again.

4. Following RAI, there are restrictions on having close contact with other individuals, so having this treatment right before getting ready to share a motel room or small vacation home with others would probably be a challenge. Also, you will generally be given some limitations in terms of hours/day that you can safely travel via bus, air, train, etc.. (You would also need to carry special documentation for air travel, as there is a possibility of setting of radiation detectors). Your doctor or nuclear medicine specialist can give you more specific guidelines, as they can vary from state to state.

5. If you have any eye involvement, you might wish to consult with an ophthalmologist before pursuing RAI, as there is some concern that this treatment option could potentially worsen existing eye issues.

6. If you are on Facebook, there is a group for teens with Graves’. This is not a “hosted” group like this one, which is monitored by trained facilitators, but it is an open discussion for teens who are dealing with Graves’. I don’t have the direct link, but if you ask to join this group (which is for Graves’ parents) and ask for the link, one of the moderators for the parents group should be able to get you connected. http://www.facebook.com/groups/265484340175004/

(Note on links: if you click directly on the above link, you will need to use your browser’s “back” button to return to the boards after viewing. As an alternative, you can right-click the link and open it in a new tab or new window).

As a side note, the Foundation has patient advocates who would be happy to communicate with you or your parents via phone or e-mail. As with this board, advocates cannot give specific medical advice, but can provide general information. You can reach us at 877-643-3123 or at info@gdatf.org.

Take care – and keep us posted on how you are doing!

[adenure]

#1172775

Hi!

I took methimazole but had a severe liver issue with it (which righted itself once I stopped taking the meds.). So, I had surgery 3 weeks ago. I’m on Synthroid (synthetic thyroid hormone supplement) and I haven’t had any issues at all. I started taking Synthroid the 2nd day after surgery and I never experienced being hypo. I will get my 1st set of labs to check my dose in about 2 weeks, but I don’t feel as if my dose is too far off from normal (if at all). So, if you have surgery, you might not necessarily go hypo first. It could happen if the initial dose of Synthroid isn’t enough, but that is easy enough to fix by increasing the dose after your labs. It does take time to probably get the dose just right. I don’t feel 100% myself yet, but I’m only 3 weeks post op and am not sure what my eventual dose of Synthroid will be. I will tell you though that I fell WAY better than I did before surgery when I was hyper and WAY better than I did even when my thyroid hormones were balanced on methimazole. I didn’t have symptoms for liver issues, but I still just didn’t feel great on methimazole in general. Not terrible, but not “healthy”. I actually feel pretty darn healthy and strong as of the last few days and it’s reassuring that yes, I will be my normal, healthy self again as far as all this thyroid business goes!

I think healthy eating, exercise, sleep can all help our health and particular circumstances, but I would not rely on them solely to treat Graves and hyperthyroidism. Left untreated, Graves can be very serious, even deadly. Your heart is a muscle and Graves causes muscle waste. Graves is like a whip & your heart the horse getting the whipping (elevated heart rate). It’s nothing to mess with. Beta blockers may help the heart rate, but they don’t slow down or stop thyroid hormone production which can lead to muscle waste and osteoporosis over time.

It sucks having to deal with Grave, but there are ways to make us better.

Alexis

[Author]

Posts