[gkthompson]

#1060146

My daughter was diagnosed with graves disease last month. She was given the only option of radiation with oral meds because levels are too high for surgery removal of thyroid. She is resisting the radiation and thinks because she feels better this week she will be ok. Her doctors have warned her of a thyroid storm and this terrifies me. I want to support her fully, but I’m afraid every time she leaves the house. Any advise from other family members going through this with their loved one?

[Kimberly]

#1180741

Hello and welcome to our forum. I’m sorry to hear that your family is going through this. There are actually *three* treatment options for hyperthyroidism due to Graves’: Anti-Thyroid Drugs, which block the production of thyroid hormone, Surgical Removal of the thyroid (thyroidectomy) and Radioactive Iodine (RAI), which destroys the thyroid gland.

All three options have risks and benefits, so it’s definitely important to understand the pros and cons of each. The “Treatment Options” thread in the announcements section at the top of the forum has two good links that can help you sort through the risks and benefits.

Your daughter definitely needs to select one of these options, as uncontrolled hyperthyroidism can not only increase the risk of thyroid storm, but can also lead to bone/muscle wasting and heart issues.

If your daughter might be willing to post on this forum, we have a lot of collective experiences here that we would all be happy to share. She might also be interested in checking out the videos from the GDATF’s YouTube site:

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

http://www.youtube.com/user/GravesAndThyroid/videos

Take care – and thank you for being such a great advocate for your daughter!

[npatterson]

#1180742

Dear “Mom”,

(I was just typing this and lost the whole thing…hope I can remember what I was saying)

Probably the best thing you can do is become well-informed yourself. There is excellent information available, both here, and from the established medical sites–all have information for patients–but ours in the best;) IMHO

WE hear from parents and loved ones frequently, and the one theme that runs through all of them is that you have no control over that person. The best (again) you can do is become well informed.

Do you suppose your daughter would let you accompany her to her next doctor’s appointment? There are several reasons for that, one of them being to be her extra set of ears. Frequently, the patient doesn’t really hear all that the doctors says because it is just “too much”.

The board is here for you, and/or your daughter.

Take care,

Nancy

[adenure]

#1180743

Has she been given the option for anti- thyroid drugs (methimazole or PTU)? Usually that is the first course of action to stop thyroid hormone production (or slow it down) so that her thyroid hormone levels will get closer to normal range and hopefully within normal range. Once that happens, then she would be able to look at all 3 treatment options with her doctor and make a good decision. Some people are able to take anti-thyroid drugs long term, some opt for RAI, others for surgery.

From what I understand having thyroid hormone levels close to normal is ideal for not only surgery, but for RAI as well. During RAI, the thyroid dumps the stored up hormone into the body. If there is a lot, it can be a rough few days while all those hormones are zipping around, making the person deal with some hyperthyroid symptoms. Where if the patient is closer to normal hormone levels, the thyroid “dump” isn’t so big.

For surgery, it is probably more important to have better levels though. I had surgery as I couldn’t stay on methimazole (it was causing me liver issues). I was on the methimazole for 7 weeks and then had surgery 6 weeks after I stopped it. Fortunately, I was able to get my hormone levels normalized within those 7 weeks and they stayed there while I waited for surgery. I had labs every week while I was off the meds. to make sure I was okay. One of my friends ended up in the ER because of her uncontrolled hyperthyroidism (from Graves). They put her on betablockers I think and she had her surgery fairly quickly after the ER visit. So, I do not think her levels were ideal, but she was unwilling to do RAI and the surgeon was willing to remove her thyroid. She was fine and is doing well now.

I would ask the doctor about starting on methimazole, trying to get her levels to a normal range and then reconsider the possibility of surgery if she is not open to RAI. If she is (apart from Graves) healthy and a good candidate for surgery (once her thyroid hormone levels are normalized with methimazole), then maybe it will be a possibility. My endo. wanted me to do RAI as well, but I didn’t want to. Although he didn’t recommend surgery, he did support me in my decision. Let us know how she is, and do let her know that she must do something to manage her hyperthyroidism. Not taking the methimazole or PTU is a very dangerous thing when she is hyperthyroid. My friend who ended up in the ER had Graves for 10 years and was on anti- thyroid drugs on and off all that time, but she let things slip and had a scary episode. Fortunately, she is okay now.

[snelsen]

#1180744

Hi Mom,
From your post, I am assuming that she is on anti=thyroid medication now. Probably methimazole. Is this correct? If this is correct, she WILL begin to feel better, for the name of this category of meds (there are a couple other ones)
“anti-thyroid” helps block the insane over production of thyroid hormone.

As Kimberly described, there are three treatments. So review her post again.
Alexis provided some good information about her experience.

When we are first diagnosed with Graves’, like your daughter, ALL OF US are hyperthyroid. Then we take anti thyroid(called ATD’s) meds. To feel better, to keep us safe, to avoid any possibility of thyroid storm (which is rare, but can occur with UNTREATED hyperthyroidism,) So, again, that is why ALL OF US begin with the ATD’S.

THEN we have three choices, usually up to us. We choose based on our own personal choices. There are rare times when there is a compelling reason to have surgery, for instance, if there is something seen on the scan that needs a biopsy to confirm.

So I have a few big messages for your daughter.

1. You feel better because you are on an anti thyroid medication. It is protecting you. Do not stop taking it. You will NOT be ok if you stop taking it. Thyroid storm is a possibility ONLY if you leave your Graves’ untreated. THIS IS NOT AN OPTION.

No matter what we choose, we begin with ATD’s. You have TIME to decide what you want to do, and to talk to other docs, read this site. Nothing is an emergency, except if decided to stop taking your ATD’s and that is a poor decision that I imagine you won’t do.

2. You have every right in the world to resist radiation. The treatment is almost always our choice. Some of us resist radiation. Some of us want nothing to do with surgery. Some of us want to continue on ATD’s, and see if that keeps us in a healthy state. There are varying opinions on how long we can take ATD’s without proceeding to radiation or surgery at some point. But the choice is there. Kimberly, our facilitator has been on ATD’s for several years. I had surgery. Others on the site, RAI.
Shirley

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