[worriedcuz]

#1018000

Hello,

I have a few questions about this disease. First of all, I have two cousins that have this. The first cousin is being treated with medication and is responding to it really well. My other cousin is not how ever. There is something in the medication that makes her break out. Now before they both had children they did not have this disease, they got it after having their first child. I would like to know if anybody knows anything more about this disease that the information off the internet is not telling me. I love my cousins and the one that is not responding to any of the medication is literally dieing. I would like to know if anyone else is going thru the same thing she is.

[Kimberly]

#1062111

Thanks for joining our board – and for being a great advocate for your cousins! There are over 40 free articles posted on our web site that cover all different aspects of Graves’ Disease. If you go to our home page at http://www.ngdf.org and click on the word “Publications” (ignore the drop-downs), you will see several different categories of information. You can either print the bulletins or download them in PDF format.

If you have other specific questions, either using the search option on this board or posting a question on the bulletin board will hopefully help you get the answers you are looking for.

There are actually three treatment options for the hyperthyroidism that occurs with Graves’ Disease: Anti-Thyroid Drugs, Radioactive Iodine (RAI) and surgery to remove the thyroid gland. Hopefully, your cousin who is not responding to the Anti-Thyroid Drugs is aware of the other two treatment options. (You didn’t mention how long ago your cousin had her baby, but RAI is not recommended for women who are breastfeeding). Graves’ Disease is *very* treatable…but sometimes we have to be extremely assertive to ensure the we (and our loved ones) are getting the care that we deserve.

[snelsen]

#1062112

Hi, I think your cousins would profit from joining us! This is a very accurate and supportive site. They will not feel so alone, and will be writing to people who "get it" We are all at varying stages of Graves. You’ll see this if you read a few posts.
The word "medication" can mean many things, depending on where she is with Graves’. It is also important for both of your cousins to have and endocrinologist involved in their care at this time. But I am not sure if they are at the stage of anti-thyroid drugs and beta blockers (usually given when people are first diagnosed, and very hyper)
After the person is at a more balanced and healthier state with their thyroid (called euthyroid) or at least not dangerously hyper anymore, there are three treatments, and all of us pretty much have our own reasons for choosing one of these treatments, as Kimberly discussed below.

Thanks for writing for your cousins. They are lucky to have a concerned cousin like you!
Shirley

[worriedcuz]

#1062113

kimberly and Shirley,

Thank you for the information. My oldest cousin her name is Mindy, She was diagnosed about a year after her son was born, and that was about 7 years ago. Now she is the one that is responding to the Anti-thyroid drugs, and is doing very well. Now my other cousin her name is Heather, she was diagnosed with Grave’s about 5 months ago i believe. Her child was born 2 years ago. Now with Heather, there is something in the Drugs that is causing her to have an allergic reaction. Now she was told that the RAI has a ingredient that is the same thing that is in the Anti-thyroid drug, which is what is causing her to have the allergic reaction.

[Ski]

#1062114

If your cousin is only 5 months from her diagnosis, she is VERY early in her treatment. Everything thyroid takes time to treat and solve. That’s just the way it is.

There are some who experience an allergic reaction to the ATD (anti-thyroid drug), but there is nothing in the RAI that is remotely similar to the ATD or that would produce the same effect for the same reason. You may want to discuss that with your cousin again ~ if that’s what your cousin believes, then perhaps you’d be a good advocate for going along to doctor’s appointments. Hyperthyroidism can result in confusion and shortened attention span, so we often recommend having someone go along with the patient to early doctor’s appointments, and perhaps even taking notes. The doctors don’t have a lot of time for us, and anything we can do to get the most out of the time we do get with the doctor is worth it.

All that said, surgery is a valid third option for treating Graves’ Disease that your cousin could use in order to get well, if ATDs aren’t working and RAI doesn’t seem like a good choice for her. Count her lucky for having the correct diagnosis ~ the most severe problems are reported in patients who have long periods of hyperthyroidism before getting the right diagnosis.

We’d love to meet both of your cousins here, please do suggest that they drop by!

[aaronsly]

#1062115

Basically, Graves’ disease is a common form of hyperthyroidism. It is an autoimmune disorder that happens because of an overactive thyroid gland. Your immune system will mistakenly attack your thyroid gland. It can also affect the tissue behind your eyes or the skin on your lower legs.

Everyone react differently to different medications and having an allergic reaction to the ATD is not uncommon.

[snelsen]

#1062116

Agree with Ski on all her comments. And, I think someone needs to ask more questions about the relationship between ATD’s and RAI. It is a little worrisome that she was told that, makes no sense.
I suggest your cousin Heather go to an endocrinologist who is familiar with Graves’. With this disease, we have a long relationship with our docs pretty much forever.
She needs to report her allergy symptoms to her doctor. There all degrees of the word "allergy," and some need attention right away. If it is mild itching, he/she might suggest to her to take benedryl. But she should definitely report it. There is also an alternative drug which is an ATD. Sometimes, a person really cannot tolerate one of the ATD’s but does fine with the other one. She needs to be pretty involved with a good doctor while she learns a lot more about Graves’. I hope this is possible for her. Your cousin should have been told to have thyroid labs and liver function labs done as she began taking the ATD. Did this happen?

The following comment is just for general interest. Not applicable to your post about your cousin.
Having said that about allergy, it has been my experience that the general public gets the word "allergy" confused with "side effects." I have worked in a hospital for many years, and heard people tell me that they have an allergy to narcotics. On further questioning, they had decided that being constipated was an allergy, but that is not correct.

I think she would profit a lot by joining this bulletin board.
shirley

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