[dtingraves]

#1059479

Hi everyone,

I am a college student and this whole process has been overwhelming for me. Any and all advice is more than welcome.
This all started after I gave blood (which I had done many times before). I was feeling extremely faint like I did immediately after giving blood days after. I went to the doctor and blood tests revealed that I was anemic. I was put on iron supplement and got more blood work done at a gastroenterologist and a general family doctor. I tested positive for Crohn’s Disease and soon after was told I was hyperthyroid from another doctor. I then had a CAT scan for Crohn’s and had an ultrasound and iodine uptake tests for my thyroid. The CAT scan showed nothing (which does not rule out Crohn’s), but both doctors suspected Graves’ and told me to address this issue first before having a colonoscopy to confirm Crohn’s.

Before the tests came back, I was concerned that I was making all of this up. No one seemed to believe I had an actually physical issue. I have not been myself for a while now. Aside from extreme fatigue, rapid heart rate, and the other physical issues, I have become uncharacteristically anti-social and irritable. I used to wear contacts daily, but now they irritate my eyes so much that I can’t wear them for more than an hour.

Both of my doctors only discussed one option with me. I am hesitant to have RAI done. The idea of being dependent on medicine for the rest of my life (I’m in my early 20s) is not appealing. I asked my doctor to be retested to confirm that I am still hyperthyroid in a month, although I’m certain I will be. He put me on beta-blockers in the meantime. He told me that I have “textbook symptoms for Graves’.” What I’ve seen online about life post-RAI has worried me, particularly the weight gain.

Any type of advice regarding the disease or RAI is appreciated!

[Bobbi]

#1174949

Being hyperthyroid makes us extremely ill. So, the fatigue, irritability, etc. goes hand in hand with being ill. You need to get your thyroid levels under good control.

No matter how you approach treatment (antithyroid meds, RAI, surgery are the ONLY valid approaches), there can be weight gain. We lose muscle mass while hyperthyroid, which LOWERS metabolism. Some, if not all, of the muscle comes back after we are appropriately treated, and this raises metabolism. But many people complain that there are weight issues they never experienced before. I am unconvinced of that, but you will see it online, including here. I do think we need to be careful in our eating habits, once we’ve been hyperthyroid for any length of time. But I have been able to control my weight by eliminating “empty” calories (sugars, artificial sweeteners, etc.).

The pill you don’t want to take after RAI (or surgery) is chemically identical to the body’s own T4. The only side effect issues for it involve having too much of it (we become hyperthyroid) or having too little (hypothyroid). Inasmuch as the antithyroid drugs (ATDs) didn’t agree with me, I don’t find taking this one pill every morning to be any type of hardship. Many people can take the ATDs safely, with good results. And approximately 30% of these patients do experience a remission — which, by definition, is temporary. But remissions have been known to last years, and that might be something you want to discuss with your doctor. Depending upon the size of your thyroid, and other medical factors, your doctor might think you are a candidate for remission (or not).

[Khadijah]

#1174950

Hi! I’m new too but much older. I feel for you having to deal with this at such a young age and going to school.

That said, it takes a while to come to grips with this disease and unfortunately there really isn’t any way to avoid taking meds for the rest of your life. Just focus on getting well. What were the results of you uptake? I think that determines whether or not you have graves? When do you go back to the doctor?

Read through the posts and hopefully you will get a better idea of what you want. Neither option is easy. I myself, have not made a decision yet.

Good luck! Keep us posted!

[Kimberly]

#1174951

Hello and welcome! The “treatment options” thread in the announcements section of the forum has some great resources for making a treatment decision.

Also, as you go through your studies, the following article might be of interest. It was written for parents of school-age children, but it has some great advice for *all* students, regardless of age!

(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://gdatf.org/about/about-graves-disease/patient-education/students-graves/

I am one who believes that for some patients, weight *can* be a struggle following treatment, regardless of which option you choose. I personally used to lead meetings for Weight Watchers and had to quit because my own weight became such a struggle. If you do a search on this board for “weight”, you can read other stories as well. However, remember that your #1 priority right now is to get your thyroid hormone levels stabilized, which will get you back on the path to good health.

Take care!

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