[mpykinz]

#1060187

Hello!

I’m new here, but I’m not new to Graves Disease. I just started joining communities for my disease, as I didn’t even bother learning about it before. I just wanted to share my story about RAI and Synthyroid with all of you, especially those of you who were just diagnosed. I am not trying to convince any of you to have the treatment I had, or take the medicine I take. I just want you to know that not all cases are “worse case scenario”.

I was diagnosed when I was 17-years-old. I am now almost 21. I went to the doctor thinking I was anemic: I had hair falling out, I had freezing hands and feet, I had heart palpitations whenever I stood up and my vision was going black, I had a killer metabolism and was always hungry and thirsty, and I had severe anxiety that caused something called “derealization”. These symptoms had not been going on long at all until I went to go see a doctor about it, and for that I am lucky.

When I was presented with options for treatment, I chose radioactive iodine. Why? I didn’t want scars or complications from surgery. I also didn’t want the side effects from the anti-thyroid drugs, and that was almost immediately shot down. My pediatric endocrinologist suggested RAI, and my parents and I agreed that was the best choice. I was never bothered by the fact I would have to take a tiny pill the rest of my life. There are times it bothered me post-treatment: what if the world ends and I can’t get my medicine, or I’m stranded on a deserted island? Well. . . I’d be SOL. So would a lot of other people, especially those who are diabetic or on dialysis. Therefore, I have made peace with my decision.

How do the RAI treatment go? It was a walk in the park. I had no side-effects. I didn’t have any “sour taste” in my mouth, which I’ve heard some people get. I basically stayed home for a week and played video games. I didn’t develop TED post-treatment; in fact, my endocrinologist said he believed that they treated it soon enough that I wouldn’t develop it in the future (and one can only hope so). I can’t remember exactly how long it took until I was started on Synthyroid: a month, perhaps? It didn’t seem like a very long time, but that was also four years ago.

It took a year to get me to 125mcg, where I stayed for the longest time. I gained weight, and it was raised to 137mcg for a year, and I started taking generic. I’ve since switched back to brand name, and that explanation is below. I never (until recently; again, see below) had any complications and lived like a fairly normal teenage girl would. I will tell you I still have anxiety, but my mother and grandmother both have it bad so I may just be preconditioned to it. I have trouble concentrating and have a lot of “brain fog”, but I was like that even before I got treatment and I am just used to it by now. I don’t have the limitless energy some of my friends seem to have, but never did; I was also never athletic, so that may also contribute to that. I know if I “party too hard” I regret it for about a week. I still have irregular periods (once every two-three months) and I feel malaise and dizziness prior to starting. I also get colds easily, it seems. But isn’t that because of a compromised immune system? I’m just glad (and very, very lucky) that I never had to deal with long-term hypo or hyper symptoms.

Now, I did have one episode recently where I became very ill. I was skipping doses while on the generic, getting wasted almost every night, eating like crap, taking over-the-counter vitamin supplements with my daily dose, and I started smoking. I really had stopped taking care of myself entirely. I eventually woke up one day with very bad dizzy spells, and kept getting worse. I had high blood pressure by the next day (150/100) and a fast heart rate, and I felt like I had the flu. I was zapped of energy to the point I was very concerned: I seriously could not stay awake, but I also couldn’t sleep, and I kept having panic attacks from the worsening anxiety. I went to the doctor and was told that my levels (I don’t have the actual numbers) were so low that it looked like I hadn’t taken my medicine in a week. Once I convinced him I had been taking it, I was switched to brand name Synthyroid (I’ll also explain this) and had my dose upped to 150mcg. During this whole ordeal, I think the stress of it all reactivated the mononucleosis I had had a year prior, and that just made it wonderful. :rolleyes: I was sick for two months. So let this be a word of caution to all of you: don’t mess around with your medicine! Take it how you’re suppose to, don’t take it within four hours of taking certain supplements, and avoid drinking alcohol. . . at least heavily. If you do this, you should have a good experience.

I have since had my dose lowered back to 125mcg when I started to go hyper (0.3 TSH). I think that the doctor lowered it too much, as I started having hypothyroid symptoms (sluggish, headaches, lack of appetite, weight gain, worsening brain fog). I probably should have never touched the dose in the first place (137mcg was probably where it needed to be), and just let it “even out” again. I won’t know conclusively until my next labs. I will say that my hypothyroid symptoms have lessened within 4 weeks of starting the new dose, while they were rampant during the 2-3 week mark.

Know that, sometimes, not all symptoms go away when your levels return to normal. You’ve still got an incurable auto-immune disease and so you might not have as much energy as your friends or something. But don’t let that get you down! You should be proud to know that the only thing strong enough to kill you is your own damn body!

Hang in there, all of you! : D

[Kimberly]

#1181090

Hello and welcome – thanks so much for stopping by to share your story!

It’s wonderful for newly diagnosed patients to read success stories…and we can *all* use the reminders about the importance of self-care and NOT messing with our medications!

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