[KristenB29]

#1060227

Hi all! I’ve recently been diagnosed and have been put on beta blockers to help control some of my symptoms. I have not been put on ATD’s yet and will be making a final decision come this Monday regarding either proceeding with ATD’s or going forward with RAI.

Endo recommends RAI based on my tests/blood work/high levels, but he will work with me if I decide on trying ATD first. My concern with ATD is the possible liver damage since my mother died last year from liver cancer and who knows if there would be that small chance it would impact my liver in any way. Then of course there’s the cancer concern with taking RAI. Even with that risk, I am leaning towards RAI since I prefer to tackle this on quickly and not mess with finding the right ATD and dosage that works for me. I’m inclined to think there is a very small percentage that ATD would even work for me in terms of ever hitting remission. It’s also very possible I am completely wrong. If only I had that crystal ball!

I’ve read through a lot of the posts and there is wonderful information. Thank you all providing such personal information on your battles! It is very comforting to see there is support from fellow patients!

I am looking to hear about more success stories from ATD’s and RAI. Can you chime in and let me know what may or may not have worked? I know everyone one is different and what works for one may not work for the next, but I am curious on any personal opinions you can share. Thank you!

[Kimberly]

#1181372

Hello and welcome – all three of the treatment options (surgery is the third) have risks and benefits. The “Treatment Options” thread in the announcements section of this forum has two great links that go through the pros and cons. This board also has a search function (in the top right-hand corner of the screen), so you can run a search for “RAI”, “methimazole”, etc. to read stories from other patients. You do have to be logged in to use the search function.

We have regular posters here who have gone through all three options. I opted to start with anti-thyroid drugs, primarily because I wanted to see if I could go into remission without doing something permanent. I am still not in remission, but my levels are in the “normal” range on a very low dose of the meds. There is a risk that eye issues could worsen following RAI, so that is a factor for me as well, since I have mild/moderate eye involvement.

I’m sure that others will chime in with their stories as well!

[adenure]

#1181373

Hello!

I was started on methimazole (ATD)- a low dose of 5 mg a day for 7 weeks. It got my thyroid levels normal, which was great! Unfortunately, I was one of the few who had liver issues. My enzymes went up 8 times the normal amount, so I was told to stop the drugs right away. They had my liver enzymes run 2 days after stopping the drugs to make sure they were coming down- which they were. Eventually, they returned to normal. I also had a liver ultrasound done to make sure no damage had been done- all fine. So, if you have liver labs along with your thyroid labs at the 6-8 week mark after starting the drugs, you should be okay- even if you do have liver issues. From what I understand, when caught early, any problems reverse themselves. I didn’t have any symptoms of liver issues, but my enzymes were still quite high from the ATD’s.

So… 6 weeks later I chose surgery. That was over a year ago and I’m doing well! I’m on Synthroid and have my normal life back again! Yippee! It’s not perfect, but it is good! And, I am grateful. I recently found out my dose was too high (112 mcg) even though it was fine for awhile. So, I’m on 100 mcg twice a week and 112 mcg five days a week, and I’m feeling better now.

I didn’t chose RAI bc I have 4 young boys including a nursing toddler (who at the time was an infant). I didn’t want to stop breastfeeding or be away from my family. I also had worries about eye involvement and didn’t want radiation. I also didn’t want a dead gland in my body or wait for it to die off. I wanted it out and wanted to move on with life with Synthroid. Yeah, I’m a bit of a control freak. Although not as bad as I used to be!

Everyone is different, so you weigh the risks and benefits of each treatment option and go from there. My endo didn’t want me to do surgery- he recommended RAI, but he did support me in my choice for surgery as medically, I was a good candidate.

Personally, I would start with the ATD’s, get labs done (with liver labs too- enzymes) and go from there instead of jumping into RAI. But, that is just me. Sometimes it’s hard to think clearly when we’re hyperthyroid so the ATD’s get us back to a normal place so we can be and think more like ourselves. Maybe you are okay there, but if you’re suffering from worry, anxiety, fear, and all the other mental issues that go with hyperthyroidism, you might want to try the ATD’s so that those symptoms subside and you can make a decision more clearly.

[barbra]

#1181374

Hi KristenB29,

I was diagnosed the middle of April this year, started out on Methimazole and beta blockers and then had RAI on the first of July.The endo did include a liver test early on in the usual lab work order.

I did have to go on a special diet for 5 days prior to the RAI and had to stay away from people and pets for 5 days afterwards. But that was the hardest part about it. I’m glad I decided to do it and it worked well. I went hypo after about 12 weeks, had some ups and downs but nothing like before the RAI.

I am now on Synthroid, 75mcg, working towards the ideal dosage. Of course, finding it requires adjustments and patience since it takes a few weeks for the new dosage to take hold.

Each of us had to make a decision as to what to do. None of it is an easy path by any means. There is no quick fix, unfortunately.

I went with RAI because it was something I could do on my own. Also, my insurance makes me pay 1/3rd of the cost of anything done at the hospital and surgery would have cost so much more.

I hope this info helps you just a little bit and I wish you the best of luck.

Hugs.

Barbra.

[KristenB29]

#1181375

Thank you all so much for the feedback! After considering all of the options/side effects/etc., I’ve decided to give the ATD’s a first try to see how those work first before jumping into RAI. I can’t wait to call the doctor tomorrow as I have not been feeling well and am ready to get started on something. I’ll keep you updated on my progress. Thanks again!

Best,
Kristen

[snelsen]

#1181376

Hi Kristen, sounds like a good, solid well thought out decision. You are safer, too, to get less thyroid hormone circulating around. That is why, regardless of which treatment you ultimately choose, ATD’s are generally the first step. And you will feel better, tool
Shirley

[Author]

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