[llucas]

#1058708

Hello,

I found this website in hopes of support from others who have this disease. I was diagnosed with Hashimoto’s in 2009, and 8 months ago they told me i now have Graves disease. I am not sure what I should do with my treatment plan. I am on a beta blocker and currently having an allergic reaction to tapazole. (swollen face, rash, abdominal pain, diarrhea etc.) So my endo wants me to start PTU. Is there anyone out there that has tried PTU because frankly the side effects from these drugs scare me. I am reluctant to recieved RAI 131 and a thryoidectomy because of the horror stories I have read on different websites I came across. Any help would be appreciated….

Lisa

[Kimberly]

#1169488

Hello – All three of the treatment options have risks and benefits, so it’s important for you to do your own research and make an informed decision.

You might also do a search on this site for “ATDs”, “Anti-Thyroid Drugs”, “Surgery”, “Thyroidectomy”, “RAI”, “Radioactive Iodine”, etc. to read some first-hand experiences from patients who have selected the various options. Keep in mind, though, that just because someone else had a positive or negative experience with a particular option, that doesn’t necessarily mean you will have the same experience.

Here’s an article from Dr. David Cooper on the three treatment options for Graves’ that might be helpful. (You will need to click your browser’s “back” button to return to the boards after viewing the article).

http://www.ngdf.org/cms/modules/files/u … 586097.pdf

Hope this helps!

[gatorgirly]

#1169489

Hi Lisa,

I was on PTU for just over a year before I had the RAI. I had no side effects from the PTU. In fact, I started to feel better right away because I was not nearly as severely hyper. Unfortunately, I was on a very high dose of PTU and still remained hyper – my thyroid had a mind of its own! But my endocrinologist made sure my liver function was checked every few months because of the possible risk, and Kimberly can confirm this but I believe the risk of liver damage is pretty much zero if you get through the first 90 days of PTU with no problems. I don’t know what other side effects you’ve heard about PTU. My endocrinologist warned me it could cause joint pain, but I never experienced that until AFTER the RAI, when I went back on the PTU for a short period of time until the RAI finally kicked in. And it was very minor, and I think it was possibly more attributable to slowly becoming hypo rather than the PTU.

It’s of course a personal decision, but I wanted you to know that there’s at least one person out there who did just fine on a high dose of PTU for 14 months, finally accepted remission was not in the cards for me and had RAI, and 22 weeks post-RAI I officially became hypo and am now on my way to being euthyroid (I’ve been on 100mcg Synthroid for 3 weeks).

[Bobbi]

#1169490

It is, indeed, a personal decision, but it is my understanding that when someone has the antibodies for both Graves AND Hashimotos, and as a result, is subject to cycling between hyper and hypo levels of thyroid hormone, that serious consideration be given to removing the thyroid. Your doctor can give you the best explanations for whatever treatment option is offered, and you should ask lots of questions.

[Kimberly]

#1169491

@gatorgirly – Yes, the more serious side effects with ATDs generally occur within the first 90 days, although it’s a good idea to err on the side of caution and report any suspicious symptoms (like a sore throat with fever) no matter where you are in the treatment process.

[Lina1]

#1169492

Lisa,

I’m taking PTU right now and it has done fairly well for me. I have not suffered any major side effects and I have been taking it for a year. I started at a higher dose and am now down to a lower dosage. I’m actually quite happy that I gave PTU a try, being a young woman who would like to get pregnant once my thyroid is under control. In my case, PTU worked very quickly. My hyperthyroidism was under control very soon after starting the PTU even though I started out extremely hyper. The side effects that they list are can be serious, but there are a few things that you can do to help catch any potential problems before they get bad. Insist on having your blood work done regularly for liver function and white blood cells. Also, really "listen" to your body. If you’re experiencing any symptoms of side effects call your doctor right away and get their opinion. Everyone is different and this is just my experience, but at least you’re hearing from a few people that are taking PTU and doing okay!
-Lina

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