[Tina]

#1060055

Hello Everyone,

My name is Tina. I am 29 years old and have been diagnosed with grave’s disease two years ago. I have been taking methimazole since being diagnosed. My levels have normalized, but my gland is still enlarged. My doctor told me that I can stay on methimazole for 2 years max. and then I have to stop it. Next month is time for me to stop the medication. I have been given by my doctor two options, iodine or surgery. I am having issues and I am confused which way to go. If I choose iodine, what could be potential side effects after the radiation? What are the positives and negatives of surgery? Any advice would be much appreciated. Thank you and looking forward to your responses.

Tina

[Kimberly]

#1179995

Hello and welcome! Some docs will insist on stopping anti-thyroid drug therapy after 18-24 months, but the latest medical guidance actually does leave the door open for longer-term use if that is the patient’s preference. I’ve personally been on Methimazole for 6 years now.

ALL three of the treatment options 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 forum also has a search function (in the top right-hand corner of the screen), so you can run a search for “methimazole”, “RAI”, “thyroidectomy”, “surgery”, etc. to read stories from other patients.

Take care – and please keep us posted on your decision!

[bigad]

#1179996

Hi Kim,

Did you have to find an Endo doc that would support you on long term ATD use, or do you have another doctor (primary?…alternative?). Did you ever stop taking mmi, or has it been a straight 6 years?

Thanks,
James

[Kimberly]

#1179997

Hi James – I’ve been working with the same endocrinology office since I was diagnosed in 2007. (Two different doctors, since the practice brought on a new doctor when one went on maternity leave). I’ve been on Methimazole the entire time. The docs mention to me during most of my visits that TT and RAI are options, but they respect my decision that I want to stay on the meds for now. I have some eye involvement, so this would be a concern if I did RAI – and I would have to pay out of pocket for thyroidectomy, as I do not have good insurance.

[bigad]

#1179998

Thanks Kimberly. Have you ever been close to remission, or are you still waiting for your TSI to reduce? I’m only 3 weeks on mmi, so I’m at the beginning of this journey, but the ATD/remission route is appealing, but I’m aware that some people relapse if they stop ATDs early.

[Kimberly]

#1179999

Hello – I had antibodies tested earlier this year (both TSI and TRAb) and they are still extremely high. If I discontinued the meds right now, a relapse would be very likely.

[mwhitney]

#1180000

My whole graves experience was rather quick.
I hit a wall with methimazole after 5 weeks. I didn’t have enough to to research surgery or interview any surgeons so I went with the RAI.

I did it on april 15th. I didn’t have any problems during it, it was pretty easy and really hassle free, most of it is really hygiene based. (funny part is I actually had a thyroid storm when I did an uptake scan, which is a really really tiny dose, more problems with that surprisingly)

I’m a bit strange, my levels started tanking after 2 weeks, not the norm.
I’ve been on snythroid for about 7 weeks, I’m completely hypo now.
Feeling much better, I ended up with body aches and being really tired when my levels started going down (I still have some body aches). The only other thing I noticed is my weight has been frozen at what I weighed when I did the RAI, something to think about.

I know everyone seems to have a different tale to tell. But I can say I feel much better now.

Good luck with your decision making! I know it’s daunting. I was really scared about the RAI, I was able to call the hospital and pick the radiation scientist’s brain and rattled out all my concerns, that really helped me.

[Tina]

#1180001

Thank you everyone for all of your input, I really appreciate it.

Whithney, thank you for sharing your experience with RAI. I am glad you are feeling much better now and that things are getting normal. I think I am going to go with RAI, something about surgery really scares me. But I still have about a month to think about it. Also, I am scare about RAI, but since I have only two options I have to pick one of them. I wish I could stay on methimazole for longer, but my doctor doesn’t want to keep me on. Plus, sometimes I am experiencing some dizziness, I think this is because my levels are changing (TSH and T4) from time to time. I hoping things to get better, especially when the time comes to stop the methimazole. My doctor told me that after the methimazole is stopped 80% of the patients relapse.

I will update everyone again once the time comes. I am really glad I found this website, so I can read, research, and share more about Graves.

Thank you!

[snelsen]

#1180002

Hi Tina,
As you have read on this thread, opinions about everything are all over the map. In almost all people, all the choices mentioned by Kimberly, and experienced by the rest of us, are good choices.

I think the most important thing is that this deadline of a month is not sealed in cement. There are rare instances when a deadline and urgency is really required in health care. Take the time you need to feel very content about the decision YOU make.

I encourage you to continue to express your choice of continuing on ATD’s.
This includes a consideration of getting a second opinion. If you read “old” studies, they will say what your doctor said. However, this is changing, as evidenced by Kimberly being on ATD’s for over 6 years, and by others. I am not sure, but I think Kimberly can reference some data for you that shows that the longer you are on ATD’s, the incidence of remission increases.

The most important thing is, the choice really is yours, given all other factors being equal. I suggest your read the recent posts of people who have had TT, to get a balanced views, plus the references on this site. I chose a TT.
There are advantages and disadvantages, mostly from a personal preference, to each treatment. Including you own feelings, and the availability an experience surgeon for a TT, plus the relevance if a woman is wanting to get pregnant. For the waiting time is a lot longer with RAI.

Another question I would explore more, is the fact that your gland is enlarged. Maybe that is a good reason to consider TT, if you really do go off ATD’s.
Welcome to the forum. It is great.
Shirley

[Kimberly]

#1180003

Hello – Studies on remission rates and longer-term use of anti-thyroid drugs have been somewhat mixed. There are several that did not show a benefit from longer-term duration (which is why the current guidance generally suggests shorter-term therapy), but here’s one that had more positive results:

(Note on links: if you click directly on the following links, 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://www.ncbi.nlm.nih.gov/pubmed/23397523

Also, here’s one on the longer-term continuous use of Methimazole:

http://www.ncbi.nlm.nih.gov/pubmed/15879354

A second opinion might be helpful if you truly prefer to remain on anti-thyroid drugs at this time, but as mentioned previously, *all* three options have risks and benefits.

Wishing you all the best as you make this decision!

[Renee]

#1180004

Age when diagnosed, 54
I was diagnosed in 2009 with Graves Disease, I was placed on Anti Thyroid Drugs for a year then weaned off to see what would happen. Had blood tests every month for the next year then the Endocrinologist told me that if he saw me again it would be to remove my thyroid. With my mouth closed I said you will not be removing my thyroid. If my immune system attacks my thyroid again I will get many second opinions, I have been ATD free for 3 years, I have tried to keep stress free and right weight. If I am tired or feel my bones ache I rest for the whole day. I do not believe I will ever be Graves free, I will always have Graves disease.
Thanks everyone for your stories and caring of others with Graves.
Renee.

[mamama28]

#1180005

I have been diagnosed of graves 13 years ago, and hv been on ATD for 8 years straight. Had 3 times relapse, currently thinking about surgery as my eyes are affected.

ATD is not that scary, and I dont see it cant continue for years as long as no severe side effects.

[Author]

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