[slem3]

#1060615

I was diagnosed with Graves three years ago after my third child was born. I’ve been treating with methamizole since and I’ve had my ups and downs. I was in remission for a short time but that didn’t seem to last. I have been on 2.5mg for several months but I’ve started to relapse. Over the last month or so, I’ve had to increase up to 30mg. My doctor says I have to remove the thyroid and RAI is my best choice. This terrifies me and I want to find another way but I’m also tired of being sick.
Is RAI the only thing left? Has anyone done it and had regrets or happy success. I feel angry and alone and just want some insight! I just found this site and wish I’d know about it sooner!
I can post lab results if that would help!

[Kimberly]

#1183649

Hello and welcome! You are free to post labs here, but we are very careful about not crossing the line into giving medical advice, which includes interpreting labs.

Hopefully, others here who have had RAI will jump in here with their experiences. The most important thing is to do your research and understand the risks and benefits of all three treatment options. The “Treatment Options” thread in the announcements section of the forum has a couple of nice links.

A second opinion might also be helpful if you think your doctor is rushing you into a decision. The “Looking for a Doctor?” thread in the announcements section has several options where you can search by city/state/zip.

We have patients here who have been success stories both with RAI and with surgery – but it’s critical to understand all of the risks going into either treatment option.

Wishing you all the best!

[Claire95]

#1183650

Hi,

I was diagnosed with Graves nearly nine years ago. I was on Tapazole for awhile and then had a five year remission. I relapsed and went back on Tapazole and was in remission for about a year. I relapsed again in the fall and had RAI in February. I had a very low dose in hopes of becoming euthyroid. At this point, I have no regrets. My thyroid levels are in the normal range. My Dr. is slowly decreasing my dosage of Tapazole. I have felt fine through the whole process and I have had no change in my weight. Overall, I’m glad to have it behind me.

[snelsen]

#1183651

Hi slem3,
I had a thyroidectomy. That is the other choice. I think this should have also been mentioned to you as an option. Not sure where you live, but like all surgeries, surgeons tend to specialize in certain procedures, so if you decide to do this, it is best to find one who does at least 50 a year. I did not want RAI. I did want surgery. It is a personal choice, unless there is a compelling reason that you need to understand and believe, of one of the other.
I think a second opinion is in order, or better still, if you are interested in a thyroidectomy. Make an appointment with the surgeon.
Shirley

[Sube08]

#1183652

I was diagnosed 8 years ago, after 5 years of PTU and Beta blockers my doctor kept hounding me about it so I finally said ok to RAI. It was an anxious time before and after, mostly anticipation of what will happen next. Nothing about the RAI process is frightening, you go in for an uptake scan, then the next day you drink the stuff and go home and don’t have contact with anyone for a few days while the medicine clears out of your system. Then you wait, sometimes weeks and months for your thyroid to slowly die off.

It’s been three years almost exactly to the day for me and I’m still hyperthyroid. The difference for me is that I don’t have any ill effects from being hyperthyroid at this point as I believe it killed off a bunch of my thyroid just not all of it. Of course I’m at odds with my new Endo because she’s pushing for more RAI, it’s sad really because I had my last Endo, that moved out of state, convinced to let it be and let me take the Methimazole, I no longer need the Beta blockers. My thyroid levels have fluctuated some but mostly the T4, T3 and TSH are all below 5.0 (I started out in 2007 with a T3 of 1299.0 and T4 of 356.0)

I found through a co-worker an Endo that actually SPECIALIZES in Thyroid disorders and that’s a rare find! I’ve got an appointment with him in a month, to see what his opinion is. So you can always get a second opinion.

If you have insurance a phone call to them to find out what it pays would be helpful, unlike myself I never gave it a thought. But that’s just my experience and I hope it helps in someway. This form has been a god send to me, I’ve found out so many things I never new but was glad to find out and it’s made me an educated patient.

Best regards Suz

[slem3]

#1183653

Thank you all for your comments!! It really helps hear others who have done what I’m about to start. Surgery was mentioned but my thyroid is HUGE and they said of run more of a risk of hitting my vocal cords or etc…. I thought a lot about the surgery because I have three young children and I’ll have to be away for 7 days with RAI.

My biggest fear is that once it’s done, either RAI or surgery, there’s is no turning back. I pray that the result will be a good thing but with my
Luck, who knows!!

I’m still set to do the RAI, still scared but labs continue to showy
Disease getting worse…

I want my life back, I want to have energy, I want to be able to play with my kids, I want the control back. I’m hoping the rai will help me succeed with that!!

Thanks again. Really appreciate it.

[snelsen]

#1183654

Hi slem3,
I suggest you speak with a surgeon about a thyroidectomy. Not sure who mentioned it, but if it was endo, INMO they are not a bit qualified to make this judgement. Not sure which doctor told you that your thyroid was too big. Sounds like you are open to good information about both options. And my other post to you.
It is very hard, at your stage of Graves’ to believe you will EVER feel good again..but you will.
Shirley

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