[Souris]

I was recently diagnosed and after a nuclear medicine scan I was told that I needed to choose whether I wanted to go through radioiodine therapy or have a thyroidectomy. This decision has been a major trigger of anxiety for me, because this is a very big choice to make. And I was wondering if anyone had any advice for me, whether that be about living with Graves' Disease in general, or about which treatment you think is best...It would be greatly appreciated.

Hi,
I was diagnosed Graves' Thyroid Disease at age 24, shortly after giving birth. I was told it could have been pregnancy that triggered it, and it may have gotten better on its own. I wanted to wait, but I lost too much weight, and he said it was muscle I was losing. What I wish I had considered were alternatives to the radiation and radio iodine. I've never been the same since, even on a higher end of the spectrum for thyroid levels, as you will be taking supplements for the rest of your life, if they don't get it right with the iodine, and they will most likely shrink your thyroid, and then you take supplements for it.
I honestly think that supplements do not do the same thing as your actual thyroid. Despite being on the high end of TSH-4, I gained a huge amount of weight, struggled with gaining muscle back.
Do NOT wait too long to decide how you are going to treat this. The longer you wait, the more destruction to your muscles, including your heart.
I wish I could tell you what treatment, but I'm not a doctor. Be sure you are diagnosed by a specialist that knows what Graves Thyroid Disease is.
I've just recently switched to a natural thyroid supplement, because of thinning hair, and hoping this will make a difference.
Hugs, I hope this helps in some way.

[-jimi-]

I'm not sure how it is treated today, but my mom had it long ago. She had the radioactive therapy, and looking back I think that is the best treatment if you can have it. Sometimes they want you to have surgery because of very nodular thyroid. If not, I can't see much good in a complete amputation of a gland.

My mom does well without thyroid meds, she is slightly hypothyroid but prefers no meds. Oftentimes you will need the meds BUT you will not be as dependent on them as if you had the gland out, then the thyroid med is a life and death thing.

Say something happened and you had no access to thyroid hormone replacement for a while. With the hypothyroid caused by the radioactive iodine you would feel bad but survive, without the gland... well... you would not because with it out, you have a 100 % dependency on the med.

I assume when they say surgery, they mean taking the whole gland out? Otherwise it is a totally different story.

[Souris]

I am 22 now, and was just diagnosed back in December, but it's likely that I've had it for years and didn't know until the symptoms got way out of hand. I was having a lot of difficulties over the summer and had spells where I was experiencing lightheadedness, sweating, my vision going black, tachycardia, and a few other things. That's what fainlly got me to go in to see my doctor. My doctor then did some blood tests and referred me to an endocrinologist who confirmed Graves' Disease after more testing.
I had a nuclear medicine scan done to measure my uptake levels and since the levels are so high, my endocrinologist said I needed to choose which to do.
It's just a big decision to make and I appreciate the input that people have.

I think jimi's advice was right on, its not going to be better getting a complete thyroidectomy. Have you made a decision, and how are you feeling? Just checkin in on ya.

[Souris]

I'm actually leaning toward getting the surgery, to be honest.
I only work part time and can't afford to be out of work too much.
Surgery would be a lot less time out.
And would have the least amount of side effects.
To be honest, I don't have the means to deal with the incredibly restricted diet that you have to maintain while undergoing radioiodine treatments, and I already have body dismorphic disorder so the physical changes, like hair loss, would be really hard on my mental health.
And with the surgery, I don't think they'd be doing a complete tyroidectomy anyway...I have to discuss everything with my endocrinologist when I go back for my next appointment.
As for how I'm feeling...I'm tired. I'm just so burnt out but that's to be expected, even with the medications.

Hi Souris,
I don't understand the part about how surgery would take less time. When I had treatment, I needed no time off. Well, they tell you for a week, to flush the toilet twice etc, as you are emitting radiation. I can't remember, its been so long ago, but I know I took one radio iodine pill, and had maybe 2 or even just one radiation treatment to the thyroid gland. I would think it would be much easier. There was no hair loss with the treatment I had. It's pretty simple, and something fairly common. 1 in 10 people end up having either a slow thyroid gland or an overactive one. I hope you get well soon, whichever treatment you decide to take. Take good care of you. hugs

[-jimi-]

If they are going to leave thyroid gland after surgery, surgery is not too bad. The main problem with surgery when you take the whole gland away is that your life will depend on medication. Not trying to be a doomsayer but... the world is in a weird place right now, and if there is disruptions in peace and infrastructure, we will run out of meds for a while. Most people can handle it for a while, but lacking a gland your life depends on will make you very ill very fast without proper med. If you still have some gland even if you are dependent on thyroid med, you will not be as sick as fast.

I know people don't think like I do in these matters. I'm just into having as good safety margins.

I also know some docs want to take out the whole gland even when it is not necessary because medication afterwards is easier, you only have the med as the hormone source. If you have to have meds after the surgery and you have a partial gland, it will have its ups and downs and a good level of medication might be tricky with a lot of dosage managing.

[Little Lulu]

I had Graves' disease about 14 years ago. My case was mild so I took a beta blocker and let it run it's course. I am now hypothyroid and take Synthroid daily.

If you opt for surgery, be sure you have a good surgeon who does a lot of thyroidectomies. The thyroid gland is adjacent to the vocal cords and the surgery can disrupt the voice.

Hugs - I know you aren't feeling well.