[runlacie]

#1070215

I’m new and also curious. I think RAI is the radioactive iodine they use to irradiate they thyroid and I might be interested in this option. Seems to me that doing this, going hypo and taking thyroid meds would be better than taking the anti-thyroid meds.

Do any of the treatments keep you from getting the eye involvement? My Grandma has Graves and her eyes are really bad, to the point that one rolls all the way back and all you see is white. I’m kind of afraid this will happen to me. My endo appt is next week, so I guess I will learn more then.

[acgaravalia]

#1019225

After my MD appointment today, I was considering all the options for treatment. No treatments were planned, as I am to have a first appt with an endo soon. But while talking to my hubby, I told him that primary md suggested hormone medications. She also told me that it would prob not make my thyroid shrink at all. (My thyroid is swelling into my trachea, making breathing and swallowing liquids diff at times). Hubby thinks that I should go ahead with killing the thyroid, as the swelling is my biggest problem. Any ideas or suggestions? Advice? I feel stupid, but I don’t know what you alla are talking about when you say "RAI". Thanks for any input!

[hubb]

#1070216

I am new to all of this also, but I have read that smoking can increase the risk of the eye problems- I have also read that many people go into remission after taking the medicines such as Tapozol (sp?)- The radiation, if I’m not mistaken, will certainly send you hypo- These are tough decisions, and I haven’t made mine yet either- Wish you well-

[j_rush]

#1070217

As it is explained to me, the RAI can cause the eye problems to get worse, so if you have eye problems that are severe enough, your endo might suggest you go a different route. Surgery is usually used for those that have the severe eye problems, but not preferred for those without them. The antithyroid drugs are what seem to be the most popular first step, I believe it is because it is much less invasive and yields a chance at a normal life without having to take hormones for the rest of your life. In the research that I have done, I have not come across information linking antithyroid drugs to the eye problems.
If I were concerned about my thyroid compressing on my trachea, I would personally opt directly for surgery, that is just my 2 cents.
Hope this helps
Thanks,
Helpful Justin the helpless

[runlacie]

#1070218

Thank you, Justin the helpful ” title=”Smile” />
The drugs scare me. More than surgery does. I wonder what makes you "normal" the fastest? I wonder what way would make me be able to run again the soonest? Sweet Irony- I once ran to lose weight and now I have this lovely disease that MAKES me lose weight and all I want to do is run again!

[Ski]

#1070219

If you want to be done with it and move on, surgery is the quickest, but of course there are definitely risks to surgery ~ in addition to the usual, there is a small possibility of nicking or paralyzing the vocal cords, and it’s possible to injure the parathyroids, which regulate calcium levels in the body. Finding a surgeon who does a lot of these specific surgical procedures with very low complication rates is the best possible scenario going in.

As far as a swollen thyroid, that’s usually from an imbalance ~ the thyroid swells when we’re hyper OR hypo ~ so normalizing your levels ought to bring the thyroid back to a normal size, no matter which treatment you choose. Well but of course, surgery to remove it would remove all the swelling immediately. ” title=”Very Happy” />

The eye disease takes a completely separate course, but RAI has the potential to "temporarily worsen" symptoms of thyroid eye disease, so if you have bad symptoms of TED, you would either choose a different treatment or take prednisone for a few weeks around the RAI ~ prednisone carries its own risks though, so one more thing to consider. These are things to discuss with your endo and ophthalmologist before treatment.

TED, in its worst form, is extremely rare, so try not to stress over that. It typically presents within a year (before or after) of Graves’, but can be separated by many years in some people. Sorry I can’t be more reassuring.

ATDs can be effective, and quick, and in about 40% of patients they can trigger a remission that may last for years. Remission is, by definition, temporary, but it can help for a while and give you an opportunity for more time with your "real" thyroid functioning. Some people have a hard time adjusting their levels reliably with ATDs, which would lead to another decision-making process.

It’s an extremely complicated decision, and I would only urge you not to make the final decision too quickly. When we’re hyperthyroid, we can lose perspective in many ways, and it’s good to wait until your body is calmed somewhat, as well as waiting for time to go by to help you adjust to the idea that you now have Graves’ and will always have Graves’, no matter what you choose for treating your thyroid.

[runlacie]

#1070220

So many things to consider. I am not even taking beta blockers yet, but my HR has gone up considerably in just the past few days. I think I will talk to my doctor at my appointment today about starting them and maybe it will help me feel more normal. I’m supposed to be going on vacation on July 7 and I wonder if that will still be possible. Sometimes I feel sort of okay and other times it feels like I have surges of hormone and I feel really bad- HR goes way up, HOT, headache, etc.

Today is my ultrasound. One of my lobes looked longer on the scan and they are checking to be sure there isn’t a cold nodule that just wasn’t lighting up at the tip of the shorter looking lobe. Maybe once I know it’s "just" hyper and no cancer I will feel a bit better? Wish me luck, I’m scared.

If I opt for removal, how do I find a good surgeon who would schedule it quickly? I have an endo at the Cleveland Clinic for an unrelated problem but it takes forever to get seen there so I am just seeing someone locally for this.

[ely2009]

#1070221

I think you will feel better (at least less anxious) when you find out it’s "just" GD. For me, the worst time was before my diagnosis and while the endo was sorting things out. Once I knew for sure it became less scary – still sucks!- but easier to deal with. The beta blockers should help in the interim, with both HR and anxiety, while you decide. For me ATD at a very low dose have done the trick so far. It’s so overwhelming when all the info is presented to you and you feel so bad. I too am a mom (kids ages 5 and 9). It was scary for them when we didn’t know because I had no explanantion for my sudden change – from active to feeling lousy and not caring about anything. But they have been very patient and supportive. It’s definitely something that we are dealing with as a family. Life does get better.

Good luck,
Emily

[runlacie]

#1070222

Well looks like it is probably "just" GD. I’m home from the ultrasound and the tech didn’t see any sign of a nodule. He showed me the pictures and the measurements and yes, one lobe is slightly larger than the other. I am confident that he’s accurate, since if there was a nodule he would have had to see it and measure it. I was thrilled that he volunteered this info since usually they make you wait for the doctor to say. Not only was he nice to me that way, he also was great with my son (who accompanied me) and explained to him what he was doing and pointed out things on the monitor to him. It was actually kinda fun ” title=”Smile” />. It’s nice when people care.

The doctor did give me a beta blocker (propanolol) and I will wait and see if I calm down now that the cancer scare is over before I take it. Still don’t have the antibody bloodwork back yet. The doctor thinks there is still a chance it could be something short-lived and burn itself out.

I’m thankful for this board and all of you. Keeps me from feeling so lost.

[Ski]

#1070223

The beta blocker is truly just to make you more comfortable ~ it does nothing at all to treat the thyroid ~ so you may not want to hold off taking it. It can keep away the tremors and it also protects your heart from the arrhythmias that can come along with being hyperthyroid. You’ve likely been given a very low dose, compared to people who take them for heart problems or high blood pressure. Just keep in mind that going off them needs to be a "weaning" process ~ at a very low dose, that takes about a week ~ but quitting cold turkey can make the symptoms recur again, more powerfully, so just do it gradually & all’s well. The doctor will be able to give you instructions on the best way to lower your intake when it’s time.

I just realized there was an old comment on this thread about smoking and Thyroid Eye Disease (TED) ~ the answer is that smokers are more likely to have the more severe TED symptoms, and the course of their TED symptoms is likely to be longer. But don’t sweat the TED stuff unless it starts happening to you. You may want to find an ophthalmologist and have a baseline appointment so you know who to see in the event changes begin. It’s nice to have someone who knew the "before."

[Author]

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