Graves disease, hyperthyroidism, Got uptake results and am very scared!

[onelove79]

I had a thyroid uptake scan done, and the results show
'the thyroid gland is severely enlarged, right lobe 8.7cm in length, left lobe 8.8cm in length'
4-hour uptake 90.1% (normal range 6-18%)
26-hour uptake 96.1% (normal range 10-30%)

My free T4 is 9.1
My TSH is .01

I saw an endocrinologist today, and she ordered an x-ray to determine if the goiter is pressing on my windpipe, she says that if it is, i will have to have surgery.  She said even if it is not pressing on the windpipe, it is too large for medication, and my only options are radiation or surgery.  I am so scared.  I have been on the maximum dose of propylthiourcil for 2 months, and it has had zero effect on my thyroid levels.  Is this normal?  I am a single mother with a small child, is radiation safe?  If I do have to have surgery, does anyone have any advice to get through it?

[Totie]

I had a huge goiter at the time as well. I did the RAI, & it did nothing for it, so ended up with a TT anyway; that was 16yrs ago. I am clinically hypo so I am on levo daily.

When I did the RAI the only thing they told me was to wait at least 5yrs before getting pregnant. I already had a 1yr old at home. I did not go stay any where or away from my husband or son they did not mention anything of the sort, & they were just fine.

Surgery was a breeze for me. No issues since the TT ( I was 23 when I went thru it, now I am 40 & no issues).

[tm514]

Your symptoms sound like classic hyper symptoms.  Did your doctor prescribe a beta blocker to help with the heart pounding and shakiness?  I had many of the same symptoms, but was on methimazole instead of PTU.  It actually worked pretty quickly, within 6 weeks, I went from severely hyper to underactive thyroid (not recommended!).  I was on the anti-thyroid drugs for a little over a year, and then chose thyroidectomy as a definitive treatment.  The surgery wasn't bad as sugeries go, I was driving about 4 days post surgery and back to work within 10 days.  I didn't consider RAI because I didn't like the thought of radiating myself, and I also had a pretty severe case of Graves Eye Disease, and RAI can make that worse some times.  I am very glad I chose TT, I feel it was the best decision for me.

[onelove79]

Maybe I just need to digest the information give to me by the doctor, but TT just seems so drastic, and risky.  The doctor made it sound like medicine was not going do do anything to help it.  I asked if medicine alone would shrink the goiter, and she said it was too big, and medicine would take too long.  Does this sound right or should I get a second opinion?  I should find out today if it is actually pressing on my windpipe.  

[onelove79]

I appreciate the responses! I do not know what I would have done if I had not found this support community.  It is a relief to hear that it may be possible to do RAI and still manage my family.  Do you know how long RAI treatments go on for?  Are there harsh side effects?  Also you mentioned a battery of tests, what tests should I ask my Dr. about that I haven't already done?  To be honest, I was so completely overwhelmed while I was there that I did not ask enough.  

As far as symptoms are concerned, I don't know how many of these are related to my thyroid, but i have not been able to sleep regularly, I feel like my hair is falling out (weird I know, but it sure seems like it)  The most disturbing is the feeling that my heart is pounding out of my chest sometimes, and I have been shaky.  I was put to sleep for an unrelated procedure a few months ago, and that Dr. was concerned because I was having tremors while asleep, so that is why they tested my thyroid in the first place.  

[armywife92]

Why haven't they tried you on another ATD besides PTU? You need to do EXTENSIVE research on both, and talk to real live ppl who have BTDT(most likely the internet b/c it's not everyday you meet somoeone ''hyper''). I will tell you, I have read more positive testimonies comcerning the TT!!  How long have you been on the PTU, if only two months, that's not that long. Most don't even come colse to remission until 12 months, some sooner, some later. It's NOT uncommon for some ppl to respond well to one ATD and not the other. Also methimazole works faster than PTU.

[stella5349]

same would apply to your choice of surgery. We can bullet some things for you to help you understand.

You certainly have some tough choices to make.

[stella5349]

RAI would be something that could be considered. You really need to go through a battery of tests to really know things and it sounds like you could be in this right now.

I have 2 sides of thinking when it comes to this road of picking a treatment to "cure" ( for better words) the "issue".

This may be madotory for RAI in your cases no matter what and could be the best thing to help you. - or it could be needlessly done due to not uncovering the real thing that is causing your to have this going on.

There's an incredible amount of things that could be "why" this is going on and you could go though eternity ( or would feel like that) and still not know why.

To answer the RAI safety question. You will be OK and can protect your family from it if you chose to have RAI - but special attention on your part will have to be done to understand all the aspects of not exposing them to it after you have been radiated.

We can give you the points on how to keep everyone safe at that time if that is what you chose to go through.

How are you feeling? Are you having symptoms or is the goiter pressing on the windpipe?