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Discussion Starter · #1 ·
Hi All,

So glad I found you all!

I hope I receive some answers from lots of you. I have been extremely sick for the past few months. I think I had a storm again (had it once before) My tsh was 0.01 and t3 and t4 were high and tsi was 520 (normal is under 140) Thyroid eye disease is really bothering me. Very swollen eyes and bridge of nose and swollen pockets about 1 inch under both eyes. Have a large hypervascular goiter this time making eating breathing and sleeping impossible.

I will be having a total thyroidectomy in 11 days and I asked my endo about taking the potassium iodide for ten days before surgery. He said its not necessary. I asked the surgeon and he said its ok if I want. It will not harm me. I am supposed to pick it up tomorrow. Well now I got my new thyroid tests and my tsh finally has budged after not budging for a couple months but now it is over at 9.87. (0.27-4.20) and my t3 is 1.13 (0.80-2.00) and free t4 is 0.28 (0.93-1.70) I don't know what my tsi is now. It had started at 480 and a month later was 520 about a month ago. My eyes are still so swollen. My new ultrasound shows a new mass on the left. Report says not sure if its lobulated thyroid tissue or a parathyroid problem. My calcium level is fine.

I had wanted to take the potassium iodide drops to avoid a thyroid storm during surgery and to help shrink the hypervascular goiter so there would be less blood during surgery but now with those numbers.......am I safe to take the potassium iodide? I do have graves.

Please respond. I am also quite nervous about coming through this surgery as I feel so weak. I was hoping to be stronger before surgery.

Thank you everyone for any advice you may have.

Gloria
 

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I took it - I did not notice any difference in how I felt.

It helps to make the thyroid less vascular which is helpful during surgery.

Have you asked for any replacement to help raise your levels prior to the surgery? You poor thing - you must feel horrible. Is there a reason they are with-holdng replacement med's? You should ask your doctor for 10mcg of Cytomel to help you survive the next 11 days. Split the dose in 2.
 

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Discussion Starter · #3 ·
Lovlkn

Thank you so much for your message.I forgot to mention I have been on methimazole for many years low dose of 2 and half mg every other day. When I got so hyper again this time he put me on 25 mg a day then after more than a month dropped me to 20 and now for 9 days I have been on 15. I called and left a message for him today because he has not seen the new results as the surgeon had ordered them. I faxed them to him so hopefully he will call tomorrow morning and tell me to drop it again. I took 10 mg today before I knew what my results were and will not take any more tonight. I feel like I should just drop it altogether but I guess that is not a good idea.

Thanks again.

G.
 

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I do think that will help you avoid "dumping" and having another thyroid storm. Bless your heart!

Wishing you all the best w/this surgery. Once it is over, you will be glad!

Hugs,
 

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Lovlkn,

Were you hyper or hypo when you took the potassium iodide???

Thanks,

G.
I was hypo when I took it - they also medicated me into a hypo state prior to my surgery.

Thinking back a friend of mine told me she felt the best she ever had while on it. Her labs were not likely as hypo at the time she took it.
 

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Discussion Starter · #7 ·
Andros......so even through My tsh seems to be hypo now (9.89) I could still have a storm during surgery? I was thinking that would only happen if I was hyper at the time of surgery. I would like to take the potassium iodide but I am afraid it will make me even more hypo. Is that possible?

Than you Andros so much for your reply.

Gloria
 

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Andros......so even through My tsh seems to be hypo now (9.89) I could still have a storm during surgery? I was thinking that would only happen if I was hyper at the time of surgery. I would like to take the potassium iodide but I am afraid it will make me even more hypo. Is that possible?

Than you Andros so much for your reply.

Gloria
When is your surgery?
 

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Discussion Starter · #9 ·
my total thyroidectomy is on Oct. 13th. Whew getting nervous.

I did start one drop of potassium iodide about 3 days ago.....3 times a day.

My eyes are so so swollen and sore. I am so hoping that the surgery helps with my eyes. I did have the neuroopthomologist measure them at Wills Eye yesterday so I will know if they get less bulgy 5 weeks after surgery when I see him again. Thank goodness they are not as bulgy as I have seen in pictures of others.

It will be so wonderful to get rid of the goiter. So hard to swallow, eat, breathe and sleep.

I feel so good when I get a response on this site. :)

Gloria
 

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Gloria!

Keep thinking positive - it's all going to work out.

I was a wreck prior to my surgery - and it all turned out for the better.
 
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