[genuinruby]

#1065312

Just know that we are all out here….sending you "positive thoughts and energy". Hoping all the best for you. Let us know how you are feeling soon as you can,

Ruby in Reno

[snelsen]

#1065313

Hi, your pre-op jitters are sooo normal! I think you have read my prior posts @ my TT experience. Take it one thing at a time. Re the psychiatrist, just don’t make another app’t, of course he is misinformed @ Graves’, just doesn’t get it, probably never will.
I think Kimberly and Bobbi have written @ weight, but it will all even out. Remember, you are doing a great service to yourself, your health, your longevity and your family, by your decision to not live in a hyper state, really bad to have that motor racing all the time! By doing this, you will have way more control than you do not over your world. Unfortunately,
I am president of the Instant Gratification Club, (just made that up!) This site becomes more valuable to me every day!
Best wishes, you will be fine, you re making a positive move, yea.
The nurse is correct @ the TSI. Will be thinking of you tomorrow……..
Shirley

[lhc11]

#1018501

My total thyroidectomy is tomorrow–I’m waiting to hear what time. This feels completely surreal, especially since for the past week and a half I’ve finally felt like myself again, and after tomorrow I won’t, at least for a little while. I’m also worried that they’ll have a hard time getting the synthroid dosage right since I’ve already gained 5 pounds back since last week and if I keep gaining, how will they know how much/when to adjust the dosage?

It also doesn’t help that my husband asked if I wanted to double-check that I definitely had Graves’ disease. I called the endocrinologist’s office and didn’t ask that, but did ask if I could have the TSH and TSI checked with my last pre-surgery bloodwork today–the endo said I could do the TSH, but that there’s no point in doing the TSI again (mine was originally 395, when the normal range is 0-130) until I’m pregnant. I’m going to assume she’s sure I have Graves’.

I have an appointment today with the crummy psychiatrist who, last time I saw him, seemed to think that once they take your thyroid out, you don’t have Graves’ anymore. I’m thinking I’m going to fire him, though maybe not to his face because he makes me nervous. We’ll see. Anyway….I’m sure I’ll be back to post more post-op (if not pre-op!).

lhc

[Kimberly]

#1065314

Hello – Your dosing will be determined based on blood tests (TSH, Free T4, Free T3) that should occur at periodic intervals. (Around 4-6 weeks). Even better is if your doc can give you a standing lab order so you can get the labs run on your own if you feel a major shift in your symptoms towards the hypO end of the range. Symptoms of hypO vary from person to person, but a few of the common ones include fatigue, joint pain, weight gain, slow pulse, hair/nail changes, intolerance to cold, and constipation. Your doctor will probably err on the side of giving you a lower dose to start with (as they don’t want to send you hypER again), and then you will make small dosage tweaks with each test.

Although weight gain *can* be a sign of hypO, this will not impact how your dosing is done. And weight gain is not a slam-dunk sign of hypO, as some patients (like me!) actually gain weight when hypER.

Although we can’t interpret labs here, I can tell you in general that TSI is a definitive test for Graves. A test outside the normal range means that you have the antibodies for Graves *and* that those antibodies are causing enough stimulation to the thyroid to make you hypER. Because the antibodies have a fairly long life, TSI tests are generally *not* done close together, as they aren’t a very good indicator of your progress.

We actually had a very “spirited” discussion at last year’s conference as to whether one is “cured” of Graves’ when the thyroid is removed or destroyed. Once you have your surgery, your *hyperthyroidism* from Graves will no longer be a problem. So in a sense, you are "cured" from your hyperthyroidism. Unfortunately, this does NOT give you a free pass from having eye involvement down the road. So my non-medical opinion is that yes, you still will have Graves’ after your surgery. Although if you asked 10 different people you would probably get 10 different answers to this one!

Best of luck on this stage of your journey!

[mamabear]

#1065315

Thinking of you! Sending good thoughts your way!

[shanniemom]

#1065316

I am asking for any information, suggestions, ideas, etc. that you can offer about your pre and post surgery. How many days are you in the hospital? Did you have to take SSKI before the surgery? High levels of vitamin D? How soon did you start taking meds again? Any and all information would be greatly appreciated.

My 11 year old daughter is scheduled to have her thyroid removed July 1st at Yale. Initially we were looking at RAI but was told her thyroid was too large and we were told the level/dosage gor RAI would be too much (she is a tiny girl). I do feel comfortable with the surgeon – there are two – a pediatric surgeon and a thyroid surgeon. Also Dr Rivkees, at Yale, established the Peidatric Thyroid Center at Yale as well as publishing a lot of information. I did suggest to him that there needs to be a book for parents who have children with Graves. FYI

I hope all has gone well for you and thank you for any information.

[lhc11]

#1065317

Hi, shanniemom — If you search for "post-surgery update" you’ll see more detail on how well my surgery went (just fine). I was in the hospital just overnight, which was my choice–they would have let me go that day if I’d wanted. I recommend an overnight stay, however, just in case of any problems (I had difficulty using the bathroom and had to be catherized) and I bet the hospital will let you stay with your daughter on a cot (ask them). I did take the SSKI for 10 days before the surgery, .2 ml 3x per day. Mixed in cranberry juice I couldn’t taste it at all; for when I wasn’t home and had to take the SSKI with me, I took along cranberry-apple kids’ juice boxes, which were very easy to squeeze the drops into (I bet your daughter would go for this in general). If your daughter gets easily carsick, tell the anesthesiologist this–they can add some medication pre-sugery that can help prevent nausea afterwards and be ready with other anti-nausea medication as well (they did this for me, and I didn’t get sick).

I also recommend buying your daughter at least one cool scarf to take to the hospital to wear home over the bandage afterwards. Made me feel much better. Having ice cream and popsicles ready at home is a good thing too. ” title=”Smile” /> My throat was only sore for a day or so, however–the stiffness/soreness outside lasts a little longer.

As for vitamin D, I was told to have a bottle of Tums ready and I did; they gave me some in the hospital and then I took my own with lunch and dinner for a week afterwards. But my calcium levels were actually unaffected by the surgery and I was able to stop taking the Tums after a week; didn’t need any other supplementation either. This will of course vary from person to person. I began with the replacement thyroid hormone the morning after surgery.

In short, my surgery and the recovery was not at all the horror I had been expecting–in fact I ran 4.5 miles yesterday, 8 days after the surgery. If you’d like to send me a PM with any more questions, feel free–and you can tell your daughter not to be scared (though it is of course hard not to be). I was really torn up about the surgery vs. radiation and I am SO glad I chose the surgery for myself.

[Author]

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