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in reply to: Gabe’s Total Thyroidectomy Journal – 5/31/13 #1179623

Enjoy being off work! You probably will be surprised at the stamina and endurance you don’t have! Just cause you are going back to work on 6/24, does not mean you are back to baseline.
Glad things are going so well. And with your additional news, super nice that you had the TT!
Shirley

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in reply to: no medication “prep” prior to TT? #1179951

Tally, you will do well. Glad you persevered.
My thoughts
1. Tapezole-I’d hazard to say that the surgeon is an ENT surgeon. And probably may not know much of anything at all about the thyroid drugs.
But since he spoke with the endo, I imagine the endo told him to do it.
Perhaps the thinking is that your levels are high, and they want to throw in as many ATD’as they can. Don’t know.
At the end of the day the endo will be the one managing thyroid drugs. I am sure you know this.
Then again, maybe the surgeon is confused on this. Since your endo said you’d begin Synthroid post op. But this can be resolved easily.
Give your mom these questions to ask. The only people you’ll be seeing tomorrow are the surgeon, his other ENT staff, the anesthesiologist.

Maybe while your mom is in the waiting room with time on her hands, she can call the endo’s office and start the communication of tapazole/Synthroid conversation going.

2. Scarves-glad you have nice scarves! Don’t think you will probably wear them because of the thyroid incision. You’ll see a few steri-strips, that is it.
Not sure if there will be two or one incisions because of your other procedure, and/or it is a bit hard for anyone but the surgeon to know this, or the size of the incision. You should have an opportunity to ask him tomorrow in the pre op area when he comes in. Have your mom remind you.

Thank you for writing at this hectic time. You probably will not feel 100% on Wednesday, let everyone take care of you.
Good wishes and the best for you
Shirley

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in reply to: Disadvantages of not having a thyroid? #1179837

Good subject to pursue. I understand that they are different antibodies.
Shirley

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in reply to: GDATF conferences this year? Dates and location? #1179957

Thank you,Kimberly,
i presumed all of this, and I understand. Scheduling three sites with three sets of speakers sounds overwhelming to me. The logistics for three sites, speakers, all the other details, is beyond my pale!

I do appreciate the 10/26 Baltimore date knowledge. However, I just yesterday, scheduled a flight to the Midwest which conflicts with that date.

In the optimal world of attendees, it would be nice to know the dates and locations as far in advance as possible, even though the myriad of details that re required are not finalized. ANd as I say this, I absolutely understand that you must have everything in order before you make any announcements.

Shirley

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in reply to: no medication “prep” prior to TT? #1179946

Tally.
I know it is early in the day. Do write when you have new information to report! THinking of you!
Shirley

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in reply to: Just got diagnosed:( #1179867

Moonbeam
I second Karen’s thoughts, and welcome you to the forum.
Agree with Kimberly that you should scout around and find an ophthalmologist or a neuro-opthalmologist who “knows” TED (thyroid eye disease) to do a thorough and appropriate exam of your eyes. This will be valuable information as a baseline exam, if indeed you do have some eye issues.
In addition, eye pain should always be treated with a degree of concern, and there could be other reasons for your eye discomfort.

My own experience is that bright light bothered me a lot, the sunlight, too. But I did not have eye pain with TED until I was in the severe part of the disease, and had double vision, then the eye pain was associated with the eye muscles, when i tried to look certain directions.
Shirley

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in reply to: Surgery (non-thyroid) update #1179930

Bill!
So glad you have this of your list of things to do!
Been there. Did that. All done! You might find yourself walking around bent over more than usual. But that gets better, too.
It’s been a struggle and a wait.
Best wishes with your recovery.
Shirley

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in reply to: no medication “prep” prior to TT? #1179935

Hi Talley,
I am so happy for you that you proceeded with your wonderful trip to Italy.
Welcome back. But you are back to a lot of big stuff.

Well, as you know, I am another fellow patient here, but the following is a conversation I’d have with you if we were sitting in a coffee shop, as friends with common experiences.

Wow. I can appreciate your concern. This is a tough one. Tuesday is coming right up.
It is hard for you to evaluate this, for you have the agreement of both doctors.
And, on the surface, this “makes sense” to go “in there” once, and get it all done. On the other hand, it is your body and your health, and you want to be sure this decision was made with the proper thought by the docs, and not because you will be in the OR for the clavicle procedure. That does give me pause.

But I share your concern and reservations, and they may exist because this decision was kind of an afterthought, and you did not have enough time to ask questions, and/or know what questions to ask.

I am concerned that the chances of getting the information you need to know and understand in the one remaining day before your procedures, are slim to none.

My own experience, and the experiences of others on the forum, as you have read, is to take the SSKI drops approximately a week before the surgery, for the reasons described recently. One of the main reasons is to reduce the size and vascularity of the thyroid gland

The other information you don’t know, is how many thyroidectomies this surgeon routinely does. It is suggested by surgeons at the NGDF conferences I have attended, that it be at least 50/year.

I do not know what you have learned about the length of the surgery, or degree of difficult of removing the growth from behind your clavicle, and I do not presume to know anything at all. But, from my own personal experience, from working in an OR for a number of years, in the great scheme of things, it seems like it is a more minor procedure, rather than a big time major procedure. Did the surgeon discuss that with you? Like the length of surgery, the post of recovery time, and all that stuff?

If you decide to proceed with both, I think you will feel more at ease if you call the surgeon’s office Monday, and tell the people who answer the phone, that it is URGENT that you hear from the doctor to answer your additional questions about the TT. And one of should be the potassium iodide drops pre op question.

***AND, I do not mean to add to your stress, but you should also inform him that you have not taken your methimazole consistently in the past couple weeks. This is something the surgeon and the endo should know.
Tally, you really have to plant in your head to take these med without fail, they cannot be skipped. The ramifications are potentially huge, and will continue to be as you take thyroid replacement the rest of your life.

If you think about it this weekend, and you are feeling pretty ok about this plan, and want to go ahead, I do suggest you call and make an effort to get your additional questions answered. AND-the surgeon should know that your forgot your methimazole quite a bit. It may be fine, and/or he/she may want to postpone the TT surgery. I say this, because otherwise, neither the surgeon or the endo have any reason to assume anything other than that you have taken them regularly, as prescribed, with the increase in the dose.

I wish you the best of luck with all of this, and keep writing to us.
Shirley

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in reply to: Had My Consult – Bring on the Surgery! #1179847

I took Lugol’s solution. For all the reasons stated in the research you provided. Tastes like crap. I found orange juice cut it the best.
Shirley

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in reply to: Had My Consult – Bring on the Surgery! #1179844

I don’t think so. It will be interesting to see what you hear from other folks
Shirley

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in reply to: Had My Consult – Bring on the Surgery! #1179840

Yay. I think you will be VERY relieved to have a finite plan.

Yep, you will be intubated, but you will not know about it, going in or coming out. You will be very happy dreaming something wonderful during this procedure.

Tube up nose? Can’t figure out what that would be unless you are misunderstanding the nasal prongs for oxygen. Dunno.

Full discloser, I worked in an OR a LOT. Also a recovery room, pre op and post op. I think you will have a wonderful experience.

Read the many good posts about post op. My biggest mistake was that I thought I felt WONDERFUL, FULL OF ENERGY, READY FOR ALL AND ANYTHING at post op two weeks. And I wasn’t . Fatigue still is a big deal then. Was not back to “old self” or anywhere near it. Let people help you, cook for you, do laundry. You can go out for lunch with friends! Before the zoo comes home from school.
Shirley

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in reply to: Graves and school? #1179820

Hi Randistuart,
You got some great suggestions. I sure understand your concern. I suggest you request your endo to write (I know they are super busy) a separate letter stating that the symptoms are still present.
I am guessing you do not want to lose the 504 status,and also have the help in the specific areas that will help your son have a better year, and get the support he needs. But I know you need to document it. I guess the other option is to have some of the evaluative tests and assessments that are the school needs for documentation.

Keep us posted. The website Kimberly mentioned should be VERY helpful for you, too.
Shirley

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in reply to: Methimzole & Propanolol for 7 weeks, no improvement #1179828

BOOMER!! YOU ARE THE BEST!!! Yay for you! HOpe there is an opening for your RAI! I hope your providers are as nice as they can be, re costs.

FLORA-So glad you have a good endo who listens. Money in the bank!!
The emotional and physical bank.

bigad, Sueandher zoo, and all of you! Patience, smatience! I was NOT patient. I was a hyperactive mess, wanting all of this to go away yesterday. For me, the surgical route was the best, cause it seemed the fastest.

Ann- I felt really better with Tapazole (mmi) at about 9 weeks. I counted every day. I was a mess. And very desperate. Very, very short tempered. NOt me at all. And very thin.
It was a midwest winter in Iowa, and I was so hot I opened the doors when it was 5 degrees below zero. So. So..HOT. Big tremor. Humonguous appetite.
And very irritable. Pulse in the 140 range. Not ok.

Shirley

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in reply to: Orbital decompression surgery and headaches #1179761

WOW KAREN! YOU ARE A SUPER WOMAN! I am amazed that you had these two major procedures so close together! Way to go. GEt it all done!

I did not have this experience after these two surgeries. They were many decades apart.

I think you are doing all the right stuff, getting checked out by the doc. Your reasoning is good re CSF leak.

Maybe another week, the tincture of time, and having your head elevated, will make the whole issue disappear.

Incidentally, are you glad you got the mechanical bed? They are spend, but so was my temper pedic, and I wish had made your choice. Did you got one wher the feet elevate, too?
Shirley

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in reply to: Ibeuprohan? #1179727

Ann! I am so sorry about breaking your tooth! On cereal! Quite an accomplishment! What a drag.
Shirley

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