Discussion in 'Coping and Compassion' started by Christine, Nov 11, 2006.
So tell us--how was your iodine-laden afternoon?
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Honestly, I didn't pig out quite like I expected. My appetite still just isn't there. But I did have a small sandwich with melted cheese on top and I do NOT know when anything has tasted SO good.
Hi everyone...I hope you don't mind if I pop in here. I'll give you a little background about myself. I'm 40 and my primary "issues" have been fertility related. I was diagnosed as hyper abotu 2.5 years ago and went on tapazole for several months. I couldn't stand my endo so I just stopped dealing with it. Yes, I know that's crazy. So, fast forward to a few months ago and I see my reproductive endo for one last push at fertility treatment. He did standard bloodwork and my TSH came back as basically 0. SO, off he sent me to the thyroid guy. No fertility treatment til I get it worked out.
Saw the new endo (who I like) 4 weeks ago. He ordered a million tests. He basically said that if the thyroid is high it's coming out if I want to conceive. Because of my age, there's no time to do the radiation and you shouldn't be PG on the meds. A few days after my blood draw he called in tapazole, 20 mgs 2x/day. SO, I've been on it about 3 weeks now. I also had an ultrasound where they found 2 nodules. Tomorrow I see the endo, and I'm sure he'll be sending me to the surgeon.
So, I thought this would be a good place for me to come for support and info. Hope you don't mind a new face!
Welcome- I'm pretty new here myself, but I just wanted to say, I had my thyroid removed in October and I was terrified of the surgery- and it really wasn't too bad.
Thanks for the welcome. Do you mind me asking how long you were in the hospital and how long you were out of commission? I know the endo can tell me tomorrow, but I would love some real life experiences.
Well, mine was removed at a surgery center and I was just there for overnight. Your recovery should be easier than mine because they had to take a lot of lymph nodes too, but I was home for 2 weeks and most of the 2nd was because I couldn't turn my head to drive on that one side. My incision was Much larger than yours would need to be.
welcome Mari and best of luck to you. My experience was very, um, unusual. I dont want to scare you with the details before your surgery, I am one of those one in a million, it could only happen to you people.
Micayla - I said a prayer for you when I was in disney and was online once and saw you were still sticking it out with the diet. I bet you feel great, food wise that is. Do you mind sharing what your actual rad. dose was. Mine was 200.
Next week I am going to the endo, she did alot of tests, not just thyroid stuff and I guess she will discuss them with me then, so I will have a little update to post next week, Last christmas, disney with cancer that I didnt even know about yet, and this year christmas in disney with dh and being in remission. God is Good. I even got to meet the beast and dh told belle I had stage 4 cancer
My dose was 150. I am not as 'in heaven' foodwise as I had anticipated because I have a bit of a funny taste in my mouth.
Mari doesn't have cancer though so no reason for her to be scared.
Did you try the sour lemon drops. They are also suppose to help your salivary glands post rai.
I was instructed to do that the first two days after. I wonder if it would still help? I suppose it can't hurt anything.
Not scared! Saw the endo today. He felt like although there are "tons" of nodules (his words) on the thyroid, there is only 1 large enough to even be slightly concerned. So, he's not ordering a biopsy now. He said all that would tell him would be whether to take it out or not, and it's coming out!
I left today with
1. Instructions to make an appointment with surgeon. I'm going to use Dr. Pezzi at Abington in the Phila suburbs. I suppose the chance of anyone being familiar with him is slim, but who knows. I called already and he can't see me til 1/26, but I'm ok with that.
2. Order for bloodword now that I have been on the tapazole for a few weeks. Got it done as soon as I left the endo. I'm supposed to call Monday to see if he wants to change the dose.
3. Prescription for "something" iodine (begins with an L I think) to take 5 drops 3 times a day for 10 days leading up to the surgery. Anyone know what this is?
4. Prescription for synthroid (it says .125 g, but I can't read how many times a day. Anyone know the usual? Just curious. Obiously this is for after the surgery.)
5. Order for bloodwork after the surgery (various TSH, etc.)
6. Call and make follow up appointment for 6 weeks after surgery unless calcium gets whacky in the hospital.
I know no one wants that detail, but I'm trying to organize my thoughts.
Thanks to all who have offered support!
Can you read what the script does say? I used to be a pharmacy tech so I may be able to tell you; it may not have a number.
I imagine it's probably one tablet daily though. That's the dose they started me out on, too.
The Synthroid script says 0.125 g (or maybe mg?) looks like a division sign LOL then tab po and maybe "in" also says #90, which I think means 90 pills. Why can't they write neatly?
The other one says Lyol's (I THINK) Iodine solution some strange stuff then I think tid(three times a day, right?) then "in juice" 10 days before surgery. Actually it is an a with a line over it, but I had enough latin to figure out he means ante/before, right? LOL
SO, any input on either would be great. Never heard of this second one. The Synthroid I did expect. He also did sign the brand medically necessary line on the Synthroid. I don't believe I've ever had that on a prescription before. I've usually had generics. Hmmmm...
The other drug I'm not familiar with but with the synthroid without physically seeing it I would say that it is, one tablet by mouth daily. Of course, the pharmacy will print it on the bottle for you.
AND from my days as a pharmacy tech, I will tell you that it is VERY normal for synthroid to be brand name only/dispense as written. Our bodies are SO sensitive to thyroid and this is unique among drugs in that the generics just aren't as consistent as the brand in the dose strength. Fortunately, synthroid is pretty cheap.
Thanks for trying! I know they'll put it on the bottle, and I'll call if I'm confused.
Interesting about the Synthroid. I'm learning so much!
Having another 'low' day today. Nothing like being hypo, just kinda sad. Is this normal while adjusting? The bad part is not knowing the difference between hormones and just plain moodiness!
Got great news!! The endo said my blood tests were great! The TSH is practically undetectable, so the cancer is staying away!! Dh commented to her that he thinks I am too hyper, she said she could tweek my meds after the nuclear scan. I said I would rather leave them where they are and deal with the hyper. I am scheduled to go to the rad. onc in June but she thinks that is too late, she wants me to call and reschedule and she said she is not sure but thinks I wont need the diet for the scan??? I tld her I dont think this is right, is it christine?? I also have a one year post op surgical follow up in Feb. and then and endo visit, blood test and neck ultrasound in March.
Woo hoo! Merry Christmas - great news!
I haven't had to do the diet for my scans, but I haven't had one in three years so I thought this might be new.
It takes a good 6 weeks to start feeling yourself. Even then, your TSH won't be at optimal levels. It's tough coming back up to normal. You always think it's going to happen much faster than it does.
Did you mean the "thyroglobulin" was undetectable, so the cancer is staying away? Thyroglobulin is the cancer marker. TSH only shows how much thyroid hormone you have. I'm thinking you meant Thyroglobulin in which case that is FANTASTIC news!
As for not doing the LID prior to scans, I've not heard of any doctor these days skipping that. I would probably ask her why she thinks it is okay not to. She may have a very good reason for it.
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