Graves' Disease Support Group

Graves-Basedow disease is a medical disorder that may manifest several different conditions including hyperthyroidism (over activity of thyroid hormone production), infiltrative exophthalmos (protruberance of one or both eyes and associated problems) and infiltrative dermopathy (a skin condition usually of the lower extremities). This disorder is the most common cause of...

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TT

malbers
malbers
I saw a surgeon on the 13th of march. My eyes are not bad but not so good either. I asked lots of questions. The surgeon I am seeing has done 250 thyroid and parathyroid surgeries in the last 2 yrs. He has sent forms for me to have a CBC,PT?,PTT?,GLUCOSE,SODIUM,POTASIUM,CHLORIDE C02,CREATINE,PARATHYROID,&TSH along with a CHEST XRAY and ECG. I am not sure if anyone else had to have all these tests first. I also will be seeing a vocal chord specialist before surgery because they are not opening and closing right and again after. He has about a 2-3 month wait period,so I guess I will be waiting a month or two still. He did inform me that he has had many many patients that have had RAI twice both being failures who have gotten a TT. He says it happens now more often than not because of the small dose of RAI. Most endos wont do RAI a third time. So I guess by having a TT first I am saving a couple of steps in the future. Did anyone else have to have all these tests? Is there any other test I should have done first?


I had a TSI test done on March 6 and the lab thought they ordered a FT3 twice so they cancelled it. I went on Friday to retest the TSI and the courier that transports misplaced my blood so it thawed!!! I went again yesterday to get the TSI. Lets hope third times a charm!! Maybe it wasnt meant to be.
deleted_user
deleted_user
Hi I saw a surgeon last month. They stuck some tube down my nose to check my vocal cords and he said they were fine that they put a beeper on them during surg to let you know how close they are getting. I wasnt told to go for any tests but I also had all my most recent blood wrk done. Wasnt asked about a EKG OR ECG either.
The Surg I saw preforms about 2 TT a weeks for various reasons from goiters thyroid issues and cancer. I have heard that small doses of RAI are no good here in NJ they give u the MAx amount of RAI to make sure that its completley gone rather than smaller doses. I hope all goes well for you please keep me posted!
bransnana
bransnana
Hi Malbers, usually with any operation a chest x ray and ekg and blood tests are all standard proceedure. I can't remember, what were your last labs like? How long have you been on meds? What dose?
malbers
malbers
My last labs were on the high end of range,March 6 2009

FT3 6.2 range 3.5-6.5
FT4 21.0 range 7.5-21.5
TSH 0.002 range 0.5-4.0

I had been taking 2.5 mg tapazole for 6 weeks tried every other day but felt hyper so continued 2.5 daily. On March 15 I quit taking ATDs.I have felt so great its kinda crazy.For months I was feeling really bad and slowly started weaning with the advice of my reg doc.Endo was trying to keep the FT4 at 8.0 which is way too low for me. I am going for blood work again tomorrow because this is where I feel like me. I have been on ATDs since Nov 2007. I am waiting for me TSI to see if it has lower since the last one in Nov 07. If the antibody test comes back lower does it mean remission? I am hoping then I would put off surgery. If not I stiil want to know where the levels are now so I know where I want to be on replacements.
deleted_user
deleted_user
Hi Malbers
Ive been off meds since Feb 1 2009 I have been feeling fantastic!! Even tho my levels are higher end my FT4 jst went out of range this bloodtest. Ive taken atds for 4yrs all differnt amounts and go hypo on 2.5mg. It seems to be hard for them to keeep my mid to high range (wheer i feel best) I dont tolerate hypo well at all b/c i get real mentally messed up and feel horrible.. Its good to have your TSI tested but from my understanding it not accurate in determing remission you actually can still be in remission even w/ higher antibodies. If the TSI would determine remission they would test everyone b4 pulling them off meds is what i was told . For more info on a TT tho I suggest joining facebooks graves disease board there are so many postive stories on there
malbers
malbers
I am the same way hypo!! It really sucked. I always said I function better hyper now I know its true.I am a member of the facebook group and have been for a long time. I find there is more info here tho. I did enjoy reading cindys TT story tho its encouraging. I also have messaged Mandinb here and she gave a wealth of info. I never had a tube down my nose at the surgeons, he just put a scope down my throat.
dairytech
dairytech
Ive been off meds since Jan and I feel the same way. Even the smallest amount of ATD's made me hypo. Hypo sucks...I'll take hyper any day. Maybe for some of us being on the higher side of the range or a little above is normal for us. I mean, the ranges are actually averages which may not apply to everyone. For me I feel best on the higher end.
deleted_user
deleted_user
Kathy same here you've heard me on the low end I am not good at all Its like Jekel and Hyde the difference. I def take hyper over hypoat least of have enegry and my mind isnt in a black hole
mmztcass
mmztcass
That's weird, I don't do well with hypER as that's when the anxiety/panic attacks comes out for me. I would take being slightly hypO any time. We are all so different, that's for sure!

Take care... :-)
malbers
malbers
Thats a good way to put it Jekyl and hyde.Thats exactly how I am. I am way more emotionally stable hyper. Hypo makes me a wreck its almost bad enough that I need to be in the nut house!!!!LOL
malbers
malbers
Kathy, I think that its true. I think my normal is a bit above the high end of range. I have always been a bit hyperactive so this is more like the REAL me. I love it, I havent been so happy for like forever.
bransnana
bransnana
Yes, I think it's probably true that we must have all been functioning on the high end for maybe a lot of our lives. It's when it gets over the range that we start to feel crazy.I feel less nervous,anxious, I'm calmer etc..at lower levels but I have joint pain and forgetfullness when hypo which is not there if I'm more hyper. What a trade-off!
deleted_user
deleted_user
I had TT on 11/4/08. Was on tapizole for 2 weeks prior to surgery. I had been scheduled for RAI, but the day I went in, they found a cold nodule, after ultrasound and biopsy, the dr and I decided on TT. It has been nearly 5 months, and believe it or not, I am still testing HYPER, although my symptoms are all HYPO! I am going to a new endo, last one was a waste of time. I know know why many people refer to hypo as hypo-hell. New endo has increased my synthroid, and after two weeks, I feel more like myself than I have in years! New dr. thinks my pituitary gland may not be "awake" after the TT, so that is why he increased the synthroid. I go next week for another TSH, T-3 and T-4, to see if my numbers are in line yet. I really had no choice in the matter with the surgery, but now I am having a problem with one eye, with pain and it not closing well at night. I have been seeing an opthomologist, who is referring me to a specialist in graves eye disease. My point is, just be patient. I thought that once I had the surgery, I would bounce back. You won't. I used to be a very on-top of it Type A personality. I have totally lost who I was, and it is hard, and nobody around me understands. Thank goodness for this board