#55904 12-11-2004 01:43 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | OP  Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Anybody have post Tx thyroid problems? What did that look like? My TSH numbers keep creeping up - from 2.9 to 4.0. It's still within acceptable limits and I don't have any other symptoms. It's been over 20 months since the end of treatment. Has anyone seen their numbers go down again or is this a one way deal to synthroid?
My understanding is that thyroid failure starts showing up at 18 months post Tx. So am I right on schedule?
Gary Allsebrook
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Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
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"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#55905 12-11-2004 03:47 PM | Joined: Jan 2004 Posts: 64 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jan 2004 Posts: 64 | Hi Gary,
I am over 2 years post treatment and started taking synthroid in July. My TSH levels began steadily increasing from about February and reached 6.5 in July after a routine blood test. My ob/gyn sent me to an endocrinologist immediately due to my being pregnant and was prescribed 5mcg of synthoid. I didnt have any symptoms that couldnt be explained by my pregnancy but I believe my numbers are just over the normal range. That may explain why you are asymptomatic. As far as I know, my pregnancy exacerbated the condition, but was going to happen sooner or later. As it was explained to me also, most are on thyroid medication for life if you have hypothyroidism. It's not that bad considering the alternative, and if cost is an issue, synthroid is not that expensive.
Hope you have a wonderful holiday!!
Kelley
SCC tonsil(left) with contralateral mets. Modified right neck disection August, 2002. 33 rads(62 gy)both sides of neck and 3 cycles cisplatin completed October 25, 2002. 34 yo at time of diagnosis
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#55906 12-11-2004 04:09 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Hi Kelley,
Thanks for the advice! The upper normal is 5.5. I would imagine that the next 6 mo. bloodtest will tell the tale (I get a TSH every 6 months - which is in the NCCN oncology practice guidelines I might add). My oncologist is on top of this kind of stuff.
I only pay $5.00 for a script through my HMO.
Did you have any problem adjusting to the synthroid?
It's a small price to pay for being alive. My latest MRI was negative in every regard - recurrence free. A nice early Christmas present from the radiologist.
I hope and pray that you a great holiday also.
Gary Allsebrook
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Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#55907 12-11-2004 04:20 PM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 837 | Gary,
My TSH was creeping up for quite awhile in the years after radiation. My oncologist was following it and also had an endocrinologist doing periodic testing for several years. I also noticed my weight going up a bit (a few pounds beyond what I had always thought was "normal") over the same period of time. Then last year my weight started going back to its old level, where it seemed to stabilize, and my oncologist told me my thyroid results were basically normal again. Go figure.
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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#55908 12-11-2004 04:38 PM | Joined: Jan 2004 Posts: 64 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jan 2004 Posts: 64 | I didnt experience any adverse affects to the synthroid, but I'm on a very low dosage. I dont think side effects are very common, provided you are placed on the proper dosage. Congratulations on your good news. What a great present! My "present" is due on January 20, then I will be going for for my 2 year scans. I've been a little worried lately, just par for the course I suppose. Just praying that I'm healthy when my little miracle arrives. Two years out is a milestone. I am very happy for you  . Wishing you all the best for the New Year. Kelley
SCC tonsil(left) with contralateral mets. Modified right neck disection August, 2002. 33 rads(62 gy)both sides of neck and 3 cycles cisplatin completed October 25, 2002. 34 yo at time of diagnosis
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#55909 12-11-2004 04:48 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Hi Gary,
I have been taking synthroid for months now. I started gaining weight and continue to, I was cold all the time and very tired. I felt worn out. I started out with 50 of synthroid and now am at 75, we are having some slight issues with getting the right dosage. My weight has gone from my normal 115-120 up to 142. I don't mind the extra weight but won't miss it when it's gone. What is toughest for me is the cold feeling and the fatigue. The only symptoms I have from taking the synthroid are good ones, they lessen my symptoms and I'll be happy when we find the right dose.
I was told I would take this medicine for life.
Hope this helps.
Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#55910 12-11-2004 05:48 PM | Joined: May 2004 Posts: 137 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: May 2004 Posts: 137 | Hi Gary, I too am on SYNTHROID and will be for the rest of my life. I take 125 mg of it daily. I too had the cold hands and fingers and very tired all the time. The radaition did mine in. I too have gained weight and lost a lot of my hair. So far the dosage I am on seems to be the right one, however it took a long time to get the right one..You are not alone in this. Miss Vicki
Tongur cancer/1989/1999/2003--Radiation-lifetime dose-Right radical neck with jaw replacement/bone from left bottom leg/flap with skin graff left top leg/removal of all lymph nodes no cancer there. 85% tongue removal/on feeding tube | | |
#55911 12-11-2004 07:31 PM | Joined: Nov 2004 Posts: 104 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Nov 2004 Posts: 104 | Gary,
I take 100 mcg Levoxyl every morning for my thyroid. I didn't start having any symptoms until after the 5 year anniversary, but sure enough it did start. TSH levels were within normal and then I started feeling lethargic, rapid weight gain and was quite depressed. Another blood test and Dr. started me on the levoxyl and I felt the difference within two weeks. NO side effects and have been on the same dose for over two years.
Jack
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Dx 1/15/97 SCC rt. tonsil met to rt lymph node Stg IV,
Srgry 1/23/97 tonsillectomy & mod radical neck dissection,
Radiation 35 trtmnts both sides | | |
#55912 12-11-2004 11:50 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | My wife won't like this rapid weight gain stuff - did you lose it after going on synthroid (or levoxyl)?
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | |
#55913 12-12-2004 06:19 AM | Joined: Nov 2004 Posts: 104 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Nov 2004 Posts: 104 | Gary, Yes, the weight came back off (it was only about 15 lbs.). All of my symptoms stabilized and returned to what they had been before. Although the weight issue did require some effort on my part (excercise etc.) Not like I couldn't have used some more excercise anyway.  Jack .......... Dx 1/15/97 SCC rt. tonsil met to rt lymph node Stg IV, Srgry 1/23/97 tonsillectomy & mod radical neck dissection, Radiation 35 trtmnts both sides | | |
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