#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
***********************************
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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#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
***********************************
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
..........
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 | | |
#55914 12-13-2004 09:21 AM | Joined: Dec 2003 Posts: 116 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Dec 2003 Posts: 116 | My thyroid went at 6 most post radiation. My TSH went from 5.4 to 50. My T3 and T4 were low in the range so they put me on Synthroid 75/mg. My hands were cold, that was the only symptom. I felt fine, my hair is find and have not gained any weight. I get checked in January to see my new levels since I started it and we'll see if the dose stays the same.
SCC R-Tonsil T2 NO MO Dec 2003. Completed IMRT Radiation only to tonsils(72Gy) and neck(55Gy)March 04. Detected at age 50.
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#55915 12-13-2004 09:52 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Oddly, on every blood test the past year, my TSH has been dropping to almost nothing. I will probably get it checked out a little more on my next draw.
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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#55916 12-13-2004 06:39 PM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | Gary, I was feeling really crapy when at a TSH of 18. If John could still stand up at 50 then he must be superman. The synthroid (or generic) is really without significant side effects. Cold hands, tired, mentally slow, forgetful especially of names and phone numbers, easily out of breath were all of the major symptoms I had. There seems to be a lot of argument about the differences between brands of synthetic hormones. Apparently some people feel better with one brand over another.
It is not uncommon for the numbers to jump around and be hard to get the dosage right. Incidently the dose is in Mcg not Mg that is microgram not milligram. Usually 25Mcg or 50Mcg is a starting point. I am at 135Mcg. now but it keeps going up. The big gripe I have is how slowly the doctor will proceed with changing doses. I felt lousy for quite a while as they tried increasing the dose, then wait 6 weeks for the next test, several times.
There are two common Thyroid hormones T3 and T4. T3 is usually what is tested unless you ask for more.
T3 is Low at 2.2 High at 5.0
T4 is Low at 0.7 High at 1.7
You will feel better if you can keep this normal (hopefully you have a record of what your personal normal is)
I did not have any weight change that I could blame on my thyroid.
Take care
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#55917 12-14-2004 05:01 PM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Hi Gary,
I do hope you know what your TSH level was before you had radiation and chemo, etc. They should have done this test before you had any treatments. You need to know what TSH number you are aiming for. It can vary on these tests from .040 to 5.50 and still be in range, so it extremely important to know what your level was before radiation etc. Since TSG levels have a broad spectrum, you need to know where you started.
Synthroid comes in many levels. I'm on 88. Took me years to get it it right level. You also must remember you can't take it with iron, calcium, or certain other supplements, or it will not function correctly. So take it in the morning and take the rest of the stuff at lunch.
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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#55918 12-14-2004 05:08 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | I feel better to see that others had trouble getting the correct dosage of synthroid. It has been an ongoing issue for me that I hope to get resolved soon. I am cold all the time, unusually tired, no appetite yet gaining weight steadily, and I feel very disorganized and sluggish. I thought I had developed adult attention defecit disorder! Hopefully it will resolve soon.
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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#55919 12-15-2004 07:23 AM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Minnie,
What was your TSH level before radiation and what is it now? You definitely sound like you should be on a higher dose. My normal TSH is 2.5. If it goes up to 3.4, which is well within the normal range, I start gaining weight and feeling tired, so it is important the know this number. Problem is at 3.4, my dr looks at test and says it's within normal range so thinks everything is great. I have him fax me results so I can monitor the tests myself. If I drop to 1.9, I also start having symptoms, but still within range. A simple little thing like taking the synthoid with calcium or a vitmain containing iron or calcium can reduce it's effectiveness. I started on 75, not enough, went to 100, too much, and now am on 88 which keeps me at my TSH at 2.5. I think the rule is take the thyroid med 2 hours before 6 hours after things containing calcium, iron etc. So get your numbers and take control and I'm certain you can get it back to YOUR normal.
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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#55920 12-15-2004 07:27 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Eileen,
When your TSH goes down, what kind of symptoms do you get?
Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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#55921 12-15-2004 11:45 AM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Ed,
By down, I assume you mean the 1.9. It only happened once so I'm not certain I remember. I know at one point I was falling asleep at the wheel at 6:00 pm driving home, but I don't remember whether that was the 1.9 or the > 3.5, but I think it was the 1.9. If it is low, I lose weight. If it is high, I mean really high like 30 when I was first diagnosed, I eat eveything in sight but don't gain. If it is slightly high, I may gain a lb or two. There are about 30 different symptoms you can have when it is either up or down. I think Mark or someone posted them at one time. Some people have none, others 1 or 2, some many. There was a web site that gave you all sorts of info on the thyroid. I'll see if I can find it tonight. It is not a condition that one wants to ignore, because in rare severe cases, you can go into a coma and die.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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#55922 12-16-2004 07:13 AM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Ok guys, Here is a link for endocrine information http://www.endocrineweb.com/ Lots of information on how they work and explains numbers and symptoms. Hope it helps. Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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#55923 12-16-2004 06:47 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 | Thanks for the link Eileen.
My pre Tx baseline TSH was 2.3, 12 months 2.6, 18 months 2.9, 24 months 4.0.
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)
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#55924 12-18-2004 06:20 AM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | I just got my test results; TSH 6.5 -Synthroid increased to 150Mcg. recheck in 2 months. Yes I am somewhat cranky about this.... Ed, the symptoms of Hyperthyroid are mostly opposites of Hypothyroid. Body temp high, rapid pulse, heart rhythm problems, sleep problems, hyperactivity among many others. Overdosing of replacement thyroid hormones can cause serious heart rhythm problems and even be fatal. As Eileen has said under treating can also be serious. PS. Eileen, I find it hard to believe you ever had a weight gain problem. 
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#55925 12-19-2004 07:43 AM | Joined: Jun 2002 Posts: 206 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Jun 2002 Posts: 206 | Hi Gary, I have Hypothroidism and have to take synthroid. I need to have it checked before I go to Orlando. That is the one thing I don't like about moving. Have to get all new Doctors and Dentist.  Thank you for talking about it. Cathy
Cathy
SCCA Stage IV diagnosed 01/90
base of tongue with 1/2 removed.
With neck resection, radiation and chemo
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