| | Joined: Jun 2009 Posts: 440 Platinum Member (300+ posts) | OP  Platinum Member (300+ posts)
Joined: Jun 2009 Posts: 440 | Thanks everyone!
Charm- definately don't want to start any post wars.lol thanks for the info though.
Susan- I know my ob/gyn checked my tsh because I had complained to him I was tired all the time after baby #3 and he chalked it up to me just having to care for 3 small kiddos when the lab came back normal. I will have to give him a call and see if he could get me all my old tsh levels...thanks!
I'm so exhausted today and its only 8:30 in the morning, we have my husbands company picnic at sea world so I know I'm gonna be beat tonight, but I must do this for my kiddos!
Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
OCF Regional Coordinator of San Antonio Walk
| | | | | Joined: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2008 Posts: 507 | Charm, Thanks for your informative post on the thyroid - TSH / T4 issue. I was told by one of my RO's that issues like this will not normally show up until a year or more after RT. I don't know what my baseline was, but I seem to randomly get cold spells. I need to get up-to-speed on this since my thyroid test is now part of my physical so it is being monitored by my PCP. I am scheduled for the physical next month (lab a week before). My pre physical PET/CT came back clean (about two years now since DX), but with some notation of tissue fibrosis?? (thickening or something?)in my throat near the thyroid. I was told my ENT has reviewed it and will explain it to me at our next scheduled appointment (also next month). Also at my last RO visit, I was told this may be my last PET/CT... She said if it looks OK she would have the scan center set the archive up for future MRI overlays (does that mean I won't glow in the dark and set off the airport nuclear detectors anymore?  ).
Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11
| | | | | Joined: Jul 2004 Posts: 188 Likes: 1 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jul 2004 Posts: 188 Likes: 1 | I'll join the fray. I finally got tired of being tired and cold with a "normal" TSH of 4.8 (2.0 pre-rads) so I got an appointment with an endocrinologist, who adjusted my synthroid dosage from 75 to 88 and eventually to 100mcg, which brought my TSH down to 2.2.
The difference in quality of life has been remarkable.
My grandchildren and my wife no longer recoil from my touch (no more hands of ice), I'm comfortable, not freezing all of the time, and my energy level has improved.
I would encourage you to see someone who deals with this issue professionally, an endocrinologist, and get it straightened out.
I owe my life to the Oncologists and staff, but this just isn't in their sweet spot. The attitude almost seems to be "We saved your life, what else do you want? We have sick people to see here". I want to feel good, is what I want!!
See a professional.
Chuck
SCC Stage IV right tonsil T3N3M0. Dx 08/03. Clinical Trial:8 weeks Taxol, Carboplatin then Hydrea, 5FU, IMRT x's 48, SND, Iressa x 2yrs. Now 20 years out and thriving. Dealing with a Prostate cancer diagnosis now. Add a Bladder cancer diagnosis to all the fun.
It's always something
"Adversity doesn't build character, it reveals it."
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | ESikon
That's great that you will have a baseline TSH pre-cancer. I'm glad that Chuck added his testimonial
Fortunately, your pre cancer test will tell you what is the correct TSH level for you. You will probably have to go to an endocrinologist as most GPs and even CCC docs blindly adhere to the lab limits, but any decent endo will know that you want to be back where you were and help you.
Just last night, my wife added her version of Chuck's story as she commented that for the first time in three years, she could snuggle up to me and get warmed instead of chilled. It's a big deal for us and one reason I am going to focus on TSH levels more here on OCF.
Good luck
Charm
Charm
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Don
You are always so informed and convincing that I hope you can set your CCC on the right road. I just got frustrated and took their advice to go to a newly minted endocrinologist who literally had gone to Medical school in the 21st century. My MO felt that the new grads were in tune with my belief that your TSH level should be the same before and after cancer, while the old 20th century CCC dictum was that even a 300% increase did not warrant any medicine as long as it was within "normal" range. Again, since even endocronologists cannot aqree whether the upper limit is 3.0 or 5.5, IMO that is not good medicine.
Charm
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Don,
My thyroid crapped out 4 months post.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jun 2010 Posts: 58 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jun 2010 Posts: 58 | my husb is 5 weeks post and battling the chills also. Is it too soon to consult an endo doc?
Bonnie
CG to husb John, 57, love of my life for 35 yrs.
Dx 2/10, T2N2cMx, SCC BOT & lymph nodes.
Non smoker. Biopsy HPV+.
No surgery - IMRT 35X + 7 chemos cleared BOT
9/10-mets to lungs.
2 rounds chemo, last one trial drug which did not work.
Lost the battle, but walking in Glory 9/7/11.
| | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | Johnswife - time varies for people when the thyroid, starts to lose function, it has a lot to do with where the radiation was delivered, and for how long. While this is a simple blood test to evaluate the levels or hormones being produced, just food for thought, if he is still non strong pain meds or coming off them, they can produce some significant chills.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
| | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | Johnswife - time varies for people when the thyroid, starts to lose function, it has a lot to do with where the radiation was delivered, and for how long. While this is a simple blood test to evaluate the levels or hormones being produced, just food for thought, if he is still non strong pain meds or coming off them, they can produce some significant chills.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
| | | | | Joined: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2008 Posts: 507 | Charm,
I did have a baseline pre-tx thyroid test and a follow-up about seven months post-tx, and I will have another in a few weeks, but I have never questioned these since I never had any cold spells until recently and they seem to come and go
Is there a normal variation in these TSH levels? Should I ask about a significant increase such as 2 to 4 from pre-tx, or what would you suggest?
Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11
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