#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
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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
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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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