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#60188 01-26-2007 05:28 PM
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My doctor just today prescribed synthyroid for me. Does anybody have any info and experience with this medication? I am 3 years out from diagnosis and doc says my thyroid is now toasted so I guess this is a med I'll take for life. Any information would be helpful. Thanks,

Pam


SCC Base of Tongue Stage IV- 2/04 - 40 Rads 1/2 conventional, 1/2 IMRT; 3 chemo treatments consisting of Carboplatin/Taxol/5-FU; Right Radical Neck Dissection
7/04; scans and pathology clear
#60189 01-26-2007 07:04 PM
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Hi Pam,

Yes, I too have to take thyroid pills. After about 5 months after treatment I was having all sorts of problems. Had Thyroid test and I ended up with hypothyroidism.

From what I have read here on OCF there are a lot of us with this condition.

I am also having some other problems with Body temperature. I am going to go to another Dr. Soon so I can get it under control or a least some answers.

So Girl you are not alone on this one.
Take care,
Diane


2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
#60190 01-27-2007 02:19 AM
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I just started taking levothyroxine (generic synthroid) last November. By the time they put me on it I was having severe bhypothyroid symptoms, as they had not tested me in a year (although I thought they had tested me over the summer). I was constantly exhausted, could not get warm, etc. In the two months since then I have gotten most of my energy back and don't get chilled so easily.

My understanding is that synthroid, in the correct dose, has very few side effects you need to watch out for. The trick to keeping your thyroid stable with it is you have to always take it on a completely empty stomach and not have anything in your stomach for an hour after taking it--even having a morning cup of coffee after taking it can disrupt it's effectiveness!

You are definitely not alone, though. My understanding is this is a pretty common after-effect of radiation to the neck.

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
#60191 01-27-2007 05:08 AM
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Pam,

I am so glad that you posted this question. Everyone that has completed their treatment should be tested. I think it gets over looked at times.

Nelie, I did not know that coffee would interfere. Thanks for mentioning that.

Pam, the other Dr. I am going to consult is called a Endocrinologist. I could not think of the name on my other post to you..

take care,
Diane


2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
#60192 01-27-2007 05:53 AM
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Pam --

My mother began taking synthetic thyroid pills after her thyroid was removed in the early 1960s (yes, more than 40 years ago), and my husband has taken them for a "sluggish thyroid" for about five years. Your doctor will periodically do tests to fine-tune the dosage -- for example, my husband takes one pill every other day -- but neither has had any problems with the medication.

All the best,
Leslie


Leslie

April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
#60193 01-27-2007 06:53 AM
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Thanks Diane, Nelie and Leslie for your responses. I started with the medication this morning - hearing from you guys made me more comfortable doing so and am now looking forward to not being so cold most of the time and a little more energy would be nice. I did read somewhere that you should limit your intake of soy with the Levothyroxine. I am going to ask my pharmacist about amounts. I drink a glass of soy milk daily but thought I would put a hold on that till I talk to the pharmacist. Will let you know what I find out. Take care everyone

Pam


SCC Base of Tongue Stage IV- 2/04 - 40 Rads 1/2 conventional, 1/2 IMRT; 3 chemo treatments consisting of Carboplatin/Taxol/5-FU; Right Radical Neck Dissection
7/04; scans and pathology clear
#60194 01-27-2007 11:08 AM
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Hi Pam, I have been on synthroid now for almost a year...I was so incredibly tired and run down all the time, finally had my blood work done and it came back showing I have hypothryoid (sp?). Anyway, my doc has gradually increased the dosage, to get the proper level on blood test, but I am always tired......I have soy milk every morning with my cereal..Take Care and I hope you start feeling more energetic, oh and I was extremely cold all the time (hands and feet) that has stopped.....Carol


Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
#60195 01-27-2007 12:57 PM
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Altho John is in such gloomy shape that it's hard to know what is going on when, I am latching on to this thread for a "ray of hope" for some energy boost for him. He has been Levothyroxine 75 mcg for a couple of years. However, he takes it with his am feeding most of the time. Somehow the info about taking it on an empty stomach got lost . I'd like to know what dosage you all are taking and how often you get a thyroid test run. Thanks, Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

:
#60196 01-27-2007 01:22 PM
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Amy,

Dr. S put me on Levothyroxine 0.100 mg (100mcg) - 1 tablet in the mornings on empty stomach - don't eat for an hour,like Nelie said. He didn't say how often he would run a thyroid test - just that we would see where I'm at at my next check-up in April.

Carol,

Thanks for the added info - I would think a couple servings of soy a day would be OK - I just don't like dairy milk anymore - the soy is much more palatable to me - dairy milk seems to be too thick for my dry mouth - even the skim milk. I am so tired of being cold - how long did it take for you to notice improvement in that area? Thanks, Pam


SCC Base of Tongue Stage IV- 2/04 - 40 Rads 1/2 conventional, 1/2 IMRT; 3 chemo treatments consisting of Carboplatin/Taxol/5-FU; Right Radical Neck Dissection
7/04; scans and pathology clear
#60197 01-27-2007 03:22 PM
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I've been on synthroid for almost 2 years now. As a result of my last blood test, they upped my dosage to 75 mcg. I started getting symptoms around 5 months after completion of Rad treatments. The symptoms were a sudden 4 or 5 pound weight gain, sluggishness, and cold extremities. I felt cold all the time. I also had symptoms of what I thought was carpel tunnel syndrome in one wrist, but was told that it might have also been a symptom of the fried thyroid, as hypothyroid can cause fluid retention at the joints. After starting Synthroid, the joint pain cleared up, and I felt much better.

The symptoms returned a month ago, and sure enough, my blood tests showed a need to increase the synthroid dose. I don't remember being told to take it on an empty stomach, but I do remember instructions to not take a multivitamin which contains iron, as it would interfere with absorption. The multivitamin should be taken later in the day.

I found some good info at AllThyroid.org
Here's a link to the website:
http://www.tsh.org/index.html

It is a very easy side effect to manage. Synthroid has been around for more than 50 years,and is one of the most prescribed drugs in the world. The generics have not been around as long, and have gotten a lot of bad press about consistent dosing. My doc writes the script to be filled as written, and luckily, because it is relatively inexpensive, my drug plan dispenses Synthroid as the generic. I am to have another blood test after I have been on the new dosage for 6 weeks, and adjustments will be made based on that.

Hope this info helps.

Good Health,

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."
#60198 01-27-2007 09:18 PM
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Here's the link to the info right here on OCF as regards Radiation and (Hypo)Thyroid:

http://www.oralcancerfoundation.org/facts/hypothyroidism.htm

Lots more thyroid info if one does a search of that word at the foundation (not forum) level.

I've been taking synthroid/levoxyl for hypothroidism since about 1993-4, in varying doses from 50 to 150 mcg and needing adjustment every so often. Unfortunately, some of the hypo- symptoms are also present with hyper-thyroidism, so one can't always tell which way out of whack one is.

About two months ago, on 125 mcg (and ten months out of XRT), my TSH was 0.01, indicating too much hormone (between my thyroid and the meds); we waited a month on the same dose and it dropped to 0.00, so they had me stop taking anything and after a month it had rocketed up to 88.5!! Now we are trying me for a month on 50 mcg. Odd thing is I'm not really feeling any different through this part...

BTW, TSH (thyroid stimulating hormone) is what the pituitary gland puts out to tell the thyroid to produce (high TSH indicates thyroid underproducing, aka hypothyroid). The URL above finds that almost 70% of us will be hypo within seven years, so I find it strange indeed that I seem to have gone hyper, but someone has to be out on the ends of the normal distribution curve or it wouldn't be a curve <grinz>.

Usually, I get by with six months or a year between tests, but this has been different for sure. The seven years indicates to me that all of us who have been Chernobyl'd should be asking for thyroid function testing at least annually (probably sooner given the median to hypo is only 1.4 years). I printed out that URL text and gave a copy to my regular Doc for his info.

BTW, one should not eat for one hour after taking the meds or should not take the meds for two hours after eating -- Calcium is a real no-no as far as messing up this med -- I dunno about coffee -- I try to wake up, take it and go back to sleep for another hour or so.


Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
#60199 01-28-2007 12:54 PM
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I was told no coffee--no anything but water. I do put cream in my coffee, so maybe it's that. Amy (and whoever else said they wern't taking it on an empty stomach), if you swtich to taking it as directed, you may want to be retested after a couple of months since the dosage you needed for it to work when it wasn't on an empty stomach might be too much (and cause hyperthyroid which is also not good) once you take it as directed.

For what it's worth, no one told me about the empty stomach thing either and the first couple of weeks I took it with morning feeding. Then I actually got around to reading the long thing the pharmacist prints out for you. Within a week of following the empty stomach directions, I felt an increse in energy.

I take 75 mcg by the way but I'm being tested every couple of months because my TSH levels are still a little high.

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
#60200 01-28-2007 02:33 PM
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A good website I found years ago that describes the symptoms of both hyper and hypo is www.endrocrineweb.com. Remarkably some are the same regardless of which you go.

Before anyone has radiation, one is supposed to get a full thyroid test to determine THEIR normal. This should include TSH, T3, T4, etc. Your former TSH level is what you want to be as close to normal for weight maintenance and fatigue and overall feeling well after treatment. It has a wide range so don't let the dr say 'it's within range' if you are having fatigue or 'woofing down calories but not gaining weight' or still freezing or roasting', get the numbers.

I have been on synthroid since 2001 when they removed half of my thyroid. I have no side effects from meds. I was told NOT to take anything with Calcium or iron at the same time. It could either be taken two hours after or 4 hours before. I take it in the morning with all my other meds and some vitamins and Zinc.

I started on synthoid 75, upped to 88, and now on 100 once a day. Full TSH, T3 etc. test run every 6 months. More often if I have problems. I can usually tell I will be tired or eat eveything in sight with no gain.

I don't want to scare anyone, but if your thyroid goes either Hyper or Hypo TOO far, it can be fatal. So learn the symptoms and keep on top of your docs to get the tests run. Some synthroid just might help some of you to 'perk up'. The trick is getting the correct dosage.

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
#60201 02-02-2007 05:52 PM
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OK - I have been taking the Levothyroxine for 6 days and by Thursday, my tongue was swollen. Not enough to obstruct breathing, but is affecting my speech. So for now, the doctor is stopping the medication to see if the swelling goes down - we're assuming I'm allergic to something in it - there have been no other changes in my diet during this time. This is frustrating as I was really looking forward to warming up and having more energy. Oh well, I'm sure we'll find a solution. Meanwhile, I just won't be saying any tongue twisters using S's!! And this was supposed to be a drug pretty easily tolerated and I have never had an allergy to any medication - go figure!

Pam


SCC Base of Tongue Stage IV- 2/04 - 40 Rads 1/2 conventional, 1/2 IMRT; 3 chemo treatments consisting of Carboplatin/Taxol/5-FU; Right Radical Neck Dissection
7/04; scans and pathology clear
#60202 02-03-2007 04:55 PM
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Pam,

It happens that my brother-in-law is visiting us this weekend. He has worked for a major pharmaceutical company for many years, and is also a long-time thyroid cancer survivor who has been taking levothyroxine for about 30 years. He was surprised that it might cause this kind of reaction, as it is made from a naturally-occuring substance that generally does not produce adverse results. (Although he did think there could be trace amounts of other ingredients that might react in some fashion.) Can you think of anything else you might have ingested around the same time that could have caused the swelling?

Cathy


Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
#60203 02-03-2007 09:05 PM
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Cathy....would you please ask your BIL about how to take the thyroid med.? I have taken it for years, and I have never been told (that I recall) to take it on an empty stomach, nor to avoid taking it with iron and calcium. I hope I haven't been taking it wrong all of these years. I do know that I can't take it in the evening, since it interferes with my sleep. Other than that, I have never had any reaction, exc. that if I take too little, I am sluggish and un-focused.


Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
#60204 02-04-2007 03:17 AM
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Cathy,

Thanks for responding - I immediately started going over everything I ingested in that time frame and came up with nothing unusual or different. The swelling in my tongue has gone away completely within the last 36 hours - so I am assuming I had a reaction to something in the medication whether it be the active or an inactive ingredient. I'll know more tomorrow when I talk to the doctor I guess.

Pam


SCC Base of Tongue Stage IV- 2/04 - 40 Rads 1/2 conventional, 1/2 IMRT; 3 chemo treatments consisting of Carboplatin/Taxol/5-FU; Right Radical Neck Dissection
7/04; scans and pathology clear
#60205 02-04-2007 01:23 PM
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This site says take it in the morning:
http://www.rxlist.com/cgi/generic/levothy_pi.htm

This site says no calcium or iron within three hours before/after, and has a link to info on caffine-thyroid interactions:
http://thyroid.about.com/library/news/blpitfall1.htm


Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
#60206 02-05-2007 12:25 AM
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Colleen, if you call your pharmacist, they should be able to tell you about instructions for taking on an empty stomach. Looking around the site that Pete linked, though, I found this which mentions both the empty stomach and waiting an hour after taking before eating, as well as the calcium and iron thing.

http://thyroid.about.com/library/howto/htthyroid-drugs.htm


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
#60207 02-05-2007 02:20 AM
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Colleen,

My brother-in-law was already on the plane headed home when I got your follow-up question. However, in addition to the links noted above, I found this link, which pretty clearly mentions the "empty stomach" requirement, as well as the potential interactions with other drugs and supplements.

http://www.medicinenet.com/levothyroxine-oral/article.htm

Cathy


Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
#60208 02-07-2007 07:07 AM
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Colleen,
I have been on thyroid for about a year. I was told about taking it on an empty stomach and waiting one hour to eat. I was also told not to take calcium for atleat 1-2 hours after taking the synthroid.

Cacky

#60209 02-09-2007 08:05 AM
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My dad was on synthroid for many years. I remember that they had to "dial in" the correct dose and slight changes can make a big difference. The NCCN guidelines recommend TSH level blood tests every 6 months and, as Eileen stated, they should have done a baseline test prior to starting Tx. Patients receiving XRT are a high risk of thyroid failure because of collateral radiation damage. With IMRT, they can program the beamlets to avoid the thyroid, so thyroid problems are less common for patients recieving IMRT. The location of the tumor in relation to the thyroid would also play a role. It took several years for my thyroid function to return to the low end of normal and it has pretty much stayed there since then.


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)
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