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#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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for2or6 Offline OP
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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
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