| Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | OP Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Well I started taking mine at night and I'll see if I notice any difference. At least after 2 nights I don't. I doubt it but I'm ready to mix things up a bit.
Re the problems sleeping at night...with my 2 85 lb Pit boys and usually at least 4 cats and of course my wife somewhere all trying to fit on a king size bed I already have sleeping problems so I don't think I'll notice a difference with the pill.
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 2009 Posts: 440 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jun 2009 Posts: 440 | So funny how we all take it differently. I was told to take mine on an empty stomach at least 30 minutes prior to eating and to drink lots of water too.
So I usually take mine 30minutes prior to eating but if I wake up starving and in a rush, I don't take it until mid day. I also don't take with lots of water.
I think I may try to switch my time up and try it at night. My symptoms have improved a little but I still run high. Docs won't increase the dosage in fear of me losing more weight from the increase, I'm barely holding down triple digits.
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: Oct 2006 Posts: 383 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Oct 2006 Posts: 383 | Instructed for A.M. before breakfast, plenty of water also. Dr. increased doseage once. Not sure night would work for me as I take no meds in evening. Been on for four months, new dose for two of that, blood work last week shows now under control. Energy back as well!
SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!
**** PASSED AWAY 10/8/16 ****
| | | | Joined: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: May 2010 Posts: 638 | Thyroid meds are easily affected by other things you might eat which is why your doctors ask you to take it before food. This means if you have food, it doesn't absorb so well and your blood levels may not be high enough. If you really want to take your meds with breakfast, or at night, it is just a matter of working with your doctor, to ensure your blood levels don't change. If they do, your dose needs adjusting. Simple. The trick is, once you have the routine and the correct blood levels, stick to the routine.
So here is my question: When should I get Alex's thyroid levels checked and how many nuked patients need thyroid meds? He completed radiation at the end of August last year (5 months ago).
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED  Still underweight
| | | | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,409 | An interesting discussion. I too take my generic Synthroid as soon as the 50 pound dog on the bed next to me has decided she (at any rate) has had enough sleep and awakens me. This is typically before 7 a.m. I then wait half an hour or so before eating or drinking anything else as per the instructions on the bottle.
Last blood test my doc said my TSH levels were too high so he told me to double the Synth from 25 mcg to 50. I'll be rechecking blood next week so we'll see if that does the trick. I'll ask him about the time of day issue then too.
On a side note, when I asked my GI doc what I should put in my stomach first thing in the morning here was his answer: "Anything but coffee".
d2
David 2 SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | Joined: Sep 2009 Posts: 126 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Sep 2009 Posts: 126 | Karen, if one is aware of the need, the recommendation would have been to det the thyroid "baseline" prior to radiation, so that you know what your normal is after radiation. It appears from discussions on the forum that most doctors don't suggest this so you have to ask for it. I on the other hand was already on synthroid prior to my cancer.
I pose a different question...has anyone else had their thyroid "zapped" with radioactive iodine, and then diagnoised with oral cancer. I will always wonder if their was a connection and I know I will never really know the answer but it does make me wonder if their was a connection.
Sharon
Sharon, 57; Hard Palate; T1, High Grade, DX 6-12-09, Surgery, maxillectomy 7-14-09, 33 RT (9-2-09 to 10-19-09); Prothesis (obturator). None smoker, non drinker.
| | | | Joined: Sep 2009 Posts: 96 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Sep 2009 Posts: 96 | From what I hear most people that have had radiation even if it wasn't on their head and neck area have thyroid issues. I have a friend who had radiation for cancer and she is on thyroid meds. My RO worked with my general dr I think to get blood work done to check my level sometime after radiation was over. It is a simple blood test that you can request be done.
31 at dx 9/06 SCC T4N0M0 with bone invasion upper maxillary Surgery 10/06 CT's clear for 2 years 2nd recurrence - Laser surgery 1/09 dx Tumor board - No surgery to invasive for QOL 35 IMRT 3/30/09 Completed 5/15/09 8 tx Erbitux 3/24/09 Completed 5/6/09 HBO for ORN March & April 2010 Fibula flap 5/10
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | I had radiation and do not have thyroid problems. I wouldnt agree with most patients having that problem. Sure it affects some but not most. Just like trismus, it affects some but not most. Seems we all end up having out own unique set of after effects. Just like the side effects, we all had varying degrees of issues. How I wish there was an easier cure for oral cancer! Something that wouldnt involve so much suffering and long lasting effects. ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Sep 2009 Posts: 96 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Sep 2009 Posts: 96 | Everything that I have read and heard is that most people will have some issues. But I have also read that some people the issues won't show up until years after the treatment is over. I am glad to hear that you don't have any issues and pray that it continues that way. I wish that there was an easier way too.
31 at dx 9/06 SCC T4N0M0 with bone invasion upper maxillary Surgery 10/06 CT's clear for 2 years 2nd recurrence - Laser surgery 1/09 dx Tumor board - No surgery to invasive for QOL 35 IMRT 3/30/09 Completed 5/15/09 8 tx Erbitux 3/24/09 Completed 5/6/09 HBO for ORN March & April 2010 Fibula flap 5/10
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Finally, a nasty side effect or terrible consequence of this cancer that Christine does not have. Yea! I'm am so glad to hear your thyroid works (I can't say "like a charm" since mine doesn't). As Brian and others have pointed out, it depends on the path of the radiation. RO's try to avoid the thyroid but it can't always be helped, especially for base of tongue tumors.
I'm glad to see this thread. I think that thyroid medications can and should be taken at night, on an empty stomach, for the majority of patients and that the warnings and advice against that are not based on science nor statistically significant studies. I am so glad my endocrinologist is young and open minded: as she says: It's hard to argue with the facts of blood tests. She readily admitted her morning advice was based on med school and that no one in her class challenged this "wisdom" nor does she recall seeing any studies in her journals actually documenting the validity of morning doses, only some studies questioning it and the ones I listed discrediting it. 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
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