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#150019 05-25-2012 06:07 PM
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CherylR Offline OP
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Hoping someone can help with this...hubby now has TSH of 3.89, years before dx was .67. Symptomatic for hypothyroid...was cold all the time - wrapped up in winter clothes during a heat advisory last year, mood swings, extreme fatigue, etc. Convinced doc that they should be looking at symptoms etc and not lab saying 3.89 is normal (3.0 will happen here in the next century). Started synthroid at 50 mcg and he had hot flashes like crazy after 2 weeks of tx (kids and I were wrapped in sweaters and blankets and I never want to hear about MY menopause again) First the doc said cut to 25 mcg and dh refused due to the side effect...now doc says 100 mcg. Any of you guys have hot flashes with synthroid? And did you need to be adjusted up or down? I've exhausted myself searching for an answer. All I'm finding is that this is one of the side effects that says call your doc. Thanks.


CG to H with SCC BOT T4N2cM0 dx 12/19/08, teeth removed pre-tx; Erbitux & RT-done 3/12/09, PEG 2/9/09-7/14/09; ND 6/16. Pet 6/12-no mets except lymph node in neck removed on 6/16. Chyle leak,2nd surg to repair. Dilate esophagus 4/15/10. Clear PET 12/17/10
CherylR #150020 05-25-2012 08:00 PM
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Cheryl,
My experience being on synthroid since last summer (started at .25) is that you really have to wait at least 6 weeks before you know what it is going to do to you. Actually 8 weeks is better. I did not believe that at first, but now that I am finally adjusted I do. It might have been better if your husband started slower at .25 which is just a diagnostic dose really, then moved to the .50, but ok, so his body is having hot flashes at .50: that may just be a temporary reaction. Synthroid is not a "take one and you'll be fine in a week or two" kind of medicine. I guess some may have it easier but lots of us have to go through several months of upward adjustment before you feel good. Even after you are at the optimum you may have to wait another 2-4 months before all the symptoms vanish because your body has to heal. Your husband's TSH, while higher than it should be, is low compared to what mine was--try 52. So maybe it won't take him as long.
I felt better after being at the .50 dosage for 6 weeks but not really good, same at .75, etc.

I got impatient too, so I do understand.
Anne


SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of Fall, 2021
CherylR #150021 05-25-2012 08:14 PM
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CherylR Offline OP
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I don't think it's so much impatience as fear....if 1 in 10,000 people were to react to something, it would be him. Now he's ready to throw in the towel and just let it be. This guy got cellulitis up to his knee from a piece of latex tape on a toe, had a chyle leak which apparently is rare...(sigh, that's just a couple of examples) so any adverse effect really throws him. On the other hand, I could see a difference in just 3 weeks...mood changed, not sleeping as much. Just bothers me that we've gone from "oh, cut the dose in half" to "double it" and all my searching on the hot flash thing seems to pertain to women much more than men.

Cheryl


CG to H with SCC BOT T4N2cM0 dx 12/19/08, teeth removed pre-tx; Erbitux & RT-done 3/12/09, PEG 2/9/09-7/14/09; ND 6/16. Pet 6/12-no mets except lymph node in neck removed on 6/16. Chyle leak,2nd surg to repair. Dilate esophagus 4/15/10. Clear PET 12/17/10
CherylR #150022 05-25-2012 08:28 PM
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I was also afraid there was something else wrong with me, but it was just my hypothyroidism.

Somewhere I read that the body will sometimes react the opposite way with an increased (or starter) synthroid dose. I know I initially would feel good after increasing the dose, then not so good during the middle part of the 6-8 weeks I was on a dose, sometimes better at the end.

From my experience I would want to stay on the .50 for 6-8 weeks before I went on. Some docs switch people around like that. Mine did not because he said that the body would have bad reactions to sudden increases, that it had to be done slowly. Not what I wanted to hear, I can tell you. It was winter and I wore a heavy fuzzy robe over flannel pjs, could pile blankets on me, then I was warm enough. An alluring sight to behold I'm sure!

I really think it is not anything to be alarmed about. Sometimes I had a few heart palpitations. That's supposed to be hyperthyroid, but when your thyroid is being adjusted you can have them, especially when your thyroid level is unstable.

Providing the doctor knows how to treat thyroid (and GPs can be the best, depends) then he probably thought he'd take him down a dose because of the reaction more so then thinking the dose would be ultimately too much for him, and then decided to increase it because he felt that your husband was hypo. But jumping to 1.00 from .50? That is too abrupt for the doc that was treating me. There are stops at 75 and 88 before you get to 100 (or 1.00).
Best,
Anne


SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of Fall, 2021
CherylR #150033 05-26-2012 07:03 AM
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Hormone supplementation is a tedious process to get just right, and it never stays exactly in the same spot over the years. Radiated patients that have had their thyroid lost, are very different from the normal population in what is "normal". So doctors that are not really up to speed on this situation don't get that normal lab values do not always apply to us.

Once you up or decrease your dose of this, it can take a month or more for your body to respond to it and balance out. My first go at taking synthroid took 4 Rx changes before I started to feel right (not cold and lethargic). And waiting 60 days to be sure my body was leveled off at the new dose / each change, was a pain in the rear� I wanted to feel better NOW. But there is no way around the time issue. I hope Charm will chime in on this thread he has the most experience and knowledge of any of the posters about this whole situation. If he doesn't in the next day or so, look his name up in the search feature, and look at his past posts. He has explained it a couple of times to people.


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.
CherylR #150048 05-26-2012 09:16 PM
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CherylR Offline OP
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Thanks Brian...will look up Charm's posts. My real concern, here is not time...it's the switch off from hot flashes at 50, to the opinion to go to 25 and then the switch to 100. I tend to have a short fuse with docs these days and the radical change just doesn't seem right to me. Also having problems finding info on the whole hot flash thing with men...find plenty on women but not on men. Appreciate the advice Anne and Brian and will track down Charm's posts for sure.


CG to H with SCC BOT T4N2cM0 dx 12/19/08, teeth removed pre-tx; Erbitux & RT-done 3/12/09, PEG 2/9/09-7/14/09; ND 6/16. Pet 6/12-no mets except lymph node in neck removed on 6/16. Chyle leak,2nd surg to repair. Dilate esophagus 4/15/10. Clear PET 12/17/10
CherylR #150054 05-27-2012 06:37 AM
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Cheryl

Hot flashes are NOT a normal side effect for men on thyroid medication. My advice is to schedule an appointment with an endocrinologist, preferably one who went to medical school in the 21st century. While many GPs and oncologists feel comfortable treating thyroid issues, when something like this pops up, more experience is better.
My endocrinologist insisted that my first dosage should be only 25 mcg, then after 3 months and blood tests, 50 mcg - another three months and blood tests, and then 75 mcg. For me the 75 stablized my TSH. Some go on to 100.
I wanted to do the 100 right away but my endocrinologist explained that only by starting off slow and low dosage would we avoid any side effects. According to her, a big drop in my TSH all of a sudden back to what it had been would cause me problems. Plus she was looking to see what forumulation of Levothyroxine would work best. She dislikes Synthroid and has had good experience with Levoxyl, The NIH pages lists all these versions: Eltroxin ,Estre ,Euthyrox, Levo-T, Levotabs, Levothroid ,Levoxyl, Novothyrox, Synthroid, Thyrox , and Unithroid,. The Internet is rife with blogs about how switching from one brand to another made a difference even though they are all technically Levothyroxine. Sometimes it's the binder, or some other factor but most doctors do have a preference based on what works.
These things are tricky which is why it is crucial to get blood tests and take it slow.
What is your husband's TSH level now? My endocrinologist would never even consider changing my dosage without a blood test - which gives an objective criteria.
You have done a great job, but it sounds to me like your husband should be seeing a specialist. It could be nothing more than just needing to start off lower, with a different brand and work the TSH down and the mcg dosage up.
My change from 25 to 75 was spread out over 6 months. My TSH level gradually dropped from 4.3 to 3.04, then to 2.17 and then 1.48 and now 1.36 (before cancer I was 1.6) No hot flashes, no problems except for my IMPATIENCE, (Brian explained it so well in his post)
Oh, and yes, I wore winter clothes during 80- 90 degree days and had zero energy until I got my dosage right. Now I'm back to T-shirts. shorts and working out.
Keep the Faith
Charm

Last edited by Charm2017; 05-27-2012 06:50 AM. Reason: typos

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
CherylR #150086 05-27-2012 06:43 PM
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CherylR Offline OP
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Thanks Charm...was just signing on to look for your posts and this answers my question. I'm pushing hubby to see an endo. I nagged his GP into going thru records and in 2000 he had a TSH of .67 and was healthy. DX was in 2008. He is now at 3.89 and I have copies of other blood tests showing on average 1.0 increase per year over last 3 years. I believe he was symptomatic at 2.64 (or thereabouts). I'm up to my ears in docs these days (hubby, uncle, mom, 2 grandkids and myself) and have a tendency to question everything. Searched NIH and couldn't find much there on the hot flash thing and that made me even more skeptical. Thanks so much for your input and advice...highly valued as always.


CG to H with SCC BOT T4N2cM0 dx 12/19/08, teeth removed pre-tx; Erbitux & RT-done 3/12/09, PEG 2/9/09-7/14/09; ND 6/16. Pet 6/12-no mets except lymph node in neck removed on 6/16. Chyle leak,2nd surg to repair. Dilate esophagus 4/15/10. Clear PET 12/17/10
CherylR #150096 05-28-2012 06:17 AM
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Cheryl

It is so frustrating, isn't it? Even my medical oncologist was clueless about the need to get your TSH back to the before cancer score instead of assuming that anything within the lab ranges was okay. We had quite the discussion until he admitted that his "knowledge" of thyroid treatment was just out of the same medical school textbook I had read and agreed with me that a specialist was the way to go. Don't even get me started on the incorrect lab test ranges that everyone uses despite the evidence to the contrary.
Again: let your husband know that seeing an endocrinologist was the only way I got this fixed. Also bring copies of prior test results - I only had the one so I don't know the significance of the progression but it will mean something to the endo doc
Keep the Faith
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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