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TKI therapy and levothyroxine

TKI synthroid hypothyroid levothyroxine Sprycel

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#1 Synapse

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Posted 04 March 2015 - 12:54 AM

Hey guys, I just wanted to let people know about the effect of a TKI can have on your thyroid hormone balance. This is something I went through over the past year. I was initially balanced (with TSH less than 1) before CML hit. Then I started Sprycel 100mg. It through me into severe hypothryoidism, with TSH skyrocketing to 40. It has taken a long time to bring it back down and get me back to the normal range. I am now on mega doses of levothyroxine to get me there. I just wanted to post this in case any one else on this board takes levothyroxine/Synthroid/Tirosint. It is a known side effect of the tyrosine kinase inhibitors. Since these are relatively new medications, not all endocrinologists likely know this correlation.



#2 rcase13

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Posted 04 March 2015 - 07:19 AM

Yep Tasigna trashed my Thyroid. But I am the other way. I am hyperthyroid. My TSH is almost zero. My T4 and T3 are high normal right now. They were both high before. My endo thinks I may be on my way to hypothyroid. I didn't really understand that. I think I would rather have hypo maybe then I could stay asleep. She had no idea what CML was. I think she is going to do some research.

Before CML I never got sick and was always healthy and active. Cancer sucks...

10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)

01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg

 

Cancer Sucks!


#3 Trey

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Posted 04 March 2015 - 09:59 AM

http://www.ncbi.nlm....pubmed/16198662



#4 mlk210

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Posted 04 March 2015 - 12:01 PM

Synapse, Do you have your thyroid? I only ask because you said your tsh was under 1 and I know for many thyroid cancer patients, the endos like to keep you suppressed  (under 1). 

 

I'm wondering because I am on synthroid due to having a thyroidectomy in September. I had my surgery on a Thursday and by Monday morning my tsh was already at 14. The doctors were surprised because usually the hormone stays in your body for awhile after the thyroid is removed. Although I stayed on Sprycel 100 the whole time, my tsh has gone from .2 to 1.45 to 5.34 with the same dose the last 5 months. I honestly had no symptoms of the hypothyroid when I went in this last time. I go back soon for another check on my level.


7/2014 Diagnosed,8/14 Started 100mg Sprycel, 9/14 Thyroidectomy (thyroid cancer)

8/2015 Undetectable, 12/15 Plural Effusion (3 wk drug break)

1/2016 Started 70mg Sprycel, 3/16 Plural Effusion (4 wk drug break)

3/16 .014 after a wk w/o meds

4/16 Started 400mg Gleevec

4/16 Undetectable, 7/16 Undetectable, 10/16 Undetectable, 2/17 Undetectable, 5/17 Undetectable, 8/17 Undetectable

 
 

#5 Lucas

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Posted 04 March 2015 - 02:04 PM

hi, everybody. i have problems with my thyroid too (hyper). my endocrinologist want me to do some tests but he told me that my case is sub-clinical it's probably a reaction from the tkis and probably i'll not have to treat it. i read and arcticle about thyroid issues on tki and it said that about 55% of people on tasigna and 70% of people on dasatinib will have problems with the thyroid but 75% of the cases are sub-clinical and will not need treatment. good luck to all. 



#6 Synapse

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Posted 04 March 2015 - 02:07 PM

Mlk, yes I've had a total thyroidectomy.

#7 mlk210

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Posted 04 March 2015 - 06:14 PM

Synapse, How long ago did you start to Sprycel? How long did it take for your tsh to rise that high?


7/2014 Diagnosed,8/14 Started 100mg Sprycel, 9/14 Thyroidectomy (thyroid cancer)

8/2015 Undetectable, 12/15 Plural Effusion (3 wk drug break)

1/2016 Started 70mg Sprycel, 3/16 Plural Effusion (4 wk drug break)

3/16 .014 after a wk w/o meds

4/16 Started 400mg Gleevec

4/16 Undetectable, 7/16 Undetectable, 10/16 Undetectable, 2/17 Undetectable, 5/17 Undetectable, 8/17 Undetectable

 
 

#8 Synapse

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Posted 04 March 2015 - 10:21 PM

It was about a year ago that it happened. I have been on Sprycel about a month. The first TSH was 24 after a few weeks, and then after a month on Sprycel my TSH was 40. Since then we have been bringing it down.

 

I have a feeling it may be due to me taking them both at the same time in the morning. I did verify with two pharmacists (including one oncology pharmacist) that it was okay to do that and they both said it's fine. Do you take your Sprycel and levothyroxine together in the morning or do you take them at different times of the day? I am considering taking them at different times.



#9 mlk210

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Posted 04 March 2015 - 11:34 PM

I had meant to ask my endo about taking them together but never did. Since I started taking Synthroid, I do separate them. I take my synthroid and cytomel at 7am and then my Sprycel at 2pm (this happened because I was taking my Sprycel at 9am before my thyroidectomy. My pill got delayed due to the surgery that day and I never adjusted the time). I want to eventually push the Spyrcel to nighttime. Since I've only been on the treatment since August, I don't want to mess with the time just yet.

 

I can't imagine the hypothyroid symptoms along with the Sprycel side effects. Are you super fatigued?


7/2014 Diagnosed,8/14 Started 100mg Sprycel, 9/14 Thyroidectomy (thyroid cancer)

8/2015 Undetectable, 12/15 Plural Effusion (3 wk drug break)

1/2016 Started 70mg Sprycel, 3/16 Plural Effusion (4 wk drug break)

3/16 .014 after a wk w/o meds

4/16 Started 400mg Gleevec

4/16 Undetectable, 7/16 Undetectable, 10/16 Undetectable, 2/17 Undetectable, 5/17 Undetectable, 8/17 Undetectable

 
 

#10 Synapse

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Posted 05 March 2015 - 12:42 AM

I was pretty run down but I had felt like that prior to my CML diagnosis. So the fatigue from CML faded into the fatigue from hypothyroidism I assume. I fought through it and still went to work and worked out (lap swimming) but it was challenging. My energy level is better now but there is still room for improvement in many regards. I just hope and pray for no more setbacks.



#11 rcase13

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Posted 13 April 2015 - 12:38 PM

I am just starting to take this. My TSH is 22.8 at last check. I plan to take 75mcg at the same time as Tasigna. I checked with my OnC and was told this was OK. Synthroid has the same eating requirements as Tasigna so it works out well taking them at the same time. I feel great with no symptoms. It is difficult taking even more medications when I have no symptoms at all.

10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)

01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg

 

Cancer Sucks!


#12 hannibellemo

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Posted 13 April 2015 - 03:48 PM

Trey,

 

I found that article interesting because my sister died from medullary thyroid CA after 25 years. Another supposedly "good" cancer. It was not familial, most of my family, my mother refused, under went a calcitonin test to determine that. She was a professor at the University of British Columbia at the time of dx and they wanted to do a radical neck - pure physical mutilation. She protested and came to Mayo for a modified radical neck where they just took the nodes. I find it fascinating that we could have been treated with the same TKI for our cancers.


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#13 Terran

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Posted 13 April 2015 - 04:53 PM

Thanks for these comments.  I have been very sad about my weigh gain and lack of energy since I was diagnosed and went on Sprycel in January of this year.  I will press more specifically to have this addressed.



#14 stuharrisonsf

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Posted 25 July 2015 - 07:14 PM

Hi group.  I have been on dasatinib for CML for about three years and consider myself fortunate to be undetectable.  Generally, I would say that I tolerate dasatinib very well.  Before CML I was relatively healthy, and I had never experienced fatigue.  

 

Within a couple weeks of starting dasatinib I noticed that my body thermostat changed, quite dramatically.  I would feel cold at 70 degrees, now finding 75 to feel more like "room temperature."  At a sports event I would have to wear long underwear to not freeze in the stadium seats.  I accepted this minor inconvenience (along with the dasatinib rash) as par for the course.

 

However the fatigue has crept up on me during tki treatment - dramatically in the past few weeks.  I have found myself nodding off, even dropping my iPhone when checking twitter, which of course could be taken as social commentary... :)  

 

I frequently doze off when traveling as a passenger in a car.  I am sluggish about getting out of the bed in the morning.  I had noticed depression taking more space in my daily schedule.  I can only walk a mile or so before becoming exhausted. I'd stumble to find the right word when speaking.

 

During my most recent onc visit for the quarterly pcr, he suggested a TSH test.  I'm mildly elevated - sub-clinical hypothyroidism.  The other thyroid tests came back within range. My onc is big on quality of life, so I have started taking a very low dose of levothyroxine - 25mcg.  

 

After three days of hormone treatment, I already feel more energetic than I have in months. I plan to get my TSH re-tested in 4 weeks and will update you on the outcome. Ciao!



#15 Terran

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Posted 25 July 2015 - 11:15 PM

Thank you for the info.





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