9 replies to this topic

[stpaddy]

Has anyone experienced this on Gleevec?  My husband has had this sensation since about last July and we cannot figure it out.  He describes it also as a feeling of nervousness, as if he's had too much coffee but is not actually nervous.  It's not a visible tremor.

 

Went to a physiatrist yesterday who did a nerve conduction test and found him to be ok from a "neuro muscular perspective."  Haven't been to a neurologist.

 

At first we thought his thyroid had become overactive but endo says not.  He had an underactive thyroid prior to CML and thyroxine was increased soon after starting Gleevec 400mg.  He reduced to 300mg of Gleevec in April 2017 and the vibration feeling started in July.  Thyroxine was reduced very slightly.

 

TSH levels:

July 2017 0.89

Sept 2017  0.83

Oct 2017  2.97

Jan 2018 3.12  

 

He takes 0.175 of thyroxine every day.

 

TSH seems to be increasing which is odd...we thought if TSH goes up, the thyroid is more underactive than over and you'd be less likely to get this vibration feeling.

 

Has anyone else had this...we can't help but think it is related to the thyroid and we just haven't got to the bottom of it yet.

 

And another question - are some TKIs less likely to interfere with the thyroid than others?

 

Thank you!!

[Pin]

Yes, I had something very similar when I was low in phosphate, almost like a nervousness in my chest, it would come and go and was often worse when I lay down at night.

I had some phosphate supplements and once my levels returned to normal it went away. It'd be worth checking his phosphate levels (should just be in his regular CBC).

The other thing I would suggest is making sure he takes some magnesium, that may help as well if he doesn't already!

Unfortunately, I'm not sure about the thyroid issue though

[jmoorhou]

I would try going to a naturopath and get b12 and other supplement injections.

[tiredblood]

I've had a vibrating sensation in the past. IIRC, may have been on Tasigna at the time. Like a phone vibrating but no phone on me.

[kat73]

I had a subtotal thyroidectomy in 1979 for what turned out to be benign adenomas.  (Yeah, too bad it was 1979 - today I wouldn't have had my thyroid removed.)  Anyway, I've been on levothyroxine since.  Ever since 2009 when I was diagnosed with CML and started TKIs, I have had the very weird experience of watching my TSH steadily start to indicate hyperthyroidism, all the while I have increasingly shown clinical signs of hypothyroidism.  I believe in science, testing and data; I believe most doctors know what they're doing.  I have had to submit, reluctantly, to having my levothyroxine reduced and reduced and reduced, now to barely nothing.  And yet, I'm more tired than ever, have the metabolism of a hibernating bear, am cold year round and all day and night, etc.  I'd love to posit that there is a TKI-induced disconnect between what is really happening and what the (I think, false) lab test shows, but evidentially and intellectually, my PC has got me boxed.  Wish I could help you, as I do think what your husband is experiencing is due to his thyroid, but it will be next to impossible to convince anyone in the medical profession.

[stpaddy]

Thanks for the replies to this.  His Alkaline Phosphatase was 50 U/L in last CBC. Is that phosphates?  Now that I compare, I see that it used to be 90 in June 2016.

 

I really don't know what to make of the thyroid.  Kat73, I hear you...the disconnect between symptoms and numbers is strange.  Fingers crossed we can figure this out.

[hannibellemo]

I don't know how old your husband is but is he taking any medication that could minimize the signs of hyperthyroidism such as beta blockers that may block signs of an increased heart rate? The effects of TKIs on our thyroid is well documented. I'm no longer on Gleevec but my thyroid was checked at least 3 times in the 9 months I was on it. I'm now checked yearly, I was amazed at how many things are effected by the thyroid and how bad/strange we can feel when things go wrong.

 

I've been on Sprycel for 9 years, first at 100mg now at 50mg. One of the first disconcerting side effects I had was tremors. These were very visible at first but as time went on they became more internal and now I seldom experience them but they do occasionally still occur.

 

Knowing we are going to have side effects from these drugs, whichever one we are on, I've learned to relax about them knowing that for most of the side effects at least, they weren't going to kill me in the short term. I'm not sure they have been around long enough to be complacent about the long term!

 

Good luck to you and your husband!

[stpaddy]

Thanks Hannibellemo.  That's interesting that you have tremors sometimes on Sprycel too.  Husband is 56 and not taking any meds other than Gleevec and Synthroid.  The tremors interfere with sleep and his fatigue has been bad lately also.  We are going to ask his GP to check phosphates, calcium, vit D and anything else we can think of.  We've been researching and looking at old posts here...the full impact of TKIs on the endocrine system seems to be a bit of an unknown.  

[Pin]

Thanks for the replies to this. His Alkaline Phosphatase was 50 U/L in last CBC. Is that phosphates? Now that I compare, I see that it used to be 90

Hmm, I think this is different - Phosphate is usually measured alongside calcium, magnesium, and other minerals.

[hannibellemo]

Please be aware, stpaddy, that this site is going away today (in case you didn't know). Do any searching as soon as possible as it may be more difficult on the community site and we will be limited to the last three years.

 

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Good luck!