Thyroid after been on ippi

My TSH crashed while I was getting ipi, and has rebounded somewhat but has not gotten back anywhere near normal. They also found several nodules on my thyroid, which may be totally unrelated. So in addition to dealing with melanoma treatments and tests, I get to add thyroid treatments and tests to the mix.

Had a fine needle biopsy done just last week of the nodules. The pathologist looked at the slides and gave me a preliminary opinion while I was there. He said they all looked benign, which was great news.

For the time being, the endocrinologist has given me methymazole to treat the hyperthyroidism.

I hope all goes well for you!

-Bill

My TSH crashed while I was getting ipi, and has rebounded somewhat but has not gotten back anywhere near normal. They also found several nodules on my thyroid, which may be totally unrelated. So in addition to dealing with melanoma treatments and tests, I get to add thyroid treatments and tests to the mix.

Had a fine needle biopsy done just last week of the nodules. The pathologist looked at the slides and gave me a preliminary opinion while I was there. He said they all looked benign, which was great news.

For the time being, the endocrinologist has given me methymazole to treat the hyperthyroidism.

I hope all goes well for you!

-Bill

My TSH crashed while I was getting ipi, and has rebounded somewhat but has not gotten back anywhere near normal. They also found several nodules on my thyroid, which may be totally unrelated. So in addition to dealing with melanoma treatments and tests, I get to add thyroid treatments and tests to the mix.

Had a fine needle biopsy done just last week of the nodules. The pathologist looked at the slides and gave me a preliminary opinion while I was there. He said they all looked benign, which was great news.

For the time being, the endocrinologist has given me methymazole to treat the hyperthyroidism.

I hope all goes well for you!

-Bill

I had very high thyroid that showed up definitively about a year after I had the ipi treatments.  It may have appeared earlier than that but I was not receiving thyroid testing regularly, and it was only spotted after it had become very high and was causing major symptoms.  I saw an endocrinologist with a very good reputation but he pooh-poohed the idea that it could have been a result of ipi since with little knowledge of ipi his only belief was that ipi could conceivably play a role in low thyroid, not in high.   The symptoms showed no improvement with conventional treatment, and he had me get my thyroid radiated.  The consequence of that was a major, major drop in thyroid levels, which he considered way beyond normal results and a new disease.  I was eventually, through synthroid, able to reach a level that is consonant with normal thyroid readings. However,  I still have, despite using hydrocortisone regularly, high fatigue levels in the afternoon and evening.May be related.  Who knows.  Feel very different, quite good, in the mornings.  

What bothered me the most about the endocrinologist was his unfamiliarity with the literature that shows some connection with thyroid in both directions.  He did not feel there was any importance for him to know what might be causing my condition.  I was frustrated by that and lost confidence in him, though perhaps the causality didn't matter for treatment.  

In the future, I would only see an endocrinologist who was vetted by an oncologist who would know which endocrinologists  were familiar with the potential of ipi being at the root of the problems.  I had never shown any sign of thyroid issues before so in my estimation it is most likely that my problems were a result of ipi.  

 I also think it is important to be measuring thyroid levels before and after the ipi therapy.  So do the oncological experts.  My oncologist obviously at tht time did not see the importance of that.  But I notice since all my problems measuing T4 and TSH is a standard part of my blood tests.

I had very high thyroid that showed up definitively about a year after I had the ipi treatments.  It may have appeared earlier than that but I was not receiving thyroid testing regularly, and it was only spotted after it had become very high and was causing major symptoms.  I saw an endocrinologist with a very good reputation but he pooh-poohed the idea that it could have been a result of ipi since with little knowledge of ipi his only belief was that ipi could conceivably play a role in low thyroid, not in high.   The symptoms showed no improvement with conventional treatment, and he had me get my thyroid radiated.  The consequence of that was a major, major drop in thyroid levels, which he considered way beyond normal results and a new disease.  I was eventually, through synthroid, able to reach a level that is consonant with normal thyroid readings. However,  I still have, despite using hydrocortisone regularly, high fatigue levels in the afternoon and evening.May be related.  Who knows.  Feel very different, quite good, in the mornings.  

What bothered me the most about the endocrinologist was his unfamiliarity with the literature that shows some connection with thyroid in both directions.  He did not feel there was any importance for him to know what might be causing my condition.  I was frustrated by that and lost confidence in him, though perhaps the causality didn't matter for treatment.  

In the future, I would only see an endocrinologist who was vetted by an oncologist who would know which endocrinologists  were familiar with the potential of ipi being at the root of the problems.  I had never shown any sign of thyroid issues before so in my estimation it is most likely that my problems were a result of ipi.  

 I also think it is important to be measuring thyroid levels before and after the ipi therapy.  So do the oncological experts.  My oncologist obviously at tht time did not see the importance of that.  But I notice since all my problems measuing T4 and TSH is a standard part of my blood tests.

I had very high thyroid that showed up definitively about a year after I had the ipi treatments.  It may have appeared earlier than that but I was not receiving thyroid testing regularly, and it was only spotted after it had become very high and was causing major symptoms.  I saw an endocrinologist with a very good reputation but he pooh-poohed the idea that it could have been a result of ipi since with little knowledge of ipi his only belief was that ipi could conceivably play a role in low thyroid, not in high.   The symptoms showed no improvement with conventional treatment, and he had me get my thyroid radiated.  The consequence of that was a major, major drop in thyroid levels, which he considered way beyond normal results and a new disease.  I was eventually, through synthroid, able to reach a level that is consonant with normal thyroid readings. However,  I still have, despite using hydrocortisone regularly, high fatigue levels in the afternoon and evening.May be related.  Who knows.  Feel very different, quite good, in the mornings.  

What bothered me the most about the endocrinologist was his unfamiliarity with the literature that shows some connection with thyroid in both directions.  He did not feel there was any importance for him to know what might be causing my condition.  I was frustrated by that and lost confidence in him, though perhaps the causality didn't matter for treatment.  

In the future, I would only see an endocrinologist who was vetted by an oncologist who would know which endocrinologists  were familiar with the potential of ipi being at the root of the problems.  I had never shown any sign of thyroid issues before so in my estimation it is most likely that my problems were a result of ipi.  

 I also think it is important to be measuring thyroid levels before and after the ipi therapy.  So do the oncological experts.  My oncologist obviously at tht time did not see the importance of that.  But I notice since all my problems measuing T4 and TSH is a standard part of my blood tests.

Hello Everyone,  I too was on IPI receiving 5 doses before my thyroid caught hell.  This they tell me this happens in 2% of the patients on IPI but I belive that number to be much higher.  I have a friend  a few miles from me that is stage 4 and had this reaction on one dose of IPI.  We are both currently on Hydrocortisone and will be on it forever.  This is a reaction to the IPI and I also have the fatigue mostly in the afternoons and stiff neck and other joint issues.   But I am NED for 15 months.  Best wishes to you all.

Hello Everyone,  I too was on IPI receiving 5 doses before my thyroid caught hell.  This they tell me this happens in 2% of the patients on IPI but I belive that number to be much higher.  I have a friend  a few miles from me that is stage 4 and had this reaction on one dose of IPI.  We are both currently on Hydrocortisone and will be on it forever.  This is a reaction to the IPI and I also have the fatigue mostly in the afternoons and stiff neck and other joint issues.   But I am NED for 15 months.  Best wishes to you all.

Hello Everyone,  I too was on IPI receiving 5 doses before my thyroid caught hell.  This they tell me this happens in 2% of the patients on IPI but I belive that number to be much higher.  I have a friend  a few miles from me that is stage 4 and had this reaction on one dose of IPI.  We are both currently on Hydrocortisone and will be on it forever.  This is a reaction to the IPI and I also have the fatigue mostly in the afternoons and stiff neck and other joint issues.   But I am NED for 15 months.  Best wishes to you all.

Ipi gave me hypothyroidism, hypophysitis, type 1 diabetes and an adrenal insufficiency. The hypophysitis resulted in my testosterone dropping to almost 0. Throughout it all though, my pituitary continued to produce TSH amazingly enough, but my thyroid (which may now be shot) didn't produce and thyroxine. When the thyroid is not producing enough thyroxine, the pituitary responds by secreting more TSH (thyroid stimulating hormone).

I second what other's have said about the need for a good endocrinologist. Even though mine does not specialize in cancer, she does work hand in hand with my oncologist.

– Paul

Ipi gave me hypothyroidism, hypophysitis, type 1 diabetes and an adrenal insufficiency. The hypophysitis resulted in my testosterone dropping to almost 0. Throughout it all though, my pituitary continued to produce TSH amazingly enough, but my thyroid (which may now be shot) didn't produce and thyroxine. When the thyroid is not producing enough thyroxine, the pituitary responds by secreting more TSH (thyroid stimulating hormone).

I second what other's have said about the need for a good endocrinologist. Even though mine does not specialize in cancer, she does work hand in hand with my oncologist.

– Paul

Ipi gave me hypothyroidism, hypophysitis, type 1 diabetes and an adrenal insufficiency. The hypophysitis resulted in my testosterone dropping to almost 0. Throughout it all though, my pituitary continued to produce TSH amazingly enough, but my thyroid (which may now be shot) didn't produce and thyroxine. When the thyroid is not producing enough thyroxine, the pituitary responds by secreting more TSH (thyroid stimulating hormone).

I second what other's have said about the need for a good endocrinologist. Even though mine does not specialize in cancer, she does work hand in hand with my oncologist.

– Paul