1. < Blood Cancers & Disorders

I’ve had essential thrombocythaemia for 23 years now,and thyroid issue

Posted by romanjay26 @romanjay26, Jun 8 11:27am

I’ve had this disease for 23 years now,have taken Anagrelide,hydroxides,but now I’m injecting with Peg-interferon 90mcg weekly and it’s keeping my platelets stable,over the last 4 months I’ve been poorly my thyroid started to change and I’ve been put up to 200mg a day from 125 about 8 weeks ago,my doctor said it was stable,but my oncologist has just sent me a letter to inform me that it is very deranged,my bowel is also inflamed and I’ve been losing blood,also lost nearly 2 stone in a matter of 8 weeks,any advice

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Mentor
Lori, Volunteer Mentor | @loribmt | Jun 8 12:15pm

Welcome to Connect @romanjay26. You’ve been taking Anagrelide and/or hydroxides for 23 years for your ET. Those are very standard medications for treating the over production of platelets. Were you switched from either of those medications to the Peg-interferon to control the platelets instead?
Were the treatments no longer working for you? Is this when your thyroid started to change or have you had thyroid issues for a number of years?

I’m a little confused by what you mean about increasing another medication from 125mg to 200mg daily. Is this a thyroid medication that you’re taking as well as the Pegasys interferon?
According to information on the Pagasys site, it states that: “ Pegasys (peginterferon alfa-2a) can cause or worsen diabetes and thyroid problems.”. So this may be why your thyroid levels may be ‘deranged’. That’s such an interesting term…one not used in the States. I’m not sure what that really means but sounds as though it warrants investigation!

Losing weight so abruptly, with blood loss and bowel inflammation must be very worrisome for you. Have you brought these symptoms to the attention of your oncologist or primary care physician?

REPLY
1 reply
romanjay26 | @romanjay26 | Jun 9 6:54am
In reply to @loribmt "Welcome to Connect @romanjay26. You’ve been taking Anagrelide and/or hydroxides for 23 years for your ET...." + (show)
@loribmt

Welcome to Connect @romanjay26. You’ve been taking Anagrelide and/or hydroxides for 23 years for your ET. Those are very standard medications for treating the over production of platelets. Were you switched from either of those medications to the Peg-interferon to control the platelets instead?
Were the treatments no longer working for you? Is this when your thyroid started to change or have you had thyroid issues for a number of years?

I’m a little confused by what you mean about increasing another medication from 125mg to 200mg daily. Is this a thyroid medication that you’re taking as well as the Pegasys interferon?
According to information on the Pagasys site, it states that: “ Pegasys (peginterferon alfa-2a) can cause or worsen diabetes and thyroid problems.”. So this may be why your thyroid levels may be ‘deranged’. That’s such an interesting term…one not used in the States. I’m not sure what that really means but sounds as though it warrants investigation!

Losing weight so abruptly, with blood loss and bowel inflammation must be very worrisome for you. Have you brought these symptoms to the attention of your oncologist or primary care physician?

Jump to this post

Sorry for late reply,just come home from vacation,I started on Anagrelide 20 years ago but it just didn’t agree with me,then I was put on hydroxides but I had read studies that taking this drug for a long period of time can put a strain on your bone marrow and there was more chance of getting Leukemia,I got thyroid issues about 10 years ago everything was fine until about 6 months ago,severe migraines,weigh loss,they said my thyroid was not functioning so I’ve had the dose increased from 125 to 200micrograms of levothyroxine,my GP told me it was stable,but my oncologist sent me a letter telling me it’s deranged,also on my holiday I noticed just below my breast line on either side I have what looks like purple bruising under my skin so I’m going to see my doctor I’m going to let them know about what you have said regarding the injections,they increased the dose about a year ago and I think that’s when I started having problems with my thyroid,Thankyou for your advice

REPLY
1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Jun 9 9:53am
In reply to @romanjay26 "Sorry for late reply,just come home from vacation,I started on Anagrelide 20 years ago but it..." + (show)
@romanjay26

Sorry for late reply,just come home from vacation,I started on Anagrelide 20 years ago but it just didn’t agree with me,then I was put on hydroxides but I had read studies that taking this drug for a long period of time can put a strain on your bone marrow and there was more chance of getting Leukemia,I got thyroid issues about 10 years ago everything was fine until about 6 months ago,severe migraines,weigh loss,they said my thyroid was not functioning so I’ve had the dose increased from 125 to 200micrograms of levothyroxine,my GP told me it was stable,but my oncologist sent me a letter telling me it’s deranged,also on my holiday I noticed just below my breast line on either side I have what looks like purple bruising under my skin so I’m going to see my doctor I’m going to let them know about what you have said regarding the injections,they increased the dose about a year ago and I think that’s when I started having problems with my thyroid,Thankyou for your advice

Jump to this post

Yes, I think that’s a very good idea to check back with your doctor about these new symptoms. If the Hydroxyurea you were taking for ET was working for you without any side effects you might want to consider returning to that medication. Many people have been on that drug for years because it works so well. The risk of developing leukemia is very low and the benefits of the drug outweigh those risks.

Something to consider. This switch to Peg-interferon may have brought on the increased issues with your thyroid and possibly causing some of your other symptoms as well, since they seem to have started with the change in meds. These symptoms are tangible and creating obvious issues, while the threat of leukemia from the hydroxy was only in the fine print and minimal at best. This would be a good discussion to have with your hematologist and your general practitioner.
I hope you were able to enjoy your vacation. ☺️ Will you let me know what you find out from your doctor, please?

REPLY
1 reply
romanjay26 | @romanjay26 | Jun 9 10:17am
In reply to @loribmt "Yes, I think that’s a very good idea to check back with your doctor about these..." + (show)
@loribmt

Yes, I think that’s a very good idea to check back with your doctor about these new symptoms. If the Hydroxyurea you were taking for ET was working for you without any side effects you might want to consider returning to that medication. Many people have been on that drug for years because it works so well. The risk of developing leukemia is very low and the benefits of the drug outweigh those risks.

Something to consider. This switch to Peg-interferon may have brought on the increased issues with your thyroid and possibly causing some of your other symptoms as well, since they seem to have started with the change in meds. These symptoms are tangible and creating obvious issues, while the threat of leukemia from the hydroxy was only in the fine print and minimal at best. This would be a good discussion to have with your hematologist and your general practitioner.
I hope you were able to enjoy your vacation. ☺️ Will you let me know what you find out from your doctor, please?

Jump to this post

Thankyou for your advice,I am ringing my oncologist tomorrow,vacation was great,need another I was with the grandchildren 😂

REPLY
1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Jun 9 11:45am
In reply to @romanjay26 "Thankyou for your advice,I am ringing my oncologist tomorrow,vacation was great,need another I was with the..." + (show)
@romanjay26

Thankyou for your advice,I am ringing my oncologist tomorrow,vacation was great,need another I was with the grandchildren 😂

Jump to this post

LOL. I get it! Grand kids will tucker you out in a hurry! 😉

REPLY
Please sign in or register to post a reply.