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Hypothyroidism and orgovyx.
This will be a long comment.
I am a 75 year old Vietnam veteran, served on 2 destroyers , assigned to the Naval Gunfire Support from 1971-73. One ship was shot at 3 times and twice hit with fragment hits (structural damage). I was ship sentry while on the gun line. I was a Union official for 25 years as one of the lead grievance and negotiating officers. I had many arguments and many "spirited discussions" with the company. In both positions I handled a lot of stress. I have stage 2 prostate cancer and finished 28 days of IMRT 2 months ago and I have been on orgovyx for 5 months. Halfway through the treatment I tried to tell the 3 female therapists how much I loved them and how much I loved the way they were taking care of me. I got about 7 words out and I just started crying. I couldn't believe it. One of the therapists came over, gave me a hug and comforted me. The crying had never happened before. I felt like a little boy. I finished my 28 day treatment, rang the bell and went to my truck and cried for 15 minutes. What was going on? I was 2nd guessing myself and I talked to my urologist and he told me that he would have said the same thing, that I spoke from my heart and it was the orgovyx. I was a real mess. I had bloodwork done the next day and my TSH jumped from 4 to 35. I googled the reason and I was taking orgovyx too close to taking levothyroxine. One is supposed to wait at least 6 hours between doses. Was not aware of that. So I separated by 10 hours, had my bloodwork and TSH back down to 5. I read if too close together my mood would be right through the roof and it was. It is not as bad now but with a high level of TSH it still bothers me. My PSA now is 0.25 and my testosterone is 11. At my last appointment i still could not talk to the therapists. That day was our 49th wedding anniversary and I had just found out my wife had uterine cancer. All 3 told me that they wanted to give me hugs and i wouldnt have traded those hugs for a million dollars. Has anyone had this experience with high TSH ?? Anyone with hypothyroidism taking orgovyx?? Anyone taking levothyroxine? I have a very hard time trying to be nice to myself and my wife is waiting to start chemo. We both feel like the pinball trying to listen to the other ones problems. I know what I'm supposed to be doing, to be kind to myself, its just that I'm harder on myself than I should be. I should treat myself like I would treat a friend who has cancer. I shouldn't compare myself to that Navy guy or to the Union official. Its just so hard and there is no switch to to flip. I get sad and think of those therapists and how much empathy they all had for me and I can't have that same empathy for my own self. The first of next month I will stop orgovyx and wonder how soon my sadness will go away. It takes so long to get in to see a counselor and I'm not sure what they can tell me that I'm not trying. I did find out that I had as much percent chance of being angry and irritated as sad. I regret the way I acted in front of the female therapists and tried to tell them that's not the real me but I suppose they've heard that line before and that makes me more sad. Any helpful comments or suggestions would be helpful. Sorry for this long comment, I want you to know where I've been.
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I take Levothyroxine daily, first thing when getting up. I‘ve finished Orgovyx for now, but I found taking it at night helpful. Emotional, absolutely. I’m 2 months off Orgovyx and beginning to feel more normal. All the best! Praying for the success of both your and your wife‘s treatments.
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1 Reaction@jime51 I take levothyroxine first thing in the morning also and then 1 hour later I have coffee and then later take the rest of my meds. I started taking orgovyx at bedtime but had hot flashes so switch to taking it with the rest of my meds an hour or so after levothyroxine. Then about halfway through my 28 day treatment is when it really hit me when I went to tell the girls how much I appreciated them. The rest you know. Had I known. My TSH is moderately high at 5.5 and my dose is 112. Too strong a dose gives me heart palpitations. Thank you for the info. First comment about levothyroxine. And thank you for the prayers. We are struggling as you can guess. You can read my comments to "gently.".
@northoftheborder
I love the compassion and encouragement articulated in these replies. We, including spouses, are all so emotionally vulnerable as a result of our PC diagnoses and the struggles that ensue. Having courage and being a part of this community brings me hope. Thanks, northoftheborder and all of who have so thoughtfully responded to this post.
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1 Reaction@corin I agree 100%. We ALL are the main part. I saw a post somewhere that we are the "foot soldiers" and hopefully the doctors and urologists pay attention.to us and pay less attention to charts and graphs. Everyone has a slightly different.problem. Thank you for reading all comments.
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2 Reactions@corin When I started this post I never dreamed that there would be this much on going discussion. There is a need for this togetherness. I wish that we were in a room together.
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1 ReactionYes, I sometimes wish this forum were a group of people (patients and spouses) meeting around the big table in my local coffee shop. I think we'd have a great time. ❤️
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1 Reaction@northoftheborder I would really love that.😍😍
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1 Reaction@possum1969
I couldn’t agree more.
I'm glad to have read your post. I found this paper: "8208 Unexpected and significant rise in TSH in the setting of Relugolix use" https://pmc.ncbi.nlm.nih.gov/articles/PMC11453257/
Relugolix is another name for Orgovyx.
I also take these two drugs. No one told me there might be any sort of problem. I happen to usually take the levothyroxin early in the morning, typically around 5 a.m., whereas I take the Orgovyx around 1 - 2 p.m. I'll make sure to keep them separated in time like this.
I was warned by my primary care doctor many years ago to take the levothyroxin then wait an hour before having any food.
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1 Reaction@climateguy Thank you for your comment. The case you mentioned is the case I brought up to my oncology doctor and he sorta brushed me off by saying if the timing was a problem my T4 would have lowered. I didn't want to get into a boxing contest with him and seemed eager to release me back to my urologist. The nurse told me she had not heard of this with orgovyx and the thyroid medicine. . I went to my lab results and my T4 DID lower and I asked my primary doctor how certain was she that the timing of the orgovyx caused the huge spike in TSH and she replied "very certain." Our problem up here is that our main hospital went under the "umbrella" of a huge corporate hospital and many primary doctors did not. Some reasons for some doctors for not by going under the huge hospital was their staff would be reduced, they would be required to see a certain amount of patients per day and they would only have 15 minutes for an office visit. My urlologist told them to pound salt and that he would go independent. They were upset at him for not sending more prostate cancer patients over to radiation. He told them that that not every prostate cancer needs radiation or an operation right away. The huge hospital fired 30 employees that handled billing and scheduling and replaced them with contractors. The headline in the paper was " 30 employees were laid off and escorted out the door." I was a Union official for 22 years and nobody that gets laid off is "escorted out the door". When one is escorted out the door, that's called termination. They are not coming back. The scheduling is all messed up around here. They schedule people at same time or not at all. I'm getting off subject however I thank you again for reading my comment and wish you and your family well.
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