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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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Sorry to hear you and wife are going through this. It doesn't seem fair and no one knows why this happens. Wishing your wife and you the best. Hope you both feel better soon.
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1 ReactionPossum1969, you basically took yourself off levothyroxine and testosterone at the same time. Chemical disaster for your poor brain. When you've been off the orgovyx for a while, you'll recognize yourself again.
I'm curious. Do you think you would have had the wildly wonderful experience with the therapists without becoming that little boy. I suspect the experience will survive manhood and will it have change you in some way.
For now don't even think about yourself. Focus on that wife of 49 years. Court her like a teenager. Remember all the things she likes and used to like.
Those therapists understood everything you are/were going through. Thanks for telling about their goodness and your vulnerability. It's a wonderful tale more so without resolution.
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1 Reactionyes ADT makes you a bit emotional at times. no question. when you artificially adjust hormones- turn them off or turn them on, you will get emotional responses of varying degrees. For example, it well documented that weight lifters/ athletes who juice on testostrone and steroid compounds exhibit varying degrees of aggressive behavior, ie, 'roid rage'. I have seen it at the gym I go to..a few guys getting too aggressive..talking big and loud. Conversely, with ADT, testostrone suppression causes men to become less aggressive and more emotional with tears welling up more easily, not to mention the fact that PC diagnosis and treatment are very stressful in their own right.
Bottom line, I wouldnt be alarmed by much of what you do say or think while in treatment mode. It is a hard time for most..tears and fears and other feelings come and go. Its part of being alive and astute, thoughtful people see the struggle and feel compassion while immature pricks see weakness..one day they may look back and understand all too well that cancer can push you to you limits and beyond. It is a relentless foe.
yes ADT makes you a bit emotional at times. no question. when you artificially adjust hormones- turn them off or turn them on, you will get emotional responses of varying degrees. For example, it well documented that weight lifters/ athletes who juice on testostrone and steroid compounds exhibit varying degrees of aggressive behavior, ie, 'roid rage'. I have seen it at the gym I go to..a few guys getting too aggressive..talking big and loud. Conversely, with ADT, testostrone suppression causes men to become less aggressive and more emotional with tears welling up more easily, not to mention the fact that PC diagnosis and treatment are very stressful in their own right.
Bottom line, I wouldnt be alarmed by much of what you do say or think while in treatment mode. It is a hard time for most..tears and fears and other feelings come and go. Its part of being aliveAstute thoughtful people see the struggle and feel compassion while immature pricks see weakness..one day they may look back and understand all too well that cancer can push you to you limits and then some. It is a relentless foe. PS. good luck to you and your wife !
As you discovered, emotional distress has nothing to do with being strong or weak. Your military service shows that you're brave, but bravery can't counteract chemical changes in your brain. I'm glad that you decided to share (another act of courage), and hope you continue to get the support you need. We're all on your team.
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3 ReactionsYour interaction with the “3 female therapists” was due to your low testosterone caused by the Orgovyx. “Male menopause” is what they call it. (Your doctor should have explained the side-effects to you well before you started the androgen deprivation therapy.)
Many men experience side-effects to varying degrees — some more, some less —> mood swings, emotions, anger, irritability, confusion, fatigue, loss of libido, hot flashes, night sweats, muscle atrophy, loss of strength, and weight gain; sometimes memory loss, forgetfulness, depression, ED, and more….
These menopausal-like side-effects will be greatly minimized/avoided if you engage in a rigorous load-bearing exercise program (resistance-training, weightlifting, TRX, your own bodyweight, etc.) to offset the metabolic side-effects of ADT. (I avoided most of the typical ADT side-effects; the ones that I did experience were quite tolerable.)
Also, your doctor should have discussed with you any possible drug interactions (levothyroxine in this case).
Were you engaging in a rigorous resistance-training exercise program prior to starting Orgovyx?
Most side-effects of ADT are easily minimized/avoided with resistance-training exercise. Here are just a few that I’ve bookmarked:
> Drs. Scholz and Moyad talking about exercise and hormone therapy (at a virtual PCRI conference): https://m.youtube.com/watch
> A paper on The Benefits of Exercise During Hormone Therapy: https://static1.squarespace.com/static/54c68ac6e4b06d2e36a4b8c9/t/55cb7275e4b0d97ae7ff60af/1439396469154/The+Benefits+of+Exercise+During+Hormone+Therapy_Insights+August+2015_PCRI.pdf
> A study about the benefits of exercise to counteract the adverse effects of ADT: (They describe a good resistance-training program): https://journals.lww.com/acsm-msse/fulltext/2023/04000/resistance_exercise_training_increases_muscle_mass.2.aspx
If you do what it takes, you’ll do very well with the hormone therapy side-effects - it’ll just be an annoyance.
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3 Reactions@copyman Thank you. We'll make it and have our day.
@brianjarvis Thank you for your comments. Yes the doctors should have and no they didn't. By doctors I mean the urologist and cancer doctor. When I mentioned that I had looked up the TSH being so high because of orgovyx taken so close to levothyroxine, he sorta brushed me off and said that if that was the case then my T4 would have dropped. When I asked my primary doctor if she thought the combination being so close together caused the spike she said that she was certain that was the case. Only 2 cases that I could find on this issue. Probably being orgovyx being a fairly new drug. I only googled orgovyx, not any ADT. I don't want to get into a boxing match with the doctors. Thank you again.
@northoftheborder Thank you. I should have reached out to all of you sooner but thought I could beat it. I didn't expect this many comments. All are helpful.
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1 Reaction@xahnegrey40 Thank you. My wife's doctor told her that cancer is 2 diseases, physical and mental. We'll make it.
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