Pituitary macroadenoma: Is anyone familiar with Apathy Syndrome?

Posted by medfordor @medfordor, Sep 14, 2020

I had a pituitary macro adenoma removed 10 years ago and I have developed a severe case of apathy, both in my personal and professional life. I cannot focus or concentrate at work and I have not motivation to either work or pursue my former leisure interests. I have seen some studies on this, but never met anyone that knows anything about it.

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@rbraley

My pituitary adinoma surgery was Nov 93. I have recently in the last couple years been noticing a decline in interest to do things. I have sought medical help and they treated me for depression. Now that i have begun to learn more about apathy and the pituitary, i feel like that is closer to what I am experiencing. Is there any testing i can do to be certain and what are the treatments for apathy?

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Hi Rbraley, prompted by your post, I did a little digging and found this article
– Apathy Is Not Depression https://neuro.psychiatryonline.org/doi/full/10.1176/jnp.10.3.314
Some key points in the article that struck me are:
"…apathy and depression are clinically distinct neuropsychiatric syndromes"
"Apathy is defined as diminished motivation not attributable to decreased level of consciousness, cognitive impairment, or emotional distress. Depression involves considerable emotional distress, evidenced by tearfulness, sadness, anxiety, agitation, insomnia, anorexia, feelings of worthlessness and hopelessness, and recurrent thoughts of death."

In the article, the authors mention the Apathy Evaluation Scale. Here's a link to more information.
– Clinical Utility and Psychometric Properties of the Apathy Evaluation Scale https://psycnet.apa.org/fulltext/2020-59952-004.html

@jrlynch @limorris @medfordor @rbraley, have any of your doctors talked about apathy evaluation with you?

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Living with Panhypopituitary (no pituitary function) and Apathy
My pituitary function is gone due to a macro-adenoma. I had transsphenoidal surgery for removal in 2013. I am on various hormone supplements and am steroid dependent. Getting full treatments has been an ongoing journey. I feel pretty good physically, but cannot get past the feeling of apathy. I am Not Depressed! I don’t feel hopeless, or sad and I have a loving and caring spouse. But, I have changed. I was outgoing, had lots of friends, many interests and kept busy, busy, busy! (My profession was an Activity Director!) have dropped so many interests, my creativity is all but gone and the worst, is that I have become detached from relationships. It makes me so sad because I am a shell of the person I was and I don’t know how to fix it.

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@barbiejk

Living with Panhypopituitary (no pituitary function) and Apathy
My pituitary function is gone due to a macro-adenoma. I had transsphenoidal surgery for removal in 2013. I am on various hormone supplements and am steroid dependent. Getting full treatments has been an ongoing journey. I feel pretty good physically, but cannot get past the feeling of apathy. I am Not Depressed! I don’t feel hopeless, or sad and I have a loving and caring spouse. But, I have changed. I was outgoing, had lots of friends, many interests and kept busy, busy, busy! (My profession was an Activity Director!) have dropped so many interests, my creativity is all but gone and the worst, is that I have become detached from relationships. It makes me so sad because I am a shell of the person I was and I don’t know how to fix it.

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I feel exactly the same. I was full of life and now a empty shell

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@barbiejk

Living with Panhypopituitary (no pituitary function) and Apathy
My pituitary function is gone due to a macro-adenoma. I had transsphenoidal surgery for removal in 2013. I am on various hormone supplements and am steroid dependent. Getting full treatments has been an ongoing journey. I feel pretty good physically, but cannot get past the feeling of apathy. I am Not Depressed! I don’t feel hopeless, or sad and I have a loving and caring spouse. But, I have changed. I was outgoing, had lots of friends, many interests and kept busy, busy, busy! (My profession was an Activity Director!) have dropped so many interests, my creativity is all but gone and the worst, is that I have become detached from relationships. It makes me so sad because I am a shell of the person I was and I don’t know how to fix it.

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Hi @barbiejk and @cheryl1, fellow member @medfordor asked a similar question looking to connect with other who are dealing with apathy syndrome due to brain tumor surgery.

I moved your posts to join this discussion group along with @limorris @jrlynch and @rbraley:
– Pituitary macroadenoma: Is anyone familiar with Apathy Syndrome? https://connect.mayoclinic.org/discussion/is-anyone-familiar-with-apathy-syndrome/

You both mention that you feel you've become an empty shell of the person you once were. Have either of you been offered therapy or medication that might help?

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I’ve had surgery and follow-up gamma knife for a macro-adenoma as well, resulting in panhypopituary (no pituitary function). Although I am supplemented for various deficiencies, I have the SAME issues!! I have joined a fb group called Panhypopituitary and the issue of Pituitary Apathy has been brought up by a few people, and there are also scholarly issues written about it. It can mimic Depression but is not depression and is not treated the same. I don’t have clinical symptoms of depression but have withdrawn in so many areas of my life, including relationships with my children, and various interests that were dear to me. It is my understanding that this issue needs to be addressed by a psychiatrist and the drug choices are not the same used in treating depression. I am older and have retired from a job I loved, because I felt that I’ve lost the ability to do the job physically and mentally. So, I am hearing you loudly and clearly. I am going to seek the help of a psychiatrist. PHP is a rare condition, so not all doctors are trained in treatment. Do your homework ahead of time so when you see the doctor you come prepared with the medical information needed. I wish you the best of luck. Please keep us posted on your progress.

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@colleenyoung

Hi @jrlynch, do you suspect that you may have apathy syndrome?

@limorris, what type of brain tumor did you have? How do you manage the side effect of apathy?

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Hi Colleen, I’m so sorry for the overdue response to your questions. I was not in a good environnement when I was approached about my experiences. I couldn’t see myself adding something else but that is all in the process of being resolved. I can only move forward and hopefully make an impact for those who had approached me and for future patients with struggles.
I had a pituitary adenoma diagnosed in 2000, 2 years post partum. It was a growth hormone secreting adenoma, causing acromegaly. It required 4 surgeries due to it’s location, sitting against my carotid artery so they couldn’t remove it. Simply scrape it as they would say. Finally, it 2011, it was small enough that radiation was able to eradicate it. I’m still monitored closely by the Pituitary Clinic in Halifax Nova Scotia in Canada. Last tests this past Summer were still all clear. It’s been a year that I’m free of all meds to control my growth hormone levels 🙏🏼

The psychological issues associated with this, as you all know, are something else. Not much was known about it back then.
It took years for me to want to become my own advocate. This gentleman from the US had seen one of my posts about apathy and he said his life changed when he started taking Ritalin under his doctor’s care of course.
This is where I decided to do some research. I came across an article in the New England Journal of Medecine, I believe from 2005, it discussed apathy and CHRONIC FATIGUE syndrome. I thought to myself, that so describes me! I continued reading about the use of stimulants to treat this condition.
I approached my GP yes, my GP, sending her this medically supported research and treatment.
I told her that I wanted to come off my antidepressants cause I really didn’t think I was depressed, what I was experiencing was felt like something else but can be mistaken for depression.
I said that I wanted to start treatment with a stimulant, thankfully she was open to my suggestion. She explained that Ritalin was not the best in my case but Vyvance would be more effective with my symptoms. This took place over a period of 2-3 months. ** Please know that you can’t come off antidepressants all of a sudden, dose has to be lowered slowly under doctor’s surveillance. Only then, was Vyvance initiated, again, small doses and very gradually. FYI, even though I’m an RN, I know better not to attempt this on my own.

Once on right dose, the difference in my energy level, motivation and even focus was unbelievable. I no longer needed daily 2-3 hour naps even though I slept well all night. That was something that I had mentioned to my GP that I was sleeping my life away.

All I can say is I wish I would’ve had this 20 years ago, especially when I was a new mom and working. Looking back, I don’t know how I did it.
All I can say, is this changed my life and if it can offer you any hope, that would make it all worthwhile ☺️

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@limorris

Hi Colleen, I’m so sorry for the overdue response to your questions. I was not in a good environnement when I was approached about my experiences. I couldn’t see myself adding something else but that is all in the process of being resolved. I can only move forward and hopefully make an impact for those who had approached me and for future patients with struggles.
I had a pituitary adenoma diagnosed in 2000, 2 years post partum. It was a growth hormone secreting adenoma, causing acromegaly. It required 4 surgeries due to it’s location, sitting against my carotid artery so they couldn’t remove it. Simply scrape it as they would say. Finally, it 2011, it was small enough that radiation was able to eradicate it. I’m still monitored closely by the Pituitary Clinic in Halifax Nova Scotia in Canada. Last tests this past Summer were still all clear. It’s been a year that I’m free of all meds to control my growth hormone levels 🙏🏼

The psychological issues associated with this, as you all know, are something else. Not much was known about it back then.
It took years for me to want to become my own advocate. This gentleman from the US had seen one of my posts about apathy and he said his life changed when he started taking Ritalin under his doctor’s care of course.
This is where I decided to do some research. I came across an article in the New England Journal of Medecine, I believe from 2005, it discussed apathy and CHRONIC FATIGUE syndrome. I thought to myself, that so describes me! I continued reading about the use of stimulants to treat this condition.
I approached my GP yes, my GP, sending her this medically supported research and treatment.
I told her that I wanted to come off my antidepressants cause I really didn’t think I was depressed, what I was experiencing was felt like something else but can be mistaken for depression.
I said that I wanted to start treatment with a stimulant, thankfully she was open to my suggestion. She explained that Ritalin was not the best in my case but Vyvance would be more effective with my symptoms. This took place over a period of 2-3 months. ** Please know that you can’t come off antidepressants all of a sudden, dose has to be lowered slowly under doctor’s surveillance. Only then, was Vyvance initiated, again, small doses and very gradually. FYI, even though I’m an RN, I know better not to attempt this on my own.

Once on right dose, the difference in my energy level, motivation and even focus was unbelievable. I no longer needed daily 2-3 hour naps even though I slept well all night. That was something that I had mentioned to my GP that I was sleeping my life away.

All I can say is I wish I would’ve had this 20 years ago, especially when I was a new mom and working. Looking back, I don’t know how I did it.
All I can say, is this changed my life and if it can offer you any hope, that would make it all worthwhile ☺️

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@limorris, I'm so grateful that you returned when you were able. This post offers so much hope and help for others. Thank you!

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