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Apathy Syndrome and Pituitary microadenoma??
I just found this article from The Journal of Neuropsychiatry & Clinical Neurosciences and was wondering if you could comment on the last part of it, which I have asterics in front of;
Although the majority of pituitary adenomas are benign, the physical, emotional, and cognitive changes that these patients experience on their well-being is malignant. Pituitary disease causes a variety of physical illnesses resulting from the alterations in the hypothalamic-pituitary-end organ axis. In addition, patients with pituitary diseases may experience many emotional problems, including depression, anxiety, behavioral disturbances, and personality changes, above and beyond the many reactions these patients may have to the myriad of adjustments that they must make in their lives. There is a growing understanding that pituitary patients may experience these emotional problems as a result of long-term effects that the pituitary tumor itself, treatment, and/or hormonal changes have on the hypothalamic-pituitary-end organ axis.
********** The authors present a series of cases, in which patients with pituitary disease were diagnosed and treated for depression and showed little response to the treatment for depression. When the diagnosis of apathy syndrome was considered and treatment implemented, the patients’ condition improved. A review of the literature on apathy, hypothalamic-pituitary-end organ axis dysfunction, and treatment for apathy syndrome is included.
I have been on between 35 - 40 anti-depressants and anti-anxiety medications with very, very little help to none whatsoever. I'm curious about this Apathy Syndrome and how they might treat it differently. I'm at the point where it is definately worth looking at. My pituitary microadenoma is only 4mm and located on the right side. Over the past couple months I have had increasing numbness and tingling on the left side of my head, light headed feelings and sometimes the left side of my head will go completely numb. I was seen at the Mayo Clinic almost two years ago and they told me they were 100% positive my pituitary microadenoma was not causing me any problems and my symptoms were not related to it at all. At the time I saw them I was seeing two spots almost constantly out of my right eye, insomnia (which has now become constant fatigue), depression, anxiety, erection problems, shaking, shaking during sex, a feeling of being off balance, uncordinated, severe headaches, severe pain behind and above both my eyes and in the middle of my forehead. My eyes feel as if though something is trying to push them out. When I become fatigued my top left eyelid droops, my night vision has become horrific and many other problems.
Although the majority of pituitary adenomas are benign, the physical, emotional, and cognitive changes that these patients experience on their well-being is malignant. Pituitary disease causes a variety of physical illnesses resulting from the alterations in the hypothalamic-pituitary-end organ axis. In addition, patients with pituitary diseases may experience many emotional problems, including depression, anxiety, behavioral disturbances, and personality changes, above and beyond the many reactions these patients may have to the myriad of adjustments that they must make in their lives. There is a growing understanding that pituitary patients may experience these emotional problems as a result of long-term effects that the pituitary tumor itself, treatment, and/or hormonal changes have on the hypothalamic-pituitary-end organ axis.
********** The authors present a series of cases, in which patients with pituitary disease were diagnosed and treated for depression and showed little response to the treatment for depression. When the diagnosis of apathy syndrome was considered and treatment implemented, the patients’ condition improved. A review of the literature on apathy, hypothalamic-pituitary-end organ axis dysfunction, and treatment for apathy syndrome is included.
I have been on between 35 - 40 anti-depressants and anti-anxiety medications with very, very little help to none whatsoever. I'm curious about this Apathy Syndrome and how they might treat it differently. I'm at the point where it is definately worth looking at. My pituitary microadenoma is only 4mm and located on the right side. Over the past couple months I have had increasing numbness and tingling on the left side of my head, light headed feelings and sometimes the left side of my head will go completely numb. I was seen at the Mayo Clinic almost two years ago and they told me they were 100% positive my pituitary microadenoma was not causing me any problems and my symptoms were not related to it at all. At the time I saw them I was seeing two spots almost constantly out of my right eye, insomnia (which has now become constant fatigue), depression, anxiety, erection problems, shaking, shaking during sex, a feeling of being off balance, uncordinated, severe headaches, severe pain behind and above both my eyes and in the middle of my forehead. My eyes feel as if though something is trying to push them out. When I become fatigued my top left eyelid droops, my night vision has become horrific and many other problems.
Sorry for both your injured brains.
Re growth hormone - there are some brands that will offer plans that pay for a lot of it so if you qualify, they give you a lot for free. It really really makes a difference. My bones improved a LOT after I got back on it - I had to go off after my hyst messed up my levels. My doc participates in a lot of studies and there are bridge programs and things - so prices are dropping. My insurance has me on a cheaper on and it is a battle (like currently I can only get a 20!!! day supply so my co-pays bite but the difference off vs on... I have to do it).
He has zero gland? So he must be panhypopit like me... I don't trust *fine* - those words send shivers down my spine. Too much cortisol replacement at the wrong time can eat up his bones - is he on a short acting replacement like cortef/hydrocortisone or long acting like pred or dex?
I am disabled from my pit tumor - it is a rough road... and my hubster can note things about me that I don't pick up as I tend to get more confused as my hormones get off. It is important that he has a good neuro-endo, but even mine who is good, you have to be very pro-active at putting things in front of him as you only have so much time in this time of 2 minute appts.
Re growth hormone - there are some brands that will offer plans that pay for a lot of it so if you qualify, they give you a lot for free. It really really makes a difference. My bones improved a LOT after I got back on it - I had to go off after my hyst messed up my levels. My doc participates in a lot of studies and there are bridge programs and things - so prices are dropping. My insurance has me on a cheaper on and it is a battle (like currently I can only get a 20!!! day supply so my co-pays bite but the difference off vs on... I have to do it).
He has zero gland? So he must be panhypopit like me... I don't trust *fine* - those words send shivers down my spine. Too much cortisol replacement at the wrong time can eat up his bones - is he on a short acting replacement like cortef/hydrocortisone or long acting like pred or dex?
I am disabled from my pit tumor - it is a rough road... and my hubster can note things about me that I don't pick up as I tend to get more confused as my hormones get off. It is important that he has a good neuro-endo, but even mine who is good, you have to be very pro-active at putting things in front of him as you only have so much time in this time of 2 minute appts.
Thank you for your prompt reply (and very sorry for your numerous health problems).
My DH has no pituitary gland--the NS said "it looked like balsa wood". He is on 4 hormones, but not growth hormone (which he declined due to cost). He takes his hormones & makes all his appointments faithfully. He never complains and is able to work as a computer programmer.
The most recent MRI was December. He had neurocog. testing in Jan., which showed some deficits--which they werent concerned about. the most recent blood panel was last month. He sneaked off to the endocrinologist w/o me, because he knew I would tell her my observations/opinions. To her credit, she was very concerned about the broken bones.
I will have to look up his information; he seemed to be in good hands, and we were told that he would be fine. "Fine" is not exactly *healthy*.
(as an aside, I have been disabled myself for 16 years, until I received an accurate Dx a yr. ago & had brain surgery last summer. I found this site from being a member of the Chiari Malformation community. so we both have injured brains!).
My DH has no pituitary gland--the NS said "it looked like balsa wood". He is on 4 hormones, but not growth hormone (which he declined due to cost). He takes his hormones & makes all his appointments faithfully. He never complains and is able to work as a computer programmer.
The most recent MRI was December. He had neurocog. testing in Jan., which showed some deficits--which they werent concerned about. the most recent blood panel was last month. He sneaked off to the endocrinologist w/o me, because he knew I would tell her my observations/opinions. To her credit, she was very concerned about the broken bones.
I will have to look up his information; he seemed to be in good hands, and we were told that he would be fine. "Fine" is not exactly *healthy*.
(as an aside, I have been disabled myself for 16 years, until I received an accurate Dx a yr. ago & had brain surgery last summer. I found this site from being a member of the Chiari Malformation community. so we both have injured brains!).
If your hubs had radiation - his pituitary could be slowing dying. If he is not on replacements, his hormones could be seriously off - and that could account for the *off* parts of his personality - as well as his bones, healing etc.
His testing - are they doing the tests at 8am, fasting? Are they doing full panels - what exactly are they testing? I can look wonderful on some panels but I am far from fine - I am panhypopit! Is the doc testing growth hormone - all the thyroids as the doc would expect TSH to be low post op but what about the Free forms?
You don't have to accept this decline - you do have to get copies and ask questions about exactly what his levels are.
I am on growth hormone to raise my bone levels - plus my muscles decline too - it could be cortisol or any number of hormones, even testosterone that is off. When was his last MRI? What was his tumor type?
His testing - are they doing the tests at 8am, fasting? Are they doing full panels - what exactly are they testing? I can look wonderful on some panels but I am far from fine - I am panhypopit! Is the doc testing growth hormone - all the thyroids as the doc would expect TSH to be low post op but what about the Free forms?
You don't have to accept this decline - you do have to get copies and ask questions about exactly what his levels are.
I am on growth hormone to raise my bone levels - plus my muscles decline too - it could be cortisol or any number of hormones, even testosterone that is off. When was his last MRI? What was his tumor type?
I have searched for & found this site because my husband had a pit. tumor 8 yrs. ago (surgery + radiation). Because he takes very good care of himself and has no underlying conditions, his recovery has been excellent; his NS considers him his "star patient".
BUT, slowly over the years, and now quickly, I see major cognitive deficits. Not memory as much as auditory processing (he claims he can't understand my "accent"--after 15 yrs. of marriage?!), and lack of some logical reasoning (not finding a product in a store, then going back to the SAME store).
I am very frustrated because all the docs say he is "fine"; after all, the tests show it! They were very dismissive of me; what do I know, I am only the spouse. He is only 60 but acts like he is 80. He is apathetic & reclusive. Do I really have to accept this decline?!!
Oh, he had broken both bones in 1 leg last fall--which took twice as long to heal--and he refused to have a 5 min. bone density test, until 4 months later at "a regularly scheduled dr.appointment". (Just that stubbornness alone is unlike him.) Apparently low bone density could also occur with no pituitary gland, something else we were not fore-warned about. Either these docs don't know any better, or have deliberately withheld information from us.
Any advice would be greatly appreciated, thanks!
BUT, slowly over the years, and now quickly, I see major cognitive deficits. Not memory as much as auditory processing (he claims he can't understand my "accent"--after 15 yrs. of marriage?!), and lack of some logical reasoning (not finding a product in a store, then going back to the SAME store).
I am very frustrated because all the docs say he is "fine"; after all, the tests show it! They were very dismissive of me; what do I know, I am only the spouse. He is only 60 but acts like he is 80. He is apathetic & reclusive. Do I really have to accept this decline?!!
Oh, he had broken both bones in 1 leg last fall--which took twice as long to heal--and he refused to have a 5 min. bone density test, until 4 months later at "a regularly scheduled dr.appointment". (Just that stubbornness alone is unlike him.) Apparently low bone density could also occur with no pituitary gland, something else we were not fore-warned about. Either these docs don't know any better, or have deliberately withheld information from us.
Any advice would be greatly appreciated, thanks!
I do hope that you find a neuro-endo at a pituitary center to help your husband. If your current endo is one, find another.
The pituitary tumor and the hormones have to be balanced to get the emotional health under control. I assume he has a prolactinoma given the treatment and having had one of them (had both a prolactinonoma and Cushing's) I know it made me crazy and I could know it, but not control it.
If he has lost vision, then he must be on medication - he can try parlodel and see if he does better on that - or he has to have surgery. It cannot be left as is.
His doctor is not skilled at all if the symptoms are not tied back to the tumor - but that is sadly common. He needs treatment for the tumor. Check out the health pages and get more information.
The pituitary tumor and the hormones have to be balanced to get the emotional health under control. I assume he has a prolactinoma given the treatment and having had one of them (had both a prolactinonoma and Cushing's) I know it made me crazy and I could know it, but not control it.
If he has lost vision, then he must be on medication - he can try parlodel and see if he does better on that - or he has to have surgery. It cannot be left as is.
His doctor is not skilled at all if the symptoms are not tied back to the tumor - but that is sadly common. He needs treatment for the tumor. Check out the health pages and get more information.
In Dec. 2012 my husband was diagnosed with a pituitary microadenoma to which they started treating with cabergoline, which has caused such severe side effects that he had to stop taking it. He was fired from his job after many years of service there because of lack of control of his emotions. He has been thrown into a world of instability and many questions. He has no motivation, is irritable and at times hard to live with. He is not the man I married and have known for over 41 years. He is very depressed and complains of a constant headache and lethargy and loss of peripheral vision and inability to focus at times. He has stopped riding his bike because he feels unstable while riding. He tried many antidepressants and they all caused severe side effects and did not help his depression. The endocrinologist he first saw did not seem to think these symptoms should be of much significance. We are changing doctors hoping for someone who will be able to answer some of these concerns. This is certainly turning our lives upside down.
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