Although many advances have been made in the treatment of Pituitary Tumors physically, there have not been many studies on the emotional, psychological effects these tumors cause or the end results after removal and the disruption to the endocrine system that follows.
Only in the last decade has there been interest in how hormonal function or endocrine dysfunction effects psychiatric illness. The relationship of endocrine disease to psychological distress, despite all the research, is rarely mentioned in the literature of endocrinology. Endocrinology textbooks and journal reviews mostly ignore, or only incidentally mention the psychiatric effects of endocrine disorders.
More and more patients with pituitary disease are being evaluated and treated at cancer centers. In many ways, we resemble patients with other malignant brain tumors. Although the majority of pituitary adenomas are benign, the physical, emotional, and cognitive changes that we experience on our well-being is malignant. Those of us with endocrine disorders experience many emotional problems and personality changes, above and beyond the many adjustments that we must make in our lives.
There is a growing understanding that we may experience these emotional problems as a result of long-term effects that the pituitary tumor itself, the treatment, and the hormonal changes have on our pituitary release of hormones. Many patients have been treated for depression but showed no response. More recently, doctors have found that treatment for apathy syndrome has shown improvement in patients.
Changes to a persons behaviour can include:
- hostility and Anger
- depression
- apathy
- increased irritability
- anxiety and a decreased willingness to socialize
- emotional insecurity
- psychotic disturbances
- cognitive impairment including memory loss and concentration
- Mood changes
- loss of motivation and lack of energy and drive
- Insomnia and other sleep disorders
This all becomes very frustrating for us and we don’t always see the changes that others around us do because they come on very slowly. A depressed mood may have a large influence on our quality of life and on how we experience the endocrine disease process and our interactions with others. There have been studies that show a correlation between Pituitary Tumors and Suicide. Upon autopsy, pituitary tumors were found in 47.7% of the suicidal group, while in the nonsuicidal (accidental death) group showed only 18.3%. This is very significant.
People with pituitary disease experience many physical changes also. Our weight can undergo significant fluctuations as well as changes in our physical appearance. We may experience changes in our sexual and reproductive functioning, such as amenorrhea, impotence, and impaired orgasm. We may also develop medical illnesses such as diabetes, hypertension, and coronary artery disease just to name a few.
It’s natural for you and your family to have many questions throughout the diagnosis and treatment of a pituitary tumor. The process can be overwhelming — and frightening. That’s why it’s important to learn as much as you can about your condition. The more you and your family know and understand about each aspect of your care, the better. You might also find it helpful to share your feelings with others in similar situations. Check to see if support groups for people with pituitary tumors and their families are available in your area although there are certainly not enough. Hospitals often sponsor these groups. Your medical team also may be able to help you find the emotional support you might need.
Many of these symptoms I have been through, or are still fighting, so do not feel you are alone. You will find it hard to explain to others how you feel because your emotions and energy levels can change on a daily basis. The words that seem to come up in the studies are a lower “Quality of Life”. My life has certainly changed and there are, of course challenges, but I refuse to call it “Lower”. If anything, going through this has taught me many things about myself and what is important in my life. You will find who the people are that stick by your side and support you through it. There will also be those that don’t understand and chose avoidance or to leave. I have accepted the loss of some relationships and my marriage but will never really know or understand if the tumor was the cause or not.
I am seven months post op for removal after many, many years and still working towards the hormone balancing act. I still have many tests to go and for the rest of my life but working towards a better me each and every day. There is still a fire within me.
Lookingintothemuir 
Kevin is handling these life changing alterations very well and his mom and I are very proud of his progress.
Would this generally show up on an MRI? My dtr is 15 and fits several of these symptoms. We have tried everything. She has personality chamges at times but mot always. Many of her symptoms seem more than just depression/anxiety but go unexplained…..
90% of the time pit tumors can be found in MRI’S with contrast.
Hi Christy.
I have just found thisNone of the MRI’s w&w/o contrast, past or present, showed any of the pituitary tumors I had (2003 & 2017). They have a special pituitary panel they would run with the MRI. Ask your doctor to order it to get a quicker diagnosis and save money. Also, research endocrinologists (because of age you may need a pediatric endo) who treat endo disorders besides diabetes. This is VERY IMPORTANT! Do not be afraid to call and ask the office staff of that doctor specializes in treating diabetics only or does he/she treat other endocrine diseases. If so, which ones? This is why it is important……I had one wanting to put me on the thyroid schedule! I told her, for the second time, I am pituitary. She replied, same difference. In which my reply was, no it is not, and no need to put me on any schedule. Because of these questions, I found one of the best endocrinologists I have ever had.
If you need anything, I have been through years of this. Journey started when I was in 1997, when I was 19 and I was misdiagnosed for 7 years. Went to the Mayo Clinic in Rochester, MN in 2002 for final diagnosis of Cushings Disease and removal of pituitary microadenoma by Transsphenoidal surgery in 2003 and last year (2017) by craniotomy. Need anything, I’m here. Have any questions? Ask away. I hope all is well.
Great post Kevin. The symptom tree really is helpful to many of us that feel overwhelmed by this disease. Keep fighting!!
Hi, this link has helped me very much in understanding my condition. As I was very uncertain how my none functioning pituitary gland was affecting my life .I knew I had a tumour and it had to be removed but I have never had it explained to me in the way this link has .
My endo is very concerned about the emotional well being of his patients and has us complete a questionnaire about our level of fatigue, emotions and life changes prior to each visit. They offer support for depression at the hospital. You can also investigate support groups for people with brain tumors: http://www.braintumour.ca/621/care-and-support (Canada)
http://www.braintumor.org/ (American)
I ve just emailed this to my husband….maybe he might ‘get it’ now? So difficult to explain how I feel…but apathy is def one term I feel myself using a lot.
14 months post op macro adenoma. Awaiting date for 2nd surgery. Oh and I have Acromegaly too 😦
I understand how you feel. My wife gets so angry she spits in my face but there is no reason to be so angry. Her family blame me, it’s obviously something I’m doing to make her this way even tho she’s diagnosed.
Is there a help support you know of. I need something
The other day I scraped the walls with my nails!! I got so angry….Of course 1/2 an hour later my husband and I were laughing about how crazy that was. There was really no reason for me to get so angry but in the moment it just happened. I think your wife needs a lot of love and support right now.
You made me cry. I also had encephalitis after my second tumour removal, the tumour was pus filled. The infection went straight through my brain fluid. I have had ‘issues’ ever since. Thank heaven for a very supportive husband and two other pituitary friends. Sadly, family don’t have any understanding.
Thank you for such a concise explanation of how you feel and the clear decsription of how a pituitary tumor may affect you. It is like hearing exactly what my son has been saying for nearly two years. Many people just don’t understand the massive affect a pituitary tumor may have on a persons life. Initionaly, it was almost a relief when it was finally diagnosed – as he at last had been given a reason for the way he was feeling -then the enormity of what he was facing sank in. He’s fighting it hard, but it’s far from easy sometimes. He just wants to feel well/normal again.
Thank-you Mrs Vincent. There are many of us where thats all we want too. I for one dont want to accept the new normal so we have to challenge the medical system.
I have just now found all your experiences and knowledge. Thank you so much for sharing. I am struggling after my last surgery, which was last year (2017) and was a craniotomy. The tumor was more extensive than seen on the MRI and the surgeon had to make the cut a lot bigger than what we discussed. It had invaded my cavernous sinus, wrapped around my carotid artery and he actually had to lift my optic chiasm to clean out under it, leaving me partially blind in my right eye. There are many struggles. Some of them are hard to voice out loud, but even though I hate to know someone else is suffering, it helps to read them in print. I am looking forward to reading more.
I hope things are getting better for you. I am here for you as well. We have to stick together, help and encourage each other!
Thank you and yes I am doing a lot better. Took time and a lot of work with my endocrinologist to Optimize hormone replacement. Lots of education for myself and understanding of how I feel.
Hello, I work in a special education class with a 10 year old boy. He is autistic and has the symptoms you describe following his pituitary surgery a year ago. He screams even when told gently what to do. And he cries/ screams most of the day. Do you have any suggestions for helping him have a good day and stop screaming? He is very unhappy. The only time he stops is when he can just chill, being left alone. I don’t know a child like this can learn anything.I
Thank you for any help you can offer ssmith@winnebagocsec.org.
Hi Susan. I wish I could offer some advise but I can’t. Sorry. I hope you found some help.
Thank you for sharing no one in my family don’t understand or read up about it, I am feeling so alone
I find the Facebook groups are a great place to talk to others who understand Janet.
My wife is on a few forums, which seem to help her quite a bit. People tend to shy away from what they don’t understand. I cannot imagine what she goes through, but I try to understand and adjust myself accordingly.
All the best to you all!
I know exactly how you feel. No one in my family, including my husband, understand or try to educate themselves about it. Please know that you are NOT alone in this
I found out 3 months before my husband died of cancer, he was too sick too understand, everyone has disappeared, they don’t understand one you can walk&use your hands next day you have to use a walker,the diabetes mellitus with it my whole life teased about that, the panic attacks night terrors I am always afraid to go to sleep because I get up and drive,now that I am alone if I take the heart pills I will forget my husband died when I wake up, than when I realized it was a dream I start crying, this is hard to be alone with this
How nice to read some of your stories and challenges. I can relate to them all. I was diagnosed with Pan Hypo Pit in 2006. And my life could not have changed more. There is not one aspect in my life that I can say has remained the same. I do have great, and very supportive parents and friends, But I think … luckily? That having OCD, helps me keep moving and busy. Look forward to seeing more comments and challengescwe all probably share.
Can anyone tell me if their weight has increased sinced being diagonised. For me, 2006 – 65kg. Eight years later 2014 – 90 kgs.
Hi Lil. I missed commenting on this but from others I have heard success stories going paleo with their diets and being contious that exercise is mandatory.
I know the daily struggle of a pituitary tumor. I have a husband that suffering from mental illness since last year. Its a struggle everyday because the hormones is always off. But I encourage my husband and continue to fight alone his side to get the proper help he needs. My husband is 2year tumor free. The damage from the tumor will having a lasting affect on our family.
Thank you Nikki. All the best to you and your husband. He is a lucky man!
Sounds just like me…I am dealing with on going headaches/migraines, sodium issues and constant fatigue and desire to feel better! Being a single female, unable to work full time…I struggle with income and lack of understanding from GP’s who don’t understand my condition. I always feel weak and as though my heart is weak too. I exercise daily as I have two dogs I got on purpose to keep me active. As much as I have to get on with things, I would love nothing more to take time out and hope to feel stronger again. Definitely not dealing well with stress lately either!
Sorry for the late response. I did not see this. Have your GP refer you to a pituitary endocrinologist and follow a great website called Pituitary World News. Dr. Blevins is a fantastic reference. I hope you find the help and feel free to ask me anything.
This made very interesting reading, I was diagnosed 26 years ago, opp. At 24, as my tumour was the size of a golf ball, have been on cabergoline ever since & feel fine “I think” life is what you make of it, you can’t blame things on a tumour! PMA keeps me going, but I have to say, it was very interesting, thank you
Hi Rachel. Thanks for your comment. I am assuming based on your post that the tumor has not shut down your pituitary gland function? You don’t mention any replacement hormones.
Yes, life is what you make of it, but it’s even sadder that you don’t empathize with people whose lives have been changed so drastically by pituitary tumors. I wish my husband who was diagnosed with a pituitary cyst at the age of 31 after hitting a cow that was in the road could say he is fine. There are many days when he doesn’t even feel like getting up let alone taking care of or playing with our 4 young children. I’m glad your life is going so great, but you can’t honestly believe that people can’t blame things on tumors. My husband’s life, my life, and our children’s lives will never be “normal” due to his adrenal insufficiency, low testosterone, and hypothyroidism in addition to multiple problems with his back and neck caused by the wreck. Yes, we try to make life as “normal” as possible, but it’s really hard. Yes, our children are healthy, and we thank God for that every day. We also pray for people to understand what he and people like him go through every minute of every day.
What a great reply, I commend you for that. Having lived a ‘normal’ life pre tumour, the change in my life has been ENORMOUS, but I try to remain my daily normal knowing that I will NEVER EVER be able to go back to my other normal! Life changed!
What you have described is what I have been going through, I found out when my husband was dying of cancer, I had it my whole life, they just said its growing pains sweating a lot severe bone pain it took a blow to my eye my vision was so impaired I saw 6 of everything had to wear a patch over my eye for 1 year to straighten that this has been a long 7rs, its getting worse,but taking it out I won’t do,I now too many people who did they come back bigger, I am glad that you understand your husband
I agree.
Great information and very true. I had my pituitary tumour removed 6 years ago and my adrenal glands removed 4 years ago. Only 2 months ago I was diagnosed with bipolar. I am 100% sure it is a result of the horrible side effects and hormonal changes my body had to endure. Thank you for your spot on information. xo
Thank you very much for the kind words Sam! I hope you are doing well.
Hi Ron, as a person who has had two surgeries for macroadenomas I agree wholeheartedly with everything in your blog. I now have hypopituitaryism since having my last operation in 2008. However my worst problem has been the dreadful apathy I have suffered since 2008. My GP and endo don’t seem to ‘get’ this condition and I have been told to get over it!!! A great help!!!
As this is such a helpful and particular site would it be interesting to know what age people were when diagnosed?
Mine was in 2002 when I was 51, first op was 2003 (3weeks after specialist visit) then 2nd op 2008.
Hi Julie. Thank you for your comments. I was diagnosed in summer of 2013 and had surgery in October. I found Growth Hormone was the biggest help for me with the apathy syndrome. Wish I could explain why. Maybe it was just everything finally fell into balance. I wish you all the best and please get a second, third, or fourth opinion until you find a doctor that will listen.
Thanks for the speedy reply, here in Australia GHR is around $25.000 per year, way above affordable for me. I must say, one thing I didn’t lose was my sense of humour, I do manage to still laugh my way through life. Your article really touched me because it is MY life too. It’s nice to touch base with people who really understand the struggle of pituitary disease —- thankyou so much! Cheers
That’s awesome Julie. Just keeping the sense of humor will get you through so many tough days. WOW! 25K? I never would have guessed. That is not right. Full price in Canada that I pay is $410 a month. I knew it was more expensive in the US but had no idea it would be that much in AU! Considering the need our bodies have for it the government, health system, and Manufacturers need to give their head a shake.
The GHR is free for children up to 18 yrs then it’s pay up or go broke or without!!!
Yes wow GH is ridiculously expensive! 😦 $100 a week for me in Australia vic. Plus cortisol, thyroxine, HRT patches and also diabetes products it’s overwhelming but government say I’m not ‘sick enough’ for them to subsidise! I had microacromegly (cushings) and radiation few years back and mentally since ive been paranoid about my weight and my self esteem has been crushed! I can only work part time too which just covers my bills and they say I earn too much for a health care card argh frustrating but glad to hear there’s so many people out there that share the same problems! I agree I’ve been effected mentally too. It’s hard not to feel alone or angry a lot of the time and I do luckily have a sense of humour but not as much as I did previously. Thankyou every one for your stories I feel grateful to have a good life otherwise and that there’s help out there… Just have my moments when I think bugger just which I was normal and it wasn’t so stressful or mentally draining keeping ontop of it all 🙂 xx
Yep kevin, i can confirm, at 0.45mg/day injections its $750/mth in australia. There has been a proposed change to include adults, but the wording as to who will qualify is all lawyer speak and very carefully worded to sound like many, but has a lot of caveats, so looks nore like political promise than the real thing. As to finding a decent endo… ive gone through 15… the small goup of us that chat have gone through same. If haley and/or julie and any other ausies want to chat with us. Use my name and the profile piture ive used to find me on facebook.
Hi there I just read your story from an link on Facebook. I like many, have been living with Acromeagly and a pit tumor which has been cut at, radiated and then cut at again. Your description of the psychological impacts of this disease has almost brought tears to my eyes. After my first operation I remember all my family saying “OK we got through that now on with the rest of our lives” I cried like a baby. I knew I was supposed to be OK but something was just not right (my god I am getting shivers up my spine writing as I type).
Life goes on and there are indeed ups and downs but I guess now I know someone else understands.
Peace.
Jason
Thanks for the kind words Jason. And no we are certainly not the only ones out there. I don’t know if you ate on Facebook or not but there are few groups of us out there that share our stories. Nobody that is not living it will truly understand what goes on in our minds and it’s almost impossible to explain. If you would like the links to join let me know. They are closed and confidential. Cheers! Kevin
Can I get the names of those cloed groups concerning pituitary tumor removal for my husband?
Hi Debbie. I am an admin on Hypopituitary Support Group. There are many others if you do a search. Pituitary tumor Support group, pituitary tumor awareness, pituitary tumors – men’s support group and so many others. Hope this helps.
Then why do all doctors say that pit tumors (functioning & non) cause zero issues? I’ve been to many and they all say the same thing. I have adrenal fatigue, hypothyroid, severe depression, and almost all symptoms U listed. They all said my problems are caused by something else, but they sure CANT tell me what
Hi Sue. Thanks for your comment. It’s an indirect cause. The tumor itself (unless hormone secreting) does not cause the issues except possible sight issues. It’s the damage they do to the pituitary gland. Most of our symptoms are all related to hormone deficiencies now. I don’t know why you are having challenges with doctors where you live. You need a good endocrinologist that is a pituitary specialist.
Thanks for sharing this. Rings true with me on so many levels. Clinicians are rightly focused on treating the medical aspect of pituitary dissorders but as someone post surgery with acromegaly the emotional aspects i feel i’ve treated myself. I’ve been lucky and wish fellow sufferers my very best wishes.
Thanks Richard! We certainly have to fight for ourselves and advocate for our illnesses. We should never give up.
Can anyone reading currently let me know where they are finding this link to my blog? My stats are off the charts the last two days so I am very curious. Any help would be appreciated. Thanks all.
The link was forwarded by a FB friend in anAcromeagly FB group.
Thanks Jason!
Pinterest!
where is your link? i found on my facebook. very informative. i’ve had 2x transph. surgeries.
Hi Angel. Link too?
I saw the link on UK acromegaly support Facebook site which I have found very helpful. I am 63 and continue to work full time since my surgery last August. I think I would go dolally if I didn’t work. I would dwell on things too much. I need to keep occupied.
Thanks Mary!
This really explains alot. My mother had a pituitary tumor. the mood changes the swings from high and low less affectionate plus some other symptoms that I read above all match my mother to a tee. so the pituitary tumor did not kill her, it did affect her severely.
Yes Janet. Does she have a good experienced pituitary endocrinologist? For most of us, just getting the right help to get our hormones balanced again can bring us back. We may never be the same but can certainly get closer.
I’m in the uk and read it on FB, I just keep reading your article it feels like you have written it for me. I’ve just come back from surgery on my overgrown bowel (GH induced) which had become twisted and blocked. In March 2014 I was completely unable to walk due to surgery on my spine (neck – I developed a blood clot). I got up pushed myself and was walking somewhat slower but walking. Then bang back in hospital again and I have to start all over. I was due to have my Pit Tumour removed in July but this will now be postponed. I know that I have had Acromegaly for decades, but I was diagnosed in Dec 2013 after I googled it (consultant had written to doctor saying that I had mild features of Acromegaly) and I requested it to be added on to my neck MRI. I have lived with the electric tingle of my nerves for 3 decades, headaches, tiredness, fatigue all are my world invisible to those outside, I may have failed with my marriage, but I like to think that I’ve succeeded in raising 4 beautiful people that are my children. I have always tried to work, sometimes doing 2 jobs to support my family, but now I’ve been put out to pasture. I have suffered from depression, but I have come to terms with why, it’s my physical condition controlling my mental condition and I now try to make my mental condition push my physical condition (which is crumbling). This world is full of well meaning good people, however I feel I have the ability to pick out the insincere and they spoil what could be paradise. I am lucky I feel I have reached a higher level in life unfettered with the ambition of profit nor the drive for sexual gain I can look at things in a different light….. and it is a beautiful light. Thank you for writing your article.
Thank you so much for your story Mark!
this article is spot on! I am going thru all these emotional changes since before and after my tumor surgery. Thank you for sharing.
Thank you Michele!
I absolutely love computers!! If it wasn’t for all of us communicating on these sites, we would think we were the only ones going through this & never ask or do anything about it.
I have set here the last 2 nights reading and crying. My Husband had a pituitary tumor removed last Oct. Everything seemed ok as far as his personality afterwards but here it is almost a year later & he never smiles, miserable most of the time, very short & sometimes hostile. One night I was in my office working & he comes in the room screaming at me, saying he doesn’t know me (been together 42 yrs) and I was a back stabber. Man oh man has that hurt to the bone. I have never ever been a back stabber & he knows that.
I relish being around my fam & friends and I have a big heart & a great ear to add. He wasn’t brought up in a tight loving fam like I was, but my fam treated him like he was glory. Loved him so much & still do. But here lately my stomach is constantly in knots, sorta walking on needles around him. Nothing I say is right, I get blamed for simple stuff, that should be no big deal but he makes it out to be.
Also, he is having a time remembering stuff. Its gotten worse since the surgery. He worries he may get Alzheimer’s like his Dad had. (I pray he doesn’t) that’s a whole other story.
He was also taking antidepressants over the years & he said they were no longer working so the Dr changed to another kind, & he said none of them work, and stopped taking them & I’ve heard & read that that causes withdrawals, which is another factor with the mood swings etc… I hate seeing him like this, down in the dumps, tired, stares out a lot and sometimes won’t answer you, like he’s in another world.
After reading for the last 2 nights & learning that there is hope out there, I’m going to check to see if we have a neuropsychologist in our area. I want him to be normal/happy again.
Sorry this is so long. I just have so much to say & I listen to all my friends/fam but I have no one to listen to me. Nobody wants to know your problems but expect you to help them with theirs.
Oh, I forgot to mention, his sodium dropped really low a week after surgery & I took him to the ER & ended up staying 4 days in ICU. His testosterone, thyroid, HBP, DHEA, sex drive are all out of whack. Our Dr is so trying to get him back to satisfactory levels.
Thanks everyone for taking the time to post your stories, they really do help a lot!!
I am in tears…there are others that understand my condition! Thank you for sharing…Although I have a very supporting family somedays I just feel like quitting… And wondering when will I ever go back to my old self…Has any one gone back to their selves?
Hi Lorena. Thanks for your comment. Yes some people have. It certainly is a daunting task to get all hormones back to close the level and learn how to manage. Are you on Facebook? I would recommend you join a couple of the support groups where we all get to lean on each other and learn. HYPOPITUITARISM is one of them that I admin.
I’m 15 and have a tumor. And I wish evey person I know would read this because it explains a lot, because they think I’m rude all the time and I need to control it, but they do t understand that I do try to control it but it hard. And the doctors up at primary childrens say its not a emergency, because right now its only 8mm but they don’t get what its like to have one, and you won’t infill you have one. I want people to read this and be more understanding.
OMG. I think I never had an idea as to what a pit tumour was until I read all these posts. I’m really impressed by the kind of fights you people have been fighting for your self or for your loved ones. I pray that there’s enough research to put all sufferings to end and everyone to be healthy n happy.
Yes, thanks for all these comments, looks and feels like
“I am at home” here. Rang my doc on the 3rd of July explaining that my head had exploded. My “golf ball” had burst and made a mess “in there”. Got it out as an emergency -op, called “de-bulking””, on the 6th.
Now I am Panhypopitu, an expression I learned on this website.
My Endo is a nice guy , started me up on Thyroid and Adrenalin -stuff but i have not heard from him since August. Tried to contact him but got nowhere. GP shrugging his shoulders.
I got most of the symptoms that are mentioned above but I suppose at the age of 65 I will never dance the buggy again anyway. Sitting mainly at home now and watching the “time go by”
Serves me right , emigrating to a provincial town of a 3rd world country 🙂
Keep up the good work friends.
Thank you for reading my blog. I am sorry you are having difficulty getting the help you need. If you use Facebook there are a few great support groups of people like us and someone may know of a endocrinologist where you live. Take care.
A fundamental fact that is overlooked in the standard treatment model and most research is that the pituitary is where the endocrine system and the nervous systems connect. The pituitary is linked directly to the hypothalamus of the brain by the pituitary stalk. The pituitary stalk is a column of nerves and blood vessels connecting the hypothalamus tot he Rafte Cleft of the pituitary. The pituitary is the only organ that takes its blood supply from the brain allowing pituitary hormones to enter the brain directly. The endocrine system and the nervous systems are not parallel systems, which is the standard treatment model, they are directly connected.
Also have a look at neurosteroids, 2 I am looking g at now, are hormone precursors pregnenolone and DHEA, both are very important in memory and cognitive functions
Wow. Thank you so much for writing this.
Since my transphenoidal adenoma removal my life has literally fallen apart. I’ve lost everything and everyone. Over the last month I’ve developed suicidal ideology to the point planning my suicide out. Only, I don’t want to die, I just want the mind numbing sadness and pain to go away. It’s literally soul crushing.
On top of that my endo sucks, he is making no effort to check my hormones at all. I recently discovered that my prolactin is high via my GP when I began producing breast milk and got mastitis! I’m praying that this isn’t another tumor! Although the likely hood of a ATCH producing tumor also producing prolactin (which was normal at removal and has steadily gone up since surgery) is slim to none.
I think this turned into venting. Sorry. I am however very grateful for your blog. Reading that some of these feelings are normal helps some.
Yours is a very common story, I’m an admin on a FB group “adult hormone deficiencies” and hear this story all the time. One of the key things is treating PHP patients with depression with NDRIs rather than SSRIs, low dopamine in the brain often leads to elevated prolactin from the pituitary!
I’m currently on SNRIs to treat my PTSD. I wish my endo was better. 😢
My figures of 47.7 % comes from this blog.
the figure for accidental death was 18.3%
I am currently on low dosage of Amitriptyline but will talk to my Quack about SSRIs.
Venting is good for you Michele. At least here we know how you feel………..
I just read your story and hope you are doing better. How have you been since writing this comment?
Hi Deb. I am doing very well. I have learned so much in regards to balancing hormones. Also having an endo willing to work and teach rather than dictate has been amazing. I still have my off days but they are few and far between.
I’m of the opinion it happens to all hypopituitarism patients, regardless of tumors. In my case, chronic fatigue, chronic apathy and major cognitive slow down are my major burdens, I can cope with the physical side of hypopit, but question my usefulness, and exitence based on the psychological and neurological impacts.
but question my usefulness, and existence…………..
……………..and here we probably have the explanation why there is such a high suicide rate among
pituitary sufferers. “Raison d etre” .
I got this wee beauty out of a book from D.R. Pollock with the title ” Knockemstiff.”
Quote: I am beginning to believe that anything I do to extend my life
is just going to be outweighed by by the agony of living it !
If you are a bit depressed don’t read this book.
cheers
There was a study in the UK. That said 20% of untreated or poorly treated PHP patients suicide. And there was another group, that had “accidents” that couldn’t be directly written up as suicide. 😦
Reblogged this on rosebleue9 and commented:
This speaks very well to many of my experiences & those of my acrofamily.
I am not crazy or alone! People do not get it at all!!! It’s hard when you can’t even explain what’s going on while others expect you to know all the time. I’m on meds Bc surgery, my tumor is too big but this article helped a lot Bc I didn’t think a tumor could have these affects on me. I was first told its benign no biggie. It didn’t matter rather I took the meds or not ! Well now my tumor has no more room to grow! I’ve been telling my close friends and family for years, I just don’t feel right ! But very few have stayed by my side. And I’ve lost a lot but gained some. I don’t know my prognosis yet, but I do not want radiation on my head but I’ll do what I have to do in order to get better but I’m just running low on energy and patience. I am sick and tired of being sick and tired ! But thank you for writing this article. It helped me understand.
do you actually have a pituitary tumor ?
Why do you say it has no room to grow?
When they get really big , they often crack and start bleeding, then you will have it out very very quickly, or else….
Once the tumor is so bi,g it has to come out, radiation is used later only to control re-growth or bits that were left
during the opp.
Great Post!! I really like your blog. The information is very good and helpful. As an oral surgeon, this blog will help me lot to understand the patient’s psychology about tumor which will surely help in treatment. Thank you!
Wow, I don’t know if reading all of this makes me feel better or worse haha. I had my prolactinoma removed a year and a half ago. All of my hormone levels have come back in the normal range since then, but I am definitely not ok. My vision is off, I’m always tired and depressed and I have memory problems. Oh and I never stop sweating! I guess I’m glad to read that there are others like me, but I’m worried I’ll never feel right again…
Hi Steve. The big question I always see from the support groups is “what is normal”? The reality is are you in the lower end of the range or the upper part of the range. For those of us that replace out hormones we shoot to get all our results into the upper 2/3rds of the range to feel good. I would be curious to see what all they tested and what the results were. I have not felt better in years now but I watch my hormones regularly. And maybe I don’t really remember what normal felt like anymore too.
Kevin, there are a couple that need to be in the bottom 3rd e.g. reverseT3, and im pretty convinced that the ones that need to be up, need to be in the top 3rd. Some facebook groups keep a list of tests that are important to assessing hormone dysfunctions, and within those docuemnts, advise what the optimal range is, within the reference ranges supplied by labs.
Yes. I created my own for me based on age etc. Glad you have that. Sorry you are still not feeling quite right yet.
Kevin, ive accepted that that is impossible with the current state of endocrinology.. unfortunately, just stopping hydrocortisone didnt have the desired effect of bring things to their natural end.
Oh! That’s not good Stephen. I am sorry you feel that way. I hope you have someone you can talk to about it.
Ive had to prove conclusively that there is no chance for a solution, and talk it through in detail, produce enough evidence that would convince a cout of law, if euthinasia was an option here.. its now over 50% a fiscal decision. I am a very expensive kept pet/professional couch potato, which is an unacceptable existence for me.
I think you should be talking to a professional that isn’t involved with your physical needs. Someone that can help you through this. There is always a reason to keep fighting amd pushing forward. As you even mentioned, endocrinology is still learning and new things are being advanced all the time.
Kevin, talking to a professional wont add $2m to my superannuation fund (401k) so i can buy meds, food, utilities, rent ect.. a full set of pituitary meds would be about $2k per month, forever, and then food etc… current income from superannuation accounts is about 3%… with this i need $4k to $5k per month to live.. working backwards, 1.6m to 2m in the account.
what happend when you stopped taking Hcloride ? I was told this would be a quick “fix”
Lodro, i just got all the early signs of adrenal crisis, i.e. nausea, diarreah confusion.. but it wouldnt progress from there, i do make a small amount of cortisol myself still, and my BP is 200/100 and unresponsive to BP meds, even in combination. I have read that in a small group of aldosterone deficient people, BP goes up, not down, and is unresponsive yo regular bp meds.. but my endo believes putting me on florinef will stroke me out.. for me, either option looks like a win.
I didn’t think someone would comment on this so fast. That’s pretty cool. I’ve had a lot of blood work done and by looking at it you’d think I’d be one of the healthiest people around. I’ll just write a couple of my last ones. My testosterone was 658, tsh was 1.42, and my prolactin was 11.7. My primary care dr. Did a little research the other day and found a small study that showed Ritalin helped some people with similar problems. I started taking that the other day. I have had more energy for sure, but I still foggy and weird like I always do. I’m going to stay on it for a while and maybe try to see another endo in the near future to try and get another opinion
Thanks Steve. Testosterone looks good. Your doc should be testing T4 and T3 more than TSH though. TSH isn’t really telling you what your thyroid is doing. For memory I would also look at adding sublingual B12. It’s a great help for me.
Thanks for the response. I have had my t3 and t4 checked, but it was about a year ago so I will have to have those checked again and I will for sure try the b12. Thanks for the suggestion
When treating hypopit thyroid issues, freeT3 and reverseT3 become the key indicators, rather than TSH and freeT4. There have been articles recently calling the whole assaying methodology into question for TSH, and others calling into question the use of levothyroxine to treat pituitary based thyroid problems, as the risk of conversion to reverseT3 over freeT3 is increased. The old studies funded by the original manufactureres of levo that say T4 monotherapy is all we need, still haunt us today. Using T3 monotherapy would be the preferred option (cytomel), and if not well tollerated, add some natural dessicated thyroid.
Thank you so much for providing all of this information. This is all so exciting to read.
And second opinions are always good. Try to find an endo that specializes in pituitary or at least experienced. Most are not.
Steve, im thinking your doctor is referri g to the 2005 article from the journal of psychiatry, that talks about chonic apathy as a big issue with many hypopit patients.. and using adderall, (adding modafinil is also a good option, a half dose of each!) More recent studies show that DHEA and pregnenelone, produced in the adrenal glands have a strong neurosteroid effect and are critical in both cognitive and memeory function… i cant access those in australia, as they are prescription drugs, and endocrinologists here are stuck in the 1980s.. but in the usa, these are over the counter supliments. I reccomend the 7keto form of dhea over pure, as it causes less issues not converting into androgens or estrogens. You may well find you dont need amphetamines if these 2 restore mental function.
Hi I’m just getting some emails about these convos and noticed you mentioned DHEA. I’m hypopit woman, 37 yrs old and have recently been put on DHEA meds by my endocrinologist as I’ve been complaining about muscle pain tiredness and alot of other things! Lol I had to get DHEA st compounding chemist but wasn’t hard to get overall. The thing is I’m feeling more fluid and weight since I’ve started and I’ve definitely seen a change in the rate of which body hair grows eek! So when you say DHEA has a neurosteroid effect what does that mean? As I’m wondering if it’s messing with my hydrocortisone drugs or other hormones etc
Hayley, there are a number of effects in play when you start talking DHEA. First is it effects in concert with cortisol. DHEA does offset some of the -ive effects from hydrocortisone, but of course, needs to be in balance, this is something your endo cant do, as it is as individual as your biochemistry, you have to try and adjust your meds into balance.. the second part is its neurosteroid effect in partnership with pregnenelone, the restoration of cognitive and memory function are signigicantly impacted by the loss of these two adrenal hormones.
HI Steve, you are the first person in this blog that has stated his hormone levels are in the normal range but you still have issues. I am sad to hear that but in a way relieved as I have vision/balance issues, tired and moody and my hormone levels are normal. It has been over a year since my surgery as well. I though maybe there was something else wrong.
I just hit the two year mark since my surgery and unfortunately I’m still not any better. I don’t know if something else is wrong, but no doctors can find any answers. I’m really stating to think I’m just going to be stuck like this. I’m sorry that you are having troubles so long after surgery too. It’s hard to deal with because no one understands how bad I feel. Especially my wife. She just thinks I’m crazy…
Wow!!! That’s awesome information! I will totally look into trying those. I’m so glad I found this website
DHEA has a neurosteroid effect
I think, Hayley Jones, these drugs are allegedly supposed to make our brain functioning better and faster, therefore getting rid of the well known “foggy-brain” feeling. I have personally no experience with these drugs.
singhi
re Stephen Hall “I reccomend the 7keto form of dhea over pure”……………..
So, Stephen, If I take the 7keto, will i have to reduce my cortisone ?
singhi
Singhi, that is very individual.. if you have been on hydrocortisone for a while you should be able to feel too high or too low and adjust the dose accordingly.
been on it for 1.5 years now but “nope” , Anything between 15 and 30 mg /day makes no difference. ??????????
You should intentionally lower dose untill you feel the effects of low cotisol, and also up the dose until you feel high cortisol, it is important to know those feelings so you can adjust doses if needed. E.g. if i use short term testosterone (2week injection) over the 12week one, i need to cut my cortisol for the first 4 days. if you would like real time chat, track me down on facebook. Grey 3pc suit, aviator glasses, glass of fizz in hand.
Wow, its great to know that I am not alone. I’ve had two transphenoidal surgeries in the past 4 months to remove to Rathke’s Cleft Cysts. After the first one I felt fine for about 2 months, then I started getting headaches, nausea, and vomiting. This eventually led to the discovery of my second cyst, which was removed about a month ago. Since then I’ve been experiencing weird little sensations, like the feeling of the room getting smaller and smaller, anxiety, panic attacks, and a general fogginess in my brain. My hope is that these will go away with time, but after what I’ve read here, I’m not too hopeful.
This has helped me understanding my husband and all he is going through. I was upset at him cause he kept snapping at me and be depressed and irritable. Now I know why he had changed so much. I am so glad that I decided to stick around before the diagnosis and that I am able to support him during treatment.
I am 37 year old women taking cabergoline (dostinex) for a micro prolactinoma.
I have blocked sinus for months. Does anyone else have this symptom? I have nausea and tiredness.
Also have the worse symptoms mentioned on here.
It’s been the worse time of my life.
Can anyone say if cabergoline is effective for the emotional and scary side of the illness?
I am trying my hardest to lift my mood and be positive. It’s exhausting.
But life is worth it.
HI, I had my T3 and T4 levels checked and they came back within range. I asked about RT3 and my doctor said no because the lab people would not understand it ( no around here does it and it is not on the lab sheet of tests). I feel pretty bad most of the time ( sort of like the flu). I definitely have emotional issues. Lately, I have worsening headaches. I often get this floaty, foggy feeling and am off balance ( cannot lunge my horse as I cannot turn). I was put on antibiotics as they thought it might be sinus. It seems to have lessened the headaches ( but that happened before with my headaches some things like sinutab seemed to work for a while). My neck is very sore lately ( doc says the way I sleep). I have no idea why I am like this but certainly would like to be better.
maybe a MRI scan with contrast might show up something in your head ????????????
How is it up to the lab to understand the test? I acknowledge that the ranges for revT3 and lots of other hormone tests are way off, but the basic idea that revT3 should be as low as possible is still there.. unless you doctor places his faith in the reference ranges, what i call a “paint by numbers” doctor.. im surprised your doctor hasnt gone thepush you off on psych route, your numbers are in range, and you are describing low T3 symptoms.. therefore you are crazy, is a common response rom endos.
Hello everyone, it’s really comforting to know i’m not going crazy and being obssesed about this thing because i’ve asked my neurosurgeon about it and he said meh never mind it… everything changed, i’m a university student, 21 years old and planning to excell in my studies to get my doctorate degree in the next years… I have exams currently and i’ve noticed that i really got dumber! my cognitive skills are very dull and the impairment is just frustrating, i can’t remember my courses no matter how much i try to revise.. i’m so mad and sad and everything in between, today i was passing an exam and couldn’t remember what i’ve revised, looked around and all i saw was just bunch of healthy people who care about dumb things like dating and fashion and parties… things that every student in university should think about! while I have to live this nightmare of apathy and depression … i’ve been diagnosed in November 2017 and taking Dostinex ever since, my tumor is 1.6 cm so it’s a macroadenoma… i take one pill per week of Dostinex 0.5 mg… lately i’ve developed troubles sleeping and sometimes i even feel like i’m experiencing psychosis… my mind makes me see things… terrible things that aren’t there and i know they aren’t real but i react as if they were real and get lost in the confusion of why is this happening… i get up sometimes in the morning feeling like i’ve woke up before and spoke to members of my family and said things that i can’t remember or that they say say it wasn’t understandable … i even started to believe that my head is making it up and that being sick became an obsession but it’s too real and you guys make me feel more sure about it… so crippling fatigue+psychosis+hallucinations+apathy+mood swings+depression= A SAD GIRL WITH A LOT OF DREAMS. I just want to be normal that’s all please someone help me and tell me what do they they think of my case. PS. my problem was prolactin and if it wasn’t to the absence of my period (and even with the med it’s not back) i’d never find out i just thought i was sad and anxious because of my life not because i’m sick, so it’s also a hormone secreting tumor! not sure if it’s prolactinoma, docs never said the word! i hope any of you replies soon, i’m desperate.
well dear, in the moment you can’t be normal, mainly because you have a tumor . Have you researched the side effects that are to be expected when taking Dostinex ? Do you take other drugs, prescribed or otherwise that might cause reactions . Have you got an ordinary GP or do you see a Endocrinologist. Also do a lot of research and find out all about your condition it will help you calm down a bit and will give you the knowledge that this is a difficult period in your life but one that YOU WILL get through .
Thank You So much for sharing your experience & your blog kmuir2723. I too was diagnosed with a pituitary macro prolactinoma brain tumor in 2015 & it was found when i ended up struggling with changes to my behaviour, intense irritabile, snappyness, mood swings, suicidal thoughts and feelings and many others that you mentioned in your blog post. I have been involved in suicide prevention for the last few years & i shared your blog to my Facebook page last night & was amazed at the statement that said “There have been studies that show a correlation between Pituitary Tumors and Suicide. Upon autopsy, pituitary tumors were found in 47.7% of the suicidal group, while in the nonsuicidal (accidental death) group showed only 18.3%. This is very significant.” do you have the source link for this very significant study? I have had a look online and can’t seem to find anything stating very significant, a direct source to such studies & statements would be really helpful. My email address is mskitscott@gmail.com if you wana email it to me or add it as a reference to yoyr blog post so that others are aware of how to access the study when others ask them details about it. I wish you all the Very best in your ongoing recovery, advocacy & healing, and i look forward hearing back from you.
Blissings
Kit
Hi Kit. Sorry for the delay. Did you find the study?