Anyone have lingering symptoms after pituitary tumor surgery?

Hello,
Did you suggest or already have a test on the Lanreotide to make sure the treatment is not causing the fatigue, muscle weakness and anxiety?

Sjt

Thank you for your response. I have had blood tests since taking the Lanreotide. I’ve had 3 injections since starting 3 months ago and my numbers are within limits while in the Lanreotide. I’m perplexed and disappointed I’m not feeling well 5 months post surgery. Had hoped this would resolve my symptoms. The hyperthyroidism symptoms resolved, sweating, shakes etc, but weakness, fatigue and anxiety remain. Thanks again for the response. Was wondering if this was uncommon. Was looking for some light at end of tunnel.

@getwell88, I'm tagging a few more members like @daphne2020 @astaingegerdm @rubyjane @mattey741 @jenirog70 @barbiejk @kswilliams who have experience with pituitary tumor surgery to share their experiences in addition to helpful post from @sjt10323.

@getwell88, have you noticed if these lingering symptoms of fatigue, weakness and anxiety have slowly improved over the 5 months or are they newer symptoms? Did you have them before surgery?

Thank you for your response and contribution. I have noticed little improvement if any at all. I feel as if I have aged 30 years over the past 8 months. I was in good shape and worked out/ran daily. In retrospect I had been experiencing slow changes over the past 4 years. I, at the time, attributed it to getting older but after being diagnosed with the pluri hormonal macro adenoma, was classic onset of symptoms. February 27 I had what I now know was an anxiety/panic attack. I had no clue what was happening as I never experienced one. I’ve been fortunate to be healthy my whole life. No event or stress brought it on. So began the random panic attacks and numerous trips to ER with sweating and very fast heart rate and shakes. Brain fog, mood issues, sleep problem, headache, dizziness, short breath and other odd symptoms. They kept telling me it was stress and anxiety and to relax. After my 5th trip I was getting the hear he comes again treatment. I was sent a bunch of psych meds I knew was not the solution as I knew something was going on. Finally an ER doc saw my tremors and ordered a brain scan which identified the macro adenoma. Finally I had a reason! I was then told there was no rush to operate as losing my vision was really the only concern. Despite my concern about my symptoms they said there was no rush. Later tests which were not identified previously revealed I had hyperthyroidism. I then went into surgery and it was as later revealed the tumor tested strongly for growth hormone and thyroid stimulating hormone. Not all the tumor was able to be removed. Because it was adjacent an artery and had invaded my sinus cavernous. I’m being told by what I now believe are very qualified people that my numbers are where they need to be. Many of the thyroid related symptoms resolved but not all. As posted earlier the fatigue, muscle weakness and anxiety remain main issues with dizziness and headaches lesser symptoms. The anxiety goes up and down. As it did before with the hyperthyroidism, it seems as if it randomly comes and goes for no apparent reason. Is it possible I have developed random anxiety now or is it possible the remaining tumor is releasing random or undetected hormones at the time of tests which are affecting me as before? Is my system taking awhile to adjust to new normal? Have I developed a medical/mental condition separate from the remaining tumor? I’m not willing to rule anything out as I just really want to get better and can only provide my symptoms with the hopes someone can identify and treat the issue. Thank you again. All the best to others on this forum.

Good evening, dear. I have a question for you. Do you know if there were excess hormones in your body before the tumor was removed? And do you know which hormones, if they were elevated, which ones? I'm asking this question because my wife had a very different problem than yours, but she had excess ACTH and cortisol (which is closely linked to the hypophysis or pituitary gland), very high. Once the main problem was resolved, her body suffered from cortisol withdrawal, due to working with very high levels for so long, and it caused fatigue, muscle pain, etc. I'm not saying this is what's happening to you, but perhaps it can be helpful. I wish you the best of luck.

Regarding your question, if there is an excess of any hormone, I understand that it should be detected in the tests, unless the hormone causing these symptoms is not being analyzed.

Perhaps a consultation with an endocrinologist would be a good idea, if you haven't already done so.

@getwell88
My daughter also had a pituitary adenoma secreting large amounts of cortisol.
After surgery it took a long time for the body to adjust to normal hormone levels. She was having pain and fatigue for quite a while. However, with time she was feeling more normal.
I think the same is happening with you. Consider that your body was used to large amounts of 2 different hormones and then after surgery it has to adjust to more normal levels. The hormones affected every cell in your body. I understand that you are impatient but recovery does take time. It’s important that your doctors follow your healing and are satisfied with your test results.
We were not aware either what recovery would be like- we realized that people recovered differently- some felt normal much sooner. Usually, these patients had been diagnosed earlier and had not been exposed to high hormone levels for as long as my daughter had.
My daughter also saw a therapist for a while- someone who understood the difficulties when dealing with serious illness.

@colleenyoung
Hi, I had my pituitary tumor removed on 14.12.25. I do not want to sound gloomy but I must be honest. Firstly, it has taken me well over a year to recover from the surgery. I do feel better now than before the surgery but some of the symptoms still remain. Maybe they were not attributed to the tumor in the first place. However I could not allow the tumor to grow as it would have messed with my eyesight and brain. I hope this helps.
Matt

Sorry the date of my surgery was 14.12.23 and not as stated in my previous post.
Matt

@gustavo1975 thanks for your response. My thyroid hormones appeared to be randomly out of limits, so detecting them appeared to be based on particular hormone and when it was tested. I feeling I originally got and now is that hormone tests should be able to identify abnormal limits but from tests I took different test takers and times were getting different results. Which my uneducated logic leads me to believe my tumor or defunct pituitary tumor may be releasing hormones randomly? Your information regarding your wife was helpful in that my system may have been off for some time and normal may feel off. Thanks much for your comments and all the best to you and your family.

@astaingegerdm

Thanks for your response. I’m very glad to hear your daughter is doing well and regret she had to go through it. Her experiencing it and you having a parents anguish of watching her suffer. Sharing your info was vey beneficial and I’m starting to think my system being out of whack for so long that returning to normal feels not normal. Best wishes to you and your family.