Looking for others with Pituitary Adenoma

Posted by dmedina71 @dmedina71, May 3, 2016

I like to now if their is anyone who has been diagnosed with Pituitary Adenoma

Interested in more discussions like this? Go to the Brain Tumor group.

I had surgery in Aug 2018 for a benign pituitary tumor. I still have boughts of tiredness. Can anyone share how long it took them to get back to feeling like their old self? Thanks.

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Welcome to Connect, @remsen. It can take time to recover from brain surgery. members talk about life after brain surgery here:
– Life after Brain surgery https://connect.mayoclinic.org/discussion/life-after-brain-surgery/

Remsen, you say that you have bouts of tiredness. Have you noticed any particular pattern? When are you most affected by the fatigue? Have you found tricks to help manage and/or prevent the tiredness?

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yes I have I was diagnosed in 2017 and I have gotten severe headaches, but the doctors say its unrelated I don't feel it is. I have memory loss and hurt all over and now have depression. And I have gained over 100lbs

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@sandysdoves

Hello It will be three years this May that I was diagnosed with my Pituitary tumor. It was discovered after my gynecologist ordered bloodwork and found that my Prolactin levels were very elevated. She immediately sent me to an Endocrinologist who ordered an MRI and an Ultrasound of my Thyroid because she felt nodules. The MRI came back positive for the Pituitary tumor, and I was referred to a Neurosurgeon. It took me time to find one as the one she referred me to didn’t take my insurance. Once I found one he explained to me in more detail what was going on. He told me there are only three instances where he operates, one if it continues to grow, two if it starts to affect my vision and the third is if I started having other symptoms. He also informed me that he saw something else on my MRI and asked if I had previously had any other scans of my brain. I told him two years prior I’d had a CAT Scan to make sure all of a tumor had been removed from the base of my skull. It was to make sure all the cancer had been removed. I was able to pull the films up on my IPad. He said the same spot was on the CAT Scan. At my six month MRI appointment he informed me I also have a Meningioma.Fast forward to my November appointment with the Endocrinologist my labs were all abnormal and I started having symptoms. The Endocrinologist ordered more bloodwork. One of the test was the glucose suppression test to check my growth hormones. Had to get the test done twice because the lab did it wrong the first time. The Endocrinologist warned me it might happen. In the meantime I had my appointment with the Neurosurgeon he said that the Pituitary and the Meningioma tumors are both stable. When I mentioned my recent lab work and symptoms he said if the lab work came back abnormal it would be time to discuss removal of the tumor. All my labs came back fine except my Prolactin levels are going back up. The Endocrinologist changed my medication dosage for the fifth time and said if it doesn’t go down she will repeat the glucose testing. If there’s a change in the Glucose Test then she will recommend to my Neurosurgeon to move forward with removal of the tumor. I go in two weeks get my Prolactin levels checked.

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I have been told that mine is small and they keep checking my levels also. I still have
Guillian Barre Syndrome and still have memory loss and depression and hurt all over
and have sever headaches at times.

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@colleenyoung

Welcome to Connect, @remsen. It can take time to recover from brain surgery. members talk about life after brain surgery here:
– Life after Brain surgery https://connect.mayoclinic.org/discussion/life-after-brain-surgery/

Remsen, you say that you have bouts of tiredness. Have you noticed any particular pattern? When are you most affected by the fatigue? Have you found tricks to help manage and/or prevent the tiredness?

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I have noticed it occurs if I don't get a restful sleep. But, it is more noticeable since my surgery. Prior to surgery if I did not sleep well I barely noticed it. Now I can definitely see a difference.

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Hello Everyone,

I had a MRI done a few months ago due a moderately elevated prolactin levels (42). The MRI showed a possible 4mm microadenoma. I recently saw a Neurosurgeon and Encronologist and was told by the Neurosurgeon that she doesn't think I have a pituitary tumor. She basically said if there is a tumor there, it's small and nothing to worry about. She went on to show me some old pictures that she uses for illustration of a large and a small tumor. Then she showed me my images on a screen and asked me if I saw anything similar to what she had shown me on the black and white photos and I didn't. She pointed out the area where the possible pituitary adenoma was and said most people have small lesions of some sort like that. My Encronologist is running test to check various hormone levels. He's wants to rule out somethings but is concerned about my BP and weight. I'm tired all the time and have anemia and migraines. He asked about my sleep habits and now I have to do a sleep study. The Encronologist said there are a lot of pieces to this puzzle and unfortunately I wouldn't get the answers until various test were completed. I also have to so a siliva test.

I'm so lost. I'm scheduled to repeat an MRI next year. Things are just all over the map. And it doesn't help when all your family hears is you don't have a tumor and everything else goes out the window. Meanwhile, I'm just sitting looking lost and confused. Has anyone else had to deal with anything like this. Maybe I should be happy the Neurosurgeon didn't see anything but it doesn't feel right to me. I am thrilled that no surgery is needed but not convinced that nothing is there. I'm just not convinced but I'm also not a Neurosurgeon lol. Any advice or input?

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@ladydove417

Hello Everyone,

I had a MRI done a few months ago due a moderately elevated prolactin levels (42). The MRI showed a possible 4mm microadenoma. I recently saw a Neurosurgeon and Encronologist and was told by the Neurosurgeon that she doesn't think I have a pituitary tumor. She basically said if there is a tumor there, it's small and nothing to worry about. She went on to show me some old pictures that she uses for illustration of a large and a small tumor. Then she showed me my images on a screen and asked me if I saw anything similar to what she had shown me on the black and white photos and I didn't. She pointed out the area where the possible pituitary adenoma was and said most people have small lesions of some sort like that. My Encronologist is running test to check various hormone levels. He's wants to rule out somethings but is concerned about my BP and weight. I'm tired all the time and have anemia and migraines. He asked about my sleep habits and now I have to do a sleep study. The Encronologist said there are a lot of pieces to this puzzle and unfortunately I wouldn't get the answers until various test were completed. I also have to so a siliva test.

I'm so lost. I'm scheduled to repeat an MRI next year. Things are just all over the map. And it doesn't help when all your family hears is you don't have a tumor and everything else goes out the window. Meanwhile, I'm just sitting looking lost and confused. Has anyone else had to deal with anything like this. Maybe I should be happy the Neurosurgeon didn't see anything but it doesn't feel right to me. I am thrilled that no surgery is needed but not convinced that nothing is there. I'm just not convinced but I'm also not a Neurosurgeon lol. Any advice or input?

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Hi, @ladydove417 I hope this email finds you well. I was reading what you wrote. My husband I was diagnosed with Pituitary Adenoma,Also look like he was starting to have Cushings Syndrome,after 5 years and many test,my husband did his surgery. First thing I will tell you is Never settle for 1 opinion, I took my husband 3 Neurologist,2 endocrinologist. Until we found perfect doctors I dont know where you live but where I live we have University Of Miami (UHEALTH). Sometimes you need to go some place else to get better opinion,but if you cant . I will give you his doctors name and maybe you can find doctor in your area that are similar like my husbands. I will tell you keep a binder all report,and CDs all your labs,MRi,Cat Scan, anything you have done. All medications given also. His endocrinologits is Dr Atil Kargi and his Dr Ronald Benveniste neurologist surgeon. My husband had high blood pressure, he was gaining weight,swelling around his stomach,headaches,he even started have visual problems,and sugar was trying to turn to diabetes. It is a very hard process,lots of emotions. I will tell you this my husband was complaining dull headaches so I made 1 appoinment with regular neurologist and he told him and I was there "so you can stop crying and whinning,I'll send you for a cat scan,because you are to young to have anything'. Oh boy when the result came in,he didn't know how to talk to us or look at us. We new what the result was prior ro him telling us because we had picked up copy of the results and before he said anything I was already looking for another doctor. Please dont lose hope,you need to stay persistant and if a doctor tells you have nothing and you feel uncertain get another opinion. I know some insurance makes it hard but you need to talk to them and unfortunately have to pay out your own pocket. I send you hugs and prayers.My last advice is look for God and let him guide you and leave your worries to him and he will come thru for you,like my husband did and my children and I are very grateful,because my husband is with us today.

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@ladydove417

Hello Everyone,

I had a MRI done a few months ago due a moderately elevated prolactin levels (42). The MRI showed a possible 4mm microadenoma. I recently saw a Neurosurgeon and Encronologist and was told by the Neurosurgeon that she doesn't think I have a pituitary tumor. She basically said if there is a tumor there, it's small and nothing to worry about. She went on to show me some old pictures that she uses for illustration of a large and a small tumor. Then she showed me my images on a screen and asked me if I saw anything similar to what she had shown me on the black and white photos and I didn't. She pointed out the area where the possible pituitary adenoma was and said most people have small lesions of some sort like that. My Encronologist is running test to check various hormone levels. He's wants to rule out somethings but is concerned about my BP and weight. I'm tired all the time and have anemia and migraines. He asked about my sleep habits and now I have to do a sleep study. The Encronologist said there are a lot of pieces to this puzzle and unfortunately I wouldn't get the answers until various test were completed. I also have to so a siliva test.

I'm so lost. I'm scheduled to repeat an MRI next year. Things are just all over the map. And it doesn't help when all your family hears is you don't have a tumor and everything else goes out the window. Meanwhile, I'm just sitting looking lost and confused. Has anyone else had to deal with anything like this. Maybe I should be happy the Neurosurgeon didn't see anything but it doesn't feel right to me. I am thrilled that no surgery is needed but not convinced that nothing is there. I'm just not convinced but I'm also not a Neurosurgeon lol. Any advice or input?

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@ladydove417 – that would definitely be hard with your family just hearing that you don't have a tumor and not quite understanding your situation. With all the pieces to pull together of this puzzle, as your endocrinologist said, it's understandable you'd feel lost.

@dmedina71 makes an important point that seeking a second opinion if you are feeling uncertain could be useful.

I'd like you to meet @gemttaz @remsen @sandysdoves and @hopeful33250, who may have some input as you are going through this process and wondering about the possible 4mm microadenoma.

When will you be doing the hormone check, saliva test and sleep test?

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@dmedina71

Hi, @ladydove417 I hope this email finds you well. I was reading what you wrote. My husband I was diagnosed with Pituitary Adenoma,Also look like he was starting to have Cushings Syndrome,after 5 years and many test,my husband did his surgery. First thing I will tell you is Never settle for 1 opinion, I took my husband 3 Neurologist,2 endocrinologist. Until we found perfect doctors I dont know where you live but where I live we have University Of Miami (UHEALTH). Sometimes you need to go some place else to get better opinion,but if you cant . I will give you his doctors name and maybe you can find doctor in your area that are similar like my husbands. I will tell you keep a binder all report,and CDs all your labs,MRi,Cat Scan, anything you have done. All medications given also. His endocrinologits is Dr Atil Kargi and his Dr Ronald Benveniste neurologist surgeon. My husband had high blood pressure, he was gaining weight,swelling around his stomach,headaches,he even started have visual problems,and sugar was trying to turn to diabetes. It is a very hard process,lots of emotions. I will tell you this my husband was complaining dull headaches so I made 1 appoinment with regular neurologist and he told him and I was there "so you can stop crying and whinning,I'll send you for a cat scan,because you are to young to have anything'. Oh boy when the result came in,he didn't know how to talk to us or look at us. We new what the result was prior ro him telling us because we had picked up copy of the results and before he said anything I was already looking for another doctor. Please dont lose hope,you need to stay persistant and if a doctor tells you have nothing and you feel uncertain get another opinion. I know some insurance makes it hard but you need to talk to them and unfortunately have to pay out your own pocket. I send you hugs and prayers.My last advice is look for God and let him guide you and leave your worries to him and he will come thru for you,like my husband did and my children and I are very grateful,because my husband is with us today.

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Thank you so much for the words of encouragement. I'm glad your husband was able to find resolution and I'm sure he's grateful that you were there to help him through it all. It gets tiresome but I won't give up. I just did my siliva test last night and will start looking for another team of doctors to get a second opinion.

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@lisalucier

@ladydove417 – that would definitely be hard with your family just hearing that you don't have a tumor and not quite understanding your situation. With all the pieces to pull together of this puzzle, as your endocrinologist said, it's understandable you'd feel lost.

@dmedina71 makes an important point that seeking a second opinion if you are feeling uncertain could be useful.

I'd like you to meet @gemttaz @remsen @sandysdoves and @hopeful33250, who may have some input as you are going through this process and wondering about the possible 4mm microadenoma.

When will you be doing the hormone check, saliva test and sleep test?

Jump to this post

@lisalucier I still have to schedule my sleep study but I did my siliva test last night. Thank you for responding.

REPLY

Ok just to give everyone and update. I recieved my lab results from my initial visit with my Encronologist and Neurologist. Ironically, my prolactin levels were normal (24) and all the other lab results were also normal however I still have breast discharge. My Encronologist said it may be idiopathic discharge. My prolactin levels have been checked monthly since August and each month they have been mildly elevated until this month. My Encronologist also stated I may have a tiny tumor but the MRI was unconvincing and my level would be in the 200's if my elevated prolactin levels were related to a pituitary adenoma that produced excessive prolactin. My Encronologist is doing a siliva test for possible Cushing's disease but highly doubts if that is an issue. I completed siliva test last night, so I'll wait to see what happens. I've been told not worry or I'm not sure what you have but if you do have a pituitary tumor, it's tiny and nothing to worry about. I just believe every situation is unique and shouldn't be dismissed because they don't fix the typical textbook explanations. Just my thoughts from a confused patient.

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@ladydove417

Ok just to give everyone and update. I recieved my lab results from my initial visit with my Encronologist and Neurologist. Ironically, my prolactin levels were normal (24) and all the other lab results were also normal however I still have breast discharge. My Encronologist said it may be idiopathic discharge. My prolactin levels have been checked monthly since August and each month they have been mildly elevated until this month. My Encronologist also stated I may have a tiny tumor but the MRI was unconvincing and my level would be in the 200's if my elevated prolactin levels were related to a pituitary adenoma that produced excessive prolactin. My Encronologist is doing a siliva test for possible Cushing's disease but highly doubts if that is an issue. I completed siliva test last night, so I'll wait to see what happens. I've been told not worry or I'm not sure what you have but if you do have a pituitary tumor, it's tiny and nothing to worry about. I just believe every situation is unique and shouldn't be dismissed because they don't fix the typical textbook explanations. Just my thoughts from a confused patient.

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Good to "hear" your update, @ladydove417. That's rough that you are feeling confused in the midst of the testing process. Very understandable.

I'd also like to introduce you to @parrotqueen @astaingegerdm @koryn @elmay @downeylynn, who also have talked about pituitary tumors.

When will you get the results and interpretation of the saliva test you were given, @ladydove417? Do you believe your doctor was saying that the breast discharge was likely unrelated?

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