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Pituitary MRi
HI All,
I had my first appointment with my endocrinologist today and nothing went as I hoped. He did not have the report from the Radiologist and he wasn't able to look at my MRI. Only thing he did was schedule me for blood test and urine sample. I'm so frustrated with not having any concrete info. Therefore, I went and pick up a copy of the report. It reads as follows,
1.2cm. Differentials considerations include macroadenoma with recent hemorrhage, craniopharyngioma, Rather's cleft cyst, droid and glioma. Surgical evalnation recommended. In laymen terms, did I start bleeding from the tumor inside my skull? Pleasehelp me to understand. Im so scared. Thank you.
I had my first appointment with my endocrinologist today and nothing went as I hoped. He did not have the report from the Radiologist and he wasn't able to look at my MRI. Only thing he did was schedule me for blood test and urine sample. I'm so frustrated with not having any concrete info. Therefore, I went and pick up a copy of the report. It reads as follows,
1.2cm. Differentials considerations include macroadenoma with recent hemorrhage, craniopharyngioma, Rather's cleft cyst, droid and glioma. Surgical evalnation recommended. In laymen terms, did I start bleeding from the tumor inside my skull? Pleasehelp me to understand. Im so scared. Thank you.
There is no... normal. I had Cushing's and a prolactinoma which typically would mean zero periods instead I had nasty long ones.
Odd with no lactation - are your breasts hurting at least? I had full lactation out of both breasts. The rest of the symptoms I know many or most of my buddies had or have.
You need a neuro-endo no matter what. Get copies of your tests and check them out. If you have not had a full battery of tests you may not even have been tested for the other types of tumors. They may just test for the common things and not look.
Odd with no lactation - are your breasts hurting at least? I had full lactation out of both breasts. The rest of the symptoms I know many or most of my buddies had or have.
You need a neuro-endo no matter what. Get copies of your tests and check them out. If you have not had a full battery of tests you may not even have been tested for the other types of tumors. They may just test for the common things and not look.
The endo thinks I have a prolactinoma but I'm not sure. Is it normal to have one reach macro size without ever missing any menstruations? And I just started lactating... I'm not sure his diagnosis is accurate. I have so many other symptoms that I suffer from. I'm not just lactating, I'm dealing with depression, fatigue, no enervy, the headaches, the pressure, the leaking nose, dey skin, hair and eyes. No to mention the sensitivity to light.....
I didn't have the ability to have a conversation with him about what I've been going through. The nurse call and told me what I have and what medication will be on. I have call to schedule an appointment. I really want to see a neuroendocrinolgist and receive a second opinion. What do you suggest? Do you think I should? Thank you rumpled, I respect your opinion and I'm so grateful that you take time out of your busy day and respond. Thank you...
I didn't have the ability to have a conversation with him about what I've been going through. The nurse call and told me what I have and what medication will be on. I have call to schedule an appointment. I really want to see a neuroendocrinolgist and receive a second opinion. What do you suggest? Do you think I should? Thank you rumpled, I respect your opinion and I'm so grateful that you take time out of your busy day and respond. Thank you...
Panhyopit means all or most of the pit hormones are absent. I have one left - ADH.
Prolactinomas are known to be the most common and are very commonly treated with medications. I have heard a lot of people get the meds for them sometimes even when that is not their tumor.
If the tumor sits in certain ways - as in up around the optic nerves or down in the cavernous sinus, then it can be difficult to remove and parts are inoperable. It can also wrap around the carotids so you really have to know where the thing is. So it helps to read your report. Your tumor may have been really large to still be a macro after an apoplexy... most are tiny after that. You need an expert surgeon, one who has done many surgeries on larger tumors and knows what he/she is doing.
After surgery, the endo has to get involved more. I know my hormones have evolved over time. I have degraded over time. I have lost a lot thru surgery (my thyroid, adrenals, ovaries etc) but the pituitary hormones are also gone too. So I get very regular check ups and blood tests.
It does, IMHO layman opinion of course, be addressed, by an expert. Call up the universities around you. NIH in Maryland may be another option.
Prolactinomas are known to be the most common and are very commonly treated with medications. I have heard a lot of people get the meds for them sometimes even when that is not their tumor.
If the tumor sits in certain ways - as in up around the optic nerves or down in the cavernous sinus, then it can be difficult to remove and parts are inoperable. It can also wrap around the carotids so you really have to know where the thing is. So it helps to read your report. Your tumor may have been really large to still be a macro after an apoplexy... most are tiny after that. You need an expert surgeon, one who has done many surgeries on larger tumors and knows what he/she is doing.
After surgery, the endo has to get involved more. I know my hormones have evolved over time. I have degraded over time. I have lost a lot thru surgery (my thyroid, adrenals, ovaries etc) but the pituitary hormones are also gone too. So I get very regular check ups and blood tests.
It does, IMHO layman opinion of course, be addressed, by an expert. Call up the universities around you. NIH in Maryland may be another option.
Thank you for responding rumpled. He requested about ten different blood test and one 24 HR urine collection but he didn't require me to fast. I hadn't had anything to eat when I went in though and it was around eight. I'm not sure if I trust him because he stated he believe he can shrink it without seeing my MRI or the written results or any information pertaining to me. My first visit with was a dud. I found out more about my condition on my own. He didnt even give me a concrete appointment for my next visit. Told me to call on Wednesday or Thursday.
I found out the results after my appt and I became angry because based on my research, it states that it should be removed. And I too believe it is a non secreting tumor based on size. I think the size is the problem and not secreting hormones. I want it removed ASAP. I feel it, if that makes any sense. And the pressure, pain and other problems, I just want it to go away...
I think I may have had a pit apoplexy about 3 wks ago. I woke up to the worst headache/migraine ever. I was in the bed for two days barely moving. There is an Pituitary Center in Birmingham Al, I will make contact so I can get an opinion because I haven't even received a first yet.
What is panhypopituitary?
I found out the results after my appt and I became angry because based on my research, it states that it should be removed. And I too believe it is a non secreting tumor based on size. I think the size is the problem and not secreting hormones. I want it removed ASAP. I feel it, if that makes any sense. And the pressure, pain and other problems, I just want it to go away...
I think I may have had a pit apoplexy about 3 wks ago. I woke up to the worst headache/migraine ever. I was in the bed for two days barely moving. There is an Pituitary Center in Birmingham Al, I will make contact so I can get an opinion because I haven't even received a first yet.
What is panhypopituitary?
I am just a patient, but my best guess is pituitary apoplexy. It also sounds like you may have some other issues going on up there as you still have a macro-adenoma. You need to find a pituitary center. You need a specialist endo, not just any endo.
Find a center at a larger hospital or university hospital. If you only had one blood test and one urine test, then you are not being tested enough to determine the type of tumor. You need to get to a specialist who will know how and when to test. Did you get the blood test at 8am fasting?
In general, larger lesions are non-secreting (hormones are not an issue) and you need surgery) but after surgery, you need normonal support. But this is very complex. I know first hand. I am panhypopituitary myself.
Find a center at a larger hospital or university hospital. If you only had one blood test and one urine test, then you are not being tested enough to determine the type of tumor. You need to get to a specialist who will know how and when to test. Did you get the blood test at 8am fasting?
In general, larger lesions are non-secreting (hormones are not an issue) and you need surgery) but after surgery, you need normonal support. But this is very complex. I know first hand. I am panhypopituitary myself.
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