1st endo appt: any ideas for questions?

[mom98]

I am going to my first end appointment on Monday. I am a bit nervous. I had a MRI of the brain with contrast that showed an area of hyperactivity in the pituitary area measuring 8mm. I went to a neuro for other findings on the MRI and have since had additional lab work and a MRA of the brain. She tried to get a MRI of just the pituitry but my insurance denied it since the original MRI showed the hyperactive area. I have gone ahead and listed the symptoms I have been experiencing but now would like to have some questions for the endo. I am at a loss as it wasn't said to be a tumor and the neuro stated it could be just a "plump" pituitary (she also saidd she knew nothing about the pituitary).
My symptoms include: joint and muscle pain and weakness, double vision, increased anxiety and mood swings, fatigue, difficulty sleeping, weight gain, headaches (keep getting worse), irregular period. I also have noticed increase in facial and body hair (I am FEMALE!) but kinda thought this might be due to age (33). If it is a tumor, are there alternatives to surgery that I can ask about? Anything to alleviate symptoms? What should I ask about his experience? THis MD is supposed to be a specialist in pituitary but the site doesn't specifically call him a neuro-endo. Anything would be helpful!
THanks in advance!
Shannon

[rumpled]

Have you called the surgeon re the pain?

Is she bending over, using straws?

Is she having any discharge, clear sweet discharge? Does she feel better lying flat, or after a caffeinated beverage?

Some pain is kinda normal, not a lot though.

[brokhilval]

My daughter is 3 weeks post transpheniodal surgery. She is having head pain daily. Says she just doesn't feel like herself. Pathology was incomplete as to what kind of tumor she has/had. They could not remove all the tumor..Would have had to take the whole gland. Dr. said he drained cyst pressing on optic chiasm. She is taking prednisone 5mg. every day and has appt with endo next week. We live right outside of Philadelphia..so her surgery was done at Jefferson by a neurosurgeon who specializes in pituitary tumors. Assisted by a neuro ENT. I just worry about the pain she is having now..

[steph9803]

@mom98- I would look for a different set of doctors too...I found I had a tumor behind my pit gland and within month had several MRI's and CT's, appt's with neurosurgeon, opthamologist, and endocrinologist. The fact that you are having symptoms seems like it should trigger a faster response from them.
ps- the two ladies above are the best source of info I've found and they are very knowledgeable and have been very helpful

[rumpled]

It is always best to go with a full complement of tests - let us know how it goes but NOV? Keep hunting and see if something else comes up. Use the links I have under the health pages.

[mom98]

Thanks for the info. I am looking at Penn Med in Philadelphia. It's a bit of a hike but there is nothing closer. I will try to get the appointment for end of Nov that way I'll have the labs, eye doctor and pituitary MRI results to take with me.

[rumpled]

No follow up! Yeah, Find another doctor and get some hormone testing at least... sounds like an endiot...

[horselip]

The rupture:
I had the worst headache in my life and it came on suddenly a few weeks after I started taking Bromocriptine. I thought that I was having a stroke. I was in the fetal position vomiting because the pain was unbearable. My husband picked me up which was no small feat given that I was 265# at that time and he rushed me to the ER.

We already knew that I had a pituitary adenoma. At that point in time it was thought to be a prolactinoma. I was put onto Bromocriptine after Cabergoline did not work to bring my prolactin levels down. At the ER they did a CAT scan and I was admitted into the hospital. They next day the surgeon went in and pulled out what was left of the Rathke's.

Since that moment in time I have had a headache. I also suffered from the complication of a CSF leak after my surgery. Whether it is all connected or not? I dunno. My current docs think that this was what caused my headache that I have now had since Jan 2006.
Also I'm panhypopit now and have Diabetes insipidus which many pit patients do not get. Rathke's tend to be wedged between the two lobes of the ptituitary gland. So if one ruptures they tend to cause more damage to the posterior lobe.

I assume that I do not make oxytocin either...maybe that's why I don't care for kids :) This is a hormone that they don't replace. This pisses me off!

Get yourself to a good pituitary center. Your doctors sound like pit-idiots.
xxHorselip

[mom98]

I needed that little giggle I got from your last comment! If I don't laugh, I'll just start crying. I feel like I am playing the waiting game. Wait for an appointment with neuro, wait for an appointmnet with endo, wait for tests, wait for results, wait for follow ups (if they even want a follow up), and now wait and see...
Thanks for the heads up on your situation! I am glad to know more info on this. I just am confused how it could show up now and not on the previous MRI. I got the impression it was from birth. Which if it is from birth and didn't show up on the previous, does that mean it is now growing? Endo kind of blew that off. He said most likely would not even need to consult a neurosurgeon. That in most cases in won't grow. I am all for removal, especially in the hopes that my body returns to normal. I feel so unlike myself...What were the symptoms of the cyst rupturing, if you don't mind me asking?

Again, thanks for the heads up and the laugh!

[horselip]

FYI I had a Rathke's. Mine decided to blow up shortly before a scheduled surgery to remove it. That little treat, in itself, made my situation worse. It ends up that mine was one that would expand and contract in size. When it was larger it would cause more probs.

I urge you to contemplate surgery if it is causing hormonal problems already. Mostly to be a step ahead of the bugger and so that you do not face pituitary appoplexy like me.

oh, I believe that you are being told to run along too.

xxHorselip

[mom98]

Thanks for your comments. THe appointment was much shorter then I expected, LOL! The endo stated my hormone levels were fine except a low growth hormone level. We will be doing an am cortisol level and a 24 hr urine. He thinks it is possible that it is a Rathke's Cleft Cyst, I looked this up and it seems to be from birth, I had an MRI in 2003 and it didn't show up? He gave me a script for a follow up MRI of the pituitary for 6 months from the previous MRI of brain (so mid Novemebr). No follow up appointment needed.
That's it! Pretty much, I have a mass but we'll see... I hate medicine! I'm a nurse and find this whole process annoying, stressful and unproductive! Why is it so hard?!?!?! I feel like I am being patted on my head and told to run along!

[horselip]

I think that you are on the right path for now. I would bring in that list of symptoms to the appt. Ask the endo directly about his/her experience with pituitary patients.

Right now you are looking to find out more about what is happening with you hormonally to see if the adenoma is a secreting type or not. It may be that over half of your symptoms are due to a hormonal problem that can be corrected.

Also they are looking to see if the adenoma, if not secreting is causing hormonal probs. These are the things once better known will help you and your docs to figure out if surgery is the right way to go or not.

Good luck
Horselip

[rumpled]

Yes, neuros know nothing about the pituitary.... sad.

There is some difficulty in finding a neuro-endo - the best way is to go to a pituitary center at a university or a place that actually had pituitary in its name. A lot of endos will say they *treat* pituitary but in reality know very little (being nice here!).

You do have symptoms but an inexperienced doc will eliminate a few of them like headaches and all.

Some tumors can be treated with medications - some require surgery at this time. So, you know what type of tumor it is - you have to get a lot of testing to know. You should also see a neuro-opthamologist so your eyes can get checked.

Some docs want you to lead, some do not - but I typically bring pics to show changes, labs and a list of symptoms. Right now you are looking for testing and you should ask for that IMHO to figure out what is going on.