Where do I go next

[Cheryl1010]

I am fourty years old and I was just diagnosed with a 5 mm pituatary tumor in the left base of the gland. I have been very sick for 4 years. All starting with a headache that I have had everyday for the past 4 years. I have had wacky bloodwork that showed elevated sugar levels with no symptoms on my part, supraventractical tachacaradia where my heart rate is at a testing rate of 99 to 110 and goes up to 160 in my sleep, I had menstral bleeding that never stopped no matter what hormones were given or surgeries performed until I had a hysterectomy last year. I had a Mamogram in October that led them to check my prolactin levels and there is was evident for them to do an MRI.  My OB has  me on bromocryptine now and didn't reccomend me to go anywhere else to have anything checked thus far. Even when I told him that at one point through this hunt I was tested for a pheocromocytoma which came out negative. I'm looking for a next step to be proactive in this.  

[Daniel M Prevedello, MD]

Dear Cheryl1010

14.3 is a normal level of prolactin. The MRI is the way to go to differentiate the cysts from adenomas. Did you have your MRI done?

[Cheryl1010]

Wow. Now that's something that hasn't been mentioned. How would a doc know if it was a cyst or a  adenoma?  My prolactin was only 14.3.  And the endo tested for the other hormones  on Wednesday.  I have other posts on here that give more history as well.  I am a mess.  

[Daniel M Prevedello, MD]

Dear Cheryl1010

Sorry I was not able to asnwer you earlier.
Do you know how high was your level of prolactin? There are some situations that there is no prolactinoma, and only a rathke cleft cyst, which can cause headaches and also elevation on prolactin (called stalk effect).

The treatment for rathke cleft cysts causing symptoms is surgical resection.

I can review your data and MRI free of charge if you want.

You could send it to:

410 W. 10th avenue
N1011 Doan Hall
Columbus, OH
43210

Thank you

[Cheryl1010]

So I sent a copy of my MRI on Friday to the neuro endo I saw in February who thought I had a pheo. The nurse told me she would look at it and see what had to be done next. And I never heard back. Is this normal or is it a sign that I need to find another doctor? I am on bromocryptine and I am having a rough time with the side effects which apparently are normal. I don't even know what kind of tumor I have other than knowing I have have high prolactin. Can anyone recommend a doctor in the central jersey area? Help.

[Cheryl1010]

Thank you'. That's what I thought as well.  

[rumpled]

Please go see a neuro-endo and get treated at a pituitary center, not by a gyne. Gynes are super nice, but are not skilled enough to treat a pituitary disorder.

The next step is to find the proper set of doctors to get the right treatment and always get copies of everything!