Recently diagnosed with Hyperprolactinemia. What to expect?

[Bmat0070]

26 y/o female, I didn't have my cycle for 3 months so I went to the Dr and they check my prolactin. Levels were high so my dr referred me to an endocrinologist. She put on a medicine to shrink the tumor, incase there was one, told me to make an appointment for an mri and to come back for a follow up. The Mri had not been done yet by the time my follow up appt. She rechecked my prolactin and told me i was fine and canceled my mri. She told me to come back in 6 months. During this 6 months I didn't have 1 regular period. But my headaches had gone away. About 1 month before my follow up I started getting severe headaches and missed a period. I just had my follow up a couple days ago and my Dr is rechecking my prolactin. I just found out the last time it was checkedited it was 'boarderline' so she cancelled the mrI but this time if it's borderline she'll have me get an mri anyways.  Some new symptoms this time is nausea and dizziness.  I'd if that matters still have the headaches and irregular periods.

I guess my question is.. what questions should I be asking my dr? I have really bad anxiety over this. I don't know what to expect. I also read that this can cause infertility.. was wondering what the chances of that happening are and if it's a permanent thing? Any advice is appreciated. Idk if I'm leaving any information out. Feel free to ask.

[rumpled]

Your doctor is sadly very inexperienced...

I would get a second opinion IMHO. I will tell you why. First, raised prolactin can be for several reasons but they have to be investigated and to just put you on meds first is not the best path as now you can't determine the reason and the reason is very important to know. It can be thyroid, illness or the prolactinoma. The fact that you are still having symptoms means the doctor did not treat you adequately.

The medication is also something you have to take forever, so you really need to know if you really need it so the MRI (a proper dynamic pituitary MRI) is really needed to know if you want to be on the medication and you may need a pituitary center to monitor you and your medication.

Anxiety is actually a symptom of the tumor. Please get copies of your testing (always get copies of everything), and get another opinion.  

[cmropen]

Hey Bmat, hang in there. Please track your symptoms and let your doctor know about all of them, including the new ones that have developed, asap. If your endo is a pituitary specialist, that's great, but if they're not it might be worthwhile seeing one since they can focus on all the symptoms collectively rather than treat them individually. Maybe try the Pituitary Network Association.

As for some questions to ask, here are some ones to start with that are suggested by Mayo Clinic:
• What caused my hyperprolactinemia?
• What tests do I need? Do they require special preparation?
• What are my options for treatment? What treatments are available, and which do you recommend?
• What are the advantages and disadvantages
of each treatment option?What side effects can I expect from treatment?
•  If I have surgery, will the prolactinoma come back?
• Will I have long-term side effects from my
condition?
•Will I be able to have children?
•Are there brochures or other printed material that I can take? What websites do you recommend?

Hope this helps, and best wishes to you. Keep us updated.