Any success on Clomid with Macro-Prolactinoma?

I was diagnosed with a Pituitary Macroadenoma in May 2012 (2.5cm and prolactin level of 1000).  Since then I have taken Cabergoline with great success.  My latest MRI in September 2012 showed the tumor shrunk 50% (though it is still considered a macro) and my prolactin level is now 18!  My endocrinologist and neurosurgeon agreed that it's a safe enough size to pursue pregnancy now but unfortunately I still haven't had a cycle since April.  After seeing a fertility specialist he says it's unlikely that clomid will be able to stimulate ovulation and likely that IVF will be needed.  Is there anyone out there that has had a similar story and has had a successful pregnancy (possibly with the help of Clomid)?

[rumpled]

Is your endo a neuro-endo? It could be that other hormones are also off - so in addition to the prolactin, other hormones can be contributing to the lack of period.

It will be a higher risk period as you will have to go off the anti-prolactin meds for a time and the tumor can grow - but you can be monitored for it. However, why are they not doing surgery for the macro? In normal terms - tumors that size are removed if they are that size.

Once the tumor is removed, your risks should be reduced and you will be on other replacements (ie thyroid) anyway. So why are they not removing such a large tumor? I would get another opinion on the tumor and get a very very experienced surgeon. You need to see a neuro-endo.

[Tiff2323]

Well to be honest the surgery really freaks me out so when they gave me the option of trying the meds I wanted to give that a shot. I am in Atlanta and did see both a neorosurgeon and endocrinologist at the Emory Pituitary Center.  He is a very skilled surgeon and specializes in this surgery but I still wanted to avoid having surgery if that was an option.  He recommended doing the surgery but admitted that there was a part of the tumor he would not be able to retreive so I would have had to take the meds after surgery as well. Wanting to have kids, the surgery made me a little nervous that it could jack up the pituitary in other ways and cause additional fertility issues.  Even though he originally recommended surgery he did agree when reveiwing my repeat MRI that the meds were successful at shrinking it to a safe enough size and since it does not cause any headaches or other issues, it is ok to live with it at the current size.  I have had my other hormone levels tested and all are normal except for slightly low estrogen.  They are pretty certain that the tumor is basically blocking the "communication path" between the pituitary and the ovaries. There is no guarentee that the surgery would even fix this so I am ok with trying other fertility methods rather than doing the surgery.  Even though I would have to come off of the cabergoline during pregnancy, these tumors are very slow growing and they don't feel there's too much risk since it is a safe distance from my optic nerve now.  Hopefully these are the right choices but only time will tell!  Also, a second neuro surgeon from a group in TX advised that he always tries the meds as first line of treatment for prolactinomas now (no matter the size unless there has been vision loss).  He was surprised that I was considering the surgery without trying meds first.  Have you heard different?

[jstew645]

Congratulations on the truly great progress you have made with the tumor.  I was really interested in what you had to say because your situation mirrors my own.  My pit tumor (diagnosed in Sept.) was almost the same size as yours and my prolactin level was 850.  This is also now down to normal.  Docs put me on 5 mg. of bromocriptine a day.  Curious to know what your dosage was of the cabergoline?  Is it safe to say that the 50% shrinkage of your tumor is an indication that it is benign because that would seem to me to be the case?

[Tiff2323]

Thanks! Yes, I guess we're the "impressive ones" with prolactin level exceeding 500- lol.  For the first 4 weeks I took .25 mg (half a tablet) twice a week.  Then I moved up to .5mg twice a week (whole tablet) for 2.5 months (this was all from June - September).  After I had my repeat MRI and lab results and they found my level was down to 18, she recommended trying going back down to the .25 twice a week to see if it helped with the swelling and stiffness side effects that I was experiencing.  However, I just had blood work to check on my level and it's up to 29 now so I'm trying to find out if I need to go back to the .5 dose.  When first finding the tumor both Drs said these tumors are benign 99.9% of the time.  I am not sure they'd be able to say they're 100% sure without confirming with a biopsy but I feel the 50% shrinkage further shows that this is a prolactin producing tumor on the pituitary and nothing more.  When does your Dr want to do your repeat MRI- after 3 months?  Please keep me posted on the shrinkage results of the Bromocriptine! I've heard both are often very successful!

[rumpled]

I thought you had taken meds to reduce the size and it was still that large. It is very normal to take meds first then surgery. Always the least invasive treatment first.

I had the surgery - it does seem freaky - but in the end it was one of the easiest surgeries I had and I have had a dozen. The pituitary does not like to be wacked about and so it can be unhappy after surgery and some loss of hormones can happen.

I hope you both stay on the shrinky-dink path.

[jstew645]

Am scheduled for another MRI in January and this time will insist on a dynamic pituitary scan MRI.  Am thinking the second radiologist's report just didn't spot the tumor as I can't believe it is totally gone.  But I am having some new symptoms of pressure in the ears and small amount of bleeding from the nose.  Not sure whether or not this is a side effect from the bromocriptine.  Saw an ENT today and he ruled out mastoiditis which is what the radiologist thought I had.  Tiff2323, I think we are at the mercy of our doctors and they are sometimes good and sometimes not.  Have learned more from rumpled and yourself in this forum than I have learned in months from my PCP!

[rumpled]

I do believe that, sadly, general doctors are not taught much in school about pituitary tumors or even endocrine disease. They think size is a factor in the lesions when it is the hormonal action that is the major factor.

The endocrine system touches every system in the body - yet it seems like it is the last thing tested or only lightly or badly tested. I know what I know only after years of bad treatment and getting help from other patients my self!