Any success on Clomid with Macro-Prolactinoma?

[Tiff2323]

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)?

[bellawest89]

firstly im really surprised with a tumour that large your prolactin levels were just 1,000 mine was 1.1cm and mine were over 5,000 im 32 yrs old now it was first found 4 yrs ago when i started to lactate i also have pcos and under active thyroid disorder which was caused by lithium treatment in my teens anyway i havent succeeeded yet in pregnancy but with a combination of letrozole 5mg and clomid 100mg for 5 days each from cycle day 3-7 ive successfully ovulated for the first time in many years im about to start my second round but this time will use a hcg trigger shot once follicles' are measuring 18mm this will give me a higher chance of conception and a 36 hour fertile window to remove the guess work i dont personally see why it wont work so i wish you the very best i dont think clomid alone however will be enough and the letrozole has much better birth rates compared with clomid anyway so id  be asking for duel treatment best wishes

[hannielle]

your story impress me.i have been married for 7,5 years now no child.after going from one gynacologist to another results showed that i had amenorrhea,hyperprolactinaemia and bilateral dytrophic ovaries which i did not even understand the meaning.i got discourage.recently i had serious headaches and i met a neurosurgeon and an endocrinologist,after a ct scan it was revealed that i have a macro adenoma 17mm, with a prolactin level of 7048.i was put on dostinex , by the end of the 4th month i had my menses return after 6years of no menstruation,the prolactin level dropped to 58, 2months after i started looking for a pregnancy to no avail,now i don't know whether the return of the menses could have solve the problem of the dystrophic ovaries . i need your help my husband is really pressurizing me on us making children.

[Holly3336]

Hi Tiff! I saw your post when I was researching prolactoma tumors and fertility. I am so excited that your IVF worked! I have had amenorrhea and was diagnosed with PCOS. After going to my RE and starting fertility treatments with no success, she recommended an MRI. I found out today I have a macrotumor on my pituitary gland. I am very concerned about being able to conceive. I have tried Clomid and Femara with no response. Did you RE recommend IVF or did you try IUI first? Do you think it would have been possible to get pregnant without IVF since having treatment on your pituitary?
Also, I live in Atlanta too:) I read Emory is the best place to go. Please let me know if you have any RE or doctor recommendations. Thanks!
Holy

[Tiff2323]

Hi! I never saw your post until now.  How did everything work out for you?? Are you still in Atlanta? I ended up having a natural pregnancy right after a failed IVF transfer to try for our 2nd child. My daughter is almost 8 now and the natural pregnancy resulted in our son who is now 4. I hope you were able to find the right meds and doctors. Sorry I wasn’t able to help!

[Tiff2323]

I also saw a fertility specialist that my endo recommended and have had great results!  I did not end up having response to Clomid (the cheap and easy route that I was hoping for) but we did have a successful IVF cycle!  As long as you have eggs in your ovaries and are only not ovulating, the meds you take during IVF signals the ovaries to ovulate so you are no longer relying on your brain/pituitary to provide that function.  Once you become pregnant they will give you estrogen and progestrone to take for the first 12 weeks to supplement the hormones that your pituitary may not provide on its own.  Then once you get to 12 weeks the placenta takes over and provides all of the hormones the baby needs and you will most likely stop the supplements.  We started the IVF process October 2013 and I am 4 months pregnant now!  We also have 3 other embryos that we were able to store to have more children in the future!  There are several tests you'll want to take before spending on IVF (they'll check the shape of your uterus, make sure your tubes are open, etc..) but if everything else checks out as being safe and able for children then it seems it should be a successful option for you as well.  If you have any other questions let me know.  There may be other things you can try first but I hope you find some comfort that IVF can be successful for people with our condition.

[rumpled]

Was your endo a regular endo, or a neuro-endo at a pituitary center? If you have a pituitary tumor, you should see a neuro-endo, as they have more training and they may be able to do more testing and be able to interpret the testing better.

What kind of tumor do you have?

[Jme34]

I have a tumor that is resistant to all the medications. The size is small and my only issue is fertility since I don't ovulate. My husband and I are going to a fertility doctor at the recommendation of my endocrinologist. Has anyone had a similar experience and had success getting pregnant with fertility medications?

[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!

[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 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.

[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!

[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]

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?

[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.