Help with high prolactin levels? Already under care of endocrinologist

[6yrsincounting]

Hi all

Was hoping for some advice or good news stories. My prolactin levels have been consistently high since I became aware that they were above normal threshold in 2017. I have been under the care of an endocrinologist since I was referred by the fertility clinic. Though I ham now onto my 3rd consultant and have moved hospitals I find that the care and lack of urgency is impacting everything else. Unfortunately my prolactin levels have been constantly over a 1000, with reading late last year being over 1400ml.

I have pushed to start a new medication, I’m now back on Cabergoline and had to argue with the specialist to start me on two 500mg tablets a week knowing that a couple of years ago being on one a week did nothing. I had blood tests again in January and they have gone down, though I have also had a 2wk holiday so this may have helped).

Last week I was told by the clinic that they were stopping my IVF treatment for 2 months until my prolactin levels had lowered. I am simply devastated, I found out the day before I was supposed to start taking the nasal spray after being on the pill. They want my prolactin levels to go down before they resume.

I’m devastated. The endocrinologist won’t increase the Cabergoline until I’ve done another blood test next month and keeps questioning why I’m going through IVF. He boasts that he will get my levels down and that he always starts at the lowest levels unlike other doctors, even though he himself has said the fact that my levels have been consistently high shows that i am more resilient (his words) to the meds. Just to say I have had 2 MRIs to check for tumours on my pituitary gland and they both came back clear.

I turn 39 this year and the CCG will not fund treatment once I turn 40. I feel like I’m running out of time and neither the clinic or the endocrinologist care, sorry this has turned into a rant but I honestly don’t know what to do. Any advice or thoughts appreciated

[Liv91]

Hi you sound very similar to me, I have had high prolactin always above 1000, had mri etc and under an endocrinologist. I was on cabergoline twice a week for just under a year. Id say it took 6 months on cabergoline until it was stable and within normal range, then I started IVF 6 months later and now have my 6 week old baby girl so there is hope especially now they’ve doubled your dose 👍🏽 Sorry the drs don’t seem to care, I felt the same at times 😩 xxxx

[6yrsincounting in reply to Liv91]

Thank you for sharing your story and your message of hope! I guess my concern is that even though I have been under a specialist since 2017 the lack of care or willingness to acknowledged that maybe the dose they are used to giving won’t work. I was on the highest dose of Bromoctiptine you can be on 30mg a day and it didn’t touch the sides. Just feel weary of the constant battle. You have given me a glimmer of hope though so thank you 😊

[DianeArnold Partner Nurse Fertility Network UK]

Hi. Has the endocrinologist suggested that you have an CT scan to check your pituitary gland? If the levels are persistently high you may need surgery on the gland - my thoughts. Perhaps a review of medication too?? Good luck! Diane

[6yrsincounting]

Hi Diana thank you for responding 😊 I have had 2 MRI and have had multiple reviews of medication. I’m currently on the 3rd endocrinologist and have moved hospitals to try get this sorted. I am now having to have blood tests monthly and have agreed with the endocrinologist that he will increase my meds next month if the levels are still not lowering. It’s just a constant fight and I was wondering if there was anything else that I could do to try lower my levels. I will enquire about a CT scan. Thank you!