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