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Cabergoline Treatment for Macro Adenoma

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ej09552
ej09552

Have non functioning macro pitutitary adenoma size 12 mm with prolactin levels 2500 -3000. The tumour was diagnosed via MRI scan following elevated blood tests for prolactin. Was being monitored for extremely low iron anemia when the prolactin test was inadvertently requested.Have had extremely severe headaches believed to be migraine now considered to be caused by tumour. Started cabergoline 025 mg taking for two weeks. Side effects mainly feeling almost faint, heart palpitations, feeling constantly tired , irritable and headache. Do side effects reduce over time or get worst.? Had update blood test so will find out if any change to prolactin levels?

0 likes, 7 replies

7 Replies

  • sheryl37154
    sheryl37154 ej09552

    Posted

    No side effect for me - it was a relief of the issues the prolactinoma was causing immediately.  Iron supplements can be problematic.  Take vit C to increase your iron uptake.  An Iron Studies test is vip to evaluate what is actually happening with your iron.  It includes serum iron, ferritin iron, TS% and TIBC.

    Also a copper test might be useful.  Excess copper reduces ferritin iron.

     

    • ej09552
      ej09552 sheryl37154

      Posted

      Thanks Sheryl for your suggestions and  sharing  your experience.

      I have recently started taking  vitamin C to assist the absorbtion of  Iron supplements. I've had a real struggle in maintaining adequate irons levels although things have improved ( ferritin) since having an iron infusion.  I am hoping  to see an overall improvement in my health now that pit tumour has been discovered and treated.  Its been such a long haul trying to keep on top of everything  through numerous hospital visits ,blood tests,scans and feeling total drained.

      Thanks    

    • sheryl37154
      sheryl37154 ej09552

      Posted

      How different we all are.  My prolactin went up to 4000+.  I got such relief from Cabergoline and I have been on it 7.5 years now.  Whenever I try to reduce the dosage, the symptoms come back.  My endo says there is no problem staying on it long term/forever.  My adenoma did decrease.

      I have haemochromatosis, which can cause pituitary gland problems.  All these things may make the medication interact differently.  After diagnosis, I was put on calcium channel blockers for a short time for arrythmia and that made my prolactin level skyrocket too.  This was known by the cardiologist, and he should not have prescribed this.

       

  • Bellaboo1
    Bellaboo1 ej09552

    Posted

    Hi

    It can't be non functioning if you have high prolactin levels! The non functioning type don't produce any excess hormones so I would check this with your doc/endo if this is what you have been told. As for the cabergoline, stick with it as the side effects do subside. It took me a few goes over the years to eventually keep going with them.

    Good luck

    • ej09552
      ej09552 Bellaboo1

      Posted

      Hi Bella 

      thanks for your reply its much appreciated. I think you are correct, I was confused when i received letter stating " non functioning" as endo had said it was macro ademona  with hyperprolactinaemia due to pituitary stalk effect. Probably typing error ! if you dont mind me asking  has your tumour reduced ?  Im also worried about having to  take cabergoline indefinately as I really want to be able to return to work ( managerial post in quite stressful environment.)

      Thanks again, for sharing your expereince with  cabergoline.

       EJ.  

    • Bellaboo1
      Bellaboo1 ej09552

      Posted

      Hi EJ

      I don't know if my tumour has reduced but my prolactin level has. I think at the highest it was around 2500. I have been on and off cabergoline since I was 24, I'm 45 now, and also tried quinagolide and bromocriptine. All the meds made me feel nasty and sometimes moody and aggressive. I went on for years with no medication and no periods until around two years ago I was looking for information online about prolactinomas and depression. There is a lot of scholarly info stating the problems I was having mentally with the tumour, depression and social anxiety, which I still have. I've found over the years that my doc and endos that I've seen haven't really been that helpful. They just pass me the scripts and send me on my way. But 2 years ago another doctor said depression can go hand in hand with prolactinomas so I started on the cab and my periods returned after a couple of months, I did feel awful for a while but I was determined to stick with them this time as not having a period for 20 years isn't good for your bones. My level is at around 400 now which is ok, it could take years for the tumour to shrink, I know if I miss a few doses my level can go back up in no time. You will feel better if you stick with them, it won't take long I promise.

      Bella

  • sophie58663
    sophie58663 ej09552

    Posted

    When I first started Cabergoline it would knock me out for days, I now take it twice a week and have no side effects from it.  

    The Pituitary Foundation is also a helpful group - http://www.pituitary.org.uk/

     

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