Hello Eveningart ,

I recently went off cabergoline, and all of my symptoms came back within about six months. I would say the only thing you really need to do is pay attention to your body. My side effects when prolactin is high are very pronounced ( anxiety, weight gain, fatigue, loss of cycle). I would just make sure you are keeping up with checkups and paying attention to how you feel. Best of luck!!

Thanks for your reply jesdoit7! I've just come back from a consultant check-up after 5 weeks off of Cab - and so far my prolactin levels have remained in the 'safe' zone - at 350 ish (apparently 500+ is considered to be getting high - and 1000+ is where you start seeing loss of cycle etc)

Anyway - they're keeping me off Cab for now and I'm getting blood tests every few months for the next year - and in the mean time I'm to keep an eye on return of symptoms. Fingers crossed they'll stay away :)

Hi I was diagnosed with a prolactinoma in 1999, up until three years ago I was on Bromocriptine then swapped to cabergoline. I was supposedly put on a drug Holliday as they call it here in the UK, three years later, and I'm still on a drug Holliday, no Meds. I understand that normal prolactin levels are between 25 and 100, mine stands at 780, but my endo informs me that treatment Dosnt begin until it reaches 2000. They do not appear to take notice when you say that you don't feel well. I have most recently had an MRI scan, but was told simply nothing's changed, whatever that means. Everyone who has contacted me, even someone from Jamaica is suprised that at my levels I am not taking medication. I can only assume you are in the USA, if so I would be great full if you could please let me know at what level does treatment start there.
Thanks.
Keith Rennie

Forgot to mention, that I feel I did have withdrawal symptoms, mine where mainly mood swings, aches and pains in neck and shoulders and hot flashes on my face. But according to my endo, and I have seen six in total, you don't suffer withdrawal symptoms. Even my endocrinologist specialist nurse, who at the begining, used to say it was of his opinion I should have been on medication, change his mind stating it's not treatable until the levels have reached 2000. If I didn't know any better I would say they have ganged up on me, as other hospitals in the area, and even my own GP, say treatment should start at above 300??.
I am interested to know what outcome you achieve, and wish you luck in your endeavours to find a solution, I have most recently joined a new medical practice and hope I have more luck here.
Keith Rennie

Hey Keith-

sorry to hear you're having a tough time of it. To answer your question- I'm in the UK. I've been told that normal levels are up to 400 - 500. Above that things get a bit interesting and above 1000 you're looking at a return of hormonal imbalance side effects- the female ones being lactation and periods stopping. Endo's don't seem to recognise any other side effects to this condition, which is nuts- because if you join any support group, you'll find 1000s of people all with the same issues- mood swings, hot flushes and all sorts of other things.

I'm not doing too bad having come off the drugs- but I get my next set of tests next week. I've been told they won't put me back on unless I go over 1000. I was at around 300 when they took me off. I do have a return of some of the side effects- so we'll soon see!

I can't recommend much apart from requesting regular prolactin tests so you can keep an eye on your own levels. Also- there's a really active support group on Facebook "Prolactinoma Support" - it's a closed group so you have to request to join- but they know an awful lot between them and are very supportive. Good luck!

Hi thanks for your reply,
My endo won't treat myself until I reach 2000, by then I would think I would be feeling quite ill .My concern is, that other hospitals in my area, and there are four seem to treat at differing levels, I have asked the question why is this, but can get no real answers, three years ago I asked the question why, still I'm waiting for answers. One endo actually said to me, and I quote, we don't know everything. I have recently became a patient within a new medical practice, which I intend to do exactly as your suggesting, and request regular blood tests, as my appointments at hospital are carried out annually, which is concerning sometimes, as I know, that quite a few GPs don't fully understand pituitary tumors, I have had one GP who was very honest with me, when she told me, she didn't understand pituitary tumors, nor the medication that is used to treat them.
Once again, thanks for your reply.

Both my endocrinologist and my gynaecologist have instructed me to reduce my dosage and both tell me there are no side-effects associated with that. I simply don't believe it. If I don't have my same dose, on the same day, I feel it. I am gradually lengthening the time between doses.

I think we should all aim to be on the lowest possible dose for our own bodies +prolactinomas, given the possible negative side effects, but from what I understand, its only when the MRI no longer detects signs of the adenoma that medical treatment can be withdrawn on a trial basis.

Perhaps the assumption is that prolactinomas don't pose a medical threat to patients and might be less harmful than the treatment. Doctors seem to focus on hard fact such as possible blindness and infertility and almost discard the psychosocial and mental health aspect. Keep looking for the right doctor and that might mean in private practice.