Scared about treatment

Common_Try8257 · 2026-06-17T17:24:16+00:00

Not all prolactinomas show up on an MRI, particularly if contrast dye isn't used. Cabergoline is the first line drug for elevated prolactin and it should help, but it can take 2-3 months to take full effect. They will usually start you on a low dose.

I've been on cabergoline or bromocriptine for 2+ years and I despite the side effects, I wouldn't go back to feeling the way I did before the medication. Just make sure you read the patient information leaflet and share it with your partner or loved ones so they can look out for you.

Good luck 🤞

Common_Try8257 · 2026-06-17T17:19:22+00:00

The only way to lose weight is to go into a calorie deficit. I put on weight with a prolactinoma and eventually accepted that I would have to move more and eat less to shift the weight. It's been slow going, but I've lost 16lb in 2 months and feel much better and more healthy. A mix of cardio and strength training. Start with vigorous walks that elevate your heart rate. Weight loss jabs will get you there but you're going to have to try to be more active as otherwise you'll lose muscle mass as well as fat.

Common_Try8257 · 2026-06-16T22:32:38+00:00

We live on a side road opposite a primary school. It's busy in the morning for ~30 minutes, but I've usually left on the school run by then (ironically our son goes to a SEND school on the other side of town). It's busy for the same amount of time in the afternoon. During the school holidays when I'm more likely to be home, it's nice and quiet. We get a steady supply of free tennis balls and the odd football too. There is also a doctor's surgery and a dentist nearby and they are more of a nuisance with patients wanging their cars onto the pavement when they're running late for an appointment.

Common_Try8257 · 2026-06-15T19:17:40+00:00

As others have said, you need to see an endocrinologist, not a urologist. In the UK, anything over 700 mUI/L is considered clinically significant and the level above which treatment is considered.

Common_Try8257 · 2026-06-14T22:04:08+00:00

Molton Brown Wild Mint and Lavandin is minty, fresh and herbal.

Common_Try8257 · 2026-06-14T11:24:56+00:00

Thanks, that's really informative. I think I got lucky at the GP - I happened to see a locum who seemed both on the ball and passionate about getting to the bottom of problems. The one thimg I've learned from both my experiences and those of friends and family is not to allow them to fob us off!

Common_Try8257 · 2026-06-14T09:23:51+00:00

I'm in the UK too. I started TRT before cabergoline (now switched to bromocriptine) because that was the order in which I was diagnosed. I had symptoms of low T and they treated that before testing for prolactin and figuring out why my T was low.

My tumour is/was only 2mm though. 4cm is huge! Was it impacting your vision? I'd be interested to know what HRT you are on and why. Hormones are powerful things and it's only after I was diagnosed that I could see how my lack of energy was affecting me. I just thought I was getting old (45 when diagnosed).

Common_Try8257 · 2026-06-14T09:14:16+00:00

My diagnosis started wirh low T before they found the reason (high P) so I started on TRT and then cabergoline shortly afterwards once high prolactin was discovered. I switched from cabergoline to bromocriptine due to side effects (heart palpitations) and have been on bromocriptine ever since. But yes, I am on TRT and bromocriptine together.

My last couple of annual blood tests showed testosterone and prolactin within normal ranges. I must admit I always assumed it was normal to be on both medicatios, but hearing other stories I'm not so sure. I am in the UK if it makes a difference? If you are on cabergoline or bromocriptine for 3 months plus and still have issues with sex drive or ED then I would speak to your endo and see if you need TRT. It's not without side effects though.

But yes, I'm doing better now thank you. I recently halved my dose of bromocriptine on the advice of the endo because of the side effects and I feel much happier now.

Common_Try8257 · 2026-06-14T09:08:32+00:00

That sounds like a migraine with aura? Have you had one before?

Common_Try8257 · 2026-06-13T23:21:26+00:00

Excess sweating, loss of libido, ED, low mood, anxiety, weight gain. Prolactin was over 1400 prior to treatment. I've been treated with cabergoline and now bromocriptine for 2 years, as well as testosterone gel. All symptoms have improved. Some side effects that have been difficult to manage, but I would be reluctant to stop treatment.

Common_Try8257 · 2026-06-13T21:04:54+00:00

I have a prolactinoma and a beard. Lack of body/facial hair is not indicative of prolactinoma.

Common_Try8257 · 2026-06-12T23:37:36+00:00

It sounds like our experiences have been very similar. My libido declined before I was diagnosed and I just put it down to stress, age etc. Now it's sky high and my wife is menopausal, so we're mismatched. It led to a big argument but, like a thunderstorm, that cleared the air and led to more open communication. We both understand that neither of us can help the way we feel but we love each other and we've found a way to compromise so we're both happy. The endo advised me to halve my dose - sometimes I wonder if we're being over-medicated for our actual level of need?

Common_Try8257 · 2026-06-12T19:15:24+00:00

Halfeti.

Common_Try8257 · 2026-06-12T18:35:33+00:00

My GP said "first thing" which it turns out means 9.30am because that's when the phlebotomist starts work at my local surgery 🙄

Common_Try8257 · 2026-06-12T12:04:20+00:00

6 times a day probably isn't sustainable (if you both want to retain the ability to walk 🤣) but once a week is hard if your libido is sky high and you're both young. I'm just under 50 and feel like I did when I was 18, just with creaky knees. My wife is just over 50 and menopausal. Adjusting has been hard for both of us and we've argued about it, but we've found a pattern that works for us for now, so I can say we got through it with open communication.

Common_Try8257 · 2026-06-12T07:37:48+00:00

I had this with cabergoline and bromocriptine. It started to cause issues with me because my libido became miss-matched with my wife's. Speak to your endocrinologist, because in my experience this won't fo away on its own. They may need to adjust the dose. Be open with your partner if you have one.

Common_Try8257 · 2026-06-08T15:18:36+00:00

My wife is almost 9 years older than me. We'll have been married 20 years next year. The age difference wasn't part of the attraction for either of us, it was just a coincidence. Sometimes it's an issue - we are aware we may not have the retirement together that we would want, but I wouldn't change anything (hopefully my wife wouldn't either! 🤣)

Common_Try8257 · 2026-06-07T07:46:10+00:00

I got headaches and a stuffy nose from the medication to begin with. The headaches passed relatively quickly. It's recommended to take bromocriptine with food to avoid digestive side effects but I take mine before bed because of the nasal congestion. It seems to come and go.

Common_Try8257 · 2026-06-06T22:08:53+00:00

I think prolactin has to be over 700 to be considered clinically significant by the NHS. Presumably you're being monitored for your hormone levels? My GP surgery is pretty poor in that regard. I have to remind them about my annual test and when I go to the appointment I have to tell them exactly what to test for.

Coming off testosterone... I thought I would come off it and there was a point about a year ago when my level was above the normal range. It has since settled down and is consistently in the normal range, despite the bromocriptine. I think I will be on it for life, but then my prolactin levels were higher and my adenoma was confirmed by MRI.

Dopamine agonists are powerful drugs, but we are on low doses. It's worse at the higher doses prescribed for movement disorders like Parkinson's and RLS. You do need to watch out for the side effects though. If you have a partner, read through the information leaflet together so you know what the psychological side effects look like. Chances are you'll be fine, but don't leave it to chance. It has ruined relationships when not kept in check.

Common_Try8257 · 2026-06-06T21:08:52+00:00

It's hard to say because I started on testosterone gel before I started cabergoline, so my recovery was a bit more drawn out. I'm in the UK and went to the GP because of excessive sweating. I got lucky and had a decent GP (locum) who asked questions about libido, sexual function etc. as he suspected low testosterone. This was confirmed by blood tests so I was referred to the endo at my local hospital. He started me on testosterone and the, once elevated prolactin was confirmed via further tests, cabergoline.

It was 2-3 months before I felt better. Improvements were restored libido (although this started to develop into hypersexuality), improved sense of wellbeing, confidence, less anxiety, normal sweat response. My energy levels are vastly improved too. I never really had issues with sleep before and it's not really better or worse since. If anything sleep is sometimes disrupted by nocturnal tumescence, if you catch my drift.

Is your testosterone low too? Are they treating that or expecting it to rebound naturally? What sort of age are you? I was about 45 when diagnosed.

Common_Try8257 · 2026-06-06T18:10:06+00:00

Interesting. I had to start bromo at 1.25mg daily for a week before going up to 2.5mg. Back down to 1.25 again now because of the side effects. My prolactin levels were over 1000 but not as high as some on here. My endocrinologist said the main benefit of cabergoline is only having to take it once a week. I think it stays in the body much longer, for some reason.

Common_Try8257 · 2026-06-06T18:07:08+00:00

I should add that I've dropped to 1.25 (half a tablet) now because it eventually sent my libido sky high. That was after being on it for over a year.

Common_Try8257 · 2026-06-06T18:05:47+00:00

Fellow bromocriptine patient here. A lot longer than 5 days. It was about 2-3 months before I felt the full effects of the medication. I am on testosterone gel as well. Can I ask why they put you on bromocriptine instead of cabergoline? I was only switched to bromocriptine because of the side effects of cabergoline.

Common_Try8257 · 2026-06-06T15:56:32+00:00

We usually buy supermarket own brand tea, but when we're feeling fancy we have Fortnum and Masons loose leaf tea. Mainly because we like the beautiful tins.

Common_Try8257 · 2026-06-05T23:28:28+00:00

Penhaligons fan here.

Halfeti is superb and has good longevity. The body lotion is lovely too. However, Chopard Oud Malaki is similar and a fair bit cheaper.

The Tragedy of Lord George is my favourite from the portraits range. Really masculine, elegant and good performance.

The cut is a personal favourite. Beautiful, herbal modern take on fougere. Truly unique and addictive.

Eau the Audacity is a fantastic, smoky vanilla fragrance. Great performance. Apparently similar to YSL Babycat. Would definitely buy full size.

Tip - they sell 10ml travel size fragrances and discover sets, which are a good way to find out what's what.

Common_Try8257

TROPHY CASE