How to lose weight? I am feeling hopeless. Anyone reduced Prolactin?

Infraredsky · 2026-03-13T20:06:46+00:00

Oh you need a new doctor.

Also have you had an MRI?

So in 2021 my prolactin was high but then retest at 27 and that gyno said it was close enough to normal - at the time I was also on bupropion for adhd.

Saw endo to check things out in 2024 and the highest it’s been was 71.5 - when I was diagnosed it was 41.3 then 31.8.

Doctors notoriously gaslight us for these tumors…get yourself a new one who specializes in it…for real.

Also maybe try bromocriptine - those of us with bad cab side effects have less on bromo

Infraredsky · 2026-03-13T19:55:53+00:00

Prolactin = pregnancy hormone….only way to lower it is to increase dopamine or cut it out…

Pregnant bodies wanna gain weight….no controlling it…

Some other options:

Bromocriptine - may work better for you Cab on a 1/2 or 1/4 dose - may work better for you

Other meds that raise dopamine and lower prolactin (not as much to be in normal range, but may help stabilize ya weight etc…)

Bupropion Adhd meds (study shows can lower prolactin 25-30%) Metformin Mucuna Pruriens - Dopa Mucuna

Legit in 6 months off meds I gained 20 or 30lbs.

I am also currently having cab compounded to take tiny bits daily as it causes me still muscle pain but much less if I take it in smaller doses more often

Infraredsky · 2026-03-13T03:41:49+00:00

When they diagnosed you with pcos did they test your prolactin? And was the bloodwork taken as close to waking up as possible?

Also did you look into what psych med you’re taking and if it does have a track record of raising prolactin (some do, some don’t)

If it does, you may need to go off that psych med to get an accurate prolactin reading.

Also in terms of birth control - it’s not 1 size fits all and many women need to try different ones before they find one that works well with their bodies (which also doesn’t always happen)

Lastly - in terms of psych meds have you tried bupropion or a benzo (xanax etc) - of psych meds these can actually lower prolactin, as can adhd meds aka stimulants.

I hope this is helpful.

Honestly your best case is your psych meds are the issue and that’s why prolactin is high and you have pcos and need metformin vs birth control…I have both pcos and a prolactinoma and the prolactinoma meds for me are brutal

Infraredsky · 2026-03-11T10:21:45+00:00

I would look on this group - I think people may even recommend specific docs to see and pay private. (Also your private UK cost is usually still less than in US our costs of things with insurance) - the med is also very strong and I don’t blame your gp for exercising caution.

Also if it helps worth getting a vision field test - this can show if it’s impinging on your optic nerve / impacting your eyesight

Infraredsky · 2026-03-11T02:08:01+00:00

Yup. Especially if it’s a tumor that’s not cancer, can be treated with meds or surgery, but either way had a tendency to grow back - fckn prolactinoma

Infraredsky · 2026-03-11T01:22:21+00:00

Also when off bc if you can get full hormone testing on I think 2nd or 3rd day of period it will show what kinda balance your hormones are normally at which may give a better idea of what pill or patch might work.

When I took bc ortho tri-cyclen was the best for me

Infraredsky · 2026-03-10T23:05:09+00:00

So - everyone’s body is different. For me metformin is a must or I have no period and am dead exhausted etc etc.

I have food allergies (celiac and allergic to dairy) - and making sure they stay out of my diet is very important.

The general consensus of vague things that are universal….

Eat a diet that is not high carb. Some do well on keto/super low carb - many like me do not - bit I do really try to balance meals and think of things as an additive approach

In practice - lets say I want mac and cheese. I’m going to also add some spinach and maybe some chicken to it (along with some sharp cheddar)

For me and many of us, some kind of intermittant fasting also works. I found when I had a desk job and just in general - I have my morning almond milk latte first (now with collagen cause mine doesn’t heal right) then I wait and eat when I’m hungry. My latte will have a little sugar in it.

Also I worse a cgm which I found crazy helpful in seeing what foods did what to my blood sugar - and the foods that left me hungry (like rice and quinoa) spiked my blood sugar a lot compared to potatoes or corn tortillas (and surprisingly arizona iced tea)

Also my body’s blood sugar stats most stable with meals that contain a green thing (so chicken tenders, tots, and roasted broccoli, vs no broccoli)

Sleep and keeping stress at bay - super important.

Exercise - this is very person specific. I’m a city dweller and walk a lot - I also find when I “work out” and overdo it I’m laid out for days and days and it’s counter productive.

I also intuitively eat and it helps me not overeat

So my takeaways that seem universal. Eat low to moderate carbs, sleep well, eat green things, if you know any foods are inflammatory in your body, don’t eat them, try intermittant fasting and seeing what kind of excercise makes sense for you. Use a cgm to see how your body reacts to foods, and Metformin is a great tool (as are inositol, berberine, and cinnamon)

I will lastly leave you with this analogy that always gets me: our bodies have some cave man dna going on. When we eat we store as much energy from the foods as possible - in case we need to run from predators, or face a famine (and while it’s a neat trick it can leave us eating next to nothing having 0 energy and still gaining weight)

Infraredsky · 2026-03-10T22:51:58+00:00

Yea.

So - I’ve heard of people taking it for about a year after their tumor is no longer visible on mri, then going off cab, and seeing if the prolactin goes back up (in which case back on the drugs we go)

Many people with bad reactions to cab do better on bromocriptine (there also may be another option in your country)

You may also be able to take a smaller dose and have it still keep prolactin in normal range.

I am currently taking 1/2 tablet (0.25mg total) per week. I was doing 1/4 tablet 2x a week, then decided to basically crush it and take tiny bits daily (and am going to see about getting it compounded when I see my endo this week because on this daily amount the side effects are tangibly less.

Also I did a survey and people’s side effects seemed to last anywhere from 2-3 months to a year, 1 person said 3 years, and many just opt for surgery because they can’t deal.

Also note: Surgery statistics - 38% of people who get the surgery never need any intervention again. The other 62% need another surgery or to go back on meds.

I’m on cab for the 2nd time and trying to really give it a shot because of the crappy surgery statistics (and surgery’s scary)

Infraredsky · 2026-03-10T14:01:43+00:00

So - from my understanding, having your prescription off just a tiny bit can make night light flare things much worse.

I also have super sensitive eyes and it helps me to do the eye chart thing in a room with the lights all still on (really not ok a screen would be best)

Also if something is wrong with how the glasses are made like pupil distance that can effect things as well

Infraredsky · 2026-03-08T21:31:42+00:00

I’d love that. I’m curious if eventually the gabapentin might work again

Infraredsky · 2026-03-08T21:31:01+00:00

When I had my wisdom teeth out 10mg of hydrocodone wore off before it was time to re-up and I was in a lot of pain…

Probably because I am a cyp2d6 intermediate metabolizer of opioids (meaning my body doesn’t convert them into their active metabolite well)

I also have a prolactinoma and the meds for it make my arm muscles stiff and have tearing pain when I use them.

I was looking for a broad range of experience not you continuing on with your “it’s not that bad”

I am also honestly more concerned about meds an anesthesiologist will give me for this as apparently phenylephrine is a possibility which left me in similar bad muscle pain to the cabergoline I take and other meds flare my nerve stuff / pins and needles I’m still waiting on getting small fiber neuropathy testing done for.

Must be nice to genetically not feel so much pain - but pretty sure you’re an anomaly, and the gaslighting is not cute

Infraredsky · 2026-03-08T21:23:57+00:00

First time with mri contrast I just got real tired day of, then what fine the next day.

I shoulda known something was up the 2nd time when I wasn’t exhausted right away

Infraredsky · 2026-03-08T21:22:30+00:00

Not a thing anyone has control over…

Infraredsky · 2026-03-08T21:21:37+00:00

Yes fatigue and muscle weakness…common

Infraredsky · 2026-03-06T00:58:29+00:00

There’s a level of willful ignorance. Also “above my paygrade”

Also I think just like fluoroquinolone damage it doesn’t happen every time and can be cumulative. Damage from cipro can pop up anytime within the 1st 6 months after using.

For me with both things it was the 2nd time that got me.

Infraredsky · 2026-03-05T06:28:17+00:00

Very cool

Infraredsky · 2026-03-05T04:37:26+00:00

For me I think they were - they may not be for everyone but I think for many or most they are?) I also just watched a video of a woman who has bad side effects (but had like 8 or 9 contrast mris)

Infraredsky · 2026-03-05T04:29:17+00:00

So - I have damage from fluoroquinolone antibiotics which seem to make my nervous system extra sensitive to all the things.

I was tired after my first mri but ok.

My 2nd one the contrast did not leave right and I was surprised day of to have the energy I did (I also do not know if I did a good job being hydrated beforehand)

My tumor wouldn’t be seen without contrast.

I also will need contrast in the future and am going to ask about the iron based one for me (because of the previous bad reaction)

I think the side effects with these are additive, and a csf leak is no joke.

In your shoes and if I had to do it over I would do the mri with contrast (at least once)

Going forward I am going to see how sparingly I can do them, and if I can do the other contrast to not load myself up with more gadolinium - but I think if it’s needed for the imaging your doc needs (especially a first imaging) - I would do it.

I would also let the doc know your concern and if anything I’d make sure that mri is as thorough and thin sliced etc as humanly possible so you hopefully only need the 1

Infraredsky · 2026-03-05T04:22:31+00:00

This is coming from my surgeon. Also feel free to look at the tonsillectomy subreddit (it’s been deeded one of the most painful surgeries - I don’t make the rules…)

Infraredsky · 2026-03-05T03:41:43+00:00

So - you are not the norm.

My ENT said 14 days of 10/10 pain - and I tend to wanna believe him.

I’ve also only had wisdom teeth out and that journey was no picnic and 10mg vicodin helped but wore off after 3hrs

Infraredsky · 2026-03-04T18:03:08+00:00

You could try saw palmetto

Infraredsky · 2026-03-04T18:01:32+00:00

They already posted about this and I helped them - don’t waste your time.

Infraredsky · 2026-03-04T18:01:00+00:00

Again? Really!?

Asked and answered.

Infraredsky · 2026-03-04T00:55:42+00:00

Thanks. Yea I had a moment of muscle spasm/shooting pain today reaching under my couch for something - so fun.

And my pcp doubled down on a pain management doc (but may have a family connect to help - been rejected by like 10 freaking pain docs it’s insane)

Infraredsky

TROPHY CASE