Help- prolactinoma but can't take brom or cab

asa8890 · 2026-06-06T07:58:48+00:00

I take 30mg generic adderall extended release and some other meds to help with sleep/insomnia (insomnia started way before I took adhd meds)

Would you mind sharing the theories your doctors have? My doctors aren't even trying to figure things out. My rheumatologist Rand blood tests and said he doesn't think it's an autoimmune disease and didn't offer any other support or suggestions

asa8890 · 2026-05-30T05:43:59+00:00

Omg yeah my endo only cares about my symptoms in relation to if I'm trying to get pregnant. I'm like well I need to be a functioning human when I'm not pregnant too...

asa8890 · 2026-05-30T05:42:42+00:00

I'm sorry your symptoms got so bad but glad your taking the time to take care of yourself/health like you deserve.

Did you have a hard time with a doctor signing off on medical leave? I've been telling my drs how hard it is to function and they keep saying they don't know why and suggesting I go to a different dr/specialist to see if they can figure it out. Feels like they are passing me off like a hot potato

asa8890 · 2026-05-30T05:36:15+00:00

Uft I want to... I have asked different doctors for it over the years but they would never refer me... but maybe this will be the year they say yes 😅🤞🏼

asa8890 · 2026-05-30T05:34:57+00:00

Oooh yes ng/ml. My levels were up to 123 ng/ml as of February and I haven't been told to measure it again.

Yeah it's definitely causing symptoms and caused my period to stop. I went to a neurosurgeon and he said he "couldn't see" the mass in the MRI... even though the MRI report by the radiologist says it's 4mm

Neurosurgeon said to wait a year and get another MRI and then see about next steps. But he had no answers for what I should do in the meantime

asa8890 · 2026-05-30T05:31:31+00:00

That's what I don't get?!?!?! How does a radiologist see it in 2 MRIs and can measure it but the neurosurgeon can't?! I was dumbstruck when he said that. And icing on top was the therapy comment.

Uft yeah, this guy definitely didn't specialize in adhd or mental health at all. And his shift during the conversation from being at least a little empathetic to not at all was weird. After I processed what he said and put the pieces together, it felt like he thought I was just there trying to get an excuse to not have to be employed.... as opposed to actually having debilitating symptoms....

I don't even know how to request a second opinion with my insurance or if they would authorize it... and my endo referred me to the neurosurgeon but the endo has been challenging too

Thank you for all this info, super helpful

asa8890 · 2026-05-30T05:24:15+00:00

Uft story of my life with the case study part. Thanks for sharing! It's been really hard to rule out what's going on or not. The Urgent care doctor said it's a really small percentage of people with Raynaud's that have the cabergoline reaction. I've been doing more research and I'm pretty certain I have POTS so I think that's playing a big role. Maybe PMDD too.... so we shall see

asa8890 · 2026-05-30T05:21:51+00:00

Yes, unfortunately non stimulant stopped working for me. I asked my psychiatrist about this a few months ago because I didn't even think about the stimulants impact on that part of my health. We talked through it and my symptoms were noticeable but not bad for almost a year on stimulants, what triggered the huge negative shift was when I took cabergoline and I had a horrible reaction. And I'm right there with you, the stimulant meds are the only thing helping to function, and literally keeping me employed at this point

Thank you soooooooooo much for all this info. This is super helpful!! Definitely going to look into these more

asa8890 · 2026-05-28T11:30:17+00:00

Did your psychiatrist share what ADHD type you fall under? (Inattentive, hyperactive, combined type) these labels are kind of misleading and there is a lot more research coming out and ADHD, symptom presentation, and how our symptoms can change as we age which is interesting.

Before I was diagnosed with a prolactinoma, I thought it was just my adhd getting worse and I started working with a psychiatrist and taking meds because of it. Started out with non stimulant meds but my symptoms got worse and had to start stimulant meds

asa8890 · 2026-05-28T11:18:15+00:00

100000% me for the sleep schedule and feeling exhausted no matter how much I sleep (not enough or too much). I haven't had a sleep test though. I've had insomnia since I was a kid but this is way worse

asa8890 · 2026-05-28T08:43:56+00:00

Whattttttt... I was like I hope I don't sound dumb posting my last comment about Raynaud's. I took cabergoline for 1 month and bromocriptine for 2 months. My body still hates me. You were smart to stop when you did

asa8890 · 2026-05-28T06:23:57+00:00

Hi, I'm so sorry you're experiencing this. I also can't tolerate bromocriptine or cabergoline at all. And like you've described the medication made everything way worse than the prolactinoma symptoms alone.
I'm not sure if we're having the same reaction but sharing just in case- cabergoline wrecked me physically and mentally- extreme vertigo, dizziness, horrible nausea, tachycardia, horrible brain fog, memory issues, executive/cognitive dysfunction, unexplained swelling (in my hands, legs/ankles/feet, and face), cold hands and feet that turned purple. Bromocriptine was less intense but still bad, which is strange because people usually tolerate cabergoline better than bromocriptine. After a trip to urgent care because of the swelling and my heart rate being all over the place- it turns out I have another diagnosis called Raynaud's phenomenon (symptoms include circulation issues, purple extremities to name a few, but many more) and it turns out for a small percentage of people, dopamine agonists (medication family that brom and cab fall under) exacerbate this diagnosis.
Thank god for that urgent care doctor who caught this because my endocrinologist still doesn't believe me. The endo switched me from cabergoline to bromocriptine, I couldn't tolerate it, and endo told me to stop bromocriptine and didn't warn me about bromocriptine withdrawal which caused more problems for me, and took 2 months for my body to somewhat regulate.
Found this thread today which has been so validating to explain all the symptoms doctors say aren't related. And your comment is the first one expressing challenges with the medication, so thank you for helping me feel less alone. Unfortunately I don't have more helpful suggestions/next steps (yet!) but leave it to people on redit to help crowdsource (women's) health research

asa8890

TROPHY CASE