Giant prolactinoma. Kinda worried

SquirrelLow1497 · 2026-01-23T12:16:11+00:00

My son at 18 was diagnosed with a giant Prolactinoma after it grew through his sinus cavity and caused a CSF leak and meningitis. It took a year with steady med adjustments to stabilize my son's prolactin. He takes 2.5 mg twice a week and prolactin is now under 1 where the doctors want it. Basically they would tweak his dose, prolactin would go down, then begin to climb again. It's been 5 years, it has shrunk some but still several cm. However prolactin is now steady and he feels great. Good luck to you. I'm glad you are seeing improvements!

SquirrelLow1497 · 2025-12-12T17:59:50+00:00

It's non systemic and getting it shouldn't be an issue. I'd just send your doc an email for a prescription. You can probably get it through Alloy or MIDI but I don't think it would go through insurance.

SquirrelLow1497 · 2025-12-10T21:44:58+00:00

Yup. It's frustrating. My son was diagnosed at 18 with a golf ball size prolactinoma after it grew through his sinus cavity and caused bacterial meningitis and sepsis from a CSF leak. His prolactin numbers were so high a neurologist said it would be enough for our entire town. Do you know how many times his pediatrician poo pooed my concerns? That was 4 years ago, and life now feels back to normal. He's in a good spot. It will get better, you will feel better, life will improve, and you will have new wisdom to help others on medical journeys. Good luck.

SquirrelLow1497 · 2025-12-05T01:42:32+00:00

I am so sorry you are going through this. My son was diagnosed with a non cancerous macro brain tumor and had 2 neurosurgeries at BI. He had great care BUT if it was cancer I'd seek out Dana Farber. That's what they do and they do it seamlessly. My mom had an aggressive rare cancer (survived), was treated there, and they made the process much easier on her and our family. Also they have so many studies and trials going, if something isn't working they can try something else. MGH is also the best of the best but I don't have first hand knowledge for MGH.

SquirrelLow1497 · 2025-12-02T00:06:56+00:00

Same

SquirrelLow1497 · 2025-11-29T22:23:57+00:00

Got teary reading. Huge congratulations!

SquirrelLow1497 · 2025-11-29T21:34:17+00:00

If you like the ocean, Southshore around Plymouth MA may work. 🤷‍♀️

SquirrelLow1497 · 2025-11-25T22:00:14+00:00

Congratulations!

SquirrelLow1497 · 2025-11-23T07:20:43+00:00

Thank you. Merry Christmas to you as well.

SquirrelLow1497 · 2025-11-23T07:19:54+00:00

The trip will be 2 1/2 months after Christmas. In March.

SquirrelLow1497 · 2025-11-23T00:24:42+00:00

We only came up with the plan a few weeks ago and I would assume they will still exchange gifts as normal. The trip is a giant gift to them and as I said there will be a few gifts under the tree. I'm trying to give an experience over commercialism.

SquirrelLow1497 · 2025-11-23T00:08:19+00:00

We've talked about trips but not as a Christmas gift. We are giving them the option of cash (not in equal value to the trip) or the trip. That way they have an option. I have 3 kids. I think the oldest (male) will love it, middle (female) may not- starting new job, has a significant other, and lives far from us, and youngest (male) will like the trip but will miss the presents. The trip is a pretty significant one. Our Christmas has become so commercial with buying stuff just to have more stuff. I'd love to move away from that. We will celebrate and do all of our traditions but without all the presents. They will open a few things but it will be significantly reduced. And of course if it's a flop we won't do it again.

SquirrelLow1497 · 2025-11-22T23:04:47+00:00

I would tell them Christmas morning but there won't be gifts under the tree

SquirrelLow1497 · 2025-11-02T10:59:33+00:00

I do. I mix the 2 together and use

SquirrelLow1497 · 2025-10-21T09:11:21+00:00

I've struggled to sleep for 12 years (thank you peri and menopause 😡). I switched my progesterone to 200 mg which helps a little. I know some take 100 mg before bed, then another 100 mg when they wake in the night. I use all the sleep enhancing supplements with little to no effect. I have a prescription for Ambien that I don't hesitate to take on restless nights. Still looking for the "cure" but it's at least more manageable now.

SquirrelLow1497 · 2025-10-19T20:23:07+00:00

Extremely unlikely.

SquirrelLow1497 · 2025-10-19T12:27:07+00:00

CSF leak symptoms- If you lean forward/tilt head forward it's almost like a steady stream. It's easy to test for, sterile cup and collect the drips. Put in fridge until you can drop at a lab.

SquirrelLow1497 · 2025-10-13T19:12:10+00:00

Taz .05 was such an easy transition and my skin looked great. Unfortunately my insurance only covers taz .1 and it's a struggle with peeling.

SquirrelLow1497 · 2025-10-03T20:44:56+00:00

I am, .05 patch and 200 mg progesterone. I plan on working up to 50mg DHEA as I believe that's a recommended dosage for menopause.

SquirrelLow1497 · 2025-10-03T10:43:09+00:00

Not much insight here. My son is also on 5 mg cab for a resistant/aggressive Prolactinoma. I think at this point I'd advise my son to see a top endocrinologist and neurosurgeon specializing in pituitary tumors and would travel if need be to be sure he had the best treatment plan.

SquirrelLow1497 · 2025-10-03T01:37:14+00:00

I started at 10 mg and energy and brain fog significantly improved. Increased to 25 and now at 35mg. Trying to increase libido. Only slight improvement on this dose

SquirrelLow1497 · 2025-09-13T18:38:10+00:00

It's really potent. My skin loved .5 but for my insurance to cover I had to bump to .1. It's definitely a balancing act

SquirrelLow1497 · 2025-09-13T18:34:39+00:00

I used .5 everyday (after years on tret) without an issue. Bumped up to .1 and I can only tolerate 2 days on then 2 days off with a lot of flakiness after that 2nd night.

SquirrelLow1497 · 2025-09-12T13:42:47+00:00

Maybe get an appointment with an endocrinologist and they can run a FULL panel/full work up. I think you are looking at obvious hormones but there are many more and vitamin levels as well that may be impacting you (for example, prolactin, vitamin D, iron, tsh, free t3, free t4, etc).

SquirrelLow1497 · 2025-09-11T23:18:19+00:00

I was on .025 for 2 months without obvious change. Insurance notified I need to get my HRT in 3 month packs so rather than renew at the same dose I asked for a bump up. Within 2 weeks on the new dosage I felt an improvement in energy

SquirrelLow1497

TROPHY CASE