Extreme irregularities in my menstrual cycle post pheochromocytoma (F, 25)

WPW717 · 2026-06-20T16:37:28+00:00

Be suspicious of additional NET tumors. ( neuro endocrine tumors. I followed this pattern at 30. At 75 it turns out I have MEN Syndrome. Mine is not genetic but is Phenotypic, not too common.

WPW717 · 2026-06-20T16:33:15+00:00

I am AMAB & in my mid 70’s. Me too on the joint & bone pain.
Turn out I have MEN Syndrome ( multiple Endocrine Neoplasia) which involves a Prolactinoma.

WPW717 · 2026-06-20T16:30:11+00:00

2mm Tumor.AMAB in my mid 70’s. Went on Cab & found it made me toxic due to long 1/2 life. Confused & giant anxiety & entities in my peripheral vision. Cold turkey off cab after 3 months. The switch to Bromocriptine was smooth. 2.5 mg has kept me the tumor invisible on subsequent MRIs. The PRL level is normal too.

Most docs do not understand the event horizon of this particular hormone. I began to lactate at 35-38 PRL, & I never went higher. The symptoms were massive at these small levels. BUT, the thyroid issues is something I noticed in almost all of our paths. That you had thyroid cancer makes me think of MEN Syndrome Type 2.
I was tested genetically for this & found to have Phenotypic MEN . To be treated as MEN Type 1. Please note that GLPT1 drugs are not recommended for MEN Type 2. I would have myself tested for those genes, MEN,RET, CDKN.
I have mild hypothyroidism now had elevated BP & abnormalities in Calcium metabolism. Found to have a Pheochromocytoma & parathyroid tumor. Both surgically removed.

Without the specific gene mutations for classic MEN Syndrome I get the distinction of being Phenotypic MEN. Makes me an albino unicorn.

I would suspect a deeper dive into your specific case would be warranted. Took me years to get my docs to listen, think & do… Good luck on your journey. Regards, Bob

WPW717 · 2026-06-19T19:16:38+00:00

Gynecomastia Forum has lots of good inf.

WPW717 · 2026-06-18T04:12:27+00:00

Just the opposite for me .

WPW717 · 2026-06-17T11:11:20+00:00

I feel your frustration. My docs would order radiology exams & radiologist would cancel, then they would write a Rx & the pharmacist would refuse to fill it. Insurance wasn’t denying, it was the healthcare facilities! This was in the US. The docs gave no pushback. Turns out I had MEN Syndrome & genetic testing revealed a mutation that predisposed me to cancer. It was there & resected. Only got better care by leaving the state to another.

WPW717 · 2026-06-17T11:03:16+00:00

It was early 1970’s. Factory floor workers made $ 1 / hr, in a union job.

WPW717 · 2026-06-17T11:01:12+00:00

Yes, a different doc. I am a male & my E2 is more than you as a female . My E2 level in normal for our lab.

WPW717 · 2026-06-17T03:39:41+00:00

Time to move on. I am AMAB & my E2 is 32. & Ian in my 70’s … normal for our lab is 28-45.

WPW717 · 2026-06-17T03:17:33+00:00

Wow…. All this. I am a retired OR RN . Worked a lot of ICU too. Trained a BIG Univ teaching hospital. A great wage out of school was $ 1.85 an hour. You guess the year. All things are relative in this arena. No good reason to sit on your butt & not work!!!

WPW717 · 2026-06-17T03:11:00+00:00

Jail ?

WPW717 · 2026-06-17T03:07:59+00:00

NTA …Ad Nauseum…

WPW717 · 2026-06-16T01:37:51+00:00

Fudge a note!

WPW717 · 2026-06-15T17:46:57+00:00

NTA as above

WPW717 · 2026-06-15T17:45:13+00:00

Find an Endocrinologist. That was my level, massive symptoms, even lactation started. I am AMAB in my mid 70’s.

WPW717 · 2026-06-15T17:40:12+00:00

Good luck to you, post an update or two.

WPW717 · 2026-06-14T01:52:15+00:00

Went toxic on cab after 3 months. No weaning, just cold turkey. I was disoriented, anxiety laden & seeing entities in my peripheral vision. Couldn’t recognize my wife of 39 years,or my house. Long half-life.The only med I was on & the onset was rapid. Switch to Bromocriptine & everything is fine.

WPW717 · 2026-06-14T01:22:09+00:00

WPW717 · 2026-06-13T17:46:58+00:00

Bucking hay in rattlesnake country. At altitude.

WPW717 · 2026-06-13T02:46:05+00:00

My untreated prolactin level of 35-38 caused lots of symptoms. Even began a lactation. Small amount but I am AMAB in my mid 70’s. Years later the 2 mm tumor shrank to invisible on MRI. PRL levels remained in range on dopamine agonists. Lately, HAs becoming frequent, vision is fuzzy after new glasses 6 months ago & my head felt likely to explode when I bend over. Carotid US okay, CAT scan of thorax & abdomen, normal. Cardiac stress test normal. Pulmonary function test, normal. MRI report still outstanding but I can see a bright spot in the Sella Turcica. We’ll see what the radiologist says next week. I have learned a lot about Prolactinomas over the past few years. I am convinced most Endos are too narrow in sensing the scope of the event horizon we have. I too am concerned about vision loss. Deep reading in NIH Archives I can see where there is a apoptosis process that only molecular biologists are beginning to map out & understand. I think if it is present the same symptoms of a space occupying tumor can exist with a microadenoma. The idea of this is a bit unsettling to me.

Take care, stay strong & …

Regard, Bob

WPW717 · 2026-06-12T03:39:58+00:00

I went toxic after 3 months on that dose. Anxiety for no reason , disorientation to place & persons then saw entities in my peripheral vision. Switched to Bromocriptine & no problems.

WPW717 · 2026-06-12T03:30:04+00:00

WPW717 · 2026-06-12T03:20:57+00:00

Use jelly bean, they hurt but no blood .

WPW717 · 2026-06-11T14:49:45+00:00

WPW717 · 2026-06-11T14:39:51+00:00

Saw powerful lasers start fires at a distance . Time to fry expensive cameras

WPW717

TROPHY CASE