Living with hypopituitarism

Hypopituitarism basically means your pituitary gland—that little powerhouse sitting at the base of your brain—isn't pumping out enough of its eight essential hormones. If things get really bad and most of those hormones drop below where they should be, doctors call it panhypopituitarism. Think of "pan" as meaning everything is affected.

The symptoms you deal with can change wildly depending on which specific hormone is lagging and what actually caused the issue in the first place. The good news is that most of these deficiencies can be managed through daily pills or injections to get your levels back up. It’s a pretty rare condition, though I’ve noticed it often gets misdiagnosed in people who are already dealing with the aftermath of a traumatic brain injury.

I’m curious if there are others here actually living with this day-to-day. If you are, please reach out—I’d love to swap stories and hear about how you're managing everything. 🙂

hey,
anybody else here 🙂
I’ve been dealing with hypopituitarism since I was six, which basically means I’m short on ADH—diabetes insipidus, if you want the technical term.
It's been my life for 26 years now 😛
It doesn't cause massive drama, though I definitely feel it hitting me harder as I get older.
I don't really know what your situation looks like—which hormones aren't firing right for you and all that...
But honestly, most of this stuff can be managed.
It just depends on who you're seeing and how much of an expert your doctors actually are.
To be real, I’m kind of over it at this point. I barely even show up for checkups anymore.
(I actually just had a brain CT, and they suggested there might be some potential issues near the pituitary, so now they want me to go in for an MRI for the tenth time.)
Of course, there's nothing actually wrong, but whatever.

I’m turning 26 pretty soon myself. 🙂 My doctors noticed I was running short on height way back in elementary school, so I went through a whole gauntlet of tests and eventually ended up on growth hormone therapy, which I stayed on almost until I graduated high school. It didn't really do much for me, though, so I just eventually accepted that I'm stuck at 4'11".

I've got a lot going on with my pituitary, thyroid, and adrenal glands, plus my estrogen levels are all over the place, so lately I've been managing everything with a steady regimen of Synthroid, Hydrocortisone, and Ortho-Cyclen, with occasional tweaks to the dosages.

I head in for checkups every six months or so, which honestly gives me a good excuse to make the trip down to Washington, D.C. and catch up with my friends. 😁

But anyway, how have you been feeling lately? Personally, I feel like I'm constantly exhausted, lazy, and just totally wiped out—my stamina is non-existent, and honestly, even this medication doesn't seem to be doing enough. 😁

crimsonmoose2 said:I'll be 26 soon enough. 🙂 They noticed I was running short on height way back in elementary school, so I went through endless checkups and eventually growth hormone therapy, which I was basically on until the end of high school. It didn't do much for me, though. I've just accepted that being 4'11" is my deal.

I’m dealing with pituitary, thyroid, and adrenal issues, plus the whole female hormone situation. So right now, I’ve been on a cocktail of Synthroid, Hydrocortisone, and Ortho-Cyclen for a while, with the occasional dose tweak.

I head in for checkups every six months—mostly because it gives me an excuse to swing through Washington, D.C. and catch up with my crew. 😁

Anyway, how are you holding up generally? I'm constantly exhausted, lazy, sleepy, and have zero stamina. This whole treatment thing is a grind. 😁

hey
just saw your message...
My last one was way more optimistic than this one... In the meantime, they diagnosed me with an ACTH deficiency. Because of that, my cortisol levels in a 24-hour urine test came back low, so they ran an ITT test and put me on a day of Hydrocortisone! Since then, life hasn't exactly been a breeze. Aside from a brief honeymoon phase for about two months after starting the Hydrocortisone, things have been rough. My potassium levels are tanking because of the Hydrocortisone, and now my doctors are actually split on whether I should even be on it, since I didn't have a total cortisol deficit. Now that I'm taking Hydrocortisone, it feels like my pituitary is just "done"...
I’m supposed to taper down the dose, but how??? I’m terrified I’ll just feel even worse...
I'm at 20 mg right now, but I'm supposed to get down to 15. Of course, not every doctor agrees on that...
It's a nightmare
I don't know what to do...

How many mg of Hydrocortisone are you on, how are you handling it, and which hospital are you seeing for follow-ups?
Oh, and yeah, I'm perpetually wiped out, totally drained, no energy, etc., etc., etc.

Amy Palmer71 said:Hey!
I just caught your message...
My last one was much more optimistic than this one. Since then, I've been diagnosed with an ACTH deficiency, which means my cortisol levels in a 24-hour urine test are low. I had an ITT test and they put me on Hydrocortisone! My life hasn't been easy since. Aside from a quick two-month boost right after starting the Hydrocortisone, things have been terrible. My potassium drops because of the Hydrocortisone, and now my doctors are actually divided on whether I should even be taking it, since my cortisol wasn't completely non-existent. Now that I'm on Hydrocortisone, it feels like my pituitary gland just isn't working anymore...
I need to taper down, but how? I'm terrified it will just make everything worse...
I'm at 20 mg right now but I'm supposed to get down to 15. Of course, not all my doctors agree on that plan...
It's awful.
I really don't know what to do...

How many mg of Hydrocortisone are you on, how are you handling it, and which hospital are you seeing for follow-ups?
And honestly, I'm just constantly exhausted and totally drained.

Best regards,
I just wanted to share my experience with Hydrocortisone. Hopefully, this helps. I am also currently on 20mg (15+5), and I'm hoping to scale back soon. Essentially, I want to point out that Hydrocortisone is a steroid, and from what I understand, it heavily impacts the immune system—it can drop it by as much as 80%. Because of that, you really have to be careful.
Hang in there! Best,

Has anyone here experimented with using Pfizer tablets?