r/Hypopituitarism

I was diagnosed with growth hormone deficiency at age 4 and have been treated with Genotropin. Later, I was diagnosed with hypopituitarism, including hypothyroidism and hypogonadotropic hypogonadism (my pituitary does not properly signal my ovaries to produce estrogen). For this I take Eltroxin and the Microlite pill as hormone replacement.

Now I am late 20s,each time my bloods are “within range” yet I suffer badly from lethargy, apathy, I have very slow processing speed, brain fog and feeling hungover in the mornings.

I am thinking about also visiting a neuro endocrinologist, I see oxytocin being mentioned here a bit however I am keen to hear from anybody else who also has the same and if anything has any advice on my symptoms

They saw a 7mm tumor in January on my MRI for a different issue. Based on the initial lab work, my IGF-1 level is mildly elevated (352 on a 53-331 range). My biggest fear is possibly developing hypopituitarism after surgery. I would greatly appreciate it if you could share your experiences and, if you’ve undergone the surgery in Orlando, who is your surgeon? Thank you. 

I was wondering if anyone would be willing to share their symptoms prior to diagnosis of hypopituitarism and what the diagnosostic process was like, what did the labs look like?

A little background as to why I am curious. My 10 year old daughter had a mild hypoxic brain injury at birth. At age 5 she started experiencing excercise induced "crashes" which included all over body weakness, BP drop, body temp drop (96), nausea, vomiting, and headache. Over the last 5 years these episodes have intensified in frequency and duration. She been to the ED countless times and they diagnosis her with "atypical migraine" even though she has documented low BP and body temp, as well as elevated ketones, elevated potassium, low calicum, and when they pull a POC VBG it suggests mild acidosis. Interestingly, her blood glucose is always normal or running slightly high so we dont know why her body makes ketones (not fasting or on keto diet).

Currently she has been in a "crash" for 6 weeks with daily postural headache, low blood pressure, low body temperature, muscle twitches, diarrhea, dizziness, shortness of breath, and horrible fatigue (sleeping 16-18 hours per day). Her orthostatic vital suggest POTS (46 bmp heart rate increase at the 10 minute standing mark) but she is also having a lot of instability in her BP which does quite fit the diagnostic criteria for POTS or Hyper-POTS.

I've pushed for endocrinology referrals and endo did a thorough investigation for T1D ( all labs normal), and checked morning cortisol, free t4, and TSH. She did these labs while experiencing all the symptoms above, horrible stabbing/throbbing headache, BP 85/55, Temp 96.6 Her cortisol was 6.3 which was just inside the 6.2 cut off, leaving me wondering why her body isnt mounting a decent stress response when feeling so poorly. Additionally, her free t4 was .68 and TSH was 1.86 so it seems there is also a failure in the body to trigger TSH to increase due to lowered free t4. The endo looked at these labs said "everything looks normal" and suggested to return to neuro and cardio for treatment of migraine and suspected POTS. I've pushed back wanting further eval on the low-normal labs and have essentially been told that because my daughter has maintained a appropriate growth rate and has not been vomiting (though she does have frequent diarrhea) no further investigation of central AI or central hypothyroidism is warrented. Does this sound correct? We're your cortisol and free t4 labs much lower? Does growth have to be impacted to be diagnosed? TIA!

Hi everyone! I’m 16 and starting growth hormone soon. I’m a little bad with needles so just wondering how is it? I’m sure it will be annoying doing it every day but will I eventually get used to it?

Hi there, appreciate the help of this community. I'm a 39 year old man and I've recently been diagnosed with adrenal insufficiency after a massive 2cm pituitary tumor macroadenoma that hemorrhaged and required emergency neurosurgery last year. The recover has been horrific. I was bedridden for months and had an inexperienced endocrinologist completely miss the symptoms of AI for many months after that. I started seeing my new endocrinologist in late February this year and he diagnosed me through an insulin tolerance test with secondary adrenal insufficiency and hypopituitarism.

My pituitary gland is basically non functioning -- I'm also on testosterone for low testosterone, on cabergoline for high prolactin (which has almost normalized) and I was also found to have low growth hormone (I was prescribed Omnitrope but had a bad reaction and had to take a week off of work to recover from severe facial pain and swelling and exhaustion and I have been taken off that for now to be revisited in the months ahead).

My question is around side effects related to hydrocortisone and AI. I am on 20mg of hydrocortisone a day. My doctor prescribed 10mg at 730am and 10mg at about 3pm but that dosing schedule didn't work for me. I now split my dose up in multiple doses throughout the day (10mg in morning, 5mg at noon and 2.5mg in late afternoon and early evening) and have been adjusting better with more energy and ability to cope with stress and take care of my young toddler at night and be a good husband to my wife. But I'm having what seem to be intense vascular issues in my face where I'm still dealing with facial swelling (my face and cheeks looks like I'm 50lbs heavier than I am), bloodshot eyes and bad facial redness -- I presume when my cortisol reserves are low, particularly at the end of the day or when I'm under a lot of stress at work.

Has anyone dealt with these symptoms before and do you have any advice based on the symptoms and dosing schedule I've provided? Thank you very much for your help. I'm desperate for help to optimize my dosing. Appreciate all the help this community provides to patients.

I know this isn't going to be the typical post for this subreddit, but I don't know where else to talk about it.

To keep it short, this is what just happened to me and I’m not sure if I overreacted...

I’ve had growth hormone deficiency since I was a kid. Between the ages of 8 or 9 (I don’t remember exactly), I started synthetic growth hormone treatment until I was about 17. At that time, they told me I wouldn’t need it anymore and my doctor stopped it.

The next 4 years were pretty bad… and the years after that were even worse. At 26, purely by chance, I ended up with a doctor who actually ordered all the tests no one had bothered to run in years. Turns out the nightmare I’d been living since I was 17 was because I still needed GH. I’ve been back on the injections for the last 20 years.

The whole time I was off treatment, to make a long story short, it wasn’t easy socially. A lot of people distanced themselves from me, and the ones who stayed… honestly, sometimes I wish they hadn’t.

Today I had a fight with my partner. We don’t fight much, and she knows all about this — in pretty good detail. Today I had to do my injection. I wasn’t having a good day because of it. It doesn’t always happen, but today was particularly rough. Between doses, it’s not uncommon for me to have one or two bad days due to the overlap.

I told her that, but she either didn’t want to understand or whatever… She ended up yelling at me about things that happened more than 6 months ago. And eventually sayed I should set up a shared calendar to let her know when I have to do my injection.

I got angry...

Didn’t yell (I never do), I just told her that what she was suggesting was as humiliating as me asking her to set up a calendar to notify me when she’s on her period… and then I went to the bedroom.

Now I’m lying in bed, furious, humiliated, degraded, and hurt. Am I exaggerating? Or what she said was too much? I’m listening...

Sorry for my bad writing. I’m not a native English speaker. I would really appreciate any opinions on the matter

Thank you for reading me.

I’m in the process of arranging an insulin stimulation test as an adult.
The doctor sent over to me a document explaining what to expect during the test and risks. The way stuff was put in in there and how it read it kind of terrifies me. It mentions that it’s common to have serious nausea, heart episodes, panic, potential loss of conscious, intense, sweats, etc. And more at once, not just one or the other.

To be honest, doesn’t sound encouraging. I’m not sure what to make of this.

Therefore, I’m wondering if there are any adults here who underwent the aforementioned test as an adult that could share how bad it actually was for them, just so I can gauge from real life experiences?

Thanks.

Hate to make a bit of a negative post, but I just wanted to share a bit of how I feel and maybe some questions for the older adults here.

I am 17 currently going to be 18 this month, I feel a bit more lonely because of this condition, because I know no one else has it and even if I do talk to others about it they will never really understand, but lately I just feel so negative about having this condition and everything that comes with it like having to take medication everyday etc, wishing I was born without it , it’s just hard to stay positive sometimes I guess.

So for people who has felt like this before what did you do about it? And any advice?

Hello! Sorry if this is the wrong place to post this - please let me know and i’ll remove asap!

For context, I’m an 18yo female student. At 13 I was showing signs of POTS (just high heart rate standing, nothing else and it didn’t affect me) - as suggested vaguely by a doctor in an unrelated doctor’s appointment. No diagnosis or follow up or anything - which was fine because back then it didn’t affect me. It was probably around 15-16 i started noticing my fast heart rate, breathlessness, tight chest etc. but still nothing too bad, all very manageable. Since about February, it seemed to get a lot worse (debilitating fatigue, hr at rest 100-130 through the day, standing hr 150-190, digestive and stool issues, horrible brain fog, weekly headaches, chest pain…. you name it!). So i thought okay my POTS wants to be annoying, fine, i’ll go get a diagnosis and some medication or something - because at this point it was really stating to affect my studies and life.

Go to GP -> GP refers to cardiologist-> cardiologist does standard work up (ecg, echo, bloods etc.). one of the bloods he test for is cortisol -> cortisol comes back low (3.2) -> refers to endocrinologist

While i’m waiting for my endo appointment, i was told to start taking hydrocortisone 30mg. It was horrible. I was so fatigued, I couldn’t get up and just slept all day so eventually, with the permission of the new endo, I went off it.

Endo appointment arrives -> endo requests tons and tons of blood test -> all come back fine except still low cortisol, and slightly elevated prolactin (750) -> endo suspects pituitary adenoma so i go to get and MRI -> MRI comes back saying possible 3mm pituitary adenoma.

With the MRI report I’m just lost there, because how could something so tiny be making me feel like death every single day?! And the headaches??? None of my symptoms align with test results.

Anyway! I go back to the endo, he also seems like he has no clue what to do but eventually sends me for an ACTH stim test which comes back just in the normal range. At the same time I’m going to the endo, I’m also seeing ophthalmologist and even a neuro ophthalmologist because at the same time all this happened I felt my short sightedness getting worse so went to the optician who referred me to the ophthalmologist because apparently my optic nerve looked inflamed and my optic disk was elevated. Anyway ophthalmologist refers me to neuro ophthalmologist who literally says nope you’re all good, cya!

So now I have no treatments or tests or follow up appointments lined up, and honestly It’s really getting to me. I’ve not had an easy adolescents - I have had to fight so hard to get to where I am now. And i’m in such a critical point in my education that I can’t afford awful fatigue and headaches and all this other crap.

I’m sorry this post had been so long - it’s been a long few months for me. I am so tired and just want to feel good again, and be excited for my future. If anyone had any advice, suggestions, ideas - literally anything - I am all ears!

Thank you ♥︎♥︎

Hello everyone,

I'm 41 years old and I've had hypopituitarism since I was 5. I've been on medication all this time with a daily injection (Norditropin).

Two weeks ago, I saw the doctor who treats me at the hospital for this problem. He told me that a new treatment has just been released, allowing me to have one injection per week instead of one per day.

I'm obviously interested in this new treatment. I won't be able to get it right away; I have to have some tests this summer (I go to a day hospital every two years, and this year marks my second year) and then see my doctor again.

I don't know the name of the medication. I should mention that I'm in France.

Have any of you in my situation heard of this ?