r/Hypopituitarism

When I was little it was so obvious that something was wrong with because I couldn't interact with other kids, couldn't socialize, couldn't play games, couldn't do sports,had issues with motor skills,it was hard for me to study i had extreme fatigue ever since I was born.But my parents thought I was just a little different or quiet.

Even before the puberty age my life was very different than an average kid.Like I would watch TV all day and would sit at school all the time to a point my nickname was wallflower.

I got diagnosed at 14 due to no puberty. And although things make more sense and I got to understand myself more nothing changed for me still no friends no energy whatsoever.

Now im recovering from shame of being so different and I actually have goals,desires things I want to do but now im 23 and I don't know if the things I want would be achievable with this illness.

Because although modern medicine is very developed this illness still remains understudied.Like your hormones can't function like a healthy person's with the today's medication. And hormones affect everything like psychology,cognitive function, motivation

My GP found after a blood test that my testosterone was almost zero and sent me to an endocrinologist. They gave me after an MRI the diagnosis of empty sella syndrome, I was prescribed hormone replacement (cortisol, thyroid hormone and testosterone) at relatively high doses. At first I felt much better, but after a few months severe sleep problems and extreme stress started. Eventually I was sleeping only 2-3 hours per night with constant hyperarousal (an overactive stress system) day and night. After years of this I ended up in a psychiatric hospital for 4 weeks because of suicidal thoughts.
Multiple endocrinologists confirmed I needed to stay on the hormones. After three years in this state I looked deeper into my older blood results myself. I was always on the edge of the max reference limit for HC and lthyroxine. A professor later acknowledged that the doses had been too high. We tapered down, but the sleep issues and stress did not improve right away. The years of dysregulation had taken their toll.
During that time doctors prescribed various sleep medications, often several at once, without real improvement.
Now my stress system is totally out of control. Always waking up with extreem stress, anxiety and restless after 2-3h of sleep, and the stress won’t go down. I can do only small things anymore.. after that I need to rest 😮‍💨😪
Feel always mentally in the ON position but also wired but tiered ☹️

Someone with similar stories

I’m still struggling…

I was doing pretty good until I have been diagnosed with empty sella due to a MRI SCAN 5 years ago and followed advise for 3 years (5 endocrinologists did all said the same 30mg HC is good, 125ug lthyroxine and 250mg sustanon… even I couldn’t sleep more then 3h even with sleep meds woke up in extreem anxiety, I was totally over stressed, hart palpitations ect ect… long story…

I figured out almost everything myself (doses/timings even what sleep meds would be beter or worse) I never got tailored advice from an endocrinologist or psychiatrist (I visited 8 plus a professor)

What I eventually did was try something first (with help of my GP, he’s really tries). See if things improve. Then discuss it with the specialists …☹️

My situation seems to complex I guess. The endocrinologist send me to the psychiatrist, the psychiatrist send me to the psychologist who send me to a sleep specialist and back again…

They all think it’s all in my head

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?

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.