r/Hypopituitarism

Hi, i am male 35y dealing with panhypopituitarism from 5 years. I have never been a part of any online discussion group for help and support untill recently i started using reddit to find some mental health support.

My diagnosis from pituitary stalk biopsy showed lymphocytic hypophysitis and i was put on replacement for most hormones except GH which is still under consideration. I take following replacements

Testosterone
Hydrocortisone
Levothyroxine
Desmopressin
My GH is low but dctrs won’t give the replacement due to expensive and may be not critical in my case.

I have come to this group to seek some feedback about mental health. Since my diagnosis and treatment i have been dealing with anxiety and low mood. Recently i started having panic attacks and insomina. After psychiatric review i was put on zoloft 50mg and seroquel 25mg for sleep. The treatment did help to some extent but i may need to up the dose in future. I have had some unpleasent experiences in the past with hydrocortisone and testosterone where they caused me restlessness and elevation of mood. I have this fear in my mind that an antidepressant treatment may cause the similar episodes in my case as zoloft is slightly activating.

Has anyone in this group delat with detereorating mental helth and used any therapy that helped.
Please provide your insight. Thanks

Update: my neurosurgeons NP prescribed me antibiotics, which is a big relief. No appts required. Symptoms don't seem to be getting much worse, and hopefully I turn a corner soon.

Hey there,

Left a message with my surgeons office this morning, but since it's a Sunday I figured I'd check here and see if anyone else had a similar thing. Started noticing a bad taste in my throat and more throat drainage a few days ago. Yesterday just a bad headache (manageable with Tylenol and ibuprofen) and this morning I have a clogged nose for the first time since post op - and a lot of bright yellow mucus.

So, anyone else have a post surgery sinus infection? Did you have to see a doctor before getting antibiotics? Were you able to see a local doc or did you have to have an appt with your surgeon?

My basic issue is that my surgeon is a long ways away (7hr drive), so just getting an idea of what the process looks like so I can be ready. My son starts kindergarten this week. Of course! 😂

TYIA! Hope y'all are having a nice weekend

55 year old male,on hormone replacement with GH,testosterone,levothyroxine and hydro-cortisone

Recently developed sleep apnea

Along with that also seems to be having uncontrolled hypertension so they added another anti hypertensive

Is it possible that these supplemented hormones might be causing sleep apnea?

Hello everyone, I have a very serious problem with hormones and growth, I don't know what to do, at the moment I'm 161 years old, 18, but the growth zones are open, I look like a 13-year-old, I also do professional boxing when there are no competition fees, testesterone is more or less produced, as soon as competitions or fees it drops to zero then he recovers in about a month and I do not know what to do since I have connected my life with sports, but I also do not want to feel disabled, also the maximum testosterone was 15, which is quite low, I went to the doctors, everyone shrugs, now I plan to take a break from training, maybe someone from the doctors here will tell me What should I do?

I've just had results from a glucagon stimulation test which showed a peak of 1.13 for growth hormone and 458 for cortisol and have lots of questions about what to do next.

The private endo I saw said he will refer me back into the NHS endocrinology as he said he has a very long waiting list for his treatment clinic and the growth hormone meds are prohibitively expensive at £300 per month.

However the waiting list for NHS first endo appointment is currently 20 weeks! I'm worried about getting worse in this time - is hypopituitarism degenerative?

I'm also worried because even though the private endo threshold for cortisol deficiency was 460, the NHS threshold is 430 - meaning they may not believe I'm deficient. My baseline 9am cortisol before the test was 132 which is below the NICE guideline for likely deficiency - so I'm not sure what these results mean?

I'm aware you can have a tumour - my symptoms have been stable for a few months but does the tumour usually grow? I don't know whether to wait for the NHS to do a scan in 5 months time or get one privately to speed up the process if its an urgent problem ?

What Else could I do in the meantime - I've already lost my job and making an appeal to get it back with reduced hours but I don't know if its a bad idea to keep trying to work with this condition not being treated... the job is quite physical as its care in the community. I've been thinking I would try and become a driving instructor as its a sitting down job and I could choose my hours, but feel like its giving up my career I've built on in social care.

I'm so bored too, I've been off work since April and have very little physical energy so I can't do much except sit around at home and I've been very down. I've got a therapist which will help but time just goes so slowly waiting for the next medical appointment. What did everyone else do while being off sick?

Hi all,

I’m looking for a functional medicine doctor to Rx me HC. I know I have AI, most likely Secondary. I have a 6mm pituitary tumors that doctors have been awful at helping me with. I go to Dr.Friedman, the famous endocrinologist for pituitary patients, he was the first to confirm I had Central hypothyroidism. I’ve been taking thyroid meds for 3 years. It took me 3 years to get a doctor to listen. I ended up buying thyroid meds myself at first in Mexico. Same thing happened for low sex hormones, I finally got on HRT, which ended up not helping much in the end and now we monitor and I take a low dose progesterone.

I say this because I’m worried for my life. I feel letting turned away and I honestly feel cursed, I’ve traveled to different states for care and no one cares, not even Mayo Clinic. I think I have had AI for at least 3 years. Suddenly I developed insomnia 3 years ago and I’ve never gotten a single night of uninterrupted sleep. I sleep 3-6 hours every night and that’s it, even if I lay in bed for 9-10. It’s been this way for 2+ years. I’ve tried every suplement, and medication (aside from seroquel and Benzodiapines) and recently Ambien 10mg was only giving me 1 hr or sleep. I’ve lost jobs, friends, partners, due to how severe my insomnia is. I only function because I take thyroid medicine, I swear.
And now adrenal cortex has helped me, but I know it’s not a real substitute for HC and can be dangerous! I can’t afford to lose my job, that’s the only reason I take it.

I know I have low cortisol from saliva testing, but it’s lowest end of normal and still follows a normal curve pattern, just dragging at the bottom of every value. I did 8-point cortisol test. I have a lot of symptoms, especially sleep, dark circles, no appetite, I used to shiver a lot at night and get spikes of anxiety (I have never had it before), super emotional, fatigued, hair loss for years, colder than normal body temperature, cold extremities, ADHD, memory loss (both are common with pituitary tumors), dry eyes and bloodshot, aging super rapidly like my face is always dry and I’ve had oily skin my whole life. I also known that trazaodone (sleep or depression med) nearly threw me into an adrenal crisis when I took it. I was dizzy and felt drugged like never before, couldn’t even function all day, had to call off work.

So anyways, I fear I won’t get the help I need. My mental and physical health is at an all time low. I notice I sleep better when I take an adrenal cortex supplement before bed. Anything that lowers cortisol makes me severely tired all day. I will pay out of pocket for a functional doctor to help me, I have a bunch of recent labs.

I was recently diagnosed with severe adult growth hormone deficiency / hypopituitarism. I just got my Norditropin (a brand name for somatropin) pen delivered today and took my first injection (0.5 daily). I'd like to ask others who take this med:

1 For those who are obese like I am, did you experience a reduction in appetite and/or feelings of hunger after taking somatropin? If so, how long did it take for you to see which results?

2 For those with severe anxiety or other exacerbations of mental health, can you please specify what exactly you experience? I find the term "anxiety" is used as a catch-all but it can manifest in many unique forms. For me, I have constant argumentation in my head that I can't stop. Despite years of therapy and different psych meds. It's extremely wearisome and causes me to feel irrationally persecuted all the time.

3 To what extent is your cognition affected and when did youn start noticing any improvement? It feels like my brain is being slowly eaten away and everything, especially involving memory, is getting harder. Even simple driving has become dificult.

Please add any individual experiences you would like, I am interested in every detail, broad or specific. Thank you for your time!

56 year old male,hypertensive
GH,testosterone,thyroxine and corticosteroid being replaced

Recently developed severe sleep apnea
Hyponatremia too
Any inputs or personal experiences that can guide me before I get to see a doctor
?

Hi friends! My name is Shauna, and I'm a Cushing's survivor. Like so many of you, I know firsthand how challenging the journey can be, from getting diagnosed to navigating life afterward.

I'm also the Cushing's Syndrome Division Consultant for The MAGIC Foundation, and I'm excited to share that we're hosting a conference in Denver, October 16-18, dedicated to people living with Cushing's, panhypopituitarism, and adult growth hormone deficiency.

The conference is designed for patients and caregivers, with presentations from leading endocrinologists, practical sessions on managing life after diagnosis, opportunities to ask questions, and plenty of time to connect with others who truly understand what you're going through.

One of the hardest parts of having a rare disease is feeling alone. My hope is that this conference helps people find community, learn from experts, and leave feeling supported. **Scholarships are available** to help offset the cost of attending, so if finances are a concern, please don't let that stop you from coming. ❤️

If you're interested, I'd love for you to join us. You can learn more at the link below. Please feel free to reach out to me with any questions you may have:

https://static1.squarespace.com/static/6682f2b598cc152598a5fa35/t/6a7b1449d34cf06cbdac8d9f/1786451017476/ACV26+Program+8.11.26.pdf

Hi everyone,

I'm 41 years old, and I've been taking somatropin since I was 5. One injection a day.

Currently, I see my doctor once every 9 months, and then I go to the day hospital every 2 years for comprehensive checkups.

As far back as I can remember, my testosterone was always low but within the normal range. So I suppose that for doctors, as long as I'm within the normal range, it's fine.

But the erection problems have always been more or less present. Every time I brought it up, I found the doctor very reluctant or quick to dismiss the issue. I never understood why.

I saw him again in April and talked to him about it again. He told me it was good timing, because he'd scheduled me to go back to the day hospital this summer.

So I went in July and had the tests done, the results of which I received this morning. For the first time, my testosterone level is lower than normal.

It might seem strange, but I'm actually quite happy with this result, because I think that maybe, finally, he'll take it seriously (even though I still have my doubts...).

Are you in the same situation ?

Diagnosed hypopituitarism about 16 years ago by Dr. Friedman in LA. Diagnosed hypogonadism and growth hormone deficiency after taking gh stim test. I was 35 at the time of diagnosis.

For the last the last ten years or so I've had Kaiser insurance through work. There has never been a problem getting my medications.

I moved recently from Southern to Northern California. I still have Kaiser. The endocrinologist I have here is giving me push back on the diagnosis and now she wants me to retake a growth hormone stimulation test.

When Kaiser called to schedule the test I told them I won't be doing the test. This medication has helped a lot and I've just never heard of someone diagnosed as an adult having to retake the stim test. I've been on the med so long I can't imagine the stim test would be accurate.

Is this normal?