u/kiramekki

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.

Hi all,

30F here and dx with a pituitary microadenoma in 2018. I had been misdiagnosed with PCOS for years prior and my main issue was hair loss (and hypothyroidism but didn’t know at the time) I didn’t get treatment with thyroid meds till 2023, after self-medicating with thyroid hormone from Mexico (you can get it over the counter) and saw some symptoms resolve. I went to like 6 endos, and despite my thyroid labs being low-normal (TSH, FT3, FT4) none of them noticed my labs matched central hypothyroidism. I put the pieces together and was confident I needed some thyroid meds. After I told my endo I was taking them myself he agreed to test and help me find my dose. I didn’t need more than 50mcg, it was like a subclinical central hypothyroidism almost…they also saw my thyroid was inflamed. My endo said I “might” be part of the 10% of hashimotos patients without antibodies…but no way to confirm. I then learned thyroid is typically one of the last hormones to get low in hypopit, and it was my first, so maybe that’s why doctors missed it?

Fast forward, early 2024, I started a new job and started having a couple restless nights a week. It started to get a bit worse, so I pushed my endo (Dr.Friedman the famous endo) to look into my sex hormones. He tested my day 3 estrogen and that’s it, it came back at 23.3. At the time, my menstrual cycle was perfect and I was ovulating. He said estrogen was low and that I could try HRT. I didn’t know, day 3 E is always lowest for healthy women, so I should have checked my Estrogen days 19-22 to see how high it really got! looking back, I was also not being consistent with my cabergoline (I would take half a pill every 2 months and would go up to 8 months without it again, because endos would tell me I may not need it, my prolactin was 55 pre-cab,and dropped to 15, after my very first dose, so highly responding thankfully. In months off cab, my prolactin would very very slowly over 6-8 months, I missed this pattern. I wish my endo had told me to be consistent with cab first, so my prolactin would stop fluctuating so much, which can lower sex hormones alone. I wish i hadnt jumped to HRT without more testing. Being desperate, I said let’s do it. I started an estrogen Dotti patch 0.05 2x/week and mandatory 100mg progesterone days 15-25 of my cycle, which would eventually become 100mg daily in an attempt to help my sleep. That was 2024, august.

HRT made the insomnia (so I think) chronic and I’ve just lost my job because it got so severe, I contemplated ending my life. I’m still dealing with it, and the HRT hasn’t helped. We even upped my Progesterone to 200mg per night.

I’m now asking my endo fo help me get off HRT since he said “you can always quit it if doesn’t help.” I have found another endo since who told me the same thing for my thyroid meds! That I could quit and see if I really needed it…so I’m pretty confused. Why do they even give me an option? I have been to Mayo Clinic, Boston mass general, Texas MD Anderson….my local endo (not Dr.friedman) said in order to really test my pit function, I need to be off HRT. Specifically, to do a dexamethasone suppression test. I did one back in 2019, when I didn’t have any sleep issues, and I suppressed fine. I do wish to be retested because my 8-point cortisol curve showed all normal values, except my cortisol rises too early (4am instead of 6am). But, I have done 24hr UFC, 2-3 times in the last 2 years, along with midnight saliva cortisols. And they come back fine. I am desperate to get to the bottom of insomnia. I feel like a shell of the person I once was. Apparently chronic sleep deprivation alone can present like my 8-point cortisol results. None are out of range, just 4am being normal but ideally would be lower.

I’m at a loss. Sometimes I feel overmedicated, and unsure if it’s thyroid or estrogen, since both can be activating for the nervous system. I feel like my only hope is to get off HRT, re-test, and maybe lower my thyroid dose. I have lost 35lbs since I was on 50mcg of synthroid. thanks to tirzepatide.

So, I guess I’m wondering if anyone can relate. What other hormones may cause this insomnia? It’s so bad, that even oxycodone fails to knock me out. Ambien worked at first, but then stopped working. Ofc, I have lots of side effects from sleep deprivation alone, which I didn’t have when I was sleeping ok.