Symptoms prior to diagnosis?
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!