30F, Japanese-American, 5’1”, gained weight and now ≈180lbs with very classic cushingoid appearance…
Rheumatoid Arthritis, Ehlers-Danlos Type 3 (hEDS), likely Cushings Disease, possibly additional autoimmune disease. I have several other comorbidities I don’t know are relevant
TL;DR: Got MRI results on Wednesday finding two pituitary microadenomas 2mm and 3mm, indicated because of a year+ of elevated prolactin and ACTH and no period for 7 months. I likely won’t hear from my doctor until Monday night at the earliest. I will definitely follow up and talk to my doctor, I’m just very anxious in the meantime… of the prognosis, what kind of treatment to expect, what I should know, idk. I thought I would just need medication to fix the imbalance but I’m reading I may also need surgery. I’ve had so many endocrine related issues I feel there’s something more happening.
History of headaches/migraines and irregular periods. 4cm left breast fibroadenoma removed in 2009. Two unchanged 0.5cm and 0.6cm thyroid cysts since 2014. Two MRIs in 2018 for other things incidentally found a single pituitary cyst (no size in report), and “multiple” uterine fibroids and ovarian cysts and some calcified, and a 6cm adrenal adenoma. Left adrenal gland removed in 2019 because of the adenoma. Strabismus surgery in 2022 due to severe esotropia causing strabismus; I don’t know if related to the pituitary. No family history of any kind of endocrine related issues except prediabetes.
Maybe unrelated, spontaneous nasal perforation earlier this year (never used drugs, never had nose operated on) I’ve just have extreme allergies and daily bloody noses going on for 3 years. ENT blaming RA, Rheum is skeptical because Wegener’s/GPA has a high false-negative rate. Also being monitored by my allergist.
Laundry list of daily medications and supplements; Xeljanz, Plaquenil, Effexor, Wellbutrin, Metoprolol, Meloxicam, Allegra, Pepcid, Singulair, birth control, Rizatriptan prn. Vitamin D, Magnesium, Probiotic
October 2022, had elevated ACTH, but I had an ankle ligament repair and nasty break up only 3 weeks prior so it was attributed to stress. Contacted Endo again in June because I was feeling terrible with a slew of symptoms looking like PCOS or Cushings. ACTH and Prolactin still raised and again still high this October. B12 now also very high for no apparent reason (2505 pg/mL); kidney and liver function is normal.
I feel like I’m an endocrinologic mess, though it’s exciting for my endocrinologist lol. I border on prediabetes, but it seems like every other hormone secreting gland is plagued with tumors or cysts. I’m seen and well taken care of at UCLA, but my mom is freaked out and wants me to get a second opinion at Mayo or other big research hospital. I don’t think it’s necessary since it would likely have the same treatment plan anyway. My endocrinologist once mentioned several years ago there may be some genetic component linking all of the endocrine issues, but it wasn’t looked into.
If I need surgery to remove the adenomas, will my perforated septum complicate things? Are double adenomas actually rare? It seems like at least one of them is secreting hormones, or can there be another cause (like genetic)? I can provide any additional info, labs, or reports. Thank you in advanced.
30F, Japanese-American, 5’1”, gained weight and now ≈180lbs with very classic cushingoid appearance…Rheumatoid Arthritis, Ehlers-Danlos Type 3 (hEDS), likely Cushings Disease, possibly additional autoimmune disease. I have several other comorbidities I don’t know are relevantTL;DR: Got MRI results on Wednesday finding two pituitary microadenomas 2mm and 3mm, indicated because of a year+ of elevated prolactin and ACTH and no period for 7 months. I likely won’t hear from my doctor until Monday night at the earliest. I will definitely follow up and talk to my doctor, I’m just very anxious in the meantime… of the prognosis, what kind of treatment to expect, what I should know, idk. I thought I would just need medication to fix the imbalance but I’m reading I may also need surgery. I’ve had so many endocrine related issues I feel there’s something more happening. History of headaches/migraines and irregular periods. 4cm left breast fibroadenoma removed in 2009. Two unchanged 0.5cm and 0.6cm thyroid cysts since 2014. Two MRIs in 2018 for other things incidentally found a single pituitary cyst (no size in report), and “multiple” uterine fibroids and ovarian cysts and some calcified, and a 6cm adrenal adenoma. Left adrenal gland removed in 2019 because of the adenoma. Strabismus surgery in 2022 due to severe esotropia causing strabismus; I don’t know if related to the pituitary. No family history of any kind of endocrine related issues except prediabetes.Maybe unrelated, spontaneous nasal perforation earlier this year (never used drugs, never had nose operated on) I’ve just have extreme allergies and daily bloody noses going on for 3 years. ENT blaming RA, Rheum is skeptical because Wegener’s/GPA has a high false-negative rate. Also being monitored by my allergist. Laundry list of daily medications and supplements; Xeljanz, Plaquenil, Effexor, Wellbutrin, Metoprolol, Meloxicam, Allegra, Pepcid, Singulair, birth control, Rizatriptan prn. Vitamin D, Magnesium, ProbioticOctober 2022, had elevated ACTH, but I had an ankle ligament repair and nasty break up only 3 weeks prior so it was attributed to stress. Contacted Endo again in June because I was feeling terrible with a slew of symptoms looking like PCOS or Cushings. ACTH and Prolactin still raised and again still high this October. B12 now also very high for no apparent reason (2505 pg/mL); kidney and liver function is normal. I feel like I’m an endocrinologic mess, though it’s exciting for my endocrinologist lol. I border on prediabetes, but it seems like every other hormone secreting gland is plagued with tumors or cysts. I’m seen and well taken care of at UCLA, but my mom is freaked out and wants me to get a second opinion at Mayo or other big research hospital. I don’t think it’s necessary since it would likely have the same treatment plan anyway. My endocrinologist once mentioned several years ago there may be some genetic component linking all of the endocrine issues, but it wasn’t looked into. If I need surgery to remove the adenomas, will my perforated septum complicate things? Are double adenomas actually rare? It seems like at least one of them is secreting hormones, or can there be another cause (like genetic)? I can provide any additional info, labs, or reports. Thank you in advanced. https://ift.tt/Yz1hgt3 https://ift.tt/wAWQKEq
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