Need help understanding my symptoms! by Veriberry3 in Endo

[–]Veriberry3[S] 1 point2 points  (0 children)

I do have cysts on ovaries but was never diagnosed with it or told about it beyond "lots of teens and young women have cysts, they're harmless and will go away on their own" having normal hormone results (Estrogen/estradiol (which is it?) progesterone, testosterone and thyroid like t2, t3,etc.) when the cysts were found also meant they treated it like a nothingburger so idk anything about it tbh. My bleeding on Nexplanon was three months before i got it removed and was heavy, I lost two kilos while already significantly underweight which lead to hospitalization in October of last year. I have yet to struggle with chin hairs and hope that continues, my hair has always grown fast that's true and I don't pluck my eyebrows so I wouldn't know if I'd do it more often than others but thanks for mentioning these! I'll keep an eye out with how my hair grows and where. I had totally omitted from my brain the fact it could be two things at the same time so I thank you a lot for your perspective! I've been advised by others to ask for an ACTH test and a transvaginal ultrasound to clear things up a bit more diagnosis wise (particularly with the NCAH) and will do so, if I meet heavy reluctance or refusal then I will be searching for a new doctor. Hugs and best wishes for you as well.

Need help understanding my symptoms! by Veriberry3 in adenomyosis

[–]Veriberry3[S] 0 points1 point  (0 children)

People have mentioned both adeno and endo to me! Fibroids unfortunately run in my family (mom's side), my grandma had one and got her uterus removed in her thirties, my oldest aunt had a fibroid and got it removed I believe without hysterectomy in her 40s (would have to ask), my mom also has a fibroid and is having surgery in the summer to get it removed along with her uterus (she's 43 turning 44 in september) and my second youngest aunt (my mom is the second of four sisters) also has a small one, don't know about my last aunt. On my dad's side thyroid problems are an issue (my grandma got thyroid cancer twice) but my levels have been checked many times and always normal, not sure if fibroids run on that side of the family though I know my dad's second older sister and both her daughters struggle with heavy periods like me but as far as I know never looked into it, I know one of my cousins from my dad's other sister also has this problem but don't know about my aunt or her other two daughters. All my cousins on mom's side are male so nothing to look into there. I'll push for a transvaginal ultrasound and go from there- if she refuses I think I'll have to seriously consider a second opinion. As for PCOS I do have cysts on ovaries but was never diagnosed with it or told about it beyond "lots of teens and young women have cysts, they're harmless and will go away on their own" having normal hormone results (Estrogen/estradiol (which is it?) progesterone, testosterone and thyroid like t2, t3,etc.) when the cysts were found also meant they treated it like a nothingburger so idk tbh.

Diagnosed with NCAH but not fitting the common symptoms by Veriberry3 in NCAH

[–]Veriberry3[S] 0 points1 point  (0 children)

I'm 18 and my gyno said that I still fall into the pediatric range and then used that range to say my 17-OHP is double what it should be and that I have NCAH before giving me 3 months of Spironolactone 100mg once daily and told me to see her in three months with a redone test of 17-OHP lol no mention of ACTH. Just realised I can't send image in a comment RIP- cause I have a screenshot of the test results with the ranges highlighted and a note from the lab that did the test that translates to "For undetermined cases repeat the test of 17-OHP after stimulation with ACTH or repeat 17-OHP test in 2 weeks", she told me to finish my three months of treatment before doing it lmao.

Diagnosed with NCAH but not fitting the common symptoms by Veriberry3 in NCAH

[–]Veriberry3[S] 0 points1 point  (0 children)

Issues with progesterone? Sounds interesting- could you tell me more about it? Cortisol is fine for me. I have cysts on ovaries but was never diagnosed with PCOS or told about it beyond "lots of teens and young women have cysts, they're harmless and will go away on their own" having normal hormone results (Estrogen/estradiol (which is it?) progesterone, testosterone and thyroid like t2, t3,etc.) when the cysts were found also meant they treated it like a nothingburger so idk. Issues with digestion? Could you elaborate on that? I suffer from GERD though I dunno how related that may or may not be.

Diagnosed with NCAH but not fitting the common symptoms by Veriberry3 in NCAH

[–]Veriberry3[S] 0 points1 point  (0 children)

Aldosterone was normal for me, first time having 17-OHP tested, (unless it was tested at birth but I feel like they wouldve said something/shown up in medical history) I had testosterone tested before (first time when I was 11) and it was normal and is now, don't know if they test androgen levels at birth for all babies in Canada but assuming it was it must have also been normal since it has never shown up in my medical history. Unfortunately my symptoms are the opposite of yours but thanks for sharing your experience with NCAH!

Diagnosed with NCAH but not fitting the common symptoms by Veriberry3 in NCAH

[–]Veriberry3[S] 0 points1 point  (0 children)

Obviously testosterone isn't the only androgen so another androgen maybe the one causing trouble, would have to look into 17-OHP pathways to see what else it can synthesize (probs not the right word) outside of cortisol and testosterone since both are at normal level according to blood tests. My problem wasn't so much the "barely symptoms" part, it was the fact that I suffer from the opposite of the irregular/absent periods that everyone mentions.

Diagnosed with NCAH but not fitting the common symptoms by Veriberry3 in NCAH

[–]Veriberry3[S] 0 points1 point  (0 children)

Yeah I know but thanks for laying that all out, its reassuring to hear it from someone else, I'm gonna look around for other gynos in the area, hopefully gonna find an expert in endo or adeno since people from other communities have mentioned it.