Pcos + t1d

Has anyone else been diagnosed with PCOS (polycystic ovarian syndrome) on top of their T1D?

I’m interested in finding out how prevalent it is among women with T1D, how other people are managing the issue (meds, lifestyle, etc), and how pregnancy has gone for those with both PCOS and T1D!

Background: I was diagnosed with T1D 12 years ago and PCOS about 2 years ago, but I think it’s been a problem since I was a teenager. I have never had a normal cycle; when I was 16, they had to put me on birth control just to kickstart my body into having cycles. For the few years that I wasn’t on birth control, I’d maybe have 2 or 3 cycles per year. I’ve now been on Metformin for about a year, which has lowered my insulin resistance due to PCOS a lot, but sadly not helped me keep regular cycles. My husband and I are trying to conceive, so I’d love any feedback anyone has on dealing with PCOS as a diabetic.

I’m on my second month of taking Provera to start my cycle and Clomid to induce ovulation. According to my progesterone levels on Day 21 of my last cycle, the Clomid didn’t work and I didn’t ovulate at all, so they’ve doubled my dose of Clomid this month. Curious to see how it worked for anyone else and how many months it took or if you had to go another route!

Have you had your prolactin and testosterone levels checked? They thought I had PCOS, but it turned out I had a benign tumor on my pituitary gland that was throwing off hormones and causing me to not ovulate. I think my T1D confused the first doctor I went to. In any case, I highly recommend a second opinion if you haven’t gotten one yet.

@rolltide - Prolactin levels were normal (9.4, within standard range of 2.0-23.0).

Testosterone levels were:
Sex hormone binding globulin - 32 (standard range 30-135)
Testosterone - 54 (standard range 9-55)
Testosterone free - 9.2 (standard range 0.8-7.4)

This is the second doctor I’ve seen about PCOS, and they’ve done a lot of hormone testing but have not said anything about any abnormality/tumor on my pituitary gland. How did they diagnose yours?

My levels were significantly high (prolactin at 349, testosterone 90), and I also had a head MRI.
Sorry that I couldn’t be more helpful, just thought I’d share on the off chance you had a shady doctor like me! It sounds like you have done your due diligence.
Best of luck, I know how depressing infertility is :frowning: