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Transplant Meds and Hormones

ShelbycreatesTransplant Patient
January 4, 2023 in General

As someone who had a transplant at 35, most of my doctors are not used to having a pre-menopausal patient. I'm having some gynecological issues and I'm meeting with my primary care doc in a couple of weeks. I have heard that transplant meds can impact hormone production. Does anyone have any experience with this? Or know of any resources that can help me be informed when I go to talk to my doctor? Thanks!

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1 - 13 of 13 Replies

  • AliEm14Expert
    Transplant Patient

    Yep! I ran into this issue last year. My doctor was so unfamiliar with it because most of the transplant patients are older. Even now I can only get labs done at certain points in my cycle (before ovulation) or my liver enzymes come out high every time.

    from what I remember it has to do with tacro increasing the amount of progesterone in the body, which can create a bunch of hormonal imbalances.

    even the topic of immune suppression in female bodies is severely under studied. At first no one believed me it was my hormones, so I spent hours scouring medical journals and trying to find my own answers. I knew I was right, I just needed proof to back me up πŸ˜‚

    January 5, 2023
  • ShelbycreatesTransplant Patient

    You're incredible. You've got me going down a rabbit hole. There are studies on male hormones, but finding info on the side effects of transplant meds on female hormones is severely lacking!

    January 5, 2023
  • Way to advocate for yourself @AliEm14 !!

    As a donor I don't have a transplant but I do have a hyperthyroid and I feel like I have to go into the dr with charts and data of my own every time to get the Dr to believe all the symptoms I am having do to the medicine increases.

    Good luck @Shelbycreates Let me know if you need an extra body of support. And good luck with that rabbit hole.

    January 5, 2023
  • TServoldTransplant Patient

    Hmmmmmmmm. I wonder if this is why my cycle has changed so much after transplant. I assumed it was because I was on anticoagulant meds, which I was advised would impact my cycle but those have ended and now I have even more changes to what was a very simple, predictable, reliable cycle. My husband immediately thought it was related to my new meds but I didn’t see anything listed in side effects. Probably because it’s under evaluated.

    January 5, 2023
  • @Tservold yes. It probably is Under Evaluated. Are there others here in the same boat as these two? It would definitely make for interesting research and taking data back to the drs never hurts.

    January 5, 2023
  • ShelbycreatesTransplant Patient

    thanks for your support April. I'd love any help going down the research rabbit hole. πŸ˜‰

    January 7, 2023
  • ShelbycreatesTransplant Patient

    Yes, my cycle has been all over the place. In fact about 6 months ago I had such massive clots that they wanted to send me to the ER in the middle of the height of COVID. I monitored myself at home and followed up outside of the ER. I know stress impacts cycles, but I'm really wondering about the hormonal effects of transplant medications.

    January 7, 2023
  • TServoldTransplant Patient

    I asked my OB. She is a new provider to me, my previous one retired. My first visit with her I knew I would like her as a practitioner; it was Halloween and she came in to my visit in FULL COSTUME. I love Halloween and it was glorious. Anyway, i messaged her and she told me that its highly under studied. Especially in women my age range with transplants. (I am almost 40).

    January 19, 2023
  • ShelbycreatesTransplant Patient

    I just went to my primary care doctor and I'm going to see a new OBGYN because a PA diagnosed me with an autoimmune skin condition, but I think it's highly unlikely (and my transplant team agrees) that I would get an autoimmune reaction while being immunosuppressed. I'll keep you updated with what I find out. Also, I turn 40 this year!!

    January 19, 2023
  • AvasheartTransplant Patient

    what auto immune-------did she prescribe prednizone

    January 19, 2023
  • ShelbycreatesTransplant Patient

    I'm already on prednisone too. I can message you Ava.

    January 19, 2023
  • AvasheartTransplant Patient
  • Maybe it's because I'm now 40 but I have been researching more about peri-menopause and how there isn't enough research available across the board for women. What I learned recently is that the average age for menopause is 51-52. Some women experience it at 45 and later like 57. Anyway, perimenopause signs and symptoms can start up to 10 years before that. And having a transplant and being immunocompromised and taking all sorts of medicine cocktails probably plays a major role in those symptoms too.

    Hope you find answers.

    January 19, 2023
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