Question About Periods, FSH, and Fertility?

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Nclark6
Nclark6 Member Posts: 11
edited September 2019 in Young With Breast Cancer

So I was 28 when I was diagnosed. I went through 6 cycles of TCH. All these doctors have said because of your young age my period would come back. Right after chemo I had my FSH (follicle stimulating hormone) level checked it was a sky high 159.7, which is obviously menopausal. The doctor said that because I had just finished chemo that was to be expected (so don't worry). Well my periods finally returned like two months ago. I guess I assumed that meant my FSH levels were back to normal and went to have my FSH retested. I got the results today and it says that it is 134. This is obviously extremely disappointing for me. The reference range I received was:


Reference Range Follicular Phase 2.5-10.2 Mid-cycle Peak 3.1-17.7 Luteal Phase 1.5- 9.1 Postmenopausal 23.0-116.3


Based on this I am a very long way from being near the normal range. I know your body may need time to recover and it's been about 14 months, which I am hoping explains why I'm still so high. I guess I assumed it would be closer to normal because I have had two periods. The second one was way heavier than the first and was what I would consider closer to what I experienced prior to cancer and chemo. Does anyone have any experience with their FSH levels being this high and returning to the normal range? I guess I'm wondering if I can expect my levels to keep falling or is this a sign that I may be permanently menopausal at 29? I have tried to Google this and I hear conflicting things. My doctor said they will retest in November so all I can do is wait and hope it goes down some more then.

Comments

  • elabee
    elabee Member Posts: 20
    edited August 2017

    Have you asked your doctor to have your AMH tested? The AMH number is another data point that will tell you about your ovarian reserve. It's still kinda soon after treatment and you didn't mention whether you had your ovaries suppressed during treatment. A lot of those factors could be contributing to your numbers, so I wouldn't lose hope yet. Having been in the same exact spot, I know it's easy to get looped into that cycle of stress.

    My FSH was not as high as yours after chemo (TCHP) but the reproductive endocrinologist thought that the tamoxifen which causes high estradiol numbers could be artificially suppressing my FSH numbers. My AMH number before chemo was pretty low at .5 and after chemo was at .25. I did have lupron shots while on chemo and about a year after chemo resumed my periods which considering my low ovarian reserve, the doctors didn't think that was going to happen.

    On a side note, totally unexpectedly, I became pregnant a couple of months ago, unfortunately I miscarried. But, it gives me some hope when considering that I am in my 30's, have had chemo, have been on tamoxifen for over 3 years and have a diminished ovarian reserve. On paper, it would seem highly unlikely that I would be able to get pregnant at all.

  • Pinkleaf1234
    Pinkleaf1234 Member Posts: 1
    edited October 2017

    hi , i am kind of in the same boat ..i am 24 years old with hormones positive breast cancer ..I decided not to do any fertility preservation measures during chemo ..hoping i will not regret that

  • MissBee123
    MissBee123 Member Posts: 186
    edited November 2017

    Any updates on your fsh? Your post said you were going to retest this month.

    I'm currently going through IVF post treatment. I did TCHP, double mastectomy, and then ACT after treatment with a year of Herceptin. I finished ACT in May of 2016 and Herceptin in March of this year. After that I waited the required 6 months, and then met with a reproductive endocrinologist. She said my fsh level was 49. Not as high as yours but well above the ideal requirement for fertility of 10. This meant we headed straight to IVF. I froze my eggs before treatment and got 11, so we are hoping the thawing goes okay as well as fertilization and implantation. So many things that could still go wrong and it's pretty stressful. Cancer is the gift that keeps on giving, eh?

    Did you decide (or have the option) to freeze eggs/embryos prior to chemo? Have you been given any advice on next steps?

    Btw, your post is the first one I've seen (literally anywhere on the internet) that answered my question of if fsh levels will decrease again after chemo. So, for that a huge thank you.

  • Mrsayala24
    Mrsayala24 Member Posts: 15
    edited February 2019

    hi everyone. It’s such a bummer that all of us young women are going through this. Do any of you ladies have any updates? There is absolutely nothing on the internet about young women and fertility after chemo. I’ve talked to so many dr.’s and there is just not enough evidence. I did not get a chance to do egg preservations either, but my fertility Dr. said I had a lot of eggs to begin with so she was very hopeful that I would end with some. However, my oncologist has given me a lot of push back about doing IVF in a couple years. He says since I'm hormone positive that it could cause my cancer to come back. I got my levels back and my FSH is 25 and my LH is 33. I finished chemo about 6 weeks ago. I will pray that all of us ladies are able to conceive successfully.

  • MicroGirl
    MicroGirl Member Posts: 16
    edited February 2019

    Mrsayala24 I am just starting to go through this process as well. I was 38 at diagnosis (ER+) and recently married. Did not preserve eggs. Did a couple rounds of TC and a couple of AC then tamoxifen. My onc was comfortable with me going off at 18 months to attempt pregnancy. I'm seeing a reproductive endocrinologist. I've been off tamoxifen for 6 weeks. FSH has been high for the last year (35-60 so far) and AMH low though just up at 0.5 last time, which is better than the zero I started with. So, I'm headed in tomorrow for day three blood work (estrogen, FSH, etc.). Next period in for a hysteroscopy to check the uterus. Then depending on all these results (and the husband's) we look at next steps. If the FSH stays super high my eggs will likely be out of the question. Hope that helps a little, and keep us updated. I'm looking for another thread that is related to this, and if I find one I'll report back.

  • Nickel103
    Nickel103 Member Posts: 42
    edited September 2019

    hi all, I have been on lupron for 2 years and my RE just checked my AMH (considering coming off meds soon for egg retrieval). The AMH was .01 which seems to be about the lowest possible! Could the lupron be causing this? Anyone know if the AMH would increase after stopping lupron injections? I just had my last injection earlier this month (3 month shots).

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