Home Forum Topics Disease Related Health Lactating but not pregnant – pituitary tumor

  • This Post has 4 replies, 1 voice, and was last updated 1 year ago by kgg10.
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  • #783 Reply
    kgg10

    When I was 24 (2017), I noticed my a small amount of liquid coming from my nipples. I know I wasn’t pregnant, so after googling a bit, I shrugged it of as overstimulation. Because I also had irregular periods, my partner encouraged me to get it checked out just in case. I didn’t have a PCP in New York, so I booked with a new doctor who was near my office.

    After an examination, the doctor said “have you googled this at all.” I thought what a strange question, but I realized she didn’t want to me be surprised by what she said next. She said “you likely have a benign tumor on your pituitary gland. Let’s run some labs and get an MRI to be sure.” My heart sank, and I felt too shocked to ask any important questions. I didn’t even feel confident about where exactly the pituitary gland was located (now I know it’s in your head but not your brain). I left the office with a paperwork for an mri, transvaginal ultrasound, bilateral breast ultrasound, and lots of bloodwork.

    The test results came rolling in:
    Prolactin, serum : 44 (normal range 3-18.6 pg/ML)
    Breast ultrasound: “No US evidence of malignancy.”
    Transvaginal: “Unremarkable ovaries”
    MRI: “Unremarkable contrast-enhanced MRI examination of the brain and pituitary gland.”

    My doctor was a little thrown off by my MRI coming back normal and decided to go through every endocrinological test in the book (she literally brought a book in the examination room). The next two months were endless blood tests with no conclusive results. One morning, they scheduled me before the phlebotomist came in by mistake. I got poked over 10 times in my arms, wrists, and hands while various doctors tried to draw my blood since she wasn’t in. I felt like a test rat. After more inconclusive results, I decided I was done. None of my symptoms bothered me enough to be worth the stress of more tests.

    A year later, I scheduled my annual gynecologist visit. She listened closely while I told her about my health journey. She said, “I understand your frustration. I’m going to refer you to an endocrinologist. You should really be seeing an expert in this field.”

    I did a lot of the same tests over again, prolactin still high, but this time my MRI showed different results. “Approximately 4 mm right-sided microadenoma.” There is was. The little tumor causing my issues. I was prescribed prolactin and scheduled a 3 month follow up. Although cabergoline is known to have intense side effects, I luckily didn’t experience any. The lactation stopped but my periods were still irregular. (I was put on birth control in 2019 to give my fertility it’s best shot in the future) For the next two years I saw my prolactin decrease quickly and my MRI results improve. The 4mm adenoma went to 2.5 mm in 2019 to 1-2mm in 2020. With this news, I was able to stop the cabergoline. After 3 months, my prolactin levels were still in normal range. Moving forward, I have to continue follow ups every 4 months and yearly MRIs.

    While the testing felt like a pain in the beginning, I’m grateful my gyno didn’t let me push my health to the side. Untreated pituitary adenomas and hyperprolactinemia can cause more severe issues than a little leaking like infertility and vision loss.

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    • #1472 Reply
      Cam BCam
      Participant

      Hi! I also have a microadenoma and it’s around 9mm. The only symptom that I’ve had from it was extremely irregular periods. When I was referred to an endocrinologist they discovered more severe issues so the pituitary tumor was put on the backburner. Fast forward 1.5+ years and I have been on cabergoline for over a year (and tried increasing dosage) but it has not lowered the prolactin levels and makes my migraines worse. Did any of your doctors suggest other medications or options?

      Thanks 🙂

      • #1825 Reply
        kgg10

        Hi Cam,

        Because it was working for me, he never mentioned any other options. However, I do know of other people who have been put on bromocriptine. I think it’s generally prescribed less because it has even more severe side effects. It could also be worth asking about surgery. I know that’s typically an option if medication doesn’t work.

         

    • #1014 Reply
      kgg10

      I definitely forgot about night sweats until you mentioned it! It would happen to me once in awhile but not frequently.

      I think the main reason I was put on cabergoline was because my prolactin was consistently elevated and since the microadenoma was detectable in the second MRI when it wasn’t in the first. If it’s not growing or secreting prolactin, I think doctors like to keep you off it since it can cause a lot of side effects.

      I know the journey is exhausting. However, since fertility is important to you, it really helps to have a endo/gyno in your corner. Mine were in the same medical group, and this made it a little less exhausting since they had access to the same test results and charts. I talk to both about fertility about 1/year and they’re fairly optimistic and talk me through back up plans should I have difficulty conceiving when that time comes.

      Have any of your doctors talked about taking metformin for PCOS?

    • #798 Reply
      Madeline OleszkiewiczMadeline O

      I also have a microadenoma roughly 4mm as well! I am curious if you had any other symptoms besides the lactation? I used to notice dried liquid on my bras when I was going through puberty in middle school (~2005-2008) and just ignored it – before I got my first period even. I haven’t noticed it ever since then but my prolactin levels have been tested numerous times throughout the years and have ranged from normal to very high!

      I got my period naturally one time in 2009 and then never again. It wasn’t until college (2013ish) that my gynecologist told me I had PCOS and I needed to go on birth control. I gained weight (especially in my boobs) and really hated it – tbh I loved not having a period and was careful with sex so didn’t need to be on it. So I was on and off birth control for a few years – my OBGYN told me I really needed to be taking it so that I can shed my uterine lining to prevent cancer.

      Aside from irregular periods, I believe I have hypothyroidism but no doctor has diagnosed me. I am constantly freezing – especially in my hands and feet. I have the worst night sweats to the point where I’ve changed PJs multiple times a night (but I will also be freezing at the same time… its the worst). I have awful constipation and I eat a very healthy diet, drink tons of water, am active, etc. Plus my mom and sister have hypothyroidism and it is a genetic disorder. Honestly I feel like I am going through menopause! Haha!

      The microadenoma certainly may be causing my hypothyroidism symptoms. While right now I do not have high prolactin levels, I wonder if there is something I could be taking similar to cabergoline that could help the tumor go away.

      I am frankly exhausted with doctors visits. I have moved from city to city a lot too so I am constantly on the hunt for a new OBGYN and endocrinologist and it is hard to find the right one and reexplain my history and symptoms every time and my journey has been so complicated I even forget what is going on.

      My biggest concern truly for me though is being able to conceive one day and not having any fertility issues. Since day 1 I have asked my doctors if this will impact my fertility and all they say is ‘we won’t know until you try’ but I want to do anything I can now while I can!! I am hoping to try in the next 4 years or so.

      Thank you for sharing!!

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