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So I continue to be a mystery

Just when you think you’re in perimenopause you find yourself sitting in an exam room at the endocrinologist because no one knows what’s going on with you.

Let me back up.

You know how I got a diagnosis of perimenopause back last summer? I was having night sweats, hot flashes, and combined with my low-ish AMH, my OBGYN figured I was in perimenopause and gave me a prescription for birth control pills to try and control the symptoms. Unfortunately, my estrogen levels were never processed, but my FSH was curiously normal, and in perimenopause, you’d expect it to be higher. I did three months of birth control pills before going back to see him because the symptoms were still there. That’s when he put me on estrogen patches and I spent the next six months on them. News flash: they weren’t working either. It’s true, I should have gone in sooner. He said I would know in a week if they were working.

So I know going six months was kind of dumb because here I was still hot flashing and still night sweating and I thought if I went in, he would make me go on the Nuvaring and I so wasn’t on board with that.

When the patches started becoming itchy and leaving red rashes on my skin, I knew this wasn’t working anymore. I had interviewed a doctor popular in women’s health for her work on menopause for an article I wrote, and she planted the idea in my head that I should see a menopause expert. Of course the one I called retired that was in my area, and I gave up on the wild goose chase and decided to see the OBGYN that delivered Olivia because her bio said she had an interest in menopause. I thought, what could it hurt to see a second opinion?

I had never seen her except for my brief time in the OR as she did my C-section, but I explained my history and symptoms and she said no, I’m probably not in menopause.

Not in menopause, I thought, OK…

“The patches should have taken away your symptoms,” she explained, “And your hormone levels aren’t consistent with perimenopause.”

I added that I wasn’t keen on trying a Nuvaring, and she shook her head, telling me that that probably wasn’t going to help my symptoms. She didn’t know exactly what was going on, but she said she was fairly certain I wasn’t following the typical path for perimenopause.

OK then. Instead of trying to find some different treatments options for this, suddenly I’m back to the beginning. She referred me to an endocrinologist for further hormone testing and that was back in April.

While I waited the almost two months for my endocrinology appointment, I let my rashes on my abdomen and lower back heal up and noticed my night sweats getting better. Instead of happening a few times a week and waking up drenched in sweat, I was finding myself only waking a few times a month sweaty, but nothing like it was. Where I could hang out comfortably in a T-shirt down in the basement that is perpetually freezing, I was finding myself chilled. My body seemed to weirdly be coming out of its holyhellfire elevated body temperature and normalizing a little.

Last week I drove into one of the big city hospitals and found my way to the endocrinology department. I explained my somewhat confusing reason why I was there—in that I really had no idea why I was there except that what they thought I had, I no longer had.

I took a selfie.

The endocrinologist was nice. Really really nice for a specialist. He made some notes as I explained my history and asked a lot of questions. He said menopause was a possibility, but it wasn’t what he was seeing. He wanted to run some bloodwork to check my thyroid, estrogen, and FSH.

He also ordered me to do a 24-hour urine test where I collect my urine for 24 hours and bring it in for testing some adrenal and thyroid disorders. They’re rare, he explained, but it’s good to rule them out and cover the bases.

I’m wondering how to bring in an entire jug of pee to the clinic without anyone seeing. More on this to come as it unfolds.

I got my labs back this weekend and the doctor commented on Sunday, and this is what he said:

Estradiol is a bit low, as normal is >50. FSH should be higher in menopause. These still could be suggesting a perimenopausal state. Thyroid test is perfect! We’ll see what the 24-hour urine tests show us.

So… I don’t know. Lower estrogen is nothing new to me because every IVF I battled to keep it where the doctors wanted.

Now I guess I wait until the urine test comes back.

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Charlotte
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Hey Risa…so idk if you remember but I was having a lot of weird hormone issues too that seemed peri-menopausal but actually weren’t. What you are going through sounds a lot like what I was. All of my CD3 testing came back normal. Let me quick summed up what I have learned: I sought out a hormone specialist, who explained CD 3 testing doesn’t give a good picture, and while individual numbers can look ok, it is really the ratio and balance of all the sex hormones that make a difference. She had me to a “spit test” on CD… Read more »

Cristy
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Don’t you love falling outside the norm? So much fun.

I was going to suggest what Charlotte suggested. Single tests don’t show a trend and that’s what needs to be investigated. If your endocrinologist is open (and worth their salt), they’ll be open to doing more blood work to follow the trend. I was thinking progesterone too.

Jen
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What a lot of uncertainty to have to deal with. Wishing you all the best for getting some proper answers soon.

Mandi
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Mandi

I can’t wait to see what they find!

Not My Lines Yet
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Oh wow, this sounds familiar. I really hope you get answers, and that you’ll be willing to share! I’ve had night sweats, of the ‘need to change clothes every night’ variety since grad school. They seem better in the summer, but winter is brutal. Glad things seem to be getting better for you!

Laura Allio
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Laura Allio

So I’m new to finding your blog. As a breast cancer survivor at the age of 33, I am currently in chemically induced menopause thanks to Zoladex and Lupron. I was going to suggest seeing a functional doctor who specializes in hormones. The functional doctors are very interested in root causes and doing things a bit more natural. Also- flax helps hot flashes!!