Starting tamoxifen - hormone levels

[Lilgreygoose]

If you’ve been put on tamoxifen, were your hormone levels checked prior to starting?

The long version:

I’m 48. Was premenopausal before being put on tamoxifen 6 months ago. Cycles were very regular, nothing to suggest menopause. Have had a whole raft of symptoms/side effects after taking tamoxifen. Period stopped. Hot flashes, urinary incontinence, dryness (skin, eyes, vaginal), moody, forgetfulness, fatigue.

6 months in my oncologist is now saying it’s difficult to tell whether these are side effects or symptoms of natural menopause.

Before starting Tamoxifen, I asked whether they’d check hormone levels to see what my estrogen levels were like. I was told it wasn’t necessary because my estrogen would be circulating anyway, the receptors just wouldn’t use it.

Now they are saying they have no idea what my menopause status is and there doesn’t seem to be an inclination to check.

Reading up on things again, I keep seeing references where it says hormone levels should be routinely checked prior to starting Tamoxifen. Was this done for anyone else?

Before and starting taking tamoxifen I never had any blood tests to test hormones.

I started tamoxifen in Nov 2024 and did not have my hormone levels checked before. Side effects so far limited to sleep disturbance, plus no period at all since starting it. Not sure if this is normal menopause symptoms or tamoxifen side effect. I think my hair is thinning a bit too.

I didn’t know my menopausal status as I hadn’t had a period for several years (due to mini-pill). So they checked my levels and said I was still premenopausal (age 51). I’ve been taking Tamoxifen for about 6 months - had 2 periods, nothing for ages, and then a period out of the blue the other day.

Oncologist is now musing about switching me over to Fareston (Toremifene)

Anyone on this?

He hasn’t given me any info on it or how/in what way it is likely to be any better. I’m sat here thinking, if this stuff is better than tamoxifen, why wasn’t I put on it in the first instance?

Im also seething that I’m having to resort to asking questions on the internet rather than getting the information first hand from my doctor. Why is it damn near impossible to get actual care from my care team!

I started taking Tamoxifen in 2021 and like you periods stopped and all the other awful side effects. After a year or so I did have a blood test to see if I had gone through the menopause but I hadn’t so carried on taking them. One side effect of Tamoxifen was the enlargement of fibroids. My breast care nurse said it wouldn’t be the Tamoxifen but consultant Gynaecologist said it was and ended up having a total hysterectomy. One fibroid was the size of a grapefruit.