Effects of coming off tamoxifen after 10 years

Hi, I came off tamoxlfen in July after 11 years, I’ve not had any of the many other side effects mentioned. I am 58 and tamoxifen through me into menopause at 46. Since coming off tamoxifen I feel permanently exhausted and have what I can only describe as brain fog, I can also burst into tears in a second at ridiculous things. I was wondering if anyone else has felt like this.

  • I'm just reading this now and so grateful to everyone for posting! I started Tamoxifen in June 2022 after chemo and had no side effects for ages. Then last year I noticed my sleep was awful, I felt wired and constantly tired. I noticed a fine tremor and increasing brain fog. Came to a head 7 weeks ago with what felt like debilitating flu and light headedness/dazed feeling so I haven't worked since then! Bloods showed nothing and even saw Endocrinolgist. Came off Tamoxifen and cancer nurse I called knew very little about withdrawal symptoms but said I'd know if Tamoxifen was responsible for my symptoms after 8 week stopping it. Stopped it and horrendous dizziness and worse dazed feeling, eventually dizziness gone a fortnight later so I can drive now but still dazed. Had shivers and flu like muscular pain. Got a private heart ECG for a week as so worried but thankfully all well. Spoke to another bc nurse who told me she had never heard of these symptoms and I had to challenge her to do a Google! It's just not acceptable that we're given no information on withdrawal symptoms. A simple guide would help, including the option to taper off which I've heard helps. This process could take me months yet - thank goodness my work are understanding but I'm struggling with my studies. Hope this information helps. Oh - there's also an interaction Tamoxifen has with potassium so make sure you have potassium rich foods when you stop.