Afraid to take Tamoxifen

@triciaot I started treatment with anastrozole at age 65. After 8 difficult months of insomnia and restless leg syndrome, I switched to exemestane (sp?). After 1 week, I quit that due to waking up one morning with crazy flushing in my face. I’ve been on 10 mg of tamoxifen since. I’m quitting that 7 months early because I’ve noticed over the years a steady increase in my A1C and triglycerides. Apparently, from what I’ve read in authoritative sources, there is a connection between tamoxifen and diabetes. I’m not in a medical field. This just feels like one “ other thing they don’t tell you”.

@gladforwomendoctors You’re right tamoxifen can raise triglycerides, from what I’ve read. That can lead to diabetes. I’m in a holding pattern on waiting to see what happens with my TSH. I’m at a subclinical level of hypothyroidism, my PCP had a wait and see attitude, my endocrinologist was ready to start me on Levothyroxine but was willing to wait another testing cycle. Tamoxifen has been associated with pushing women into hypothyroidism, according to research I’ve read.

Meanwhile, statins are know to suppress TSH numbers, and my higher score happened six months after I had stopped the statin (without telling the doctor, I felt my memory getting worse and blamed it on the statin).
I’m back on the statin. The PCP tested lipoprotein-A, and it was 83, pretty high. So I really need the statin. I’ll be tested in Nov for TSH. On hold, waiting.

It’s hard to know which way to jump. I do see some benefits staying on daily 5 mg tamoxifen, and would actually regret going off of it. But I really don’t want to jump on the Levothyroxine rollercoaster. I’d also avoid being pushed into diabetes. And, I’ll need assurances that my uterus/endometrial area is stable before staying on tamoxifen over 5 years.

It is just one thing after another.

I am also choosing not to take it after one week. I immediately experienced side effects and decided it’s just not worth it for me. I’ve been living well for three years and will keep doing what I’m doing, which is clean, healthy living. My osteoporosis is a different story. I am working with my doctor to find something that doesn’t cause serious side effects (it seems like all the medications do).

My wife is (reluctantly) about to start taking 5 mg. tamoxifen daily. I will split 10 mg. tablets- I don't think 5 mg. tablets are available.
What's the best time of day to take tamoxifen? Is it better to take with food (before, during or after eating), or without food? Any other relevant info would be appreciated. Thanks!!

@maymore
might try strontium citrate; you can always begin and stop it easily with no problems.
I am now in "normal" bone readings and "normal" bone quality (TBS) after using strontium citrate. It took several years because my problem was in my femoral area and that changes slowly, but I did it with no fractures and no side effects.

@jojo4cm I'm 72 & was also very apprehensive about the hormone-blockers. I started taking 10 mg (half-dose) of Tamoxifen on Jan. 1st of this year. I take it at night, before bed, with my statin. Easy breezy! A few minor things like an occasional mild headache or hot flash in the beginning, but am feeling more myself with each passing day. I wish I hadn't worried so much!

@jojo4cm I cut the Tamoxifen 10 mg also. The tablets are not marked for cutting, and it can crumble a bit. I’ve tried 3 different pill cutters, but now just use a single edge razor blade. It also is better if the pill is on a slightly softer surface, I cut them on top of a pad of paper.
If anyone has had better luck - please let me know!

Tamoxifen from Mayne Pharma cuts with less crumbling. Dr Reddy’s Lab and Aurobindo Pharma tend to fall apart more. I’ve been on this long enough to start comparing. I talked with the pharmacist at my nearby CVS and she said they could no longer get Mayne Pharma. Due to insurance coverage, I just changed to Walgreens and they also can’t get Mayne Pharma, I requested Aurobindo over Dr Reddy’s and I got it.
I may change to ordering from Mark Cuban Cost Plus Drug Company online. It’s $10 for 30 pills, 10 mg, thats a 2 month 5 mg supply.

I’ve read that taking Tamoxifen at night is better, but I’m afraid I’ll forget. My morning time is more consistent, and it just works better.

@triciaot and @jmab
Thanks for very useful info!!