Ovary removal screwing up my blood work

Posted by val97 @val97, 4 days ago

I'm 54 - ER, PR + and HER2 -. I had a double mastectomy in 23 , no chemo or radiation and had my ovaries removed in Feb. 25 because my new oncologist wanted to get me off Tamoxifen and get me on Letrozole. I had blood work done in March and some of my numbers were off. Just had it done this month and they are even worse! My LDL is off the charts, my fasting glucose is up and my ALT is elevated. After doing research I'm finding out that the sudden drop in my estrogen could be a culprit. Not only that, but now my bones are at risk, my emotions are all over the place and I'm having MORE symptoms on the new meds. I'm so frustrated! No one explained this to me! Anyone else have these types of issues? What changes did you make? Did it help?

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I’m right there with you about not knowing the consequences, although I’m postmenopausal and on Tamoxifen.

I’ve found tracking my symptoms and issues with an accurate timeline is helpful in trying to get the doctors to understand it’s real.
Lack of estrogen affects many organs and processes. We can only hope that research will find something less blunt than totally removing estrogen from our bodies. For now, it seems AIs have the best research, and they’re only adding on other drugs to increase its efficacy but not lower its use.

Neither my oncologist or the survivorship provider address the side affects of the tamoxifen. They will acknowledge them, but it is up to my regular doctor to help me with those issues. Had I known that earlier I would have been a happier person!

I’m currently seeing an endocrinologist and have an appointment with a cardiologist. I did see an oncology neurologist one time. If I were on an AI, I would probably want to find a recommendation for a good neurologist and a knowledgeable vascular specialist. Lack of estrogen can cause vasoconstriction, loss of collagen, and stiff veins. Perhaps a vascular specialist could provide some help before it affects the vascular system in the heart, brain, and legs.

My current issues related to the tamoxifen are new onset hypothyroidism, elevated lipoprotein-A, enlarged adrenal gland, and memory issues. Whether any of these are severe enough to stop the tamoxifen - I haven’t determined that yet. I’ve been taking it 3 years. Levothroxine has been suggested for my thyroid, a higher statin dose for the lipo-A, and the adrenal is being monitored. Sigh.

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@triciaot

I’m right there with you about not knowing the consequences, although I’m postmenopausal and on Tamoxifen.

I’ve found tracking my symptoms and issues with an accurate timeline is helpful in trying to get the doctors to understand it’s real.
Lack of estrogen affects many organs and processes. We can only hope that research will find something less blunt than totally removing estrogen from our bodies. For now, it seems AIs have the best research, and they’re only adding on other drugs to increase its efficacy but not lower its use.

Neither my oncologist or the survivorship provider address the side affects of the tamoxifen. They will acknowledge them, but it is up to my regular doctor to help me with those issues. Had I known that earlier I would have been a happier person!

I’m currently seeing an endocrinologist and have an appointment with a cardiologist. I did see an oncology neurologist one time. If I were on an AI, I would probably want to find a recommendation for a good neurologist and a knowledgeable vascular specialist. Lack of estrogen can cause vasoconstriction, loss of collagen, and stiff veins. Perhaps a vascular specialist could provide some help before it affects the vascular system in the heart, brain, and legs.

My current issues related to the tamoxifen are new onset hypothyroidism, elevated lipoprotein-A, enlarged adrenal gland, and memory issues. Whether any of these are severe enough to stop the tamoxifen - I haven’t determined that yet. I’ve been taking it 3 years. Levothroxine has been suggested for my thyroid, a higher statin dose for the lipo-A, and the adrenal is being monitored. Sigh.

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That's very interesting you are still on Tamoxifen post menopausal. I was also on Tamoxifen for over a year and still perimenopausal. I just moved and my new oncologist wanted me to have my ovaries removed so I could be taken off Tamoxifen put on Letrozole. However, now it looks like the surgical menopause + letrozole has raised my glucose mildly, my ALT mildly and my LDL cholesterol in a huge way! My oncologist is now putting me on exemestane to try to control this and is also hoping it will bring down my horrible hot flashes and joint paint as well.

What is super frustrating to me is my primary (just out of residency) pretty much put the blame of my number fluctuations on my diet and said it "might" have something to do with my cancer meds. (By the way, I've been exercising and trying to watch my diet and my triglycerides are down 37% to 74 as is my AST which she failed to even look at.) And then as I tried to discuss how much the surgical menopause is affecting me, she said, "it would have happened anyway." After doing some research, I found out, no, surgical menopause is VERY different from natural menopause and that its extremely traumatic on the body to have surgical menopause and the AI all at once. In fact, that dramatic change can lead to issues with blood work and body functions for 6-12 months as the body tries to stabilize.

I'm very tired of unsupportive primary doctors who don't understand post breast cancer care. How do I find one that is helpful?

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I was given a choice of tamoxifen or AI. I’m lower risk for DVT, uterine cancer, and no PCOS. But I’ve previously had tendon/fascia issues, a few times each in hands and feet.
My overall recurrence risk is low so I felt okay not taking an AI. But still, DCIS if it comes back can be more invasive, and may be more likely to grow a new one.
So Tamoxifen it is.
I do have thermal regulation issues, I cry easier, I have a little vaginal discharge but no infections, and I’m pretty sure my memory is worse (but I’m 71, so some is just aging).

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