Tamoxifen, Aromatase Inhibitors, low thyroid function

suzieq · December 2014

For anyone on Tamoxifen or Aromatase Inhibitors suffering depression, anxiety, or weight gain it may be worth having your thyroid tested. Here is link to medical journal I have quickly found.

http://www.ncbi.nlm.nih.gov/pubmed/9587161

I have tried Aromatase Inhibitors and on Tamoxifen up until 2 weeks ago. What I discovered on these drugs is they either interfere with my thyroid or affect thyroid medication resulting in depression (depression is a major side effect of under active thyroid)

For the past 20 years I have been successfully treated for an underactive thyroid living a normal happy life until breast cancer of course. Normal lab test results for TSH (thyroid stimulating hormone) is usually within the paramater of 0.04 to 4.0. My level (we are all different) where I am happy, well, active and energised is between 0.04 to 3.0. Otherwise I suffer dreadful depression and anxiety.

I saw my Oncologist today regarding depression. He wrote me a script for anti-depressants. When I tried to talk to him about the effect of Tamoxifen on my thyroid he was dismissive saying it doesn't happen. He then went on to say I would be dead in 18 months if I went off them. He was quite cold and rude. How does he know that? Does he really believe he is God? I have only started seeing him after moving state! My cancer was only grade 2 stage 2 no lymph involvement needing only breast conserving surgery and radiation. I opted for chemo as I was told it gave me another 4% chance of survival - but I didn't need it. It seems to me women are fair game if they arrive at an Oncology appointment in tears trying to find answers.

suzieq · December 2014

Yes, I must admit he rocked my world yesterday. I was so upset. It is so hard making decisions about our treatments. I went to my GP today and as it turns out my thyroid is OK so I can't blame that either. Maybe that's why he got so angry with me. I only ask questions because I am trying to figure out what is happening, the cause etc so I can make proper decisions about what is right for me. In the 2 years since surgery I have barely been on anything. Every Aromatase Inhibitor I tried gave me serious side effects. Femara put me in hospital as I was allergic to Letrozole. I thought I was going to die. I am about to start the anti-depressants tonight and report back to Oncologist in 5 weeks. If I have improved I will be put back on Tamoxifen. Will let everyone know how I go.

Merlins mum · December 2014

Well good luck with the anti depressants. It will be good to hear how you go. It seems that everything we take has some unfortunate side effect.
And he shouldn't have got angry with you. It is hard making decisions. It seems we have to weigh risks against benefits and of course the medical profession can do nothing other than follow the line of "proven to lengthen life span" rather than factor in quality of life.
It's a tricky business huh.
Still no improvement in my libido tho even with stopping the tamoxifen. Damn!

suzieq · December 2014

My libido packed up and left long ago. There are plenty of treatments for male sexual dysfunction - nothing for women! Seems to be least of my problems currently. After the way my Oncologist spoke to me last week just because I dared asked "God" a question, I am thinking of taking my chances and going natural. His behaviour was the last straw for me. My system can't seem to tolerate anything since chemo and rads! I took just one anti-depressant and was out cold for 24 hours. My husband said it was like I was hit with an elephant hyperdermic needle so I stopped after one!. Do I go back and tell him I can't take his antidepressants? Not me, not game! And, I am still getting UTIs. Who do I tell? My GP just keeps giving me antibiotics. I am so frustrated. Wouldn't it be nice if one medico were able to treat the person on a whole.

suzieq · December 2014

My libido packed up and left long ago. There are plenty of treatments for male sexual dysfunction - nothing for women! Seems to be least of my problems currently. After the way my Oncologist spoke to me last week just because I dared asked "God" a question, I am thinking of taking my chances and going natural. His behaviour was the last straw for me. My system can't seem to tolerate anything since chemo and rads! I took just one anti-depressant and was out cold for 24 hours. My husband said it was like I was hit with an elephant hyperdermic needle so I stopped after one!. Do I go back and tell him I can't take his antidepressants? Not me, not game! And, I am still getting UTIs. Who do I tell? My GP just keeps giving me antibiotics. I am so frustrated. Wouldn't it be nice if one medico were able to treat the person on a whole.

DaisyMarigold · January 2015

Hi Suzie - sorry, I've been out of the loop on all this - away and busy with work. Can you find a really good medical herbalist? I may have mentioned this before, but mine did her PhD in herbs/menopause, has had breast cancer and has treated me for menopause symptoms for the past 15 months. I also opted not to take Tamoxifen because of the side effects, so she has me on natural stuff. I too have really bad reactions to some medications. Even with the herbal tonic, if she puts the wrong thing in it, my hot flushes become really bad. All this costs a lot - about $300 a month - but it's worth it for quality of life. You can take things like Kava and St Johns Wort for anxiety/depression, and I find they do work. She's in Melbourne, but she might do a Skype consult with you? Then post you the preparations? Let me know if you want her details, and I'll private message you. And I'd tell the onco to take a flying jump. No, actually, just cancel the appointment and don't go back and waste any more money/emotion on him. His behaviour is shocking. Take care, Pam xx

suzieq · January 2015

Hi Pam, Great to hear from you. Apparently my physiology doesn't process these drugs. I have tried all the Aramatose Inhibitors and Tamoxifen. What happens with me is that I am fine for about the first 9 weeks then 'BANG'. All hell breaks loose. Because I am not processing it, the drug builds up and becomes toxic. I am seeing a fantastic Naturopath and my GP is also on his side. I actually read a medical journal where specialists were talking about this subject saying 50% of women don't complete the 5 years of hormone therapy due to side effects and talked about there being plenty of plant based natural aramatose inhibitors and further research is needed . To my knowledge that never happened. Naturopaths seem to know a lot about estrogen. Apparently, not all estrogens are bad. My Naturopath and GP believe my system may not have been processing estrogen as it should and the estrogen built up. I have also started on a Paleo diet as my GP likens wheat and grains as the new nicotine! She says it is poison. I can't tell you how much better I feel off wheat. For the first time in 20 years my breasts aren't tender and sore, I am not carrying fluid and IBS symptons are gone. So between my GP and my Naturopath I am feeling better than I have for 20 years. I did give my Oncologist the flick. It comes down to this: When I got breast cancer they gave me an extra 4% if I had chemo - so I did it. They gave me an extra 20% if I took hormone therapy. Well, if I went through chemo for 4% why wouldn't I complete hormone treatment? The answer is: because I simply couldn't tolerate any of them at all! The Oncologist didn't care if I died of other causes as long as it didn't involve a cancer cell. I can tell you I would have died of other causes if I stayed on hormone therapy. Suexx

bluejen · January 2015

I feell for you..I am in the same situation..although menopause has had a lot to do with it also.

I did find myself eating a bit more than I should,but, I soon put a stop to that and I exercise a lot..walking, weights etc. and small meals NO RUBBISH..it can be done..I have been on Tamoxifen for nearly 4 years now, it was very hard at first..aching legs at night time...so painful, so many painkillers...BUT I got myself over that.....I am proud that I have come this far. My husband isn't understanding at all..and that makes matters very difficult...