Exemestane and Thyroid

Hi Tawe68 

I’m Anne, one of the Community Champions here on the Online Community and, although I don't have the experience you're looking for, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

As you say you're feeling rotten, why don't you give your BCNS (breast cancer nurse specialist) a call and talk this through with her. She may be able to sort something out so you don't have to suffer for 6 weeks until you see the oncologist.

While you're waiting for replies, it would be great if you could put something about your diagnosis and proposed treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Thank you for replying to my post. I have an appointment with the occupational therapist this week and she's been great with helping me with the fatigue and other side effects so I can ask her too as well as phoning the nurse as well. I'm pretty sure that the lowering of the thyroid meds is what's made everything worse this week as I'm on such a high dose that the slightest change may well have thrown everything into chaos until it settles down again. 

Thanks again. xx

Hi . I’ve been taking Anastrazole for 10 months and I’m underactive too , 20 plus years .

I saw an enocrinologost just before I was diagnosed . Hormones work in tandem , so low oestrogen  will affect your thyroid . I was on HRT and he wanted to super charge my dose , so thank god I pushed back on that !

i started Anastrazole in April and by July my TSH had gone down to 0.1  I felt this was too low , so I spoke to gp we agreed to alternate my thyroxine dose between 125/100 , rather than 100. It’s common to do this . 

I did have fatigue for a few months late last year but it’s pretty much gone now but I don’t know if that’s because my thyroid is improved or I’m further away from active treatment . 

I was offered a change to Exemestane but that seems to have different side effects that sound worrying ( white blood  cells and liver ?). 

ive just booked some more bloods to check levels .

i really empathise because it’s hard to separate the thyroid issues from the lack of oestrogen .

x

Thank you for your reply. It's reassuring that it's probably part and parcel of the treatment and they've said for me to be tested every three months and have a liver scan regularly as well. I was on 225mg of thyroxine now on 200 after they originally told me to drop to 100! Fortunately I questioned the change in dose and they realised that it was a mistake. I've never taken HRT because of the history of breast cancer in my family. 

I feel like the fatigue is more than it was with just the thyroid and as I'm still in my first year of treatment I'm going to have to go through these things until hopefully it settles down. I'll ask to see an endocrinologist too as every time I've asked in the past they've said they won't see me as I'm usually quite stable. 

Thanks again for your reply. x

Hi been hypo since 1997 taking thyroxine at caries levels over the years currently on 125mcg daily never really got to grip with TSH however my fist infusion last Monday of EC has sent my levels crazy I didn’t think my symptoms were thyroid related put it down to chemo being a newbie . I  will see my doctor tomorrow before my infusion and hope to get some answers , I was told that I will not have immunotherapy later because of the thyroid issues x