I am on herceptin and have now been diagnosed with an over active thyroid. My consultant has not treated anyone who is taken herceptin before. I t could be hereditary or could be caused by the herceptin. Has anyone else out there got this problem?
Hi Mary
Not on Herceptin.
Had overactive thyriod years ago, took tabs to block my body making thyroxine and took thyroxine tabs. I took these for 6 months then stopped (my choice) luckily for me it had righted itself, thyroxine levels normal, have been for 17 years. It is hereditary, well was with me, maternal grandmother. I have had reg. check over the years and so far not had any more probs. Has your consultant referred you on? How was it identified? symptoms or bloods. I was physically exhusted, could not get to the top of my stairs without collapsing at the top, heart pounding. Took quite a few trips to gp before actually took bloods to diognose, thought I was going crazy! Not nice.
All the best Alice
Hi Mary
I had an overactive thyroid 6 years ago long before I got BC.
I was given tablets to block it for 18 months but this did not work for me so I had radioactive iodine!!
This changed my thyroid to be under active for which i now take thyroxine but its much more controllable this way round.
I believe it is hereditary and is sometimes brought on by stress!!!
Take Care
Kay x
Hello Mary,
Yes, I was in exactly the same position. Started Herceptin last summer, then diagnosed with Overactive Thyroid (Hereafter referred to as OT - it’s much too long to type!) in October.
Firstly, they want to get it under control and I was put on Carbimazole and Beta Blockers. I came off the Beta Blockers almost straight away as they made me feel awful and I didn’t have the typical OT jitteriness anyway. Arranged with Endocrinologist that I would ask the nurses to add a Thyroid check to the bloods I was having taken every 3 weeks for Herceptin, so that I didn’t have to endure any extra “hunt the vein” attempts.
Next, they have to try and find out why this is happening. It may be just a one-off flare up (Thyroiditis - quite common after giving birth) or it could be your antibodies and Graves’ disease. (sounds much worse than it is! - the bloods should tell them). In my case, I had a Goitre and I had to have a CT and an Ultrasound guided biopsy to determine whether it was a “hot” nodule (good) or not. Hot nodules will never self-correct and Carbimazole is not a drug for life, so the next step was Radioactive Iodine in May. This consisted of: go to Hospital, take one capsule, go home. It seems to have worked and literally nuked the nodule.
Frankly, I have found the Endos very nice, but too laid back. Their specialism is not, in the main, dealing with emergencies (apart from Diabetes) and I’m afraid I played the “I’ve already been through so much etc” to get them to get a move on. They were very sympathetic and I probably didn’t need to, but I was completely out of patience. Just when everything was improving slightly (after Mast/LD recon, chemo, 5 weeks Radio, onto Herceptin and Tamoxifen), I suddenly felt awful again - dreadful fatigue.
Good luck with it all. I’ve found the British Thyroid website quite helpful and informative, but no active chat rooms! Please ask any questions or PM me if you want.
Best wishes.
I was dx with an overactive thyroid 12 months before BC. I should have stopped taking the thyroid medication last August (18 months after dx) but I was doing chemo at the time. It was decided to leave me on the thyroid meds to avoid anymore disruption to my body. I will now stop taking the thyroid meds next month. This scares me as I don’t want my thyroid to go wrong all over again. It took me about three months to get back to normal the first time. I am currently on herceptin - no 12 due this week.
Thanks everyone you have all really helped me. I have just had an ultrasound and am on carbimazole tablets. I have to have weekly blood tests because they have not had anyone on Herceptin and are worried about my white blood count. They worried me to death. I go back on the 14th August. I do seem to have a bit more energy so I am keeping my fingers crossed. I am so fed up of feeling so tired.
Thanks again. I am now going on the British Thyroid site for further information.
Mary
Hi Mary,
My Oncs didn’t seem that bothered (or frankly, at all interested) in the thyroid until I had to have the Radioactive Iodine. Then one Onc had to phone the manufacturers of Herceptin and consult one of her colleagues who treats Thyroid Cancer. (That fair cheered me up!). The consensus was that I had to leave a minimum of 6 days between Herceptin and the Radioactive Iodine.
As to Carbimazole, I just had my 3 weekly Herceptin bloods and no extras. The white blood thing is mostly, I think, if you have an allergic reaction to the Carbimazole and you suddenly develop a very sore throat etc. It’s all in the patient leaflet. I developed a cold and sore throat, but I don’t think it’s a problem unless it happens straight away, as soon as you start with Carbimazole.
Happy reading. I know only too well what you mean about the tiredness. I’m afraid you’re going to have to be patient a bit longer, but I’m eventually feeling a bit more human.
Best wishes.
Thanks for your help Alloway. My bloods have known shown the thyroid to be underactive. I was whisked off the Carbimazole. They haven’t a clue why. Am awaiting further apointment when I get back off holoiday. life does not seem to be easy. I do however seem to have a bit more energy.
Mary