How do you feel after thyroidectomy and how long did you wait for results after iodine therapy?

Hi ziela861 

I'm sorry to read of your surgery in February. I have noticed that your post has not had any replies. I have had a different cancer type to yours but by responding it will place your post back at the top where it may be seen by more members. 

With regard to no news from your doctor. Do you have a Specialist Nurse you could contact, if not, it may be an idea to contact your Consultants Secretary. The phone number will be on your hospital letter. If this is not possible, can I advise that you contact the Macmillan helpline, this is the link https://www.macmillan.org.uk/about-us/contact-us

Best regards

A x

I can't say that I really had hair loss. A little bit of thinning at times but once I was on top of the thyroxine dose, it was OK again. My hairdresser would know if I'd had to come off the T4 for tests or RAI because she could feel it in my hair, but it never really fell out.

The periods - I think you need to see a GP about that. It might be nothing to do with your thyroid cancer and it sounds like something so unpleasant and distressing that you probably want to get that looked at. The oncologist may well tell you it's not related but that shouldn't be happening.

Not hearing about the iodine is annoying but - sorry to say - not entirely unusual. The first iodine dose is to kill off any cells. The scans that they take really aren't much more than a fuzzy mess and of very limited diagnostic value. My oncologist said the follow up scan 6-9 months after original RAI is the important one. Or, the thyroglobulin results.

Hi Barbara! Thank you for your message. I will take your advice and talk to GP.  I did not know all these things about iodine results, scans and did not even know what thyroglobulin test is until I just googled it after you reply. I do not remember doctor telling me I am going to wait months before I hear from him. Ok so now I will just wait... But waiting for months when you just want to know if you still have cancer ehhh. Ok will wait then. Thank you, take care

For most oncologists, thyroid cancer is such an 'easy' one for them to deal with that they tend to forget that it's not easy for the patients. Sure, the doctors know the statistics, and feel that we really shouldn't be worrying. What they forget is that WE don't have decades of experience and exposure to multiple successful outcomes on which we can be as relaxed as they are.

Also, often the doctors don't take the time to explain things clearly. It's not wildly complicated but I think a lot of them see the patients eyes glaze over when they start to explain and after that, they don't push it.

Your RAI was treatment. The outcome isn't going to be known for sure at this stage. 

That said, I would get in touch with the hospital or the oncologist's secretary and ask if you can have some kind of feedback about the RAI. Tell them you're anxious (that seems to be a great trigger word these days). 

Hi Barbara! Thank you again for your reply. I just read about you. May I ask, are you afraid that cancer can come back to you anytime? 

Everything what you said about thyroid cancer is true I guess. Feels like doctors do not take us seriously because it is 'just thyroid CANCER - yes, but it is still Cancer right?

I tried to contact onkology team, consultants, secretary, anyone. First I was calling them once per week and last time it has been once per day to ask about my results. I have been saying that I just want to know how was the treatment and this is it. They have been saying they passed my message to the doctor and she will be in touch with me. So I am waiting still. 

Now I will be more patience because I know from you how treatment works and that it needs some time. Thank you for that!

I would go on the principle that no news is good news @ziela861 as they are usually very quick at calling you in if there is something wrong.  I have just had my second round of RAI and waiting for an appointment with my Oncologist, which is supposed to be 6 weeks, but it is over a month now and I haven't heard anything yet.  The first time it took me 4 months to see her after RAI, but there were a few hiccups.  I know she is on holiday for 3 weeks at the moment and that will delay things too.  My hair is coming out when I brush it too, it is so annoying because mine is fine anyway.  I know some people mention taking Biotin supplements but they can interfere with blood test results so you have to stop taking them at least a week before a blood test I believe.  I am using Tresemme Biotin Shampoo, but my hair is still coming out and keeps blocking our sink up.

Hi, thank you for your message.Cam you tell me why are you waiting for another round of RAI? Do you know why we have so much hair losses I mean, is it because of the hormones? And would this come back to normal finally?

Take care,

My cancer has spread to lymph nodes and lung @ziela861 and the first round of RAI didn't reach the lung and the nodule has grown and another 2 tiny ones appeared.  So they suggested the next step is try again which they did.  I am assuming there is a link between hair loss and hormones but I am not sure.  Other people have mentioned the same that they have experienced thinning of their hair.  I have no idea whether things will settle down, I am one year out of surgery and sometimes I think it is improving but then there is a handful in my brush on a morning.