6 Months Post Thyroidectomy and RAI - potential recurrence already?

Hey sorry your going through more worry, I haven't had recurrence but I have had some pains like achy ones not constant earlier on after my total thyroidectomy in September I was told it's probably just my neck and things inside healing etc

Lately I've spoke to my nurse as had different pain higher up and she was going to speak with my surgeon and I've heard nothing back.

Your right to worry and overthink it as this stuff is scary and your supposed to notice anything so they can check you and hopefully find a reason and just hope it isn't a recurrence! 

Sorry I've got no advice but it could and couldn't be in my opinion I'm just glad you have already spoke with your nurse so hopefully she will get back to you asap!

Thanks for replyingTrinityTrace I think when I was diagnosed and then treated I thought the worst was over but actually the constant worry of it coming back is so much worse.  I am constantly checking for lumps and bumps and every feeling/ sensation is being questioned.  

I never know whether to mention things or not, I often find the gp to be dismissive.

Hope you hear back from your nurse soon!

I know it's a horrible cycle we are in!

My worst right now is dealing with the side affects from the Levothyroxine as it's high dose! 

But yeah I have an appointment on the 4th with my oncologist but previous my bloods have been abnormal and had to tweak my meds to alternate and said he will discuss results when I see him and to me like oh my what he going to say? Has he seen something or suspect things? But I'm hoping he just wants to reassure that it happens and this is part of the process! 

Like I said it's horrible his experience and it's lifelong so we need to find ways to deal it's just so fresh and we have never experienced this before so I'm dealing, might not be very well but I am trying!

Big hugs xx

Good for you.  I know, we have to stay positive.  It's just bloody hard sometimes isn't it?  What dose of levothyroxine do you take at the moment?  Are you finding it hard to find a stable dose? 

I have only had my bloods taken once since my RAI in March which has surprised me as I thought they would check regularly in the first year.  I have heard back this morning and they want to do bloods to test the thyroglobulin levels and also TSH so we will see what they have to say when the results are in.  More waiting!!

Hey,

I was on 175mg a day and he wanted to increase but side affects he decided to keep same, my bloods have been abnormal so I'm now on 150mg alternating 175mg daily.

I've just had my second lot of bloods done since my RIA with thyroglobulin as that's is what indicates if it is reoccurring, if that increases then it is growing.

They arnt trying to find a stable dose for me atm as they doing the thyroid suppression therapy with me, so it's high dose unless my body shows issues.

December I'm having a risk stratification done to assess my risk of reoccurrence, low, medium or high and that goes by the thyroglobulin numbers over time.

It is very hard to remain positive and it's hard to accept this is for life, not as hard as this first year but it's always going to be a thing!

Hi, 

I just had my oncology follow up yesterday, post RAI treatment. Due to having Hurtle Cell cancer I was told that the RAI treatment is a done in the hope that it gets to my cancer cells as they are not iodine receptive. it’s a bit hit and miss! 
I have been advised that I should have yearly ultrasound and 6 monthly blood tests. Informed that Thyroglobulin levels aren’t very reliable with my cancer especially as they weren’t raised even before I had surgery! 
It seems that it’s very difficult to monitor as recurrence and just up to us. I have Barrett’s Oesophagus and often have sensitivity when swallowing and worried I won’t know which condition is causing any symptoms! 

Is anyone feeling post RAI fatigue? I’m 10 weeks post treatment with 3.7 dose and still struggling. Planning on returning to work in the next week as a nurse! Not sure if I’m ready.

It’s seems that the down side of having a rare cancer is the vagueness of symptoms ( I never had any) and lack of information about it in general.

I hope your symptoms aren’t a recurrence and you get some answers soon.