Papillary Thyroid Cancer Treatment Options

Hey Catlover,

I am also a cat lover, have 3 myself

I was diagnosed with Graves disease but then had sore throat, found a lump, which was a nodule, had a FNAC, was Thy3a and had another Thy3f, because of Graves disease and potential of having to have it fully removed in future I opted for the total Thyroidectomy. Came back as Follicular Variant of Papillary Thyroid cancer. Had RIA and have had excellent response to treatment.

However my side affects from the high dose Levothyroxine and my thyroid levels themselves are being a right pain, I've just had a big reduction so I'm hoping this lowers all of these as I was really starting to question if I should have kept half.

However it wasn't that easy as it was a positive margin and was seen in and around vessels so I probably wouldn't have taken the risk.

I know alot of people kept half and then had to get it removed later on and I'm sure they will come with some advice shortly.

I wasn't offered no research study but my situation I still probably would have gone for total.

Tbh though if you are in a research study they will.most likely keep eye on you and blood TG, TSH levels more so, so any signs of growth will be picked up either way.

All the best 

Thanks for sharing your story (and loving cats!) It’s so helpful to hear other people’s stories! 

Out of curiousity, how often do your thyroxine levels change that you take and how often are your levels tested? 
How do you feel on the thyroxine??

I know you said you were struggling at the moment so sending you positivity!  

So my original after surgery was 150mg they changed to 175mg after I saw my consultant oncologist he wanted 200 mg but my side affects of diarrhoea, palpitations, heat intolerance, headaches, he kept them at 175mg.

I had my bloods done for something else and my TSH was really high at 28 so they alternated 150/175mg daily.

I've just had my risk Stratification in December and 15th January he lowered to 150 mg as I can raise my TSH to 0.2-0.5 now but bloods came back at 26 the day after so my endocrinologist has lowered to 100 as of 2 weeks ago.

They can't change Levothyroxine often as they have to give time for affect. So leaving at least 3 months before but now they gonna check every 6.

I'm tired still have palpitations but on propranolol for them and my headaches are less, still loose bowels but it's ok, but with lower dose it's getting better I can feel already.

The higher dose is called thyroid suppression therapy and it's part of the strategy to treat and stop growth.