Follicular hurthle cell.

Welcome to the forum Duckling, I hope it reassures you that I felt exactly the same after my surgery (I didn’t have RAI) both emotionally and physically exhausted. My actual care on the hospital ward wasn’t good either and I was in 7 days.

That was 2 years ago and I look back now and realise I expected far too much of myself in recovery, far too soon! Your body has had a shock and many of the body’s systems need time to recover, most importantly our minds! You need to process everything and adjust to what becomes your “new normal”. I resisted that expression but I’ve come to realise it’s so true. Some adapt really well but we’re not all the same and our cancers and surgeries are all individual so can’t be compared (another lesson I learnt!)

Add to that you are now taking synthetic thyroxine and for a minority of us, that can take a long time to balance to where we feel “good” again. I would say most importantly ongoing make sure you have a good Endocrinologist who will listen to how you feel, not just be blinkered by what your TFT numbers are. Make sure they are testing T4 and T3 not just TSH. My saving grace was my Clinical Nurse Specialist who was a lifeline for the many questions I had when your consultant feels out of reach.

Hopefully you have a referral to physio for the shoulder pain. This does usually ease with time and specific exercises. After my NHS sessions ended I found help with a private physio (had to dig into savings!) who helped me see my body as a whole that I needed to heal holistically, that was quite a turning point for me.

In the earlier days I found a Maggie’s centre near me and they were so helpful, just for someone impartial to listen to me cry and let out my feelings without it being a family member who would just get upset and scared. They also run courses to help you adapt back into “normal” life going on around you.

I recently started an antidepressant (also for pain relief) which I had been reluctant to take but I can honestly say it has helped me back to a stable emotional state, which has helped me accept what’s happened and where I am now. I wish I started them sooner. So don’t be afraid to ask your GP for help there if you need it.

Hope you find some of this reassuring and helpful. I’m sure others will be on soon with their experiences especially of the RAI.

If she doesn’t mind I’ll tag River71  here as I think she has Follicular Hurthle cell too and is often on the forum with her help.

Best wishes x

THANKYOU. Really appreciate you finding the time to reply x

Hi Duckling,

Welcome to the forum. Please feel free to ask any questions you have here, it's  a very supportive and knowledgeable place that's helped me a lot since my diagnosis with Hurthle Cell cancer in May 2023, especially as my hospital stays were difficult and I've had little support from any staff.

k9crazy's message is spot on and I echo their advice. If you have a supportive CNS (sadly I don't) do lean on them, that's what they're there for. Do be gentle with yourself, it's very early days in your recovery yet and celebrate any little wins. I'm learning to be a better friend to myself and not to judge myself so harshly for not getting everything I want to do done. If my body needs rest, I rest. I've learnt how important thyroid hormones are to the body in general and as k9crazy says it can take a while to get used to the synthetic Thyroxine. I'm struggling physically with that still, myself actually.

I had RAI like you and yes, it can leave you with a very dry mouth. I've got dry eyes as well! Make sure you keep well hydrated with lots of water daily if you can, that helps me a lot. Do ask if you have any other questions and best of luck with your recovery. Remember...be gentle with yourself and as kind as you'd be to a friend or relative recovering from cancer surgery and treatment.

Thanks River & k9crazy for your encouragement .

I am finding it strange trying to do “ normal” after such an intense period of 3 surgeries & RAI. Won’t get results of full body scan till 13th may. Feel very low & unmotivated & very achy! I’m finding my neck when I wake up in mornings, especially stiff & sore. I’m hoping this will improve in time. We are an hour from the hospital & nearest Maggies centre. I have arranged to go there for an appointment (Maggies) but I’m getting anxious going anywhere lately. Keep feeling overwhelmed by doing anything.
I’ve yet to be told what happens re thyroxine levels, was put on 150mg beginning of February but no tests yet. I’m guessing the consultant has a plan & at some point might let me know it .
This all feels quite surreal, the diagnosis was a shock & im seeing “ McMillan” on things & walking into oncology dept feeling like I’m trespassing. & then I look in the mirror & am abruptly reminded it’s real. My heads in a very weird place right now. 
thanks for being here.