Hi , I’m feeling very low and put it down to a virus or the time of year. Just looked and realised it was a year today that I had my completion thyroidectomy.
The second half was cancer free so I should be feeling positive?
Going on to synthetic thyroxine has changed me and my energy levels , exacerbated by the RAI treatment which completely wiped me out and still recovering 7 months on.
Have low Ferritin which I’m not sure if it’s related to the RAI.
I recently saw my last clinic letter on my records stating that I had anxiety! I don’t think I do but I asked more questions than possibly others do re follow up post surgery.
Having seen people write about Risk Stratification and Scans on here, I asked those questions and about my type of Thyroid Cancer- Hurtle Cell Cancer. Surgeon was quite vague.
I am not under a Thyroid specialist centre and it has been decided that the ENT surgeon will follow up rather than the oncologist or an endocrinologist.
Has anyone else felt like this?
Im back at work and trying to live a normal life.
I have had good support from a local cancer charity and counselling/ mindfulness.
I just like to know what’s what? I like to have a clear plan in my head and I feel that I don’t know anymore a year on.
Hello 60sBabe
I am Brian one of the Community Champions here at Macmillan. I have just noticed your post has gone unanswered. I can't answer it myself as I have a different cancer, however by me replying your post will be "bumped up" to the top of the page and I hope seen and answered by other members of the Thyroid cancer group.
Best wishes - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
Hi there,
I've just seen Millibob's reply to your original post 60sBabe and did not receive your original post in my Inbox. This seems to happen sometimes, unfortunately.
I'm sorry to read that you're finding recovery difficult. I want to let you know that you're not alone. I had my completion surgery in August 2023 and since then have struggled with brainfog, intense memory issues, muscle pain and weakness and general fatigue. I was diagnosed with Hurthle Cell thyroid cancer like you.
I've had brain scans and CT scans and many blood tests as well as frustratingly dismissive appointments with a Neurologist and a Endocrinologist since then. I've now been left to my own devices other than what I understand is the usual protocol for this stage after thyroid cancer of 3 monthly bloods and appointments with my Oncologist which I suspect will be very quick and cursory as long as my bloods are within the expected ranges of course.
I'm puzzled as to why you won't be seeing an Oncologist yourself. Does the ENT specialist have an interest or background in Oncology? Can you ask?
I've never had risk stratification mentioned to me other than in terms of Hurthle Cell being the second most challenging kind of thyroid cancer to treat but nothing really personalised to my own case any more than that.
Like you I ask a lot of questions at my appointments, in fact I take a notepad in with me with them written down so it's possible that this could be taken by the medical professionals as a sign that I have anxiety too. To me it simply makes sense to go prepared to appointments about an illness as serious as cancer unquestionably is.
Good Morning River71
A great reply, thank you for responding.
and did not receive your original post in my Inbox. This seems to happen sometimes, unfortunately.
Have you used the "bookmark" (top right on the green bar at the top of the page) and if so just check that this forum is included. I know you are a member of the forum. If you have done this may I suggest you delete the bookmark and then bookmark the forum again and see if this works.
I hope that helps.
Best wishes - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
The other option is to go on your settings and check e-mail notifications is ticked.
Best Wishes - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
Hello again!
Just did that and yes, email notifications have always been enabled in settings so it's still a bit of a mystery.
I try to remind myself to not depend on Inbox emails to notify me about new threads and to come on here and check directly but, as I said in my reply to 60sBabe, I've got a fair amount of brainfog and memory issues now so I'm sure I do miss threads at times. I'll write myself a reminder in my physical diary as well as on my phone to check the forum now and again. I use LOTS of Post it notes too so I'll add one for this forum to my collection!
Thanks again Brian.
It's not a problem. i have been on Hormone Therapy medication for my cancer (Prostate Cancer) and one of the side effects is "Brain Fog". It's so annoying when you can't remember simple things - my wife reminds me of that when I remember to go out with my mates for a drink!!
Best wishes - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
Fair play to her Brian! I can recommend Post it notes of different shapes and colours around the house to jog the memory...maybe you could get ones shaped like a pint glass!
I'm hoping that my brain fog might lessen a little when my Oncologist starts experimenting later this year with lowering my daily hormone dose, Levothyroxine in my case. I've got my fingers crossed that that'll be the case.
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