Upcoming completion surgery and RAI

Hi Langdaleman,

I have not had to make any significant dietary changes other than ensuring I don’t consume food/drink within an hour of taking thyroxine.

Although we are all different, I would still say “don’t worry”, your oncologist/specialist in conjunction with your GP will help with amount of thyroxine but be prepared this will not happen quick. As you can see from my profile (which I realise I should update) I have had varying dosages over the past couple of years and have now maintained. But be assured I have not had any negative reactions whilst trying to find the correct dosage. My lifestyle, energy levels and general well-being were not affected.

The one bit of advice I would give since being diagnosed, is to ‘Trust your doctors.’ In the beginning I questioned everything (to myself). I was concerned when RAI wasn’t recommended, I was concerned when they lowered my dosage, because I was concerned the cancer would return or worse spread. I read everything I could find and when I read something negative, I pushed to find a positive.

I had my annual visit with my specialist yesterday and she is very happy with my ultrasound and blood results which have been constant and is happy to see me every 2 years now, with 6-month blood tests and follow up with my GP. Although I will continue with 3 monthly blood tests for my peace of mind.

The MacMillan Support Group has been wonderful in helping me get through this. I used to read every post and now find I skim over and read mainly activity relating to Follicular and Hurthle Cell.

I wish you luck with your upcoming surgery and RAI.

HI Langdaleman

I had half my thyroid removed in January 2020 and, as a 3cm hurthle cell carcinoma was found, completion surgery in May.

All went well, and no further cancer was found in the other half of my thyroid, so no further treatment is needed, just regular checks. Like you, I was anxious about not having a thyroid and getting the right dose of levothyroxine. I would say I'm still getting used to it, and am feeling quite lethargic, but it's early days (and in any case I am someone who feels tired and unmotivated a lot of the time anyway!). Will have my levels checked again in around 3 months. Overall I would say that my fears were unfounded, in that, while I don't feel great, I am not so exhausted that life has ground to a halt, which was my concern.

Not sure about diet. Others might know more. I certainly didn't get any advice from the hospital.

Many thanks and good luck for the future

Thanks for your helpful reply. I feel pretty well at the moment and find it strange that I have agreed to surgery and meds which might n\make me feel not as good. Glad to hear your good news.

Hey Langdaleman,

You are most welcome and no problem at all.

From first surgery I have never felt any different other than a little jittery, not sure if this was nerves or the initial high dose.

Personally, I would not (did not) hesitate to have completion.

You are healthy and should not have any problems.

I hated the idea that I would now have to take medication, but when my daughter pointed out that I take vitamins every day……….I have a different mind-set. lol

I do take my levothyroxine at 3:30 am everyday as I go to gym early morning and need the hour before having a drink. I have no trouble going back to sleep, but I can say I have missed a couple of doses (must have been too tired and hit snooze and back to sleep). I just started up again same time next day and had no side effects at all. I did check this with my GP and she said I would be OK.

All the best.

Yes, the docs base their decisions on research evidence so I've been very happy to follow their advice. It DOES seem strange when we are feeling basically well to go through surgery and face the prospect of taking medication for the rest of our lives. But it's to keep us well for years to come so, to me, seems very much worth it in the long run. 

Do hope all goes well. Keep in touch and let us know. 

Thanks again

Thanks.