Levothyroxine following Medullary thyroid cancer

Hi Radish1, I too have Medullary TC although I only had my op 6 months ago. 

Sorry I'm not going to be able to answer your question as my levels aren't right yet. But I read your post and wondered if you'd mind me asking you a question ? 

 I was interested to read your TSH level at 0.25 as mine has been really low. It was 0.05 three months ago and my consultant dropped the levo dose to 75mg. Then last month it was 0.09 so he's dropped it again to alternate days of 50mg/75mg. ( I was told the T4 was a bit on the high side but I can't remember the figure). I feel very fatigued still. So how long was it until you felt "normal" again? Have you had to keep having adjustments over the 7 years?

I hope someone comes along soon who has more experience and can answer your question. Thank you.

HiK9crazy, good to hear from you. TSH obviously is affected by thyroxine as is T4 and it’s the T4 which is particularly associated with feeling well as is T3 which is often not reported. Originally I was on 150 mgd and that was about right on the body weight calculation table. TSH was in early days like yours so I was reduced to 125 but though TSH is now higher it’s still lower than recommended.( min 0.47) I had lost about 12 kg body weight deliberately so my consultant thought the thyroxine at 125 for 5 days and 100 for 2 would work. T4 should be between 10 and 24 and mine is 14.  I feel relatively normal. I suppose it took me about 12 months to feel normal after TT though I felt pretty good after 6 months and during the first 12 months thyroxine was changed twice. My TSH and T4  is tested every 6 months.  I’m very confident with my Marsden consultant and I always accept her advice and always will. Her opinion is that TSH at too low levels can lead to osteoporosis particularly in women. I’m male so somewhat less concerned. Over the first 12 months my main bothersome concern was the feel of the scar boy after 12 months I rarely notice that apart from when it’s raining heavily when the scar tissue seems to predict bad weather!!  Anytime just ask though my opinion is not medically backed professionally, only as a patient 

Thank you so much for replying, sorry to hijack your post! 

So good to hear you're doing okay, apart from weather forecasting scar tissue! I've discovered my neck absolutely hates the cold, tightens up solid, I'm practically living in wool scarves! :) 

I actually found the surgery really tough and even at 6 months I'm still in alot of pain but I'm just taking each day at a time and I'm definitely heading in the right direction, albeit more slowly than I'd like! 

That's alot of really good info there thank you. I appreciate the advice from someone who's been through it all too. I absolutely trust my consultant aswell, he's brilliant. As I'm quite a petite woman, I guess it's hard to compare! I really hope this next levo change will start to raise my TSH. I'll remember to ask for and write down the T3 and T4 levels at my next appointment. 

Thanks again for replying, it's good to know someone who's further along with this type of cancer and doing ok to get valuable advice from. Do you still have scans every 6 months aswell?

No, scans seem to be dependent on calcitonin levels. As you probably already  know they look for calcitonin doubling times. Mine approx doubled in 3 years and broadly stayed static so my scans are approx bi annual and so far no rumours are visible.

If it helps, I do recommend looking at the US site for meddies as they have thousands of us and are very professional and very well funded , they have a web site which is a huge wealth of info on our cancer. It really helped me and I’ve asked the same question there and like previous questions I’ve had immediate replies from those who genuinely understand. 

That must be such a relief to hear there are no visible tumours on your scans even though your figures doubled. Yes I've had several calcitonin tests already, consultant happy so far. It feels a bit like watch and wait but I'm sure I'll get used to it. Fingers crossed for us both and thanks again for the reply.

Thank you, my daughter is on the face book one (I'm not on face book) and has gained alot of info and support from it. I didn't realise they had a website aswell, I'll check that out thank you.

Hi Radish1
I'm looking for people in a similar situation to me and think you might be. Just want to compare notes really. 

I was diagnosed with MTC and had a TT in Sept 2017. My levothyroxine dose settled at 75mg fairly early on. I've been fine since, no symptoms, but my calicitonin levels are going up very very slowly all the time. A year ago my consultant confirmed that it must have metastasised somewhere else and scans couldn't detect it then. As you say, they're waiting for the levels to double in 6 months. I have blood tests in June and December, so still waiting for the results of the December 2023 one ...

I'm wondering how you deal with the not knowing where it is or when it will be found or how it will be treated? Most days I'm fine but sometimes the worry takes root and I can't think of anything else. Do you know of any good resources that help? The AMEND Living with Uncertainty leaflet is good for a start but I'd like more. 

Thanks for any tips you have 

Jacquie

Hi Jacquie, we are indeed similar in many respects and I have the same calcitonin slow increasing. Started at negligible 10 ish and now seems to be temporarily settled at 17. To be honest I don’t worry about it and take each day as it comes. I’m looked after at the Royal Marsden but I also have other primary cancers so my only advice is to distract yourself to stop thinking. I turned off FB messages about this and other cancers and honestly feel better for not worrying or thinking because every day is a good day. Happy to chat here anytime if it helps. Good luck 

Thanks, yes, last time I looked at FB groups there was very little content relevant to me.