High Levothyroxine Levels & The Wait

Hi . Can I offer you a warm welcome to the Macmillan Online Community. Good to read your 6 months post surgery and you've finished your RAI. Now's the wait until your next scan.

My cancer is different but I did have a Sub-Total Thyroidectomy back in 2003 when I developed Graves disease. After treatment I was put on a low dose of Levothyroxine so I'm sorry, I can't help with your particular question. Have you looked at the British Thyroid Foundation website - they might have a support group if no-one on this forum can help. Just click on the link British Thyroid Foundation

The Macmillan Community is organised into dedicated support hubs. I see you’ve joined our Thyroid cancer group, this will be a good place to meet up with others making the same type of cancer journey. Hopefully someone will be along soon to answer your question. 

It’s always helpful to others if you write a little something (or a lot) about yourself and your journey to date. You can enter it into your profile (click on your username and select “Profile”) It’s helpful to other members with a similar diagnosis who can then hopefully answer your questions. It also means that you don't have to keep repeating yourself. You can amend or update it at any time. 

The Macmillan Support Services also provide lots of information, support, financial guidance or just someone to listen.

Most services are open 8am to 8pm, 7 days a week and it's free to call on 0808 808 00 00 have a look by Clicking here to see what is available and we also have our Ask an Expert section, but do allow two working days for replies from our expert team.

Sending you welcoming hugs B xx

Hello Siobhanad

Sorry to hear you have been feeling so bad. I had my surgery in August and RAI in October last year so looks like we are on a similar path. I started on 175mcg of levothyroxine as was advised that it was important to keep my tsh suppressed at least until my scan which is in July.  At the early part of this year I did report to my GP that my heart rate was running quite fast and quite a few days I had low energy and would not get through a full day without falling asleep. My dose was reduced to 150mcg and while I often have a nap in the evening my overall energy levels have improved. My TSH is very suppressed and T4 is at top of range so not expecting any adjustment till my scan results are known. The British Thyroid Foundation do have volunteers manning telephone lines and their thyroid experience is noted alongside their name. I have had my bloods taken every 6/8 weeks and hope yours are being regularly monitored. Many folks on this site comment that once your dose is at the right level you will feel better.