TSH levels

Hi Tonic333

My last consultant’s letter said we are aiming for TSH of <0.1

I had a total thyroidectomy and neck dissection etc in Feb 2022   followed by RAI in May 2022.  I am classed as high risk as I have the tall cell variant. 

My TSH was 0.04 on Feb 27 2023 having had  my second lot of RAI on Jan 30.  I take 100mcg of levothyroxine daily. 

I’m seeing the consultant in mid July and am waiting for an ultrasound appointment and presumably thyrogen injections and a blood test to inform that meeting. 
My contact at the hospital is a specialist nurse practitioner in the thyroid oncology clinic - I contact her via email and she works 3 days per week.

I suppose hospitals work in different ways but my expectation would be that you should be monitored by the hospital, not your GP.  One thing to be aware of  is not allowing your GP to alter your levothyroxine dose without consultation with the hospital. 
I hope this is helpful. 

Good luck! 

Thank you for your reply, it’s very helpful to hear your experience. 

In my experience it was my Oncologist who informed me where they would like my TSH to be.  She told me that they would require me to be suppressed for the first year.  As it turned out the level of Levothyroxine I was on already had me at the correct level (mine is <0.01 mU/L).  On my records it says the Serum TSH Level range is [0.27 - 4.5] so I am outside range, but that is because I need to be suppressed for the first year.  My op was July 22 and RAI 22.  It might be that your Endocrinologist will discuss this with you at your appointment in July, I haven't actually seen an Endocrinologist and it hasn't been mentioned to me.  I suppose it depends on the individual's circumstances and how the hospital works in your particular area @Tonic333.  My Oncologist has also said the I should have blood tests at least 2 weeks before each appointment.  

Thanks for your reply. It seems like people have had a similar experience, I’m not sure what I should be doing. I’ve contacted my nurse specialist and hopefully she will get back to me soon. Thanks again. 

None of us do until we are told what to do or what to expect, it definitely is a learning game with Thyroid Cancer.  Hope you get some sense from your Nurse Specialist, I am sure they will reassure you @Tonic333.