Opitmal TSH Suppression and T4 levels

[Bonni]

Hello

I have a great interest in what the optimal level of TSH suppression and T4 levels are appropriate for patients with Follicular Carcinoma/ Hurthle Cell.

From what I've gleaned from the surgeon and endocrinologist is that "TSH is a growth factor" that "promotes the growth of thyroid
cancer cells." Therefore the risk of thyroid cancer recurrence will rise as the TSH increases and should be kept less than < 0.1
Recently my TSH rose to 0.5 and T4 fell to bottom of the range although still within the parameters of the reference range.

My health status was low and I approached my GP. He told me that the results were good within range and that as I was now Euthyroid! There was no cause for concern and Levothyroxine dose did not need changed.

Would appreciate confirmation of what the guidelines are at present in management of Thyroid Carcinoma

Thank you.

[Dr Petros Perros]

Dear Bonni, the evidence suggests that if there is a history of thyroid cancer, the serum TSH is best kept below 0.1mU/L. Higher levels of serum TSH are associated with a higher risk of recurrence of the cancer over a long period of time. This risk however, needs to be reassessed after 1-2 years from completing the initial treatment (surgery, radioiodine ablation) in the light of the results of the tests that have been done to check response to treatment (ultrasound, iodine scan, thyroglobulin etc). In many patients, whose tests are negative, and the risk of further problems becomes so remote that the TSH target can be readjusted to a higher range within the normal limits. There is often some confusion about this between hospital doctors and GPs leading to frequent and sometimes inappropriate adjustment. We have addressed this in our centres by issuing a thyroxine card to patients that states why they are on suppressive thyroxine and what the intended TSH target is, but essentially this is down to good communication between hospital clinic, patient and GP.

[Bonni]

Hello Dr Perros
It's very kind of you to answer my query. The last two years has been a learning curve and although one wouldn't wish to have a diagnosis of thyroid cancer, the whole complexities of the condition are interesting. After RAI the advice given to me from the hospital clinic I quickly found that it varied greatly from the guidelines the GP / practice nurse followed especially with the suppression of TSH. The confusion and lack of communication was apparent. A thyroxine card for all patients would be a brilliant step forward and beneficial for all concerned.

Thank you

Bonni

[JudithT]

Hi Bonni,

I'm the British Thyroid Foundation's Editor and like you I'm a thyroid cancer survivor. We recently updated our booklet Thyroid Cancer - For Patients By Patients which can be ordered from the BTF website - http://www.btf-thyroid.org/index.php?op ... Itemid=242. It is written and reviewed by people like us who have themselves experienced thyroid cancer and it includes their experiences of their thyroid cancer journey as well as medical information based on the latest guidelines for treatment of thyroid cancer.

The thyroxine card referred to by Dr Perros is mentioned in the booklet. It was developed by the North of England Thyroid Cancer Trust together with BTF's affiliated organisation the Butterfly Thyroid Cancer Trust (BTCT) in response to patients requesting something like this to show their GP to explain why their TSH needs to be suppressed.It is available from the BTCT - http://www.butterfly.org.uk.

Hope this helps
Judith

[Bonni]

Hello Judith

Thanks for the links and info...
Also sorry for the delay in replying, I had some difficulty in logging on to the forum.

Bonnie