Papillary thyroid cancer follow up scare

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Hello, I’m 27 and I was diagnosed with papillary thyroid cancer. I underwent total thyroidectomy and RAI treatment last year. 6 months post my surgery my thyroglobulin levels are <0.20 ng/dL but ultrasound showed enlarged level 2 lymph nodes but all are discrete and has fatty hilum , I’m currently taking 175mcg Thyroid medicine and my latest TSH was <0.01 mu/L, but T4 is raised to 22.9 pmol/ L. Can this be a sign of anything wrong? Should I be worried??  Please can you let me know. 

  • Hello Learningtobepositive,

    Thanks for getting in touch with our online community. My name is Michael and I am one of the Cancer Information Nurse Specialists on the Macmillan Support Line.

    I hope you are finding our Thyroid cancer forum helpful.

    It sounds like you have been through a lot over the last few months and are now having follow up appointments. The number of appointments you have depends upon the type and stage of your thyroid cancer. It will also depend upon your response to your treatment.

    Unfortunately, we do not have access to medical records, so it is difficult to comment on your recent test results and specific situation.

    We would recommend speaking with your clinical nurse specialist (CNS) at the hospital, or contacting your consultant to discuss your results, in the context of all of your other tests and investigations, and what they mean.

    Readjusting to life after a cancer diagnosis can be challenging, both physically and emotionally, and as well as getting support from your clinical team, many people find getting additional support can help them adjust to a new normal.

    I don’t know if you have heard about  trekstock and shine cancer support, who provide support to younger people who are, or have been affected by cancer.

    At Macmillan we also offer an online HOPE programme and the charity Maggie's offer a post treatment course called Where Now.

    I hope this information is useful. Please don’t hesitate to call to speak through your concerns. If you are unable to call, you might consider speaking to us via webchat.

    The Macmillan Support Line offers practical, clinical, financial, and emotional support. You can call us free from landlines and from most mobile phone networks on 0808 808 00 00, 7 days a week, 8am – 8pm.


    Best wishes, Michael

    Cancer Information Nurse Specialist 

    REF: MH/RH