RAI resistant thyroid cancer and TSH suppression

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I am 57 and have had thyroid cancer resistant to RAI for nearly 10 years. After a thyroidectomy and neck dissection my remaining cancer is managed through tsh suppression as the the RAI left residual disease in my neck.
To suppress my tsh my T4 is high and sometimes it is really high. ….up to 36 when the upper level should be 22.
I have awful symptoms of agitation, anger, intolerance and impatience, a pounding chest and tearfulness. I feel like I’m going to collapse. I have spoken to my GP who is reluctant to reduce my thyroxine as my tsh would not be adequately suppressed. I cannot take beta blockers as I have a low resting heart rate of between 50-55

i have seen an endocrinologist who has not suggested any change in my medication. I also have long Covid which I feel is a new label to attach all my symptoms to by the medical profession. I have had v high T4 before and the symptoms were the same so I really ly do not think that this is related to long Covid.

I don’t know what to do other than reduce my thyroxine myself as I am struggling to function.

Any advice greatly received

Tina

latchbrook over 2 years ago

Hi Tina18 and a very warm welcome to the online community

It sounds like you're going through an awful lot at the moment. I noticed that you'd also posted about this in the ask a nurse section of the online community and wondered if you'd seen that you'd had a reply. If not clicking here will take you to it.

I hope the suggestions that the nurse has made will help you.

"Never regret a day in your life, good days give you happiness, bad days give you experience"

barbaral over 2 years ago

My lovely oncologist - who sadly retired on me during the pandemic - used to say that the most important thing to treat is the one that's messing up your life today. You can sort out the consequences tomorrow.

So on his theory, I'm sure he'd want to get your FT4 down even at the cost of the TSH going up. If life is unbearable due to side effects, it needs attention.

I've not been following the scientific developments closely the past few years, but wasn't there some advance in finding drugs that could reactivate the iodine 'thirst' of thyroid cancer cells? I can't remember names or how they worked but maybe somebody else can update us. I've raised a question in another group where I'm active to see if anybody can tell us more.

Best wishes

Barbara

“Scars are tattoos with better stories.” – Anonymous

Tina18 over 2 years ago in reply to latchbrook

Thank you x

Tina18 over 2 years ago in reply to barbaral

Thank you Barbara for your reply. I really appreciate your response.

Your oncologist sounds like a star to me. What a shame they retired……why do we always lose the best doctors? It is so right about treating todays symptoms because to feel awful is not living the lives we deserve especially with all that is ongoing with our cancer.

I have lowered my dose slightly to see if I can manage better and I will discuss this with my oncologist when I see her in March. I have also noticed that my T4 symptoms are worse if I am prescribed a certain brand of thyroxine so I have asked my GP if he can ask the pharmacists to prescribe the brands that suit me better.

I heard a while back about new treatments to increase RAI uptake and I will chat to my oncologist about this too just to see what progress is being made in this area.

thank you again for replying xx

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RAI resistant thyroid cancer and TSH suppression