What is the recommended follow-up for thyroid cancer?

[MrsBrass]

Hello

I had a TT 18 months ago and was diagnosed with Stage II Follicular Cancer. I had some spread to the front group of lymph nodes and also 2 parathyroid glands were removed. I received RAI in November and my thyroglobulin 3 months later was zero.

Whilst I am very happy that the cancer is sleeping and under control I have found that I have not felt good/normal since I started taking T4. My T4 consistently rises out of range so my dose is lowered but a few months later the T4 rises out of range again. My T3 sits in the bottom half of the range regardless of where my T4 is.

I am wondering if I have a conversion problem as I still have hypo symptoms even with a supressed TSH and T4 at the top of the range, is this a possibility? I'd like to trial a combination of T4/T3 but I wonder if this is an option if TSH needs to stay suppressed? Are there are reasons why a combination of T3/T4 isn't a good idea following thyroid cancer?

[MrsBrass]

Hello

I had a TT 18 months ago and was diagnosed with Stage II Follicular Cancer. I had some spread to the front group of lymph nodes and also 2 parathyroid glands were removed. I received RAI in November and my thyroglobulin 3 months later was zero.

Whilst I am very happy that the cancer is sleeping and under control I have found that I have not felt good/normal since I started taking T4. My T4 consistently rises out of range so my dose is lowered but a few months later the T4 rises out of range again. My T3 sits in the bottom half of the range regardless of where my T4 is.

I am wondering if I have a conversion problem as I still have hypo symptoms even with a supressed TSH and T4 at the top of the range, is this a possibility? I'd like to trial a combination of T4/T3 but I wonder if this is an option if TSH needs to stay suppressed? Are there are reasons why a combination of T3/T4 isn't a good idea following thyroid cancer?

[MamaP]

Dear experts,

I have been living in Holland for a number of years and about 20 years ago I was diagnosed and treated with papillary thyroid cancer (total thyroidectomy, lymph node dissection, radioactive iodine). I am now 'no evidence of disease' but I was told that thyroid cancer does sometimes come back after many years.

I am planning to move back to the UK later this year. Should I ask to be referred to a specialist and what kind? How often should I be checked up and what are the usual tests?

I am on 200 micrograms of Thyrax (levothyroxine) and my thyroglogulin (Tg) is unmeasurable. I see an endocrinologist every year. I have blood tests every year and I have been having an ultrasound scan every two to three years.

My TSH is suppressed and I feel good but I have heard that this can cause osteoporosis. I have just been through menopause. Should I be concerned?

Thank you for any advice you can give me
MamaP

[Nurse Dianne Wright]

Hi MamaP

it is good news that your treated thyroid cancer has been successfully under control for the last 20 years or so.
in the UK after so long you should be seen by the endocrinologist once every 2 years with the interim annual appointment with the oncologists so you are effectively seen by someone on an annual basis.
Thyroglobulins along with TSH & FT4 should be checked annually.
TSH should be undetectable but the FT4 should not be too high to cause you symptoms of an overactive thyroid.
You are quite correct in thinking about your bones as an overactive thyroid can be linked to osteoporosis. I think a bone density scan should be carried out as a baseline investigation and a further scan 2-3 years down the line for comparison. if you have osteoporosis or osteopaenia you can then take treatment appropriate to the problem.

Regards

Dianne Wright
Specialist Nurse in Endocrinology

[karen p]

i too 16yrs ago had successful surgery and ablation treatment and for 15yrs took my meds every night then 18mths ago on one of my
appointments the consultant asked about my tablet regime then couldn't believe i'd slipped through the net for so long, he wanted
me to change to early morn which i did, then for the first 14months over the time i had increasing anxiety issues till it became
unbearable, my skin was dry hair dry and thin then my next appointment i was reduced by 25mg then 3 months later again another 25mg
i had lost over 2 stone in weight by this time my tsh is still suppressed, and recently 4 months after the second reduction i am slowly
returning to a more human feeling my question is one my weight seems to be stablised even at the lower thyroxine dose why is this?
and will i always be kept suppressed? should my consultants be also checking t3 as standard as no matter how much t4 itake i need to be converting it to t3 in the day when needed as this was the original argument the consultant gave me18months ago he said i would
be converting t4 to t3 in the middle of the night when it was not needed and that was one of the reasons i had difficulty in sleeping
Another question my hair loss has quickened up since sept the doctor stated this should settle after the new dose has settled is
this right?
Thankyou for any answers

[MrsBrass]

Hello - I wonder if anyone can offer me some advice on my question re T4/T3 combination if I need TSH supressed. Is this not an option? Does it make TSH less stable? I'm unsure if this is an option when you have thyroid cancer.

thank you