Update on oncology appointment yesterday - Thyroid UK

Thyroid UK

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Update on oncology appointment yesterday

LippyChick1 profile image
8 Replies

I posted last week asking some questions around my latest blood results for an appointment with the thyroid nurse for my two yearly oncology check up.

Reminder of results:

TSH: 0.82 Ref range 0.3-2

T4: 22.9 Ref range 10-22 (107% through ref range)

T3: 4.1 Ref range 3.1 - 6.8 (27% through ref range)

Antibodies: 21.6 Found out yesterday they want this level below 20, so nearly there.

She asked me a few questions about medication and whether I had noticed any new lumps in my neck, which I haven't. She then asked me how I was feeling. I said I never really feel fully charged and regardless of what I do, my weight seems to always creep up (currently make my own smoothies for breakfast, salad for lunch and a small dinner). She asked if this has got worse, I explained that as my thyroxine dose has decreased, it's got worse. I was on 225mcg daily (I had thyroid cancer and this was the suppression dose) and now on 150mcg daily.

She suggested we increase the thyroxine slightly taking 175mcg Mon-Thurs and 150mcg Fri - Sun. I wasn't expecting this at all. Will get retested in 8 weeks.

She also asked about my concerns regarding T3. I talked about the T4 being high and yet the T3 seems to be quite low and that my T3 has been a lot higher in the past. I talked about being aware of conversion problems and how this can make some people not feel too good. I suggested a trial of T3. She told me she can't prescribe any T3 and the endocrinologists in the joint cancer clinic have both retired (one being on the Thyroid UK list as having prescribed T3, gutted). However, she said she's more than happy to refer me to an endo at a different hospital and will have a chat with them about the situation and hopefully they'll be able to help. She said they may be able to suggest something else, we haven't thought of too. So up shot. I felt really encouraged, as she didn't say "no we can't prescribe that and you'll be hard pressed to find anyone who can", but is referring me on to have a conversation about the potential. So I guess I'll see what comes of that conversation. Am ever hopeful.

We also talked about the fact that after thyroidectomy some people just aren't the same any more and sometimes it's about managing the energy levels. She said she prefers to rule out what it isn't to find what it is. She said blood levels aren't the whole picture and that it's really important to listen to how the patient feels too and try to find the right balance of medication, increased risks of high T4 (osteoporosis) and how I'm feeling.

As far as the cancer indicators are concerned they continue to be happy that it's been taken care of and is gone, but continue to monitor until the antibodies level goes below 20.

Thank you so much to those who helped last week.

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LippyChick1 profile image
LippyChick1
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8 Replies
fuchsia-pink profile image
fuchsia-pink

That's a shame you don't have easy access to T3-friendly endo - but the nurse sounds a treasure. Crossing fingers for you x

LippyChick1 profile image
LippyChick1 in reply tofuchsia-pink

I know, I was really excited to see that the one listed worked in the hospital I attend. She mentioned him before I asked to be referred.

She is lovely, hoping she can talk me up and the person I do talk to/see is willing to trial it.

Thank you.

Batty1 profile image
Batty1

In my opinion people without a thyroid should be on combo of T3/T4 since we create no thyroid hormones naturally.

LippyChick1 profile image
LippyChick1 in reply toBatty1

Maybe that's why they haven't said a straight out No. I agree with you. We have nothing to pull on when stress hits; no natural fluctuations.

Batty1 profile image
Batty1 in reply toLippyChick1

I see it on this site quite a bit people without a thyroid on T4 meds only ... it’s crazy and cruel.

LippyChick1 profile image
LippyChick1 in reply toBatty1

I know, but as we're certainly learning, it's wealth before health!!! They put me on T3 initially for two months inbetween having it removed and having the Radioactive Iodine treatment. I needed to come off thyroxine a month before the treatment, so they put me on T3 instead as I just needed to stop that a couple of days beforehand. Then once the treatment was over they started me on 225mcg daily of thyroxine. I have asked over the years about adding in T3 and they keep saying no. So this time at least they haven't said that... yet.

Batty1 profile image
Batty1 in reply toLippyChick1

You probably need to do what so many others do here and self medicate and do your own testing ... it’s atrocious.

LippyChick1 profile image
LippyChick1 in reply toBatty1

Yeah, I think I may have to end up doing that. I guess I'll see what the new endo says. Do you find you feel better on the T3?

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