Trying to understand result since I cannot get ... - Thyroid UK

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Trying to understand result since I cannot get help from all the doctors 😕

Roar51 profile image
Roar51
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Hi first week of September got a right hemithyroidectomy lab result was carcinome papillary (the large one was 0.8mm x 0.5mm but repport said they see lot of sub milimeter cell. And 10% was braf v600e ). The surgery went well no pain able to eat what i wanted after 24h without problems (the surgeon said that it was ok) no medication added after surgery

They made a scan in 2018 for an other major surgery and report said thyroid was normal

Tsh 1.07 april 2023

July 2023 when looking for benign mass on left thyroide the found on right some small trace of cancer confirmed by small needles punction.

2 week after surgery (september 2023)

Tsh 0.87 mu/l

Thyroglobuline 0.2 ug/l

Thyroglobuline ac 765

Tsh 1.38 mid october 2023

Tsh 0.86 first week of november 2023

heartache when i see food since october i'm on liquid boost foods an sometimes some cheese and a bit of meat.

Lot of blood tests(45 different thing checked)all is 'normal'

When i ask why thyroglobuline ac is so high they said i's normal since i still have a working part of thyroid.

Asked why tpo and anti tpo was not checked since thyroglobuline ac is high got different answer (familly doctor could not answer) surgeon asked the endocrinologist and said its a normal value At 765

2 days ago they made tdm scan they said all was ok, that it was something else to see familly doctor so he should look at it. But how can the help me if he cannot understand the anti-thyroglobuline ac high value.

Next doctor visit is in 6 week .... weight is like a roller coaster +/- 20 pounds swing in few week up and down.

I have lot of other blood results of the last 2 months if needed

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Roar51
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humanbean profile image
humanbean

Having had half of your thyroid removed the things you need to know are how much thyroid hormone the remaining half of your thyroid is producing.

Do you have pre-surgery results for Free T4 and Free T3? And what about post-surgery results for Free T4 and Free T3?

How did you feel before surgery? Did you feel well? Were you aware of any symptoms of hypothyroidism or hyperthyroidism?

For symptom lists see this link :

healthunlocked.com/thyroidu...

TiggerMe profile image
TiggerMeAmbassador

I have a nasty feeling they don't offer free T3 and free T4 testing in Canada unless you push for it, these are the results we really need to see?

verywellhealth.com/interpre...

  humanbean

Rosebud1955 profile image
Rosebud1955• in reply toTiggerMe

I live in Canada and my Endo checks my Ft3 & FT4 every six month. He also checks them six weeks after the makes any adjust to my meds. Initially he didn’t do them. He only started doing them after I told him I wanted them done. Our labs have no say in what’s tested, so it’s strictly up to the doctor. They can be very lazy so we have to push them. A part of it is ignorance.

Litatamon profile image
Litatamon• in reply toRosebud1955

Same here as Rosebud. All is tested. Total thyroidectomy. Had to push for Ft3, but has been consistent since I had the conversation. Our healthcare decisions/programs are provincial; I am in Ontario.

My first endocrinologist was staunchly anti-testing t3 in conversation, but I even got her to include it.

Roar51 profile image
Roar51• in reply toLitatamon

The endocrinologist said that over 750 of anti-thyroglobuline antibody and a thyroglobuline at zero (exact value was 0.1) is normal so my problem is somewhere else and my family doctor follow that and started to check other possible problem. I asked why there is no full blood check for the thyroid. The answer was to see with the endocrinologist (next appointment in 2 or 3 month) the surgeon said same thing.

Since I'm near US border I'm looking at private lab in US that can made a full blood tests for thyroid

Roar51 profile image
Roar51

Before surgery I was ok some asthma but controlled with medication and a bit over weight (30 pound)

I cannot find any t3 and t4 results the only test made before was the tsh at 1.07 (before they found the cancer)

TiggerMe profile image
TiggerMeAmbassador• in reply toRoar51

Sorry Roar we don't get a notification if you don't press the REPLY button, I'll tag humanbean

The funny thing is we often use links to a Canadian website as it is so good, have you taken a look? thyroidpatients.ca/

Brightness14 profile image
Brightness14

You sound French is that correct. Here in France they only ever remove the whole thyroid.

What were your symptoms before surgery. You will require blood tests to confirm treatment have you got any results for the people on here to help you.

Roar51 profile image
Roar51• in reply toBrightness14

You are right french speaking i'm in Québec . They found by 'accident' and it was so small the decided to only remove half. Even one endocrinologist said to wait and see the evolution over the time...

Brightness14 profile image
Brightness14

Quebec I expect your French is better than mine. I don't know why here they only remove the whole thyroid. They do appear to be very fast to treat anything so perhaps removing the whole thyroid removes the need for any other operations.

They would remove all sorts here if you let them. I am only joking. My cancer was small when my thyroid was removed too. I hope that you get better soon.

Rosebud1955 profile image
Rosebud1955• in reply toBrightness14

I’m in Ontario Canada. My surgeon insisted that the total thyroidectomy should always be performed in the case of cancer. He said one can never be sure that all the cancer is removed as there is a strong possibility that the other half of the thyroid will most likely have some microscopic cancer cells. From his experience, a vast majority of patients who chose to remove only half usually return to remove the other half. Plus, most patients will need thyroid hormone after a few years and will eventually need full replacement thyroid hormone over time. Why would someone want to subject themselves to a second surgery and risk the possibility of it spreading to the nodes etc…. Just saying!

Brightness14 profile image
Brightness14• in reply toRosebud1955

Exactly that's why here in France they remove the whole thyroid.

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