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Total Thyrectomy and Blood test / Argument erupted in my Finnish facebook Page

ThyroidHell profile image
12 Replies

Hi All

Am I right or wrong ... when someone had TT should they take the thyroxine before the bloodtest or not. Considering that TT patients don't have any hormon activity there anymore shouldn't they take the medication before the bloodtest to give some kind reading as a base for lowering/raisin the dozage? I actually had test 2 weeks ago without the medication ( I am TT ) and of course it had dropped from the previous one and therefore dr asked me to lower my dozage to 50mcg per day. Test in september was ok and was allowed to stay 75-100 mcg per day taking turns daily. So in my thinking I should have had the medicine before bloodtest to see how my levels are everyday with the thyroxin and keep that as a starting point. People who have thyroids have of course all sort of activity wether its hypo/hyper ( its still activity) and of course they need to drop the thyroxine before blood test to see their true reading to get their medication in the right tracks.

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12 Replies
helvella profile image
helvellaAdministratorThyroid UK

The problem is that when you take a tablet there is a "wave" of increased T4 - typically maximising about two hours after taking it. That fades away over the next few hours. I delay my tablet before a blood test to avoid the top of the wave being thought to be my real "average" T4 level.

I am, though, a tiny bit confused. What was being tested?

If it was TSH, then time of day can have quite an effect:

healthunlocked.com/thyroidu...

And changes in TSH can take several weeks to stabilise.

But if it was Free T4, then why drop your dose?

From what I have read around the place, 50mcg is a surprisingly low dose after a total thyroidectomy.

Further a drop from 75-100 down to 50 is a pretty large drop. Especially when you think of it as a percentage of your dose. I would not be happy if I were you.

Rod

ThyroidHell profile image
ThyroidHell in reply to helvella

Hi Rod

I had blood test 2nd jan and TSH was 0.21 ( didn't take tablet on that morning ) previous was 0.43

T4 was 14.8 previous was 17.5 , these previous ones was taken in september and I took my tablet before test.

Now considering I don't have thyroid glands anymore He dropped my medication to 50 mcg from 75. Its because the 'blood test says so' was the answer .

I had the test 7am before anything to eat and drink but my argument is why do I need to have the blood test without my tablet as I don't have any thyroid activity because they are gone. He agreed to me have 75 one day and 50 next ... I am hopping mad ..It can't be right to have 50mcg per day ! Don't I need to have some kind of start somewhere which comes with tablets to see if medication needs to go up or down and as Angel of the north said why measure TSH when there isn't thyroid to stimulate?

Marja

Angel_of_the_North profile image
Angel_of_the_North

And one thing that always confuses me about people after a TT. Why do they measure TSH when there's no thyroid to stimulate? Surely they should just be measuring T4 and T3 ..

ThyroidHell profile image
ThyroidHell in reply to Angel_of_the_North

exbloodyzactly ...beats me !!!!!

girl66 profile image
girl66 in reply to ThyroidHell

In my case I had TT for thyroid cancer and they measure the TSH to make sure any potentially cancerous thyroid cells are not stimulated into growing. That's why the TSH has to be below 0.0something. Hope this helps?

ThyroidHell profile image
ThyroidHell in reply to girl66

Good to know :o) More info the better , I just had lumps ( well 7 on left and one big on the right ) 30 years apart though . Anyways lets plod on like a little donkeys on a dusty road!

ThyroidHell profile image
ThyroidHell in reply to girl66

It helps , thanks , because next time ( april) I have these exact questions to ask. Thank you very much

Marja xxx

roslin profile image
roslin in reply to ThyroidHell

How do you feel. 75/50 is an very low dose for somebody without a thyroid. when i took levo I was on 300. as girl66 says you should be on a suppressive dose after cancer. TSH of 0.21 is is not a suppressed and for me would have been far too high, but what you need to have measured is you T3. I doubt if taking or not taking your levo before testing would make any difference to your TSH and it didnt make a significant difference to your T4 either. Unfortunately treatment in Finland or Sweden (where I am from) is no better than here. I think Britain is a little less regulated than Scandinavia which is saying something. I have heard of a good finnish Dr which did get a lot of patients from Sweden(cant remember her name).

Roslin

ThyroidHell profile image
ThyroidHell in reply to roslin

Hi Roslin , I don't actually feel bad , I work everyday, little tired around 3pm. I didn't actually have a cancer, just tyroid nodules which weren't cancerous. But what makes me wonder if they left something on my right thyroid as I had the op 33 years ago. Maybe the surgeon just removed half of it. I am from Finland but have lived in Uk for 34 years and I know the treatment there is even worse furthermore they spend a fortune on their medication and private doctors plus they have to pay for their blood tests too. Thanks for the reply

Marja xx

mickstability profile image
mickstability in reply to Angel_of_the_North

The pituitary gland makes TSH, so it's an indication of whether it's trying to stimulate the thyroid gland to produce more hormone - hence doctors use it as an indicator for TT patients who should have a fully suppressed TSH to hopefully(!) stop any regrowth of thyroid tissue. Thyroglobulin is the key indicator, however, and any thyroid cancer patient should have thyroglobulin tested at least annually - it should be virtually nil, and any rise in thyroglobulin count for TT patients needs immediate investigation. As for free T4 and free T3, tests only show what's in your blood, which as we know is only half the story - it's whether it's being used properly that generates 90% of the posts on this site!

ThyroidHell profile image
ThyroidHell in reply to mickstability

I am printing this reply so I can show it to my doctor next time :o) And yes all starting to make sense now

Thanks very much :o)

ThyroidHell profile image
ThyroidHell

Thanks for the answer , I am deffo not start taking 50mcg it stays 75 and even then I don't think its right.

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