Blood tests after TT: How often do people have... - Thyroid UK

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Blood tests after TT

rosieposie83 profile image

How often do people have blood tests after a TT? I had mine removed in Feb and had a blood test, then a blood test in April, June, August and October. I don't see my endo now until October 2021 and he hasn't told me to have any more blood tests before then. Just worried as a year without a blood test seems a long time. Is this normal?

18 Replies
SlowDragon profile image

What were your results in October

How do you feel

How much levothyroxine are you currently taking

Do you always get same brand of levothyroxine

What vitamin supplements are you currently taking

For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12 at least annually

Low vitamin levels are extremely common, especially on just levothyroxine

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

Medichecks Thyroid plus antibodies and vitamins

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

Results in October all good. I feel good at the moment just worried that once a year doesn't seem very often. When I was hyper I had blood tests every 3 months or so.

SlowDragon profile image
SlowDragonAdministrator in reply to rosieposie83

You could test yourself at 6 months

But if you feel fine ....

Just worried about my TSH and tg levels. Can they change a lot in a year?

Hay2016 profile image
Hay2016 in reply to rosieposie83

Hiya. I had initial bloods after TT then after 6months and then 6-8 monthly with endo appt. now discharged to yearly appts after 4yrs. Gp usually sticks nose in once a year as they prescribe so have to test. Then you’ve got the ‘no you’re not reducing my meds. TSH low cos of cancer’ arguement to have. If you’re feeling good stay clear. Did you have RAI too?

rosieposie83 profile image
rosieposie83 in reply to Hay2016

yes had RAI in June, just more worried about tg levels

SlowDragon profile image
SlowDragonAdministrator in reply to rosieposie83

Average hypothyroid patient only tested annually, unless not feeling well

sorry should have said I'm a thyroid cancer patient too

SlowDragon profile image
SlowDragonAdministrator in reply to rosieposie83

Hopefully other post cancer patients may comment

Once stable on levothyroxine its usual to have once yearly blood tests unless there are concerns about cancer recurrence and that depends on a variety of individual factors. If you are concerned then ask for a referral either back to your consultant for a review or to a thyroid cancer specialist for a review and ask what your ongoing monitoring should entail. Thyroid cancer patients seem to be released into the GPs care, often without any clarity on their ongoing treatment plan and GPS haven't got experience of thyroid cancer. Most GPs don't seem to have a clue how to help us if we feel unwell after thyroidectomy.

How are you feeling?

I feel ok, my cancer was small but had broken through the thyroid wall and into the blood. I haven't had the all clear as my lymph nodes have changed texture so having a scan in March to check on them.

You're still under the hospital then. So you can ask what your forward treatment plan is and ask for it in writing and copied to GP.

It’s just difficult because my endo is in a different hospital to where I have the scan for my lymph nodes. My last appointment with my endo he told me that no need to see me for another year as cancer was so small, when I told him I was having an ultrasound on my lymph nodes he couldn’t understand why. I just wish they would work together better or that I was under one hospital.

Your case should be monitored by the local area multidisciplinary (MDT) cancer team. The Endo should be part of that team. Ask your GP which MDT you are under and ask them to explain how it works and explain why the Endo isn't aware of your scan. Who has ordered the scan? Is it your surgeon or consultant or the GP? You need to understand how it works in order to coordinate your care.

If all else fails then find a centre that actually coordinates care even if a bit of a distance and ask for your care to be transferred there. Make sure it's a specialist thyroid cancer centre that does administer radioactive iodine, not a small regional hospital.

I'm afraid our care is often fragmented when in a regional hospital.

Just seen this additional comment. I am under 3 consultants and none of them appear to talk to each other and very often not the GP or me either. It will all be separate files. It should all come together at the GP but it doesn't either. You just have to manage it yourself. All that said those managing the cancer aspect, the surgeon team, were very good with me. Lots of tests including scans are routine and important to make sure everything is covered. Good luck.

Batty1 profile image
Batty1 in reply to rosieposie83

Can you please post your last lab results including the ranges? Did you have thyroglobulin tested and do you have that result?

Even at a low risk pap cancer diagnosis your TSH is supposed to be low “less than one” for at least 5 years without recurrence per all 7 Endos I have seen in the past 4 years since for my low risk papillary cancer diagnosis in 2016 and at a minimum you should have at least a yearly Ultrasound on your thyroid and Lymph nodes along with the Thyroglobulin test and obviously along with the thyroid labs.

I was diagnosed with recurrence in lymph node almost a year ago (pretty amazing considering Im low risk) no such thing as low risk recurrence can happen!

There might be some variance depending on the reason for the TT but I see the consultant (surgeon) once a year and have bloods done every 6 months at GP asking them to send a copy to him. It was 6 monthly visits to start. Plus if there is a change in levothyroxine dose, test after 6/8 weeks. In 10 years it hasn't always been a smooth process with me managing it mainly the result of GP non-cooperation. Unfortunately, my consultant is retiring so anything might happen now.

I have mine tested yearly TT 19 years ago!

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