I had a U3 thyroid nodule, for a number of years, long story short FNB 2021 unsuccessful, sent back for another attempt radiographer did not biopsy, said wasn’t required “definitely not cancer”.
Monitored by ultrasound until Feb 2024, radiographer asked why hasn’t this been biopsied, wrote to the endo consultant who sent an appointment for August 2024, core biopsy requested, this was done October 24 results Nov inconclusive ? Follicular neoplasm referred to ENT, Dec offered hemithyriodectomy Feb 25 - March 25 diagnosis as above, thankfully no lymph node involvement PT1B, unfortunately margins not clear. Booked for completion surgey in the next few weeks.
Pre hemi no symptoms, since op feeling very cold all the time my hair is thinning and I’m very tired
T4 9
TSH - 2.2
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Spinlover
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Sorry to hear about your cancer and hemi. Did they tell you that you wouldn't need thyroid hormone replacement because your remaining half thyroid would increase output to make up the difference? I'm afraid that is rarely true, but they always say it.
Can you put the range for that FT4, please? It looks very low but results without ranges are meaningless because ranges vary from lab to lab.
Your TSH, on the other hand, isn't very high. What time of day was the blood draw for that test? Is that the only test you've had since your op? No FT3 tested? How about nutrients: vit D, vit B12, folate and ferritin? Have they been tested? If they are low - and they very well could be - they will be adding to your symptoms. Did they test your thyroid hormone levels before the op?
Sorry about all the questions, but all the details are important for your recovery.
thank you for your kind works and getting back to me.
My thyroid function was been normal prior to surgery, that said it’s been dropping over the past 18 months.
The last test was done around 11.30 am whilst at the hospital, the nuclear medicine consultant requested it, she was more worried about my calcium level she called with the results and just said
T4 - TSH 2.2 and calcium normal, she said my TSH should not go above 3 , if it does they will start thyroxine. This is the 2nd blood test following surgery , 1st was on 31/3/25 T4 11 and TSH 2 . these are the only results I have access to, I am seeing the surgeon tomorrow, I’ll ask about the other bloods, hopefully they have them 🤷🏻♀️.
I will be put on thyroxine after surgery ? How much, just worried my T4 will drop very low before surgery and my symptoms will get worse, the fatigue and feeling cold is a nightmare.
I’ll post again with more details, when I get them.
But I'm a little confused, have you had the surgery yet or not?
One thing it's very important for you to know is that TSH levels vary throughout the day. It is highest before 9 am. Yours was 2.2 at 11.30 am, when it was reaching its lowest point. Has you had the blood draw before 9 am it might well have been over 3. So, next time you have a blood test, make sure it's before 9 and fasting. Caffeine and some foods can cause TSH to give a false low.
Your T4 already looks very low, but you didn't give me the range, so I can't really know. Whether you're put on T4 after the op and how much depends on a lot of things - not least the experience, knowledge and attitude of your doctors.
As to your levels before, you should also know that there's no such thing as 'normal' when it comes to thyroid hormone levels. When a doctor says 'normal', all he means is that the results is somewhere within the so-called 'normal' range. But that's not the same thing as optimal for you as an individual. You can have results in-range but still be hypo.
So, your FT4 is very low. A 'normal' (euthyroid) FT4 would be about 50% through the range. And that's what they should be looking at, not the TSH! TSH isn't even a thyroid hormone, it's a pituitary hormone and only a rough guide to thyroid status at best. And yours is not the best because with such a low FT4, you would expect it to be higher - even at that time of day. So, you've possibly got a sluggish pituitary, as well. Do point out to your doctors how low your FT4 is. They probably hadn't even noticed!
The advised TSH post thyroid cancer used to be total suppression to prevent recurrence. New guidelines state 0.1. Anything above that is considered a risk.
Thyroglobulin antibodies are an indicator of possible recurrence. These should be tested annually. Mine still are - 13 years after surgery. Late recurrence is not unusual if these guidelines aren’t followed. We are never considered to be ‘in remission’ as other cancer survivors are.
greygoose has given you some good advice and information.
Morning, I could have written this myself but 5 years ago. Told it was a goitre but it was follicular. Hemi then full. Managing a poor/no thyroid is a journey. Please PM me if you need a friendly ear but I’m not an expert x
Hi Spinover - I'm a thyroid cancer survivor in the US. You might want to check out ThyCa.org - it's a cancer focused organization which sponsors many email and zoom groups. You're welcome to join any of the Zoom groups (if you're willing to stay up for our time zones). For anything, of course, to do with NHS and meds in the UK long term you'll find the best information here with this amazing group.
It's possible that with unclear margins they may want to give you RAI for "clean up" and it's possible they might follow the draconian method of withholding any thyroid meds instead of Thyrogen injections to prepare. Do discuss this with the surgeon. If she intends to start you right away on levothyroxine she might be open to starting it now.
Also, if possible, request a full neck mapping before surgery. This helps determine if there are any suspicious lymph nodes, can eliminate surprises (for you and the surgeon) and help avoid an additional surgery. It also provides a baseline for future monitoring. Ask about testing thyroglobulin (Tg) before surgery - this is what is used as a thyroid cancer marker for long term monitoring. Some people are "low Tg producers" which can complicate future monitoring so its helpful to know beforehand.
You already have some idea what to expect with surgery though this might be a bit more extensive due to scarring from the hemi. I would ask the surgeon how they intend to preserve your recurrent laryngeal nerve (that affects your vocal cords) and parathyroids (which control calcium levels).
Thank you very much, for your very helpful reply, I saw the surgeon today unfortunately he was focused on the consent form, he is happy with my T4, I decided not to get too annoyed and will email my endocrinologists PA, ask all the very valid questioned, based on all the helpful info I have gained today,
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