I recently had a hemithyroidectomy, biopsy found papiliiary cancer and I am having completion surgery in a few weeks. I'm trying to get my head around the various medications (T4, T3 and NDTs) and Thyroid Hormone levels.
I am currently on no medication and at no point so far have I taken Thyroid medication. I am however currently supplementing with Iron, Vit C, B12 and Vit D, and mult vits, some magnesium and some selenium.
About 8 months ago my levels were :
TSH <0.05 (very suppressed)
serum FT4 15 pmol/L (9.00 - 25.00 pmol/L)
serum FT3 4.5 pmol/L (3.50 -6.50 pmol/L)
About 4 months ago my levels were
TSH <0.05 (very suppressed)
serum FT4 17.8 pmol/L (9.00 - 25.00 pmol/L)
serum FT3 4.9 pmol/L (3.50 -6.50 pmol/L)
My Hemi was nearly 1 month ago and I feel totally 'normal' so far. I have not had any Thyroid hormone tests.
Now would I be right in assuming that something around the above levels is what i should be trying to aim for post completion thyroidectomy in a few weeks time?
Does anything about these levels suggest I would do better on combined T4 and T3 (Thyroxine and Cytomel therapy)
What about NDT's - what sort of affect on levels does that typically have?
Any clarity on this matter appreciated.
Thanks
Melissa
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wysewoman
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Can anyone in the know confirm whether my pre-op levels are what i want to aim for post op?
thanks
HI
Sorry you had cancer. In your shoes I would not be having a TT unless my very life depended on it (I had a TT for Thyca and Graves and a long list of other issues). Life without a thyroid is HARD and in my view natural hormones are better and you'll struggle to get any doctor to listen to you on that front, let alone prescribe so that puts you in the same club as a lot of us, buying drugs online and doing it ourselves. Paying for tests ourselves and arguing with doctors about our TSH levels. In your shoes, I'd want a second opinion - can't you keep your half and have regular monitoring????? With cancer they will TSH suppress you, put you on enough hormones so that your TSH is undetectable. They won't be very interested in your other levels and you'll be lucky if anyone will listen to 'where you are in the range' ... you'll be normal and therefore 'cured'. Unless you are extraordinarily lucky and land a doctor that a) really understands and b) gives a sh*t.
Also, for some reason taking out the thyroid causes all sorts of things to go out of kilter and they dont' know why so my sex hormones went berserk, my adrenals struggled, I kept crashing into aneamia and despite having blood results far higher than yours are now, I've gained four stone and can't lose it - which is a common complaint for TT patients.
It simply is NOT a case of take a pill and feel fine, I will never feel totally fine ever again I don't think and I wish someone had warned me what I was in for. Not that I had another choice by that point but if you do have a choice then for the love of God don't do it.
You want to make sure that any digestive or gut issues are sorted out so that you can absorb your meds once you've had a TT (natural meds are a little better as you can dissolve them under the tongue) and your vits, iron, B12, vit D and cortisol all need to be optimal. Experience shows most of us feel well with a T4 in the top quartile of the range, and a T3 right at the top of the range.
Also, with Papillary Thyca I did a lot of research (my best friend is a PHD cancer researcher) and decided not to do RAI. In the USA with my type and staging of cancer, RAI is not offered. I'm really, really glad I took my time to decide that I was being rushed into irradiating every cell in my body. Saw my endo on Monday and she says on the cancer front, I'm now consider 'cured' and that's without the RAI.
Also my German endo surgeon has left the NHS - he's fed up - and he told me that half the problem is ENT surgeons blundering about into thyroid surgery. Again in your shoes I would NOT let an ENT surgeon anywhere near me. You need an endo surgeon and you need to be absolutely sure that TT is your only option.
Sorry if that's a bit blunt but with hindsight I'm grateful to the folks that jolted me a little - there are good endos out there who do care but they are rarer than hen's teeth. And whilst I know I had no choice but to have a TT by the time I was diagnosed, I mourn the loss of my thyroid every day .... surgeons seem to sell it like it's a tonsilectomy but it's more akin to brain surgery .... it affects every system in your body. It's a very big deal.
Good luck
Rebecca
x
PS
Your levels are middling. Your TSH is not 'very suppressed' - mine's 0.001 - and your T4 is OK ish, a bit low in the range, and a T3 of 4.5 would not suit me, it'd be too low, most of us feel better right at the top of the range. But this is what I mean, if you have some of your own thyroid making the hormones it's not the same thing at all as having no thyroid and then putting in replacement hormones. For some reason blood test does not = how we feel. Many of us have 'perfect' blood results and still feel terrible, which means doctors start telling us we have something else wrong with us, when in fact, there is something about removing the thyroid that has a MASSIVE impact on the body.
Many thanks for your informative reply. I did ask my endo if I could have FNAs on the two small nodules which I know I have on the other, currently intact, side but she didn't think it was best. I sort of agree as none of the 3 FNAs i had on the large nodule came back with anything strongly indicative of cancer and yet it was actually cancerous!
I guess I am concerned as i know i have two nodules on the other side, and that they could be harbouring cancer too.
I do understand that papilliary ThyCa is slow growing and usually stays encapsulated but I'm aware that it can sometimes metastasise to the lymph nodes in the neck which would result in neck dissection and yet more surgery.
I am in a bit of a quandary and am certainly going to put up a fight about the RAI. Thankfully, I have been told that if nothing is found on the other side they won't consider RAI.
My endo has said that they have reduced the standard approach to pap cancer as they have recently decided they were over treating unnecessarily and there has apparently also been talk about reclassifying tumours up to 2 cm ( instead of current 1cm) as potential for malignancy rather than 'cancer'.
My op is 9 days away and I will do some hard thinking this week.
Bless you, it's so tough. It sounds like you are on top of all the facts and great that they are scaling down on the 'sledgehammer to crack a nut' treatment approach. It was a bit scary refusing RAI and lots of people will tell you they breezed through it but I have heard and met some horror stories also. The good thing is you can monitor you Tg and TgAb and if they get suspect, THEN you can do RAI if you want, that's the decision we made. My Tg and TgAb have been a lovely ZERO since the day of the op......
Hi, I had my TT back in 2011 (first half removed January, cancer found but contained) second half removed March, no cancer thankfully. Like you NI's didn't detect the cancer so it was a complete shock when I was diagnosed.
I've been undergoing regular check ups, monthly, four monthly, six monthly and finally annually which I've just had last week and he says he will see me again next year - a small price to pay really. I'm on 150mcg Levothyroxine and feel great!, it took a little bit of messing around with my dosage in the beginning however he now says that although I'm suppressed 0.001 on my TSH, my T4 is on the high side at 34 (I think), plus my GP didn't request the T3 so I had to have a blood test and I'm waiting on the results next week hopefully. My consultant does want to reduce the dosage a little but for the first time since my TT I am actually losing weight and seem to have my normal energy levels again. I've asked to him to hold back on the reduction until I've lost the weight (still another 3.5 stone to go) but I've lost 10lbs in 2 months - As for RAI, I too refused it and explained my reasons to the consultant who didn't try to talk me out of it, so I assume he kind of agreed with me without saying so lol. Good luck with your second operation and whatever decision you come to. x
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