Level of thyroxine replacement therapy? - Thyroid UK

Thyroid UK

137,783 members161,595 posts

Level of thyroxine replacement therapy?

7 Replies

Hi

I wondered if anybody out there who has had a total thyroidectomy due to thyroid cancer, could tell me what amount of thyroxine replacement therapy you are taking on a daily basis, and if you feel the amount you take is enough to make you feel healthy and well?

Thank you!

Read more about...
7 Replies
cjrsquared profile image
cjrsquared

I was started on 150mcg after TT and rai, my TSH was suppressed (which they wanted due to cancer), I felt ok ish but not as I had before. I wasn’t initially sure if this was due to levothyroxine or the after effects of surgery rai etc. I tried levothyroxine only for over a year, my blood tests were ‘fine’ but I wasn’t so I researched further and eventually started to self treat with combined levothyroxine and liothyronine ( which I source myself). Many people do well on levothyroxine only but of course they do not necessarily frequent forums. It is important to look at vitamin and mineral levels as well as the body needs good levels of iron, selenium as well as vit b 12 and vit d in order to utilise levothyroxine (t4) and turn it into t3, the active hormone.

I wish you well, it is a steep learning curve. Once you have blood results post them on here and some helpful people will be able to advise. Good luck.

in reply to cjrsquared

Thank you very much for your reply. 😊

Caesard profile image
Caesard

Hello Frederic, I'm afraid there is no recipe, due to both many influencing factors and individual specific. However, I have been in the same position to try benchmarking mix, dosages and results andfound out that the range is very broad.

Please see here one of my attempts:

healthunlocked.com/thyroidu...

From my experience this is a trial and error game, now being more than 2 years since I've started tweaking with T3, supplements and lifestyle in order to get me better, which I did. I can't say which is more important, dosage, lifestyle or approach but probably it's a mix of things, but I can say that I am now content with the achievements. It takes time and effort but it seems it's not impossible to reverse the effects of poorly managed replacement therapy.

To be specific, I am now on a combination therapy using 150T4 and 30T3 split in a morning dose of 100/20 and an evening dose of 50/10. Tests are ok for FT3 and Ft4 but TSH is suppressed (I don't bother about TSH though, with that much T3 into the system is probably irrelevant)

I supplement D3 constantly and B12/B6 on an on/off approach, testing for levels every once in a while, when off pills.

I hope it helps...

SilverAvocado profile image
SilverAvocado

I was very unwell immediately after my TT, was in bed all day, not able to return to work as expected. Eventually, about 18 months after my op, my blood tests were looking perfect, even by forum standards, on both Levo and T3. But I was still in bed all day and could hardly walk.

I'm now 2 years into self treating with NDT. I felt a difference almost immediately when I first started it, even though the dose was tiny. I've been raising very slowly and am now on 7 grain, which is a very high dose. I'm able to get out of bed for a lot of the day now, I can wash and dress and feed myself pretty easily, and am building up to going out for walks and doing fun things.

I believe I have some form of thyroid hormone resistance - that the hormone isn't passing into my cells where it can be used. Have only just got to the point where I can read much about it, so will hopefully know more in a few months.

Mithomp profile image
Mithomp

Hello, I had a tt due to thyroid cancer, 5 months ago. I'm currently on 150/175 levo on alternate days. I am feeling better, but also had chronic fatigue before this all started, for the last few years, and this is still an issue. It does seem to vary what people need - and also can take quite a long time for the body to adjust after this major operation.

diogenes profile image
diogenesRemembering

If you tolerate T4-only therapy well, the dose aimed for is about 1.8 mcg T4 per kilogram body weight. This is not set in stone, but is a starter point, from which you can fine-tune either way. If T4 only doesn't suit in any amount, then T3 addition might help.

Thank you everyone for your kind and prompt replies. 😊

You may also like...

Replacement therapy and TSH levels

have primary hypothyroidism after RAI 35years ago.I feel good on 200mg with a surpressed TSH Meds...

Replacement for thyroxine

BBC4 yesterday saying the government are replacing thyroxine with something cheaper as the price...

Over replaced thyroxine- how to reduce?

following symptoms of over-replacement and had around 4 weeks of feeling really really well (just...

The discovery of thyroid replacement therapy

those who have so far not read anything of the history. The discovery of thyroid...

Are there any natural remedies to replace Thyroxine?

and my Thyroxine levels have increased from 11 to 12. I have opted not to take Thyroxine just now