Hello, I had my thyroid removed about 2 years ago. My consultant has me on 150 mcg of thyroxine, and I fell terrible all the time.

[vanguard]

I have asked her if I can change my dose or type of medication, but she say's it has to be high to keep the cancer from returning. So does this mean that I have a choice of living a miserable life, or getting the cancer back. None of them seems good to me!!

[susymac]

Start by finding out what your actual levels are by getting copies of your blood tests, what your doctor is considering to be high, may not be, and sounds as if it isn't high enough for you personally.

If you post your results someone will be able to tell you what you should be asking your doctor for. You should also get your B12 vit D foliates etc tested too. Having these at the correct level enables better results from the thyroxine. You may need to buy your own suppliments but theres no reason why you should be left feeling bad if there are other options

[vanguard]

Thanks, I will ask my gp for the results.

[Hennerton]

I had TT seven years ago and found out last year that my T3 was under the reference range but my T4 was high, indicating failure to convert properly from T4 (thyroxine) to T3, the hormone needed by the body. Perhaps you could ask your GP for a full thyroid blood test. If it shows low T3 she may consider a trial of the combo of T4/3 to see if it helps.

[vanguard]

Hi, I have asked for that before. But she won't let me try it. Yet she has me on t3 for two weeks before my bi annual blood test.

[roslin]

150 mcg is not a particularly high dose and it may be that you are taking too little. I have had a thyroidectomy as well and I was on 300mcg for 20 years and I have now changed to NDT. It is very difficult to know untill you post all you results.

Roslinxx

[Moggie]

Just read your question and the answers and am a little confused so need to ask a few questions is that's o.k.

Is your doctor saying that you need to be on 150mcg's of levo to stop your cancer returning?

What is a bi annual blood test and why did you need to be on T3 for two weeks before it was taken?

Dont know about this not seeming good to you, something just doesn't sound right to me. Get you blood results with their ranges and post them on here so that we can see what is going on. Seems really strange that a doctor would put you on T3 for two weeks only, just before a blood test, and then refuse to give it to you again, unless your bloods showed that the T3 was pushing you to far over medicated. How did you feel for those two weeks when you were on T3. Can you go and see another doctor, in the same practise, for another opinion?

Sorry for all the question but the more info you can give us the more prople will be able to help.

Moggie x

[shaws Administrator]

Maybe you can give your consultant a copy of this link:-

endocrine-abstracts.org/ea/...

A few Endocrinologists will prescribe other than levothyroxine.

This is a link and go to the answer dated October 20, 2004

web.archive.org/web/2010112...

[vanguard in reply to shaws]

Thanks that's really interesting. None of the doctors that I have talked to here in the UK

Will link my systems to t4.

And as for combining t4 &t3...seems like no chance..

[esme07]

Maybe you could asked to be referred to another endo for a second opinion. I did this after suffering for 4 years after a TT. I now take T3/T4. It is still a slow process and by no means the correct dosage at the minute but I feel a 100% better than I did on Thyroxin only

[vanguard]

Hello everyone,

Just got my blood results....

T4 = 19.9, TSH =0.05

The Doc as started me a month trial of 150 / 175 of thyroxine every other day.

How do the results look to you?.

[peanutbutter in reply to vanguard]

Hi, I had TT, RAI - treatment finished about 2 years ago and I still cant find a comfortable level.

Had side effect of hypocalcaemia after op, straight to emergency - calcium drip - had to take calcium for while.

Was deficient in D3 - had theraputic dose - worked but still top up.

To give you an idea:

TSH - surpressed: 0.01

T4 (range 9-21) was 18 (and felt terrible) ...now going up into 20's again where feel better.

Total T3 (range 0.9 -2.4) is 1.7

Free T3 (range 2.6-6.2) is 4.5

I am taking 150 T4 and 10 mcg T3

I still am not feeling 100%, but within a week of starting the T3 I felt more 'alert and not so much brain fog.

I think its a case of trying levels to see how you 'feel' and not what is in the 'ranges' all the time.

Can anyone say if they changed their T4 to T3 combo ratio to feel better or ended up taking more T3 than T4.........

Took a while to convince endo for T3 I wonder if I dare to mention NTD.

I'm also looking into B12 and other vits to see if this makes a difference.

Any comments welcome!

[vanguard in reply to peanutbutter]

Hi everyone,

My endo now has me on 150mcg of levo a day, my gp has started me on iron tabs.

That was about a month ago, and I'm sleeping better now, and generally feeling a little better.

I will be moving shortly, so will be getting a new endo & gp. I would like to try the t4/t3 combo,

perhaps he/she will agree to it.....would also like to try armour sometime. Any one had that on the Nhs?.

[peanutbutter in reply to vanguard]

Hi, I think its patient choice, persevere and say you want to try the T3 ...yes I'm interested too to see if anybody got Armour on NHS!!?