A candidate for thyroidectomy?

[Sheilla]

I need your input good people. I have Graves since 2015 and on carbimazole. My results keep fluctuating with each change of dosage. 10mg is too much, 5mg is too little. Varying dosages between 5 and 10 doesn't seem to work. Am I a candidate for thyroidectomy? What experiences does any one have with total removal. What are the disadvantages? Thanks for your help.

[Hennerton]

Your experience with Carbimazole sounds exactly like mine. I gave in and had a thyroidectomy but have to admit I regret it and I wish I had been told about a different medication called PPL, or the different method called Block and Replace. People seem to do well on this. Enough Carbimazole is given to reduce the output of your thyroid to zero and then Levothyroxine is given just as it would be if you had no thyroid. I was under a private endocrinologist, who apparently knew nothing about thyroid matters.

My advice, for what it is worth, is hang on to your thyroid if you possibly can.

If you find you absolutely cannot, make sure to get it put in writing that if you do poorly on Levothyroxine, (T4), you will be offered a trial of Liothyronine, (T3) to be added to your Levothyroxine. it is all a steep learning curve but there will always be members here to help. This is an amazing site.

[SlowDragon Administrator]

What are your vitamin levels like?

Common for vitamin D, folate, Ferritin and B12 to be low

[Hennerton]

Yes, agreed. I tried NDT - Armour and simply could not make it work for me.

It would also be harder for Sheilla to get that agreement, as it is not licensed here. It is hard enough to trying to get T3!

[Hennerton]

Yes, that is how I got mine but apart from the fact that it made me feel ill, it was a hefty price to pay every month. As a first step, after Levo, it is good to at least try the combo.

[Argie1]

I had a total thyroidectomy in January this year due to uncontrollable Graves’ disease. I was on 60 mg Carbimazole and eventually tried block and replace but this didn’t work either. I constantly felt ill, fast heart rate, flu like feeling, hot, no energy, anxious etc etc. I just wanted it out in the end. I definitely feel loads better with it out and don’t regret it. It is difficult getting the dosage of Levo right, and I feel like I need a higher dose (feel tired in the afternoon) but the gp won’t give it me because my TSH is low so it’s a continuing battle! Also my B12 is low and ferritin and iron but the lovely people on here have given me some fantastic advice. I do feel like I’ve just been left in the hands of gps who don’t seem to care how I feel but i much prefer to feel like I do now than before. I hope this helps x

[Sheilla]

Thank you so much for these replies. I have been so scared of total thyroidectomy, though I did not have full knowledge. I'm in a better position to consider mu options after your advice. Thank you very much.

[ling]

Hi Sheilla, how are you doing?

[Sheilla in reply to ling]

Hallo ling. Still trudging along, trying to avoid both RAI and surgery. And you Ling?

[ling in reply to Sheilla]

Is it still difficult stabilising?

What symptoms do you experience?

I had another bad attack in Jan and am still suffering and still trying to figure things out without a proper thyroid doctor. I'm also asking if it's time to get a TT : )