Newbie needing advice. Total thyroidectomy scheduled for a weeks time. Multinodular goitre.

[Mumtoboy]

Please bear with me because I'm new here. I have had multinodular goitre for the last 9 years. I also have a family history of thyroid cancer. My latest biopsies were clear, my trachea has deviated to the right due to the goitre and my TSh has always been around 0.4. The goitre is large and bothers me due to its appearance and the feeling of it pressing on my throat but it has not affected my breathing or swallowing.

Today I went for my pre op assessment and it was found that I have a high temperature and rapid pulse so quite likely that my operation will be postponed. The nurse was basically asking me why I wanted it removed anyway and was scaring me a bit with stories of horrendous weight gain after thyroidectomy and patients who could not get their thyroxine dose right.

Does anyone have any good experiences to share following thryidectomy? Has anyone had it due to aesthetic reasons (which I guess is my main reason for surgery)? Has anyone's multinodular goitre got smaller by itself? Sorry to ask so much but now it seems I may have a bit more time, I'm beginning to wonder if I should have this operation after all. I have had 9 nears of watching and waiting and it has only ever got larger. Thanks in advance.

[helvella]

I get a feeling that you are under-stating the non-aesthetic case for surgery. Feeling it pressing must be unpleasant - I certainly would not find that easy to put up with. And making your trachea deviate is not exactly a good thing!

We have heard of a number of people who did not get treated with an appropriate dose of thyroid hormone after a total thyroidectomy. But many have been treated fine. A little while ago, I wrote a blog about how to estimate the dose to start on in that situation (based on what I have picked up around the place).

thyroiduk.healthunlocked.co...

That also links to a spreadsheet which you can use to calculate how much you *should* need according to several different formulas! (There are links to the research papers to back this up - it is not a figment of my imagination.)

That should at least help to avoid being grossly under-treated.

I shall now bow out and let those with actual experience relate their stories.

Rod

[Mumtoboy in reply to helvella]

Thanks so much- i will read the link now. Yes, you are right but because I have had it for 9 years I think I have got used to it and it's almost become normal for me.

[susanclark in reply to Mumtoboy]

I also had a substernal goiter ,which affected my breathing ,I had it removed three months ago and thank god I did ,I can breath now and do normal things ,you will be fine ,I was terrified before mine ,but I'm here to tell the tale ,won't be long and it will be all over ,then you can get on with your life x

[Mumtoboy in reply to susanclark]

Thanks so much! It's good to hear a positive story. x

[clairethebear]

Good luck Momtoboy when you have your op.,, I'm due one too soon I hope, my surgeon could not find the results from my ct scan, or her silly secretary cant rather, but I rang about and found where it went, so hope to hear from them soon, for my operation. I too have a multi nodular thyroid, lots of cysts and nodules, which my surgeon says shes taking away (full thyroidectomy), so obviously I'm nervous too, will keep an eye out for you take care and fingers crossed xxxxx Claire xxxx

[Mumtoboy]

Thanks so much. Good luck to you too. i have a sore throat right now, so guessing mine will be postponed

Take care x

[sued007]

go for it- im 6days post op of TT and if you read my many posts you can see i was petrified also but although i had mine done as i had stridor and breathing problems ,im astonished at how slim my neck is now -its\amazing/ I was in ITU etc but even at this early stage can say i would make this decision again. As for the Levothyroxine i was put om 150mg day after op and touch wood dont feel too bad so far- im positive i will beat this and there are many people who do sail through no problems- just make sure you are as healthy as you can be before opx Sue