Titian Posted January 14, 2011 Share Posted January 14, 2011 I have a normally functioning Thyroid but a significantly large goitre that has rapidly grown over the last year (I'm 39 this month) and now has a diameter of 5cm. I have seen surgeons and been given options of radioactive iodine treatment to see if they can shrink it (but no certainty that it will work) or full thyroidectomy due to the fact that I have a diverted windpipe now and pressure on windpipe etc. Or..... in my opinion I can leave it and see what happens (this is mainly due to fear of the operation and reluctance to be on medication for the rest of my life) although I know the prognosis is that it certainly will not get any better. Should I stick it out, as I'm young for this kind of op, or should I just not delay the inevitable? I'd be very grateful to hear from people who have had this done and especially to hear about post op living. As I say my thyroid functions normally, so I would be going from feeling normal, except for the discomfort of breathing and pressure in neck, so having to be medicated to have normal thyroid function but without the current discomfort. Don't know what the right decision is... Link to comment Share on other sites More sharing options...
Lady Star Posted January 14, 2011 Share Posted January 14, 2011 My Dad had his removed at 21, he never looked back in all honesty, although he had the variety that makes you too thin, and he wasn't able to eat as much as he had before... You are not too young for this op, although my Dad was the youngest to have his removed when he had it done almost 40 years ago... Link to comment Share on other sites More sharing options...
Titian Posted January 14, 2011 Author Share Posted January 14, 2011 Thank you Lady Star, that sounds encouraging. It may be slightly different as I expect he would have been having some unpleasant symptoms before his op due to thyroid function. I only have the discomfort of a goitre and no hormone issues. Has his medication been trouble free over the years? Link to comment Share on other sites More sharing options...
Lady Star Posted January 14, 2011 Share Posted January 14, 2011 No, he was fine - so he says, I wasn't about when he was 21! He was unusually thin, but happy with that as he was a mod, so that went with the look... Then he had the goitre, and it just got bigger so his drs wanted the lot out - he has been on thyroxin ever since, and always will be for the rest of his life, but he has never been 'ill' in any other way since... Link to comment Share on other sites More sharing options...
Titian Posted January 15, 2011 Author Share Posted January 15, 2011 Thank you Lady Star. Link to comment Share on other sites More sharing options...
Phanerothyme Posted January 15, 2011 Share Posted January 15, 2011 I had a lobectomy in 94 and another one in 95 (and a lymph node clearance) followed by ablative radiotherapy at the Weston Park in 2001. So I definitely don't have a Thyroid gland anymore. Since then I've been on Thyroxine. The hardest thing for me is remembering to take my tablets. Because you don't feel any ill effects from missing even a few days, it can easily become a week or a month - and then you start feeling lethargic, getting cramps in your legs from walking (lactic acid transport away from muscles is compromised when you are hypo) and your skin goes dry (and quite possibly your memory goes wonky). I've presented with a TSH level so low, the doctor expected me to be showing symptoms of psychosis - I asked him how I'd tell the difference. They despair of me and my compliance issues - most patients are more reliable. But apart from that, I've barely noticed any differences. Oh you get free prescriptions once you're dependent on Thyroxine (medical exemption from prescription charges). Just resist the temptation to run your thyroxine levels higher than you need - you'll lose weight and go mad simultaneously. And get a six monthly blood test. But your doctor should go over all this for you. The Ops I had were 15 years ago, so I imagine the tech has moved on a bit, but I was out in a few days with staples in my neck both times, and back to normal after a week or two. I'd go for the op. The medication dependency is no biggie. Especially if you can convince your doctor to get a 3-6 months supply instead of the usual 28 days. And if you find yourself without Thyroxine for a week or so, it's no bother (your mileage may vary), just make sure you start taking your tablets again as soon as possible. Link to comment Share on other sites More sharing options...
Titian Posted January 15, 2011 Author Share Posted January 15, 2011 Hi Phan, I was hoping you would reply. I know your journey was a quite different and I appreciate your reply. I have to say your relucantce to comply reassures me of your recommendation. Looks like decision made then. Link to comment Share on other sites More sharing options...
Phanerothyme Posted January 15, 2011 Share Posted January 15, 2011 It's not reluctance so much as world-class half-arsedness. But "better out than in" as my surgeon said! (Did I mention they fill your veins with methylene blue to stain the parathyroid gland, which they absolutely do not want to remove? You'll be p*ssing bright blue for days!) Link to comment Share on other sites More sharing options...
vwkittie Posted January 15, 2011 Share Posted January 15, 2011 I was hyper and had an enlarged thyroid. I was given the choice of either the op or radioiodine. Personally I didn't see invasive surgery as a sensible first option (and neither did my consultant) so I opted for the radioiodine. I knew of course that had it not been successful I could always have the surgery at a later date. Of course, not everyone's personal circumstances would fit in with having this. You need to be able to have a significant time off work, not be planning children any time soon, and be able to avoid significant contact with other people (especially children and pregnant women) for a few weeks. The advantage is you feel absolutely no ill effects from the treatment at all, with no scar and none of the other risks of surgery. I had it done in 2008 and have absolutely no thyroid there now, no lump at all. It disappeared within a few weeks which is great. I've been on thyroxine since which hasn't been a problem at all. I just keep mine next to the bed and as soon as I wake up it's there and I take it. I get called for regular blood tests which are just done at the GP surgery so no big deal. I've also arranged with my local pharmacy to do all my repeat prescription reordering etc so it's just a case of popping in there for 2 mins once a month to collect it (it's free of course). I had a lot of fears about ending up being reliant on medication forever, and thought I might end up fat or something! But these have turned out to be silly and I feel fine and haven't had any side effects at all. I can totally understand it would be even more of an agonising decision in your situation so I really feel for you there. Anyway hope this helps and good luck with whatever decision you make! Link to comment Share on other sites More sharing options...
Titian Posted January 15, 2011 Author Share Posted January 15, 2011 It's not reluctance so much as world-class half-arsedness. But "better out than in" as my surgeon said! (Did I mention they fill your veins with methylene blue to stain the parathyroid gland, which they absolutely do not want to remove? You'll be p*ssing bright blue for days!) Excellent... OOh I just love metabolic systems... fascinating. Link to comment Share on other sites More sharing options...
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