I'm looking for some advice. I have a large nodule in my thyroid (had it for over 10 years, biopsy, scans confirmed a thyroid tissue mass) and I'm thinking about removing the thyroid now. Hormone levels are perfect but some days the nodules are really annoying in respect of swallowing and pressure in my neck. Some days they are barely noticeable at all. Been fighting with the thought of the surgery for months now as life on hormones absolutely terrifies me not to mention the side effects of the surgery but it's starting to impact negatively on my life. Has anyone been in similar situation?
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IsabellaGloria
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I recently had a TT for the problem you describe but I also have Graves. I held onto my thyroid for 25 years until it became unavoidable. If you click on my name, you can read about my experience with surgery because my situation was similar in certain ways to yours. It is such a tough decision - and there are those on the forum with both good and bad experiences.
Most importantly, the decision is a very personal one to be made by yourself with sound medical advice. Your experience may turn out to be very different from those on this forum. We are the 20% who have difficulties and treatment issues. 80% of patients do fine on levothyroxine mono therapy after surgery and do not have difficulties.
If you are OK most of the time and you do not have other symptoms, then your decision will depend on how badly you feel at the moment and how much it affects your quality of life. Surgery is a very bIg step and of course, irreversible. Are you hypo or hyper and are you on meds or not? Do you have thyroid blood work to post with all your readings? How large is your nodule - is it bigger than 2.5 Cm? Is it a cold or hot nodule? That would also help to give you some advice.
Most people on the forum will advise against surgery because having a thyroid is generally preferable to not having one. I do not offer my personal opinion - but rather, provide the pros and cons about surgery. There is no question that meds adjustment afterwards is a challenge and that the risks to surgery are not small - loss of vocal cords and parathyroid damage - and even these occur less than 5% of the time - in the hands of a skilled thyroid surgeon (one who does 5 -10 per week and who has an audited hospital error rate of less than 1%) you should recover very well and most people do recover well. In my particular case, surgery was the correct medical decision and I had a very talented surgeon.
Wishing you all the best today and good luck with your decision. Let me know if I can help you further.
Thank you for your helpful reply. I appreciate it.
The nodules are big, one of them probably about 5cm. It is very visible on my neck. Thyroid works absolutely fine and all of the nodules are cold. This makes the decision so much harder. I start noticing occasional changes in my voice, worried about bigger chunks of food getting stuck and pressure when I'm lying on my back is quite uncomfortable. I'm not on any medication and in good health. I've seen my endocrinologist but obviously she's saying the decision is mine.
Keep in mind that most of the time, thyroid conditions move very slowly, so you do not have to rush your decision.
Did your nodules increase in size rapidly or slowly over time? 5 cm is considered quite large. Is food actually getting stuck or are you just worried about it at this point? Do you wake up very tired in the morning no matter how long you sleep and want to nap during the day? Also, were any of your biopsy results suspicious given that your nodules are cold ones?
Keep in mind that your nodules are very large so the minimally invasive surgery for smaller thyroids will likely not be possible - and your scar will also be somewhat larger as a result. My scar is about 2.5 inches long. This is something you should discuss with the surgeon you consult with.
The real issue it seems to me, is the size of your nodules and how much more difficult surgery might be if you wait and the nodules increase in size even more. That was the risk I took myself when I waited for so long to remove my own thyroid. One of my nodules was the size of a grapefruit and the other was the size of a navel orange. But my neck just looked very thick - I didn’t have one big lump sticking out - it were evenly distributed. The larger the nodules, the more complicated the surgery becomes. It will also depend on the location of the nodules as well.
Your situation is complicated and I truly understand why you are so conflicted. The answers to the questions I raise above may help you to make a decision. Unlike you, my Graves was a complicating factor. You thank goodness, are healthy otherwise. That’s a good thing should you decide to elect surgery now. Illness makes surgery more complicated.
Wishing you all the very best. Good luck.
The decision is all yours. A few points you should bear in mind are:
You are lucky that your thyroid is currently working OK, but your symptoms are becoming worse, meaning that at some time in the future you are likely to need an operation to remove the mass.
The longer you leave it, the more difficult and dangerous the operation becomes for the surgeon. The surgeon would put a great deal more pressure on you if he thought that the situation was becoming out of control and endangering you.
It is unlikely than the operation to remove the goitre would entail the removal of the entire thyroid gland, meaning that the residual thyroid tissues could start working again just like a complete gland, BUT the longer you leave it I believe, the less likely this would happen.
I was lucky that mine did this as the operation was delayed somewhat, so it did take it 3 months to reactivate back in 1980.
You should enjoy fully the life you can enjoy with a fully operation thyroid as life without one at all is rather challenging.
Don't concern yourself about the inevitable scar as that is the least of your worries. I am rather proud of the 3 scars on my neck in fact. Better to have a few scars and still be alive, I say
Thank you all for replies. I don't worry about scars at all. Greekchick results were never suspicious, always been told it's nothing to worry about. It's growing very slowly but I suppose it is growing as it was about 1.5-2 cm 12 years ago. Food not getting stuck but I do feel it's slowing down a bit sometimes and I am very tired in the mornings and would sleep most of the day but have been putting that rather down to my crazy lifestyle at the moment. I think you helped me with a decision and I'm going to see a GP about taking it further.
Panda123 I was told by the endocrinologist that even though my thyroid is working fine it would be the whole gland removed as they don't do partial removal anymore.
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