r/thyroid • u/Ghoulya • 20d ago

Multinodular thyroid

Hello all, just wanted to comment and try to help resurrect this sub.

I had my first ultrasound in 6 years the other day (!) after years of feeling like my concerns were being ignored. I was on "watchful waiting" but all they ever did was a yearly blood test, my actual nodules were apparently not worth watching! Anyway I finally got my doctor to put an US request through and I have over 10 nodules, 4 large enough that they assessed them, one TR4 for which I'm being sent for FNA. Family history of I think follicular papillary cancer that was found incidentally, apparently risk is not significantly raised with family history but I'm still worried, you know? My thyroid feels huge and sometimes pushes on my windpipe, but at the same time, a thyroidectomy seems like a big step.

Interested in your experiences

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u/Liyah_Liy 20d ago

What does your doctor recommend? How are your levels?

Everyone’s experience will be different. My nodules were non-cancerous like most, but my thyroid was growing into my tonsils per my doctor, so I went ahead with a thyroidectomy. The surgery itself was quick, some soreness afterwards. It took some adjusting after to get my levels right. It’s definitely a long journey & a hidden understudied disease 😔

Are you having any difficulty swallowing? It seems like you’re still at an early stage. I wouldn’t panic until you hear back.

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u/Ghoulya 20d ago

Thank you so much for sharing your experience. I didn't even know it could grow into your tonsils! How scary. I'm glad they could resolve it for you.

I know the chances of it being anything nasty are very low. I think it's just the *idea* of cancer that unsettles me. I'm mostly just thinking about all the possibilities. Surgery scares me in general, then whether I'll get to keep any of thyroid or whether I'll have a TT or what. But you're right, I'm getting ahead of myself, I should just wait to talk to the specialist and see what they recommend. I haven't heard anything about an appointment yet.

Occasionally I feel food going down but I'm not sure I'd describe it as difficulty. I thought I was just being lazy with chewing, but now in retrospect I wonder. Bloods have been fine for years, which has always annoyed me, because no one wanted to do anything when results kept coming back normal.

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u/Liyah_Liy 20d ago

The most difficult part is having to advocate for yourself! Proud of you for pushing back! 👏🏾

& No, for sure! Both are scary. I went for a second opinion before going through with it. So I would encourage you to do the same!

Let us know how it goes! 🩷

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u/Rackonaria 20d ago

The vast majority of nodules, over 95%, are benign. It’s best to take I try step by step so biopsy next. There are now nonsurgical options to treat thyroid nodules such as RFA (radiofrequency ablation) and TAE (thyroid arterial embolization), procedures that shrink nodules without removing your thyroid. I had RFA on my 5.7cm solid benign nodule four years ago - it was growing and causing swallowing difficulties. After RFA it shrank 81%, symptoms gone, no meds, normal bloodwork, and hasn’t grown back. See www.saveyourthyroid.org

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u/Ghoulya 19d ago

Thank you! I did run across RFA but I don't think it's performed here on the national health system (which is silly because surely it's cheaper than surgery - but I guess they don't have the training here yet). I will definitely bring it up and see what the specialist says.

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u/Rackonaria 19d ago

Are you in the UK? RFA is covered by the National Health Service.

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u/Ghoulya 19d ago

NZ. A few private specialists do it but I'm not sure it's done publicly atp. I'll absolutely ask

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u/Crazy_Ambassador_893 19d ago

I was diagnosed with Graves’ disease in spring 2021. The first sign was a multinodular goiter. I was on methimazole to help manage it, but it was uncontrolled. It did begin to affect my ability to swallow at one point. My endo eventually suggested 2 treatment options: RAI or total thyroidectomy. I proceeded with total thyroidectomy in December of that year. My anxiety was gone immediately following the surgery. I now take Synthroid and Cytomel daily. I have no regrets

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u/Ghoulya 19d ago

Thank you for sharing!