Multinodular goiter

[DearH]

Hello everyone, I would like to share my story. I don't know anyone in my family or friends who has the same problem. I am 50 and had a healthy lifestyle my whole life (no smoking, no drinking, healthy food and sports). I have been diagnosed with a non-toxic, benign multinodular goiter in October 2022. Although I have no pain, nor swallowing or breathing problems, I have been proposed a subtotal thyroidectomy immediately, cause a scintigraphy showed that the lower part of my thyroid doesn't absorb enough radioactivity (no cold nodules though) to be treated with it. It would kill my thyroid, but not shrink it. I've had 3 ultrasounds, one scintigraphy and one biopsy. First 2 ultrasounds, the scintigraphy and biopsy of biggest nodule showed nothing suspicious. No swollen lymph nodes either.However, I always do my own research. As I live in Belgium, where RFA (radiofrequent ablation) is not offered as a treatment, I made an appointment in a clinic in Holland. Interestingly, the ultrasound there in June had a different outcome than my last in Belgium 3 months before. Instead of showing different smaller nodules on the right, it showed one large nodule of 4,8 cm, tirads 3 and a calcified nodule of 2,5 cm above that, which is a tirads 4.

My left lobe still has a normal size but shows a small calcified nodule of 9x6x8 mm and a nodule of 1,5 cm. No further details were told on the phone.

My last bloodworks In March showed nothing abnormal, anemia which I had before, was gone.

Results :

TSH : 2,19 (0,27 - 4,20)

Free T4 : 15,9 (12 - 22)

Free T3 : 4,19 (3,10 - 6,8)

Anti-TPO <15 (<34)

First step now is having a biopsy done on the large nodule and the calcified one in my right lobe. If they are benign, maybe RFA of the big nodule will be possible. I have the impression the right lobe has gotten a bit bigger.... Fingers crossed, I will keep you updated. Maybe my story could help others with the same problem.

[PurpleNails Administrator]

Welcome to forum.

Thanks for sharing your journey.

“scintigraphy showed that the lower part of my thyroid doesn't absorb enough radioactivity”

If uptake in thyroid is low, doesn’t this mean the function is low / reduced?

The results do show “in range” TSH & FT4 & FT3 but the FT4 & FT3 are on the lower end of the range.

Your TPO antibodies are negative but they can fluctuate greatly, it might be worth also testing TG antibodies as sometimes these can be positive when TPO don’t show up.

Have you tested key nurtrients? Folate, ferritin, b12 & vitamin D?

What is the reason for recommending sub thyroidectomy? Usually surgery is considered if there’s a physical issue or hyper function.

Surgery involves removing almost all the thyroid or 1 side or lobe of the thyroid. ie total or sub total. Surgeons do not remove the nodules or eg the lower half.

You do not have a function issues, you're said you have no pain. swallowing / breathing issues, benign biopsy. So your doctor should be explaining why surgery is recommended.

The tirads 4 would require close monitoring.

[DearH in reply to PurpleNails]

Thank you for the welcome! All vitamins, minerals are okay. In Belgium they wait or do surgery, nothing else. I was surprised with the tirads 4, cause the 2 former ultrasounds were fine. Indeed, I will have more biopsies done, probably by the end of August. As I have them done in Holland, it's all going a bit slower. Subtotal here means they just leave a bit of tissue on both sides together with the 2 parathyroids. Endocrinologist recommended it because "it would keep on getting bigger". RAI was no solution and RFA not done in Belgium. I have no symptoms of hypothyroldism, no weight problems. My weight has been the same for 30 years. I will ask my doctor about the TG antibodies. Thanks for the tip!