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General health

Multinodular Goitre

5 replies

2010sll · 19/10/2019 13:36

Hi all,
I do not know anyone else with a multinodular goitre so thought I would pop on here to see if anyone has any experience. To give you some background, dentist felt a lump in my neck nearly 4 years ago. A few weeks of worry/tests later, confirmed multinodular goitre. Throat full of cysts. Thyroid bloods fine. Went back 2 years after at my request as I thought it was growing. Scanned, all fine but no one told me if it had grown or not. GP didn't have measurements from the first scan. Anyway......woke up a few days ago and it was like it had grown overnight. Most def more noticeable and now can 'feel' it when I move my head, swallow, yawn and cough. Really odd. I have booked myself in for bloods and have a doctors appt on Monday anyway as currently being investigated for high blood pressure. Its not that high, but high for me as usually low with no problems. Recent bloods showed bad cholesterol was 3.1 and they like it 3 or under. All other bloods (no thyroid bloods) all fine.

I was wondering if anyone else had ever had this happen to them and what the cause was? Of course, could have turned malignant but last scan was this April so hoping unlikely!

Unless it was cancer, I am not keen on an operation but its REALLY quite obvious now. If bloods are fine I don't think there is anything in terms of meds I can take to reduce it - But again, I know no one who has this so am really interested to hear others story's....

Thanks in advance.

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Doublethecuddles · 19/10/2019 16:32

Hi
Thought I would reply with my story as having problems with your thyroid is a lonely business!
I had a goitre on my neck pointed out to me in December 2018. I hadn’t noticed it myself but thinking back I did struggle breathing when exercising. My bloods were fine, so had a scan followed by a FNA. I was then told I had papillary cancer which had spread to my lymph nodes. In April I had my thyroid and 31 lymph nodes removed and was put on thyroxine for the rest of my life. I discovered I had 2 tumours one was 5 1/2 m and the other 3cm and 21 lymph nodes were cancerous. The recovery from the operation hasn’t been too bad. I had to have radioactive iodine therapy in August, again I didn’t find it difficult.
I am back to my old self and running 10-15 miles a week.
Fingers crossed you don’t need it removed.

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2010sll · 19/10/2019 16:48

Thanks for sharing. Glad you’re making a fantastic recovery!

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campista · 29/10/2019 21:02

Hi! Have had mng for 25 yrs now - they used to scan yearly and do bloods, then referred me back to gp about 5 years ago.
I thought it had grown so asked for it to be checked again, but apparently no significant changes, but I know what you mean - I've never met anyone else with one, either!!

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flowersun2 · 29/10/2019 22:18

Hello! I discovered a goitre on my neck 18 months ago and finally went to doctor in January. Blood tests all good , but I could see it when I swallowed and felt it made me cough in the morning so was referred for an ultrasound. The endocrinologist found several nodules on both lobes of my thyroid and encouraged me to have a total thyroidectomy sooner rather than later. None of the nodules were particularly suspect but I also had a blood test for the marker of medullary cancer. All clear there but the waiting for these results is pretty stressful! Had my thyroid out in August- recovery was really fast. I was in hospital overnight. Sore throat for about a week due to intubation. No cancerous cells were found. Scar is very fine- have to keep it covered for a year away from the sun. Massaged it twice daily until the swelling disappeared- about 2 months for me.
I live in France and the care I received was excellent. Now on thyroxine and seem to have adapted well. Latest blood tests show dosage is good and I feel perfectly healthy!
No specific cause for my goitre although the surgeon did say that it tends to run in families and also that there has been an increase in thyroid problems since Chernobyl.

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2010sll · 30/10/2019 06:29

Thanks everyone for your replies. I saw the doctor and told him it had quite literally grown overnight so he referred me for a scan but the hospital have rejected the scan request as they don’t think I need one. So he has referred me to ENT instead to talk about options. Oddly, it’s gone back down. I can still see it but it’s not jutting out as much as it was the other week. Really, really odd. Although I’m relieved as it looked really quite obvious. Guess I’ll see what ENT say......

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