Hi
I am a 34 yr old female. I ve multiple nodules in the thyroid gland. The largest is about 3cm
The ENT specialist has biopsied the nodule. with basic blood test all coming back normal , the biopsy showed suspicious results.
I am stuck at the moment as I don’t know the cause of these nodules.
And don’t want to get my thyroid removed without answers.
I am hoping to go for further blood test to find more details .
Hi I am new on here but thought I'd jump in on this one because I have these nodules, too. I had an ultrasound first and then a fine needle biopsy which was called a FLUS--follicular lesion of uncertain significance. 5-15% chance malignant. THEN I had another FNA biopsy using the genes test called Afirma. It came back as Suspicious for a 50/50 chance of malignancy. Ruled out Medullary and Papilloma type. So I am thinking it's follicular which isn't the worst one but can be a challenge. My TSH ect tests were totally normal, which is normally the case when the nodules are malignant. I am having a bronchoscopy this Thursday to finally try to diagnose my dry hacking cough I've had for a year and a half. AND to see if there is some weird connection to the thyroid nodules. Then I guess I make decisions about surgery.
So maybe you can ask for a genetic test of the nodule itself to try to figure out more in depth what you are dealing with. More than 50% are benign.
Hi many thanks for the detail.where did you get FLUS and genes test done?
I guess not through your usual nhs doc?
Should I find a private endocrinologist and discuss things with them?
And find out if they do the advance thyroid related tests?
Many thanks for you response.
Wish you all health in the world😊
Hi Kinzasyed,
I am actually from the US. I finally saw my Ear Nose and Throat dr and he ordered the ultrasound and then the FNA biopsy(s). The result of first test was FLUS. It means "Follicular Lesion of Uncertain Significance" The category was listed as "Bethesda III". The result of this US was enough for many people to say "Take it out!".
Now with the Afirma test they are able to rule out the many cases of Benign nodules and save the thyroid. Many thousands of people have had their thyroids removed needlessly. Of course if the nodule itself is causing problems with breathing or swallowing, then it being benign doesn't matter.
I don't know if genetic testing is available in the UK yet or if (bigger question) the NHA will pay for it. I'm still waiting to see if my insurance will cover it.
I am not involved in Afirma in any way. Not trying to sell it.
I too had multiple nodules with normal thyroid function. Fna came back benign. A watch and wait policy with yearly ultrasound and fna. After 5 years with the nodules getting bigger I was experiencing problems breathing, when lying flat and problems swallowing. I had a TT in 2013 and at surgery one nodule was found to have follicular cancer with spread to one lymph node. I then went on to have radioactive iodine which was successful. It was one of the smaller nodules behind others and had never been biopsied. I have found no identifiable cause, it just was. My thyroid function was normal all the way through, nothing showed up on scans.
I am not tying to frighten you, just to illustrate that sometimes there is no reason. I do not regret having my thyroid removed as by the time of surgery the breathing problems were severe. I understand your caution and wish you good health. You are correct in trying to gather all the information to try and assess risk. Good luck.
Thanks for the reply. I’ve no symptoms so far.
Breathing normally nothing else either. Just the nodule which is appearing reduced from last yr.
And now the biopsy which is suspicious.
You experienced a tricky nodule there , and they suggest a removal of any nodules if it’s causing any discomfort .I am happy that things worked well for you in the end.
Wishing you a good health. Take care.
I'm just "a bit" older than you and have a few nodules. I don't remember exactly the result of the FNA but the specialist suggested the removal of half of the thyroid but as my gland was working ok, I declined to have half of it removed and suggested to be dealt with, like I heard they do in the States, to wait and watch. I'm going to be seen later in the year after a two year gap so I'll see what I will be told. See if you can get other tests done but if it's possible "wait and watch".
Good luck!
Thank you so much. I would love to wait and watch but the whole thing is right there all the time, and then it’s the pressure of making it worse if I wait too long!. Trying really hard to cut down on all the unhealthy habits but what can you do, cancer causing elements are used in everything we use now a days...
Anyhow I am just trying to figure out where should I get My thyroid tests done including the antibodies , selenium, iodine etc.
Anyone can recommend anything please?
I'll try and copy the details I got from a private company to which I sent a stool sample and which advertises thyroid tests also. Didn't read how many and what type but hopefully it will be helpful to you. They are based in Dublin and I liked the way they dealt with my test.
letsgetchecked.com/?utm_sou...
It's a long address but I tried it and it opens on the general page with the different choices of tests. Please let me know if they offer a very comprehensive list of tests for the thyroid gland.
Hi Kinzasyed,
No one really knows the actual CAUSE of nodule growth. It is possible that the cause is a gene that went crazy. We cannot control our genes so (IMHO) there isn't a special anti-tumor diet that is proven to work. It is true that nodules are quite common, but the test result of the FNA being suspicious is not.
I have read that the regular tests for thyroid function are usually in the 'normal' range even if the nodule is cancer, so that isn't a good indicator of a problem with the nodule.
My ENT was the DR who knew about and ordered the genetic test called Afirma. Maybe yours will too?
Your friend in the US,
Tracy
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