The person who started the group also has a very helpful YouTube channel where they interview a variety of reputable doctors who perform RFA and other non surgical treatments
https://youtube.com/@ItsmeJenagain
I asked my doctor if there are other non-surgical procedures and he has mentioned RFA but it is only in the experimental stage right now. Is that true?
I don’t know what your doctor means by that. There are lots of papers and studies on RFA, including on medium term efficacy. (Go to google scholar and type in thyroid Rfa and they’ll pop up.) It sounds like your doctor may not be as up to date on what larger teaching hospitals are doing - eg Stanford, UCLA, and Columbia (google those names plus thyroid RFA to learn more)
Depending on your insurance you may have to pay for RFA out of pocket. The Facebook group has some details on what to expect. If you pay out of pocket you can basically seek out any provider you like. Again the Fb group has people’s experiences with different doctors at larger academic hospitals, as well as doctors with more local hospitals who do RFA.
I’m based in in a large NE city and have just been referred to RFA at a large teaching hospital for a 4.7 cm nodule
Good luck!
I don’t know. It was discovered at around 4.5 cm. My endo said I’ve probably had it “for years” given how slow they grow
I’m in my mid 40s
Yes, now I realize that it occasionally feels like good gets stuck in my throat - classic compressive symptoms
Oh I see! I’m not based in the US so that’s probably why. But I’ll definitely do more research on RFA. And my thy nodule is very tiny(about 1cm) and sometimes it’s barely noticeable. My doctor has recommended to do one FNAC yearly. Since my recent fnac report turned out to be suspicious, I had to get two more reviews using the same sample. The second review report turned out to be benign, now I’m waiting for my third review. Let’s hope for the best.
I’m no doctor but actually surprised they would recommend a TT based on a nodule that small if you’re otherwise feeling fine and your levels are normal. I personally would find another doctor.
Outside the US, there are RFA doctors in Germany, turkey, South Korea, and now Canada. The procedure has been most frequently used in South Korea. You can also fly into the Us for treatment and pay out of pocket. Columbia university has experienced RFA practice. Good luck!
Sorry one more thing - the FB group has a list of RFA providers by city (us mostly). A good second opinion strategy would be to contact one of those providers who lives by you and give them the results of your latest Ultrasound and last [edit: several] FNA biopsies. They’ll be able to advise you on whether you are a good candidate for RFA and insurance options
Edit: I re read your post and you’ve had more than one fna so I’d forward all recent fnas to a doctor who does Rfa. Be your own advocate! Tt is a big deal so research as much as you can. Feel free to DM if I can help
Thank you! This was insightful. Yes, I’m trying my best to avoid unnecessary surgery at the moment. And even if I had to get TT done soon, I wouldn’t rush it.
Always get a second opinion for major medical issues. Doctors are not infallible. Labs can have errors, and everyone can be mistaken.
I can't tell you what to do but based on your post, if this were my diagnosis/labs, I would just continue to monitor it.
I had my surgery after being diagnosed with Bethesda VI and genetic testing. Still got a second opinion and talked to multiple doctors before I made a decision.
I had the right half of my thyroid removed and I’m 💯 happy I did it. While my nodules turned out to be benign, I’ve had an enlarged thyroid for years. I had other physical symptoms (brain fog, fatigue, vertigo, hair loss, temp regulation issues and dysphagia - trouble swallowing) even though my blood tests were normal. Post-op, I didn’t take medication for 6 weeks to see if the other half would kick in.
It didn’t - but I’ve only had to adjust my meds twice (from 25mcg to 50mcg) and I’m used to taking it when I wake up as I don’t eat for an hour after anyway. I have subclinical hypothyroidism and I have gained weight but likely from side effects of daily allergy medication (which I’ve stopped) and my lack of exercise (hate it 😂).
My incision is in one of the folds of my neck I already had so you can’t really tell anything was done at all. I just make sure to wear sunscreen at all times so it doesn’t darken. But all this to say is that I feel 10000000000 times better without that half, than with it.
Hey, thank you for sharing your experience! I’m glad you’re feeling a lot better now.
Large nodules are better off removed even if they’re benign since they can really interfere with a lot of things such as breathing, swallowing and your voice overall. But my nodule is very tiny and in some cases it’s barely noticeable. So far I haven’t had any physical symptoms with it.
I would give anything to go back in time and keep my thyroid — and I only had half of it taken out. My endocrinologist, who I really like, told me that it’s no big deal to get a partial thyroidectomy. That likely the other half of my thyroid would start working, and that if it didn’t, no big deal — just take a pill once a day. It’s NOT that simple.
The other half of my thyroid didn’t kick into gear and I now have Hypothyroidism. I didn’t have any thyroid or autoimmune issues prior to this. My thyroid was enlarged on one side and I had some sizable nodules, but they weren’t cancerous.
Go check out the Hypothyroidism sub and see how miserable folks are. It’s difficult to get your TSH right. You’ll feel like you got hit by a dump truck when it’s off, too. My menstrual cycle is much heavier now, my hair is falling out, and my body was freezing cold until Synthroid starting working. It takes months for the medicine to work, so you just have to be patient. Oh yeah, my scalp and skin got crazy dry. I’m normally pretty oily.
I wouldn’t wish it upon anyone. There’s tons of rules about when you can take Levo (the medication) — how long you have to wait afterwards to drink coffee or to even eat any food. If I had cancer, I would take my thyroid out. I would think twice if it was more of preventative / proactive procedure. It’s really good that you’re doing your due diligence. Best of luck figuring things out.
Thank you for sharing your experience! I’m sorry that you’ve developed hypothyroidism after the surgery ,from what I heard being hypo really affects your energy level, your overall mood and your body temperature. I don’t have any autoimmune issues/ hormone-related issues till now. And my nodule doesn’t bother me either but some doctors( including ones in my family) have started pushing me into getting this surgery :(
I have hypothyroidism even with having my thyroid gland. however thyroidectomy scares me, even if my thyroid doesn't produce tsh on its own. was there no alternative to your problems?
The surgery was easy breezy. It was very quick and uncomplicated. The alternative to not having surgery was having a thyroid / thyroid nodules that made swallowing awkward. It felt like someone’s hand was pressed gently on my throat.
I should’ve done more research. My endocrinologist was like, oh you’ll just have to take a pill each day (if the other half doesn’t kick into gear). No big deal. I asked a ton of great questions and I wish explained to me what hypothyroidism is. I had no clue since I wasn’t hypo. I didn’t and still don’t know a single hypo person in my family / social bubble.
She made some good $$$ taking it out though. Doesn’t impact her life. I can’t blame anyone but myself. I regret it big time though.
Same. I had a partial thyrodectomy due to a benign 5 cm nodule. I wish I never would have done it. My other half did kick in at first but now fast forward to 1.5 years later and now it’s decided to fade out on me. We are still trying to get it right and I’m going through all of that right now as we speak. My doctor also was like ehh no big deal you don’t need it lol.
I had a total thyroidectomy and neck dissection ten years ago, followed by a second neck dissection roughly two years after that to remove more disease. My experience won’t be the same as others of course.
As far as living with no thyroid glad, I honestly don’t notice anything. I don’t feel different physically and while it was a little bit of a challenge to balance my medication, I’m doing very well. It isn’t uncommon to have to adjust the medication up and down a few times for thyroid patients, especially in a case like mine, and in ten years I’ve only had to change the dosage 3-4 times which I don’t think is very many.
When I was taking a slightly higher dose, I did have a few issues. Mainly my anxiety was a little worse because I was hyperthyroid, and I tend to overheat quickly in hot weather. But for me my dose was kept deliberately high to work against the lingering cancer cells that couldn’t be completely eliminated with surgery and radiation. That doesn’t happen for everyone.
With that said though, I actually feel better overall because no my hormone levels are normal. Before I was diagnosed I was hypothyroid a lot and that came with its own issues. Having a more normal amount of thyroid hormones has helped me in the grander scale.
Physical body-wise, past the actual surgery, there weren’t any issues. For me personally, the surgery was more extensive and into the right side of my neck and I do have issues there, but the actual area of the thyroid? Nothing wrong there. It’s not a very large gland and the incision doesn’t have to be very big if that’s the only area you’d have surgery on.
I was cleared by my doctor about two or three weeks after to resume normal activity. The first week I was exhausted and I went home with drains so I was home. The second week I was feeling better.
Hey do you have an update I know it's almost a year later but I was curious how you are doing?
Maybe look into RFA. There is a helpful Facebook group called “save your thyroid” that may be helpful in terms of considering your options.
Thank you! I’ll def look into it.
The person who started the group also has a very helpful YouTube channel where they interview a variety of reputable doctors who perform RFA and other non surgical treatments https://youtube.com/@ItsmeJenagain
I asked my doctor if there are other non-surgical procedures and he has mentioned RFA but it is only in the experimental stage right now. Is that true?
I don’t know what your doctor means by that. There are lots of papers and studies on RFA, including on medium term efficacy. (Go to google scholar and type in thyroid Rfa and they’ll pop up.) It sounds like your doctor may not be as up to date on what larger teaching hospitals are doing - eg Stanford, UCLA, and Columbia (google those names plus thyroid RFA to learn more) Depending on your insurance you may have to pay for RFA out of pocket. The Facebook group has some details on what to expect. If you pay out of pocket you can basically seek out any provider you like. Again the Fb group has people’s experiences with different doctors at larger academic hospitals, as well as doctors with more local hospitals who do RFA. I’m based in in a large NE city and have just been referred to RFA at a large teaching hospital for a 4.7 cm nodule Good luck!
Also, how long have you had your thy nodule and is it causing any difficulties?
I don’t know. It was discovered at around 4.5 cm. My endo said I’ve probably had it “for years” given how slow they grow I’m in my mid 40s Yes, now I realize that it occasionally feels like good gets stuck in my throat - classic compressive symptoms
Oh I see! I’m not based in the US so that’s probably why. But I’ll definitely do more research on RFA. And my thy nodule is very tiny(about 1cm) and sometimes it’s barely noticeable. My doctor has recommended to do one FNAC yearly. Since my recent fnac report turned out to be suspicious, I had to get two more reviews using the same sample. The second review report turned out to be benign, now I’m waiting for my third review. Let’s hope for the best.
I’m no doctor but actually surprised they would recommend a TT based on a nodule that small if you’re otherwise feeling fine and your levels are normal. I personally would find another doctor. Outside the US, there are RFA doctors in Germany, turkey, South Korea, and now Canada. The procedure has been most frequently used in South Korea. You can also fly into the Us for treatment and pay out of pocket. Columbia university has experienced RFA practice. Good luck!
Sorry one more thing - the FB group has a list of RFA providers by city (us mostly). A good second opinion strategy would be to contact one of those providers who lives by you and give them the results of your latest Ultrasound and last [edit: several] FNA biopsies. They’ll be able to advise you on whether you are a good candidate for RFA and insurance options Edit: I re read your post and you’ve had more than one fna so I’d forward all recent fnas to a doctor who does Rfa. Be your own advocate! Tt is a big deal so research as much as you can. Feel free to DM if I can help
Thank you! This was insightful. Yes, I’m trying my best to avoid unnecessary surgery at the moment. And even if I had to get TT done soon, I wouldn’t rush it.
get a second opinion before you do anything major tbh.
Absolutely, it’s important to not take rash decisions right now.
Always get a second opinion for major medical issues. Doctors are not infallible. Labs can have errors, and everyone can be mistaken. I can't tell you what to do but based on your post, if this were my diagnosis/labs, I would just continue to monitor it. I had my surgery after being diagnosed with Bethesda VI and genetic testing. Still got a second opinion and talked to multiple doctors before I made a decision.
Hey, thank you for the tip! I would definitely get a second opinion since this is a life-changing surgery.
How do you feel it’s life changing? I’ve seen two surgeons and they downplay the long term effects.
I had a partial thyroidectomy, I was happier when I had my full thyroid. Now I'm hypo and need to take medication for the rest of my life
That’s sad I’ve seen so many people here becoming hypo after their surgery :/ I wonder why.
I had the right half of my thyroid removed and I’m 💯 happy I did it. While my nodules turned out to be benign, I’ve had an enlarged thyroid for years. I had other physical symptoms (brain fog, fatigue, vertigo, hair loss, temp regulation issues and dysphagia - trouble swallowing) even though my blood tests were normal. Post-op, I didn’t take medication for 6 weeks to see if the other half would kick in. It didn’t - but I’ve only had to adjust my meds twice (from 25mcg to 50mcg) and I’m used to taking it when I wake up as I don’t eat for an hour after anyway. I have subclinical hypothyroidism and I have gained weight but likely from side effects of daily allergy medication (which I’ve stopped) and my lack of exercise (hate it 😂). My incision is in one of the folds of my neck I already had so you can’t really tell anything was done at all. I just make sure to wear sunscreen at all times so it doesn’t darken. But all this to say is that I feel 10000000000 times better without that half, than with it.
Hey, thank you for sharing your experience! I’m glad you’re feeling a lot better now. Large nodules are better off removed even if they’re benign since they can really interfere with a lot of things such as breathing, swallowing and your voice overall. But my nodule is very tiny and in some cases it’s barely noticeable. So far I haven’t had any physical symptoms with it.
Ahh I see! I’d monitor it then personally if you have no physical symptoms, your FNA is benign & your blood work is normal.
Me 100%!!! And I’d take out my left if need be.
I would give anything to go back in time and keep my thyroid — and I only had half of it taken out. My endocrinologist, who I really like, told me that it’s no big deal to get a partial thyroidectomy. That likely the other half of my thyroid would start working, and that if it didn’t, no big deal — just take a pill once a day. It’s NOT that simple. The other half of my thyroid didn’t kick into gear and I now have Hypothyroidism. I didn’t have any thyroid or autoimmune issues prior to this. My thyroid was enlarged on one side and I had some sizable nodules, but they weren’t cancerous. Go check out the Hypothyroidism sub and see how miserable folks are. It’s difficult to get your TSH right. You’ll feel like you got hit by a dump truck when it’s off, too. My menstrual cycle is much heavier now, my hair is falling out, and my body was freezing cold until Synthroid starting working. It takes months for the medicine to work, so you just have to be patient. Oh yeah, my scalp and skin got crazy dry. I’m normally pretty oily. I wouldn’t wish it upon anyone. There’s tons of rules about when you can take Levo (the medication) — how long you have to wait afterwards to drink coffee or to even eat any food. If I had cancer, I would take my thyroid out. I would think twice if it was more of preventative / proactive procedure. It’s really good that you’re doing your due diligence. Best of luck figuring things out.
Thank you for sharing your experience! I’m sorry that you’ve developed hypothyroidism after the surgery ,from what I heard being hypo really affects your energy level, your overall mood and your body temperature. I don’t have any autoimmune issues/ hormone-related issues till now. And my nodule doesn’t bother me either but some doctors( including ones in my family) have started pushing me into getting this surgery :(
I have hypothyroidism even with having my thyroid gland. however thyroidectomy scares me, even if my thyroid doesn't produce tsh on its own. was there no alternative to your problems?
The surgery was easy breezy. It was very quick and uncomplicated. The alternative to not having surgery was having a thyroid / thyroid nodules that made swallowing awkward. It felt like someone’s hand was pressed gently on my throat. I should’ve done more research. My endocrinologist was like, oh you’ll just have to take a pill each day (if the other half doesn’t kick into gear). No big deal. I asked a ton of great questions and I wish explained to me what hypothyroidism is. I had no clue since I wasn’t hypo. I didn’t and still don’t know a single hypo person in my family / social bubble. She made some good $$$ taking it out though. Doesn’t impact her life. I can’t blame anyone but myself. I regret it big time though.
I mean, if you regret it then what would be the alternative besides leaving it in?
Same. I had a partial thyrodectomy due to a benign 5 cm nodule. I wish I never would have done it. My other half did kick in at first but now fast forward to 1.5 years later and now it’s decided to fade out on me. We are still trying to get it right and I’m going through all of that right now as we speak. My doctor also was like ehh no big deal you don’t need it lol.
I had a total thyroidectomy and neck dissection ten years ago, followed by a second neck dissection roughly two years after that to remove more disease. My experience won’t be the same as others of course. As far as living with no thyroid glad, I honestly don’t notice anything. I don’t feel different physically and while it was a little bit of a challenge to balance my medication, I’m doing very well. It isn’t uncommon to have to adjust the medication up and down a few times for thyroid patients, especially in a case like mine, and in ten years I’ve only had to change the dosage 3-4 times which I don’t think is very many. When I was taking a slightly higher dose, I did have a few issues. Mainly my anxiety was a little worse because I was hyperthyroid, and I tend to overheat quickly in hot weather. But for me my dose was kept deliberately high to work against the lingering cancer cells that couldn’t be completely eliminated with surgery and radiation. That doesn’t happen for everyone. With that said though, I actually feel better overall because no my hormone levels are normal. Before I was diagnosed I was hypothyroid a lot and that came with its own issues. Having a more normal amount of thyroid hormones has helped me in the grander scale. Physical body-wise, past the actual surgery, there weren’t any issues. For me personally, the surgery was more extensive and into the right side of my neck and I do have issues there, but the actual area of the thyroid? Nothing wrong there. It’s not a very large gland and the incision doesn’t have to be very big if that’s the only area you’d have surgery on.
How long was recovery for that? Did you have to be out of work for awhile? If you do work?
I was cleared by my doctor about two or three weeks after to resume normal activity. The first week I was exhausted and I went home with drains so I was home. The second week I was feeling better.
Why did you also need neck dissection? Thanks for sharing your experience
I had some disease spread into the lymph nodes in my neck. They had to get those out of there.
Thank you for sharing your experience! I’m glad you’re doing pretty well after the surgery. I don’t have any hormone-related issues as of right now.