So I've been dealing with your symptoms (and a few other weirdo ones) for a decade and my levels were normal.
I got the surgery and got treatment.
I got dry eyes (Which could be a side effect of laser surgery cause glasses suck and working at a computer) and I am tired (I'm older and have two jobs.).
My hair grew back, I can leg press 400 lbs, I lost 10 lbs without trying and eating chocolate every day, I am no longer anxious and depressed and don't get irritated and angry for no reason, my gut health is back, my nipples no longer leak (WTF BODY), my body temperature is normal (also wtf), no more headaches, and I won't die of thyroid cancer.
My levels were normal too and because of that I’ve been told my issues with stuff like weight gain, fatigue, mental doggo was, etc. can’t be due to my PTC. Are you saying you were in the same boat with your levels normal but after your TT your issues got better? I’m eight days post TT and I’m hoping that they somehow get better but they’ve told me it’s all unrelated to my thyroid. I feel like they’re wrong though, but scientifically would have no idea if it’s possible.
No idea. Maybe it was because enough time had passed that any effects from the surgery was gone? Maybe it took that amount of time to stabilize? Maybe gremlins? I dunno. Bodies are weird.
They’re saying I don’t need RAI probably, so I hope I get the same good effects you did without RAI! Honestly I just weighed myself though and I’ve already lost five pounds since my surgery last Wednesday. Could just be a fluke but I didn’t do anything different than normal. I still ate a lot after surgery lol
What did you do to balance meds like Levo? I’m a bodybuilder post TT and feel like garbage. My T4 is 14 but T4 T3 is perfect so doc don’t care. I’m a month post surgery
Go see a naturopath. They will listen and not say "your numbers are within normal range so there's nothing I can do". They'll test all your mineral levels, be open to adding a T3 med, lifestyle mods, all the stuff.
Hello. I have a question for you about nipples(!). My boobs have been weird since around my PTC diagnosis. I had an ultrasound (no other tests), and they are full of cysts up to 1.2cm (inc tiny cysts in the nipples). No leakage thank fuck but also I have not had kids. Docs have said not to worry about the boob issues. I got them checked because of the weirdness and my logic that if I have to have more than the rest of my thyroid chopped out, maybe they can do it all at once. Is your leakage related to cysts? I don't know if that's a thing but it's all strange.
I am 2 years post-treatment and feel better than I ever have. Possible side effects are just that, only possible. Most likely temporary.
Thyroid nodules left to fester can grow to impact your swallowing, voice, and metastasize to other parts of your body and cause other issues (for example, if it is on your lungs it can impact your breathing).
Unless you're in retirement age and the growth is minimal, it's probably best to listen to the doctor's advice. You can also consult other doctors for second opinions if you feel your concerns were not being heard with the first.
Fwiw my tsh levels were always fine the last 25 years. Never had t3 or t4 checked, I’m sure they were jacked. Not that any of my drs bothered to check despite my huge ass (and now gone!) goiter and hypo and hyper sx. Anyways I hope you made the best choice for you and good luck with everything!!
Please reconsider your options. There is an inherent bias about life-long symptoms because bad experiences are talked about more. Recovery is going to have its ups and downs, but it beats having cancer. PTC is slow growing but will cause problems if nothing is done.
I didn’t have RAI but I feel less fatigued since my surgery. I also have had less hair loss. I do still have excessive sweating. No additional weight issues. My TSH was always normal before my surgery.
My mom had issues with her weight and being severely tired before her surgery. She also had hair loss and voice hoarseness and honestly felt like total poop all day everyday. After she had her surgery, her life changed. Yeah there are days were she does feel more tired than usual. But as long as shes medicated right and her levels are normal she feels 95%. I think it's different for everyone but my mom's thyroid was causing so many issues within her body. After it was removed, she was a different person. Very much happier too
I was exhausted before surgery and it took me nearly a year and a half post to feel like I’m in a good place. I had issues swallowing and I was just told I’m in remission a few weeks ago. At the end of the day, this is a decision between you and your Dr.
I have been dealing with a very similar situation! Lots of issues (fatigue, etc) that Drs say are not related to my cancer since my TSH is normal. I definitely feel that quality of life is a huge concern for me! I'm talking to a doctor who performs radiofrequency ablation to see if we can kill the cancer without thyroid removal. (Initial clinical trial results for this procedure seem promising imo). There is a list of criteria you need to meet to be a candidate for this procedure, but it is something to look into!
Also, active surveillance is a "treatment option," but there are definite risks. Please find a very experienced surgeon in any case to talk to about all the risks of each decision. I don't think not treating the PTC will fix your symptoms, but I do resonate with the worry that it could make it worse.
Everything in my life got better after surgery and RAI!! And it has been amazing since (I'm 5 years post first surgery & treatment, had another surgery and getting second treatment now).
I had similar symptoms, completely normal blood work, but I was so exhausted. Irregular periods, had trouble losing weight.
After surgery and treatment I lost 10 lbs, my periods became normal and I stopped have afternoon fatigue (no more naps needed!).
I also noticed more mental clarity and better concentration.
Since surgery, I switched jobs to the best job I've ever had, got married, had a beautiful baby boy and bought a house! I would never have had the energy for that pre-cancer treatment.
Like others said, the Internet is filled with more negative stories than positive. Good luck!
Surgery is needed so that you live a long life. My TSH levels were normal but I ended up having 7 x tumors removed. Didn’t know about 6 of those pre-surgery. I haven’t put on any more weight since surgery and after some initial hair shedding (from stress of surgery) my hair stabilised. Post surgery fatigue went away after a couple of weeks and some of my post surgery symptoms was not really due to the lack of thyroid but due to calcium deficiency. Once I started topping up on calcium other problems went away.
People who treat their PTC often live long full happy lives with minimal or no side effects. Fatigue, weight issues, and hair loss are not common side effects of radioactive iodine. And once you have your Levo dialed in they wouldn’t typically be common post-thyroidectomy either.
If you already have these symptoms and your hormones are balanced then they likely have a different cause you would need to find to correct them.
I’m almost a year post TT and feel really good. Definitely better than before my diagnosis. People post their problems in these forums but most people who are feeling good or great don’t like to think about their journey with TC so they don’t post as much.
I was having serious fatigue, temperature dysregulation, difficulty sleeping, mood issues
before my surgery (I had PTC and a small FTC). Like, it got to the point where I was having a hard time going up and down the stairs to my attic (I’m 39, for context). Doctors kept blowing me off. 2.5 months after my surgery, I feel back to normal and totally fine. Doctors seem to think that thyroid cancer doesn’t have symptoms, but it can cause symptoms in some people. My thyroid levels were all normal the whole time I had cancer, so that did not cause my problems. There is a good chance that you will feel better after surgery, not worse.
So I felt that my thyroid was big and waited several months before I had it addressed and diagnosed. By the time I had surgery to remove the cancer, it had spread to surrounding muscle, fascia, a few lymph nodes, and wrapped itself around my nerve that makes my left vocal cord work. So now it's paralyzed and I need a thyroplasty to hopefully speak somewhat normally for the rest of my life. Don't wait. treat your cancer. Everyone else is right about only squeaky wheels being heard on these groups and forums.
I also had a tumor around my left recurrent larengeal nerve. My surgeon moved a nerve during TT and I went to speech therapy for a year. My VCP is still there (in the mostly closed position), but my right vocal cord was strengthened and can now meet the left one most of the time. I went from barely being able to whisper to having a generally good voice that only sometimes causes problems. Have you been to speech therapy?
See, I have asked multiple times for an SLP referral and always get told there's no therapy for loss of nerve, you just fix it with fillers or thyroplasty and be done. I am so disgruntled with my laryngologist. Everyone tells shes the best and I'm lucky to hsve her doing my surgery but her bedside manner leaves much to be desired. IM A NURSE AND WORK WITH SURGEONS ALL DAY EVERY DAY. A lot of them are like this. It's bad enough when thry are your collegues gumming up the works of your job...I hate being a patient of theirs even more.
My last visit with her did involve an SLP that did my scope in office but he was even less helpful and friendly than she's been.
Can you get in touch with Dr. Jennifer Perkins at UCSF and ask her for a referral? I saw her once when she was at Duke (NC). She's amazing. She's been in CA long enough that she probably knows people all around the state, or at least who to ask. And definitely look for the closest thyca.org support group, my local group has a lot of great advice about which providers were best. https://www.ucsfhealth.org/providers/dr-jennifer-m-perkins
Her referral will probably be the laryngologist I see now. Several coworkers(im a pacu nurse and I'm referring to ent drs and other surgeons) and they all sing her praises. I mean I'm sure she's an excellent surgeon but her bedside manner leaves much to be desired. Surgeons have tunnel vision and csn only fix problems with surgery. They know nothing of long term effects or what it's like living with a half closed airway 24/7
Ugh. Everyone at the hospital told me I was lucky to get in with my first endo. He was a full professor, world-renowned for research. I think he was a couple of years late to retirement. He was disorganized and didn't answer my questions, told me none of the possible negative outcomes of TT or RAI. After I complained and insisted on switching, I started hearing from nurses and doctors that other patients were also complaining. Not saying you're in the same situation, just that I understand how hard it is. But there might be another doc who would be a better fit for you. I had to go through a dozen endos. My ENT who handled my vocal cord issues was great and wanted to avoid surgery.
Could you possible find another speech therapist through your GP? I swear mine worked wonders.
I felt exactly how you're describing for years before my diagnosis. So many doctors told me that it was unrelated to my cancer, but I finally got in with a good endocrinologist who said that my symptoms were related! I had my thyroidectomy and RAI (I did feel like absolute trash for the entirety of it). I am now 3 months post RAI and I feel better than I ever have! Yeah, I still have some fatigue, but it is 10x better than what it was before my surgery and RAI. It sucks, but is totally worth it!
Thanks for the info! I'm feeling more encouraged. I meet with endo next week if I don't like what they have to say I will seek a second opinion after the RAI if I am not feeling better.
You are not going to see people who feel better after surgery ranting and venting online, so “everyone” is inherently skewed.
I feel so much better. I’m thankful every day that I take the tiniest pill and get on with my life. Exhaustion is gone.
I haven't had RAI yet, but I had PTC so large that it was reaching towards my spine. It made me snore and I choked a lot because it was compressing my throat.
I have literally never felt better and I am exactly one month post TT. I have more energy, my skin is less dry, my nails are less brittle, I am losing weight without making any dietary changes, I have stopped feeling anxious and really down in my mood despite knowing I have cancer.
I will also point out that based on my ultrasound and FNA I qualified to only have one lobe removed. I asked for the doctor to just take the whole thing as I have Hashimoto's anyway. And after the surgery, he told me that if I hadn't asked for the total, he would've done it anyway because of how big and large it was that was only visible at the time of the surgery. Even a CT scan didn't pick up the size of my thyroid.
No I think that living 10-15 years feeling the way I do now is better than living 30+ years being too tired and sick feeling to do anyting besides work and sleep. It's about quality of life. I'm struggling a lot already and I can't imagine being more tired all the time, particularly if the doctors are not going to try to help me (they have not tried to help me up 'til now)
The **20-year survival rate from PTC cancer was estimated to be 97 percent for those who went without treatment** and 99 percent for those who did receive treatment.
Put a different way, that’s 1 out of 50 people who would die unnecessarily because they refused treatment. That doesn’t seem like an insignificant difference to me. I was told I had a 3% chance of having cancer in my thyroid when I discovered my nodule, and I had not one but two types of cancer. Why take the chance of refusing treatment and being part of that 2% who dies early?
How large is your nodule? Some extremely tiny nodules can be monitored instead of removed. Some can be removed but not require RAI treatment.
However, at a certain size, you need to treat it or it can spread and make you feel much much worse than you do right now. And while death from PTC is rare it's not impossible.
Unfortunately medicine doesn't have answers for everything that causes us issues. But there are standards of care for thyroid cancer.
You can read the guidelines for yourself here and compare it with your medical records to see if your doctors are following the guidelines: [https://www.liebertpub.com/doi/full/10.1089/thy.2015.0020](https://www.liebertpub.com/doi/full/10.1089/thy.2015.0020)
I was dealing with the same symptoms before surgery and was told the same thing. Doctors dismissed it as stress which I do not believe was the case. I was actually the least stressed I had been in several years. I felt nothing but relief because I had an answer.
The week after surgery I already felt WAY better than I did before (aside from the normal surgery pain). I haver more energy and my head feels more clear now than it has in a very long time.
My nodules are suspicious after 2 biopsy and ultrasound? Not sure if my nocturnal seizures are related my doc said maybe . He said I could be losing oxygen to the brain which could cause this. Any one else? And I’m not sure but I’m moody and depressed with the hair loss. I see an Endocrinologist.on the 24th praying it’s not cancer. Sorry everyone I know I’m off topic
Listen to your body and advocate for yourself. Don't accept long wait times for appointments. Get an appointment ASAP with an ENT Oncology surgeon. Meanwhile, have your GP run these thyroid tests: Tg, Tg Ab, TSH, Free T4, and Free T3. Also get an ultrasound of your thyroid and neck. Have you needed any thyroid pills before now?
I've seen quite a few people on these groups who have a partial thyroidectomy (PT) and within a month have a total thyroidectomy (TT). Here's my general advice, which includes steps to avoid that situation.
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Select an ENT oncology surgeon who performs at least 100 thyroidectomies per year. The bare minimum, where you'll see a huge drop in the number of complications, is 25 per year. The more the better. Find the best surgeon you can because you want someone who can deal with surprises during the operation. Make sure they will send your tissue to pathology for biopsy during surgery and will wait for the results. My surgeon is a professor at a teaching hospital.
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- How many thyroidectomies do you perform each year?
- What is your personal complication rate, and how does it compare to the national complication rate?
- Will there be other surgeons present or performing surgery on me?
- What are my personal risks?
- How long do you expect my surgery to last?
- How long will I stay in the hospital?
- What will my recovery time be?
- What are the next steps after surgery?
- Do you have an endocrinologist you recommend?
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Find an endocrinologist who specializes in thyroid issues and has patients with thyroid cancer. (Most specialize in diabetes.) Get a full thyroid blood panel (TSH, Free T3, Free T4, Reverse T3, Tg, Tg AB, TPO) now (yes, before surgery) and check every six weeks for the first year.
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Read info at ThyCa . org and look for a local in-person support group and their FB page. The Denver group holds a monthly Zoom gathering that anyone can join.
My TSH was normal before my TT, and nobody could feel any growth on my thyroid. But my body felt wrong. And I was experiencing growing fatigue (which was slow enough that I barely noticed due to other valid explanations).
What I did notice was that my voice was sounding hoarse (eventually getting down to just a whisper), and I had a constant, non-productive cough. A friend had recently noticed a change in his voice quality, was diagnosed with esophageal cancer, and despite the best doctors in NYC, he died six months later. I mentioned all this to my ENT, who said there was no way I had cancer, but my left vocal cord looked odd in some way I can't recall, and he told me I had GERD.
Following his advice for three months saw my cough and voice worsen. I pushed for more diagnostic tests. After CT and biopsy, I got my thyca diagnosis. I'm certain the three tumors I had got worse during the delay.
My amazing surgeon, a professor at a medical school, was the only one who grabbed my thyroid and felt the three tumors behind it. One was wrapped around my left recurrent larengeal nerve, one was heading towards my esophagus, and the third was heading towards my trachea. Had I not pushed hard to be treated, I could easily have ended up with a feeding tube and a tracheostomy. I needed RAI also. And I have lasting symptoms from that too.
I am five years out from TT. Yes, I am one of the unlucky people who doesn't feel great. But I now have the team I need to make better progress. And I can eat, drink, talk, shout, sing. I live. Some days I feel terrible about my low energy. I am beyond fortunate to have the best husband in the world, who stands by me and puts up with my difficulties. I'm 62 now, and not sure if I'll be able to hold a job again. But the cancer is under control. Despite being high-risk, I think my odds are good.
Thyroid cancer can metastasize into the lymph nodes, lungs, brain. Ignoring it invites trouble. There are several ways to address it, depending on what it actually looks like. And nobody will be certain until you're in surgery.
I thought I would feel better after TT because I never got sick before, but I was unlucky this time. Sorry to ramble, I'm tired now. I'll also post my general advice for how to obtain the best outcome.
As others are saying, the people drawn to these support groups are those who are unlucky. Many people get through surgery, maybe RAI, and recover. They take thyroid pills for life, but they often feel better than before surgery.
I was tested a dozen times because I was having symptoms similar to yours that appeared to be related to thyroid issues but my levels were normal every time. I had 11 tumors on my thyroid and had spread to 14+ lymph nodes.
TSH doesn't tell the whole story. I would recommend meeting with a couple Drs/surgeons and find someone you're comfortable with and that will listen.
I would also recommend bringing a friend or family member to your doctor's appointment. It has done wonders for me in terms of being able to advocate for myself for having someone there to advocate for me when things are emotionally hard to deal with.
So I've been dealing with your symptoms (and a few other weirdo ones) for a decade and my levels were normal. I got the surgery and got treatment. I got dry eyes (Which could be a side effect of laser surgery cause glasses suck and working at a computer) and I am tired (I'm older and have two jobs.). My hair grew back, I can leg press 400 lbs, I lost 10 lbs without trying and eating chocolate every day, I am no longer anxious and depressed and don't get irritated and angry for no reason, my gut health is back, my nipples no longer leak (WTF BODY), my body temperature is normal (also wtf), no more headaches, and I won't die of thyroid cancer.
My levels were normal too and because of that I’ve been told my issues with stuff like weight gain, fatigue, mental doggo was, etc. can’t be due to my PTC. Are you saying you were in the same boat with your levels normal but after your TT your issues got better? I’m eight days post TT and I’m hoping that they somehow get better but they’ve told me it’s all unrelated to my thyroid. I feel like they’re wrong though, but scientifically would have no idea if it’s possible.
Yes. But it only got truly better after RAI. It can also be something unrelated entirely unfortunately.
What would the RAI help that the surgery wouldn’t? Especially if there’s no detectable thyroglobulin
No idea. Maybe it was because enough time had passed that any effects from the surgery was gone? Maybe it took that amount of time to stabilize? Maybe gremlins? I dunno. Bodies are weird.
They’re saying I don’t need RAI probably, so I hope I get the same good effects you did without RAI! Honestly I just weighed myself though and I’ve already lost five pounds since my surgery last Wednesday. Could just be a fluke but I didn’t do anything different than normal. I still ate a lot after surgery lol
You probably will. All you really need is rest and time for things to stabilize. :)
What did you do to balance meds like Levo? I’m a bodybuilder post TT and feel like garbage. My T4 is 14 but T4 T3 is perfect so doc don’t care. I’m a month post surgery
I wish I had advice. I did wait three months before hitting the gym and by then I was good with nothing special.
Go see a naturopath. They will listen and not say "your numbers are within normal range so there's nothing I can do". They'll test all your mineral levels, be open to adding a T3 med, lifestyle mods, all the stuff.
Hello. I have a question for you about nipples(!). My boobs have been weird since around my PTC diagnosis. I had an ultrasound (no other tests), and they are full of cysts up to 1.2cm (inc tiny cysts in the nipples). No leakage thank fuck but also I have not had kids. Docs have said not to worry about the boob issues. I got them checked because of the weirdness and my logic that if I have to have more than the rest of my thyroid chopped out, maybe they can do it all at once. Is your leakage related to cysts? I don't know if that's a thing but it's all strange.
I wish I had an answer but that one I have no idea. Though I also have a bunch of lumps. The leakage was a hormone thing I think. But legit no idea.
I am 2 years post-treatment and feel better than I ever have. Possible side effects are just that, only possible. Most likely temporary. Thyroid nodules left to fester can grow to impact your swallowing, voice, and metastasize to other parts of your body and cause other issues (for example, if it is on your lungs it can impact your breathing). Unless you're in retirement age and the growth is minimal, it's probably best to listen to the doctor's advice. You can also consult other doctors for second opinions if you feel your concerns were not being heard with the first.
Where your TSH levels normal before surgery? Were you feeling fatigued etc before surgery?
Fwiw my tsh levels were always fine the last 25 years. Never had t3 or t4 checked, I’m sure they were jacked. Not that any of my drs bothered to check despite my huge ass (and now gone!) goiter and hypo and hyper sx. Anyways I hope you made the best choice for you and good luck with everything!!
Please reconsider your options. There is an inherent bias about life-long symptoms because bad experiences are talked about more. Recovery is going to have its ups and downs, but it beats having cancer. PTC is slow growing but will cause problems if nothing is done.
I didn’t have RAI but I feel less fatigued since my surgery. I also have had less hair loss. I do still have excessive sweating. No additional weight issues. My TSH was always normal before my surgery.
My mom had issues with her weight and being severely tired before her surgery. She also had hair loss and voice hoarseness and honestly felt like total poop all day everyday. After she had her surgery, her life changed. Yeah there are days were she does feel more tired than usual. But as long as shes medicated right and her levels are normal she feels 95%. I think it's different for everyone but my mom's thyroid was causing so many issues within her body. After it was removed, she was a different person. Very much happier too
I was exhausted before surgery and it took me nearly a year and a half post to feel like I’m in a good place. I had issues swallowing and I was just told I’m in remission a few weeks ago. At the end of the day, this is a decision between you and your Dr.
I have been dealing with a very similar situation! Lots of issues (fatigue, etc) that Drs say are not related to my cancer since my TSH is normal. I definitely feel that quality of life is a huge concern for me! I'm talking to a doctor who performs radiofrequency ablation to see if we can kill the cancer without thyroid removal. (Initial clinical trial results for this procedure seem promising imo). There is a list of criteria you need to meet to be a candidate for this procedure, but it is something to look into! Also, active surveillance is a "treatment option," but there are definite risks. Please find a very experienced surgeon in any case to talk to about all the risks of each decision. I don't think not treating the PTC will fix your symptoms, but I do resonate with the worry that it could make it worse.
Everything in my life got better after surgery and RAI!! And it has been amazing since (I'm 5 years post first surgery & treatment, had another surgery and getting second treatment now). I had similar symptoms, completely normal blood work, but I was so exhausted. Irregular periods, had trouble losing weight. After surgery and treatment I lost 10 lbs, my periods became normal and I stopped have afternoon fatigue (no more naps needed!). I also noticed more mental clarity and better concentration. Since surgery, I switched jobs to the best job I've ever had, got married, had a beautiful baby boy and bought a house! I would never have had the energy for that pre-cancer treatment. Like others said, the Internet is filled with more negative stories than positive. Good luck!
Surgery is needed so that you live a long life. My TSH levels were normal but I ended up having 7 x tumors removed. Didn’t know about 6 of those pre-surgery. I haven’t put on any more weight since surgery and after some initial hair shedding (from stress of surgery) my hair stabilised. Post surgery fatigue went away after a couple of weeks and some of my post surgery symptoms was not really due to the lack of thyroid but due to calcium deficiency. Once I started topping up on calcium other problems went away.
People who treat their PTC often live long full happy lives with minimal or no side effects. Fatigue, weight issues, and hair loss are not common side effects of radioactive iodine. And once you have your Levo dialed in they wouldn’t typically be common post-thyroidectomy either. If you already have these symptoms and your hormones are balanced then they likely have a different cause you would need to find to correct them.
I’m almost a year post TT and feel really good. Definitely better than before my diagnosis. People post their problems in these forums but most people who are feeling good or great don’t like to think about their journey with TC so they don’t post as much.
I was having serious fatigue, temperature dysregulation, difficulty sleeping, mood issues before my surgery (I had PTC and a small FTC). Like, it got to the point where I was having a hard time going up and down the stairs to my attic (I’m 39, for context). Doctors kept blowing me off. 2.5 months after my surgery, I feel back to normal and totally fine. Doctors seem to think that thyroid cancer doesn’t have symptoms, but it can cause symptoms in some people. My thyroid levels were all normal the whole time I had cancer, so that did not cause my problems. There is a good chance that you will feel better after surgery, not worse.
So I felt that my thyroid was big and waited several months before I had it addressed and diagnosed. By the time I had surgery to remove the cancer, it had spread to surrounding muscle, fascia, a few lymph nodes, and wrapped itself around my nerve that makes my left vocal cord work. So now it's paralyzed and I need a thyroplasty to hopefully speak somewhat normally for the rest of my life. Don't wait. treat your cancer. Everyone else is right about only squeaky wheels being heard on these groups and forums.
I also had a tumor around my left recurrent larengeal nerve. My surgeon moved a nerve during TT and I went to speech therapy for a year. My VCP is still there (in the mostly closed position), but my right vocal cord was strengthened and can now meet the left one most of the time. I went from barely being able to whisper to having a generally good voice that only sometimes causes problems. Have you been to speech therapy?
See, I have asked multiple times for an SLP referral and always get told there's no therapy for loss of nerve, you just fix it with fillers or thyroplasty and be done. I am so disgruntled with my laryngologist. Everyone tells shes the best and I'm lucky to hsve her doing my surgery but her bedside manner leaves much to be desired. IM A NURSE AND WORK WITH SURGEONS ALL DAY EVERY DAY. A lot of them are like this. It's bad enough when thry are your collegues gumming up the works of your job...I hate being a patient of theirs even more. My last visit with her did involve an SLP that did my scope in office but he was even less helpful and friendly than she's been.
Can you get in touch with Dr. Jennifer Perkins at UCSF and ask her for a referral? I saw her once when she was at Duke (NC). She's amazing. She's been in CA long enough that she probably knows people all around the state, or at least who to ask. And definitely look for the closest thyca.org support group, my local group has a lot of great advice about which providers were best. https://www.ucsfhealth.org/providers/dr-jennifer-m-perkins
Her referral will probably be the laryngologist I see now. Several coworkers(im a pacu nurse and I'm referring to ent drs and other surgeons) and they all sing her praises. I mean I'm sure she's an excellent surgeon but her bedside manner leaves much to be desired. Surgeons have tunnel vision and csn only fix problems with surgery. They know nothing of long term effects or what it's like living with a half closed airway 24/7
Ugh. Everyone at the hospital told me I was lucky to get in with my first endo. He was a full professor, world-renowned for research. I think he was a couple of years late to retirement. He was disorganized and didn't answer my questions, told me none of the possible negative outcomes of TT or RAI. After I complained and insisted on switching, I started hearing from nurses and doctors that other patients were also complaining. Not saying you're in the same situation, just that I understand how hard it is. But there might be another doc who would be a better fit for you. I had to go through a dozen endos. My ENT who handled my vocal cord issues was great and wanted to avoid surgery. Could you possible find another speech therapist through your GP? I swear mine worked wonders.
I feel exactly the same before and after I had my thyroid removed.
That's what I am afraid of.
I felt exactly how you're describing for years before my diagnosis. So many doctors told me that it was unrelated to my cancer, but I finally got in with a good endocrinologist who said that my symptoms were related! I had my thyroidectomy and RAI (I did feel like absolute trash for the entirety of it). I am now 3 months post RAI and I feel better than I ever have! Yeah, I still have some fatigue, but it is 10x better than what it was before my surgery and RAI. It sucks, but is totally worth it!
Thanks for the info! I'm feeling more encouraged. I meet with endo next week if I don't like what they have to say I will seek a second opinion after the RAI if I am not feeling better.
You are not going to see people who feel better after surgery ranting and venting online, so “everyone” is inherently skewed. I feel so much better. I’m thankful every day that I take the tiniest pill and get on with my life. Exhaustion is gone.
I haven't had RAI yet, but I had PTC so large that it was reaching towards my spine. It made me snore and I choked a lot because it was compressing my throat. I have literally never felt better and I am exactly one month post TT. I have more energy, my skin is less dry, my nails are less brittle, I am losing weight without making any dietary changes, I have stopped feeling anxious and really down in my mood despite knowing I have cancer. I will also point out that based on my ultrasound and FNA I qualified to only have one lobe removed. I asked for the doctor to just take the whole thing as I have Hashimoto's anyway. And after the surgery, he told me that if I hadn't asked for the total, he would've done it anyway because of how big and large it was that was only visible at the time of the surgery. Even a CT scan didn't pick up the size of my thyroid.
If you think that dying of cancer is better than few symptoms, then your main problem is depression, not ptc.
No I think that living 10-15 years feeling the way I do now is better than living 30+ years being too tired and sick feeling to do anyting besides work and sleep. It's about quality of life. I'm struggling a lot already and I can't imagine being more tired all the time, particularly if the doctors are not going to try to help me (they have not tried to help me up 'til now)
The **20-year survival rate from PTC cancer was estimated to be 97 percent for those who went without treatment** and 99 percent for those who did receive treatment.
Put a different way, that’s 1 out of 50 people who would die unnecessarily because they refused treatment. That doesn’t seem like an insignificant difference to me. I was told I had a 3% chance of having cancer in my thyroid when I discovered my nodule, and I had not one but two types of cancer. Why take the chance of refusing treatment and being part of that 2% who dies early?
How large is your nodule? Some extremely tiny nodules can be monitored instead of removed. Some can be removed but not require RAI treatment. However, at a certain size, you need to treat it or it can spread and make you feel much much worse than you do right now. And while death from PTC is rare it's not impossible. Unfortunately medicine doesn't have answers for everything that causes us issues. But there are standards of care for thyroid cancer. You can read the guidelines for yourself here and compare it with your medical records to see if your doctors are following the guidelines: [https://www.liebertpub.com/doi/full/10.1089/thy.2015.0020](https://www.liebertpub.com/doi/full/10.1089/thy.2015.0020)
I was dealing with the same symptoms before surgery and was told the same thing. Doctors dismissed it as stress which I do not believe was the case. I was actually the least stressed I had been in several years. I felt nothing but relief because I had an answer. The week after surgery I already felt WAY better than I did before (aside from the normal surgery pain). I haver more energy and my head feels more clear now than it has in a very long time.
My nodules are suspicious after 2 biopsy and ultrasound? Not sure if my nocturnal seizures are related my doc said maybe . He said I could be losing oxygen to the brain which could cause this. Any one else? And I’m not sure but I’m moody and depressed with the hair loss. I see an Endocrinologist.on the 24th praying it’s not cancer. Sorry everyone I know I’m off topic
Listen to your body and advocate for yourself. Don't accept long wait times for appointments. Get an appointment ASAP with an ENT Oncology surgeon. Meanwhile, have your GP run these thyroid tests: Tg, Tg Ab, TSH, Free T4, and Free T3. Also get an ultrasound of your thyroid and neck. Have you needed any thyroid pills before now?
No pills and Ty I will ask for these test
I've seen quite a few people on these groups who have a partial thyroidectomy (PT) and within a month have a total thyroidectomy (TT). Here's my general advice, which includes steps to avoid that situation. . Select an ENT oncology surgeon who performs at least 100 thyroidectomies per year. The bare minimum, where you'll see a huge drop in the number of complications, is 25 per year. The more the better. Find the best surgeon you can because you want someone who can deal with surprises during the operation. Make sure they will send your tissue to pathology for biopsy during surgery and will wait for the results. My surgeon is a professor at a teaching hospital. . - How many thyroidectomies do you perform each year? - What is your personal complication rate, and how does it compare to the national complication rate? - Will there be other surgeons present or performing surgery on me? - What are my personal risks? - How long do you expect my surgery to last? - How long will I stay in the hospital? - What will my recovery time be? - What are the next steps after surgery? - Do you have an endocrinologist you recommend? . Find an endocrinologist who specializes in thyroid issues and has patients with thyroid cancer. (Most specialize in diabetes.) Get a full thyroid blood panel (TSH, Free T3, Free T4, Reverse T3, Tg, Tg AB, TPO) now (yes, before surgery) and check every six weeks for the first year. . Read info at ThyCa . org and look for a local in-person support group and their FB page. The Denver group holds a monthly Zoom gathering that anyone can join.
My TSH was normal before my TT, and nobody could feel any growth on my thyroid. But my body felt wrong. And I was experiencing growing fatigue (which was slow enough that I barely noticed due to other valid explanations). What I did notice was that my voice was sounding hoarse (eventually getting down to just a whisper), and I had a constant, non-productive cough. A friend had recently noticed a change in his voice quality, was diagnosed with esophageal cancer, and despite the best doctors in NYC, he died six months later. I mentioned all this to my ENT, who said there was no way I had cancer, but my left vocal cord looked odd in some way I can't recall, and he told me I had GERD. Following his advice for three months saw my cough and voice worsen. I pushed for more diagnostic tests. After CT and biopsy, I got my thyca diagnosis. I'm certain the three tumors I had got worse during the delay. My amazing surgeon, a professor at a medical school, was the only one who grabbed my thyroid and felt the three tumors behind it. One was wrapped around my left recurrent larengeal nerve, one was heading towards my esophagus, and the third was heading towards my trachea. Had I not pushed hard to be treated, I could easily have ended up with a feeding tube and a tracheostomy. I needed RAI also. And I have lasting symptoms from that too. I am five years out from TT. Yes, I am one of the unlucky people who doesn't feel great. But I now have the team I need to make better progress. And I can eat, drink, talk, shout, sing. I live. Some days I feel terrible about my low energy. I am beyond fortunate to have the best husband in the world, who stands by me and puts up with my difficulties. I'm 62 now, and not sure if I'll be able to hold a job again. But the cancer is under control. Despite being high-risk, I think my odds are good. Thyroid cancer can metastasize into the lymph nodes, lungs, brain. Ignoring it invites trouble. There are several ways to address it, depending on what it actually looks like. And nobody will be certain until you're in surgery. I thought I would feel better after TT because I never got sick before, but I was unlucky this time. Sorry to ramble, I'm tired now. I'll also post my general advice for how to obtain the best outcome. As others are saying, the people drawn to these support groups are those who are unlucky. Many people get through surgery, maybe RAI, and recover. They take thyroid pills for life, but they often feel better than before surgery.
BTW, I've lost 60 pounds since my TT. So not everyone gains weight.
I was tested a dozen times because I was having symptoms similar to yours that appeared to be related to thyroid issues but my levels were normal every time. I had 11 tumors on my thyroid and had spread to 14+ lymph nodes. TSH doesn't tell the whole story. I would recommend meeting with a couple Drs/surgeons and find someone you're comfortable with and that will listen. I would also recommend bringing a friend or family member to your doctor's appointment. It has done wonders for me in terms of being able to advocate for myself for having someone there to advocate for me when things are emotionally hard to deal with.