Aa
Am i making a huge mistake?
I have multiple nodules on my thyroid. One is bigger than the thyroid itself. had biopsy done several years ago and ultrasounds maybe 2x a year. stable but getting slightly larger each year. Was having surgery 4 years ago but backed out after family and friends told horror stories and how my life would be destroyed. I now have surgery again in 4 days, but co workers and family are again hammering me telling me not to have it removed. My life will be horrible afterwards and all these things that I will suffer from. I am sooo close to calling and cancelling again. please help
Hello
I too am facing the same dilemma.. I am scheduled for Thyroidectomy in 10 days for Nontoxic multinodular goiter of 18 years . Had several FNA’s with one indeterminate result last year that was normal with 6 month recheck.
Now I have compression symptoms.
I choke on foods occasionally and I can’t sleep on my back as my goiter strangles me. I have so many cysts and nodules, and I fear eventually they may become cancerous.
I too am very disturbed over the nightmarish experiences of others as well as the advice from friends not to proceed with thyroidectomy.
I am neither hypo nor hyperthyroid. I am horrified of gaining weight or loosing my hair or being miserable for the rest of my life.
You have to make up your own mind and do what you think is best for you.
I wish you the best.
I too am facing the same dilemma.. I am scheduled for Thyroidectomy in 10 days for Nontoxic multinodular goiter of 18 years . Had several FNA’s with one indeterminate result last year that was normal with 6 month recheck.
Now I have compression symptoms.
I choke on foods occasionally and I can’t sleep on my back as my goiter strangles me. I have so many cysts and nodules, and I fear eventually they may become cancerous.
I too am very disturbed over the nightmarish experiences of others as well as the advice from friends not to proceed with thyroidectomy.
I am neither hypo nor hyperthyroid. I am horrified of gaining weight or loosing my hair or being miserable for the rest of my life.
You have to make up your own mind and do what you think is best for you.
I wish you the best.
Hi
Sorry to hear you have to deal with anything related to thyroid let alone Thyroidectomy.
I had thyroidectomy 2.5yrs ago (cancer)and have experienced all those nightmares you read about weight gain, joint and tendonitis from feet to my hips , depression over the weight gain and it's true if you watch what you eat exercise and our properly medicated you probably will be ok. I wasn't so lucky I exercised through excruciating pains and still I steady gained weight I believe I was improperly medicated for the first year and half which caused me to gain the weight and discovered that my pains are from Psoriatic Arthritis Flare brought on my Rhemy believes from lack of hormones and removal of immunosuppressive drug before thyroidectomy (I didn't know any better) and inspite of reducing my calories and exercising through PSA the body pains forced me to be house bound, I'm doing a little better now moving wise, weight wise after adding T3 (cytomel) to my T4 (synthyroid) I finally stopped gaining weight and haven't lost weight either.
Depending on where you go to read about others thyroid stories depends on how they have faired. I find more often that people with troubles with weight after thyroid removal tend to have another autoimmune condition or menopause happening at the same time, thats just my opinion and Im sure other will disagree.
I wished I read more nightmare stories about thyroidectomy I really couldn't find any and that's probably because I didn't understand thyroidectomy in order to get to the right people. I think you need to do right is right for you and your health and some people online will have sunshine and butterfly stories about thyroidectomy and some will be all doom and gloom.
I wish you luck and no worries....
Sorry to hear you have to deal with anything related to thyroid let alone Thyroidectomy.
I had thyroidectomy 2.5yrs ago (cancer)and have experienced all those nightmares you read about weight gain, joint and tendonitis from feet to my hips , depression over the weight gain and it's true if you watch what you eat exercise and our properly medicated you probably will be ok. I wasn't so lucky I exercised through excruciating pains and still I steady gained weight I believe I was improperly medicated for the first year and half which caused me to gain the weight and discovered that my pains are from Psoriatic Arthritis Flare brought on my Rhemy believes from lack of hormones and removal of immunosuppressive drug before thyroidectomy (I didn't know any better) and inspite of reducing my calories and exercising through PSA the body pains forced me to be house bound, I'm doing a little better now moving wise, weight wise after adding T3 (cytomel) to my T4 (synthyroid) I finally stopped gaining weight and haven't lost weight either.
Depending on where you go to read about others thyroid stories depends on how they have faired. I find more often that people with troubles with weight after thyroid removal tend to have another autoimmune condition or menopause happening at the same time, thats just my opinion and Im sure other will disagree.
I wished I read more nightmare stories about thyroidectomy I really couldn't find any and that's probably because I didn't understand thyroidectomy in order to get to the right people. I think you need to do right is right for you and your health and some people online will have sunshine and butterfly stories about thyroidectomy and some will be all doom and gloom.
I wish you luck and no worries....
I'm sorry you have to deal with this decision - I can empathize with your frustration. As for the symptoms of hypothyroidism, honestly I can't understand how other people can describe how you might feel if they aren't actually dealing with them themselves.
I've been dealing with subclinical hypo symptoms for probably 20 years, but was only diagnosed with a thyroid problem last year. Most of my subclinical hypothyroidism symptoms were livable and I really didn't know it was thyroid related (even when I gained 30 pounds while running 30-50 miles a week, I just assumed I was eating too much food). After my surgery, I was more hypo (my TSH peaked around 16 in October 2018). The major symptoms for me were extreme tiredness, especially in the afternoon, as well as monthly hormone cycling issues which had been going on for years from being subclinical hypo, but got worse (causing iron loss and sometimes extreme moodiness), and an inability to stay focused on tasks, which can be very frustrating.
As for excessive weight gain -after the surgery, I was paying attention to how much I was eating, trying to eat healthy, and I put on about 6-7 pounds after the total removal, but I also continued to run the whole time (except for 2 weeks after the surgery when I wasn't allowed to). I knew I was going to gain some weight, and I wasn't too hard on myself about this gain. I had my second thyroid surgery in August 2018, very hypo in October and it took until January for my tests to be "normal". In the last few months now that I'm "normal", I was able to get rid of those few extra pounds and I am almost to my presurgery weight, but I have also been running 50+ miles a week so that is probably playing a role in getting my weight down as well (I realize it is weird that I have often have very little energy and can still manage to go on long runs - exercise actually "helps" me feel better later in the day and so I run in the mornings, not because I have too much energy because that is never the case for me). Anyway, I expected some weight gain and wasn't hard on myself about it, but I did then try to lose the weight after getting to an adequate hormone level.
As for hair loss - I had some hair loss, but I have very thick coarse hair and no one except me noticed, and I only noticed because I'd gather handfuls in the shower. I can't actually tell I have less hair except for collecting it in my hand. I'm still losing some hair, but not nearly as much as in October, and it could be related to weight loss (lots of things can cause you to lose hair, including anesthesia and weight loss). For me this was more of an annoyance than a problem.
As for depression - the only time I might have had depression in my life was when I was 19-20, when I had put on 30-40 pounds in high school and college for no apparent reason (this probably was the first time I was hypo due to Hashimoto's, I'm 38 now so it only took me about 20 years to figure that out). I seemed to stop feeling that way when I started exercising at the age of 20 (in 2000). Exercise almost always helps stabilize my mood. I have not experienced depression following my thyroid surgery and subsequent dip into being more hypo, but all people experience things in different ways. At no point have I felt suicidal in my life.
As for aches and pains - I went through a period in 2016-2017 (after I had gained 30 pounds with no good reason and then in 2017 lost 30 pounds) where I had inexplicable muscle pain on the front of my thighs and then along my hip. Well... running probably caused the IT band pain in my hip, but I run a lot and my thighs are used to it. I separated my shoulder in 2017... I can't be sure any of these were caused by being hypo although I was probably subclinical hypo at the time (and front of thigh and shoulder are two specific spots that hypothyroidism can cause weakness in). I do know that my body has felt pretty darn good after the surgeries and I haven't had any running injuries since 2017, even though I spent a good portion of 2018 being hypo and having surgery. (I ran 235 miles in October 2018, 1-2 months after my surgery - that seems a bit excessive looking at it now). I was actually able to build up my running base this past year and the first part of 2019, so much so that I felt better after this marathon last week then I did in the 3 previous marathons I did in 2012 and 2013, before I had my thyroid removed. I'm actually in better shape and at a healthier weight than I was for those marathons as well (I don't think the thyroid surgery made me stronger, but it is possible I came out the other side with a different perspective and more determined than ever to run another marathon to prove to myself I could).
I thought I'd share my experience as one person who has had their thyroid removed, but this is probably not normal and doesn't mean you will actually experience hypo symptoms following your surgery. I was already hypo when I went in for my second surgery (due to Hashimoto's, and after the lobectomy the two month wait in between when I wasn't put on any thyroid medication until about 3 weeks before my second surgery).
I'm not going to say you might not experience some hypothyroidism symptoms trying to get the hormone levels to the right level, but it definitely isn't a permanent situation.
Most people who are complaining or asking questions about getting to the correct level of hormone are probably people dealing with some symptoms, so what you read are people having a difficult time. I have no idea how common it is to have hypothyroidism symptoms while adjusting. I do know some people can be fine for years, and then need a dosage increase or decrease. I did experience some symptoms when I was more hypo, but I think being optimistic and realizing that this is only a temporary period in my life helped me get through the tough times.
I can't recommend whether to have surgery or not because I am not a medical professional. It sounds like eventually you will probably need the surgery, especially if your thyroid continues to grow. Whether you want to wait until you can't breathe well or are in pain is up to you, but I'm assuming your doctors are trying to avoid waiting until you physically can't breathe and need an emergency surgery.
Whether to have the surgery or not ? It's hard to say, because even if you have visible nodules (I had ones I could see in the mirror as well, although it sounds like yours may be larger than mine were), if they are not causing problems and are not cancerous, usually the best decision is to just wait and see, and do follow up ultrasounds and biopsies. If the nodules are so big that the trachea or esophagus now bends around them (which can happen), that is another concern and could influence the decision, because the possibility of obstruction in the future is pretty high if that is the case.
Good luck with your decision, and even if you decide not to do the surgery now but need to in the future, please be assured that thyroid surgery doesn't mean you have to live with hypothyroidism for the rest of your life.
I've been dealing with subclinical hypo symptoms for probably 20 years, but was only diagnosed with a thyroid problem last year. Most of my subclinical hypothyroidism symptoms were livable and I really didn't know it was thyroid related (even when I gained 30 pounds while running 30-50 miles a week, I just assumed I was eating too much food). After my surgery, I was more hypo (my TSH peaked around 16 in October 2018). The major symptoms for me were extreme tiredness, especially in the afternoon, as well as monthly hormone cycling issues which had been going on for years from being subclinical hypo, but got worse (causing iron loss and sometimes extreme moodiness), and an inability to stay focused on tasks, which can be very frustrating.
As for excessive weight gain -after the surgery, I was paying attention to how much I was eating, trying to eat healthy, and I put on about 6-7 pounds after the total removal, but I also continued to run the whole time (except for 2 weeks after the surgery when I wasn't allowed to). I knew I was going to gain some weight, and I wasn't too hard on myself about this gain. I had my second thyroid surgery in August 2018, very hypo in October and it took until January for my tests to be "normal". In the last few months now that I'm "normal", I was able to get rid of those few extra pounds and I am almost to my presurgery weight, but I have also been running 50+ miles a week so that is probably playing a role in getting my weight down as well (I realize it is weird that I have often have very little energy and can still manage to go on long runs - exercise actually "helps" me feel better later in the day and so I run in the mornings, not because I have too much energy because that is never the case for me). Anyway, I expected some weight gain and wasn't hard on myself about it, but I did then try to lose the weight after getting to an adequate hormone level.
As for hair loss - I had some hair loss, but I have very thick coarse hair and no one except me noticed, and I only noticed because I'd gather handfuls in the shower. I can't actually tell I have less hair except for collecting it in my hand. I'm still losing some hair, but not nearly as much as in October, and it could be related to weight loss (lots of things can cause you to lose hair, including anesthesia and weight loss). For me this was more of an annoyance than a problem.
As for depression - the only time I might have had depression in my life was when I was 19-20, when I had put on 30-40 pounds in high school and college for no apparent reason (this probably was the first time I was hypo due to Hashimoto's, I'm 38 now so it only took me about 20 years to figure that out). I seemed to stop feeling that way when I started exercising at the age of 20 (in 2000). Exercise almost always helps stabilize my mood. I have not experienced depression following my thyroid surgery and subsequent dip into being more hypo, but all people experience things in different ways. At no point have I felt suicidal in my life.
As for aches and pains - I went through a period in 2016-2017 (after I had gained 30 pounds with no good reason and then in 2017 lost 30 pounds) where I had inexplicable muscle pain on the front of my thighs and then along my hip. Well... running probably caused the IT band pain in my hip, but I run a lot and my thighs are used to it. I separated my shoulder in 2017... I can't be sure any of these were caused by being hypo although I was probably subclinical hypo at the time (and front of thigh and shoulder are two specific spots that hypothyroidism can cause weakness in). I do know that my body has felt pretty darn good after the surgeries and I haven't had any running injuries since 2017, even though I spent a good portion of 2018 being hypo and having surgery. (I ran 235 miles in October 2018, 1-2 months after my surgery - that seems a bit excessive looking at it now). I was actually able to build up my running base this past year and the first part of 2019, so much so that I felt better after this marathon last week then I did in the 3 previous marathons I did in 2012 and 2013, before I had my thyroid removed. I'm actually in better shape and at a healthier weight than I was for those marathons as well (I don't think the thyroid surgery made me stronger, but it is possible I came out the other side with a different perspective and more determined than ever to run another marathon to prove to myself I could).
I thought I'd share my experience as one person who has had their thyroid removed, but this is probably not normal and doesn't mean you will actually experience hypo symptoms following your surgery. I was already hypo when I went in for my second surgery (due to Hashimoto's, and after the lobectomy the two month wait in between when I wasn't put on any thyroid medication until about 3 weeks before my second surgery).
I'm not going to say you might not experience some hypothyroidism symptoms trying to get the hormone levels to the right level, but it definitely isn't a permanent situation.
Most people who are complaining or asking questions about getting to the correct level of hormone are probably people dealing with some symptoms, so what you read are people having a difficult time. I have no idea how common it is to have hypothyroidism symptoms while adjusting. I do know some people can be fine for years, and then need a dosage increase or decrease. I did experience some symptoms when I was more hypo, but I think being optimistic and realizing that this is only a temporary period in my life helped me get through the tough times.
I can't recommend whether to have surgery or not because I am not a medical professional. It sounds like eventually you will probably need the surgery, especially if your thyroid continues to grow. Whether you want to wait until you can't breathe well or are in pain is up to you, but I'm assuming your doctors are trying to avoid waiting until you physically can't breathe and need an emergency surgery.
Whether to have the surgery or not ? It's hard to say, because even if you have visible nodules (I had ones I could see in the mirror as well, although it sounds like yours may be larger than mine were), if they are not causing problems and are not cancerous, usually the best decision is to just wait and see, and do follow up ultrasounds and biopsies. If the nodules are so big that the trachea or esophagus now bends around them (which can happen), that is another concern and could influence the decision, because the possibility of obstruction in the future is pretty high if that is the case.
Good luck with your decision, and even if you decide not to do the surgery now but need to in the future, please be assured that thyroid surgery doesn't mean you have to live with hypothyroidism for the rest of your life.
Hi Bierchugga007,
It is difficult to say whether you are making the right decision or not without more information. What is prompting your doctors this time to recommend surgery? (And, are they removing your full thyroid or doing a thyroid lobectomy (removing half)?)
If one of the nodules is bigger than the thyroid itself, it is possible it is blocking airways and impacting your ability to swallow, breathe, or is causing you some pain. This is a reasonable reason to remove the thyroid.
Did you have a biopsy come back that says one of the nodules is cancerous? If that is the case, doctors may want to remove because they are concerned that cancer might spread throughout the body, making it more difficult to treat in the future.
Do you have hyperthyroidism that is causing symptoms?
If none of those apply, why is the doctor recommending removing the thyroid? I'm assuming you have had a biopsy on the nodules and this is what prompted the surgery, but it is unclear if that is the reason. Sometimes biopsies come back as "indeterminant" or "suspicious for neoplasm", and this puts doctors in an uncomfortable position because these suspicious for neoplasms are often not cancerous, but if they don't do the surgery, they miss out on diagnosing a cancer and the thyroid cancer may spread throughout the body (and with a suspicious result, there is often no way of telling whether it is cancer or not without doing pathology on the nodule once it is removed). I had many nodules, one of them was suspicious for neoplasm, and we did Afirma genetic testing on my nodule, and it still came back as suspicious, so I had the surgery. In my case it was cancer (as well as two other nodules that had not been biopsied - I had a thyroid full of nodules due to Hashimoto's), and I had to get the rest of my thyroid removed. The cancer had not spread, so I did not need radioactive iodine treatment, just surgery.
Your family and coworkers are probably trying to look out for you, but do they actually have any experience with taking thyroid hormone after their thyroid was removed? For me, it has taken some time to get used to taking synthetic thyroid hormones, but a lot of people adjust faster, and there is no reason you can't live a happy and fulfilled life without your thyroid (if you have a good reason to have the surgery). I had my thyroid removed 9 months ago, and even with the months after surgery where I dipped hypo, I was still able to run (which I love doing) and I just ran a marathon last week. So, for me there was an adjustment but it doesn't mean my life was ruined. My grandmother had her thyroid removed when she was 47, and lived another 40 years on synthetic hormone, so I know it is doable.
For me, I knew I needed the surgery because there was a good chance (50%) that my nodule was cancerous, and if it wasn't now, there was a good chance it would become cancerous in the future. If you are going to go through with the surgery, I think it helps to know exactly why you need the surgery and what the plan is for after the surgery. It is a major decision to remove the thyroid, since you will be forever dependent on taking a thyroid hormone, but if there is a good reason to have the surgery it may be worth it to go through and remove the thyroid.
I hope this helps - if there isn't a good reason for the surgery then I can understand why you are thinking about backing out. If you do have a good reason for the surgery, share that with your family and coworkers. This is about your body and your thyroid, and while you only get one thyroid, sometimes there is a good reason to get rid of it.
It is difficult to say whether you are making the right decision or not without more information. What is prompting your doctors this time to recommend surgery? (And, are they removing your full thyroid or doing a thyroid lobectomy (removing half)?)
If one of the nodules is bigger than the thyroid itself, it is possible it is blocking airways and impacting your ability to swallow, breathe, or is causing you some pain. This is a reasonable reason to remove the thyroid.
Did you have a biopsy come back that says one of the nodules is cancerous? If that is the case, doctors may want to remove because they are concerned that cancer might spread throughout the body, making it more difficult to treat in the future.
Do you have hyperthyroidism that is causing symptoms?
If none of those apply, why is the doctor recommending removing the thyroid? I'm assuming you have had a biopsy on the nodules and this is what prompted the surgery, but it is unclear if that is the reason. Sometimes biopsies come back as "indeterminant" or "suspicious for neoplasm", and this puts doctors in an uncomfortable position because these suspicious for neoplasms are often not cancerous, but if they don't do the surgery, they miss out on diagnosing a cancer and the thyroid cancer may spread throughout the body (and with a suspicious result, there is often no way of telling whether it is cancer or not without doing pathology on the nodule once it is removed). I had many nodules, one of them was suspicious for neoplasm, and we did Afirma genetic testing on my nodule, and it still came back as suspicious, so I had the surgery. In my case it was cancer (as well as two other nodules that had not been biopsied - I had a thyroid full of nodules due to Hashimoto's), and I had to get the rest of my thyroid removed. The cancer had not spread, so I did not need radioactive iodine treatment, just surgery.
Your family and coworkers are probably trying to look out for you, but do they actually have any experience with taking thyroid hormone after their thyroid was removed? For me, it has taken some time to get used to taking synthetic thyroid hormones, but a lot of people adjust faster, and there is no reason you can't live a happy and fulfilled life without your thyroid (if you have a good reason to have the surgery). I had my thyroid removed 9 months ago, and even with the months after surgery where I dipped hypo, I was still able to run (which I love doing) and I just ran a marathon last week. So, for me there was an adjustment but it doesn't mean my life was ruined. My grandmother had her thyroid removed when she was 47, and lived another 40 years on synthetic hormone, so I know it is doable.
For me, I knew I needed the surgery because there was a good chance (50%) that my nodule was cancerous, and if it wasn't now, there was a good chance it would become cancerous in the future. If you are going to go through with the surgery, I think it helps to know exactly why you need the surgery and what the plan is for after the surgery. It is a major decision to remove the thyroid, since you will be forever dependent on taking a thyroid hormone, but if there is a good reason to have the surgery it may be worth it to go through and remove the thyroid.
I hope this helps - if there isn't a good reason for the surgery then I can understand why you are thinking about backing out. If you do have a good reason for the surgery, share that with your family and coworkers. This is about your body and your thyroid, and while you only get one thyroid, sometimes there is a good reason to get rid of it.
1 Comments
I appreciate the feedback. As for the reason to get it out is the doctor is surprised I am not having breathing and swallowing issues, being it looks to be pressing on the trachea. Only 2-3 times with my head in a certain position did it cause choking. Theres also concerns the biopsy missing something and that they are all gradually growing. They are clearly visible looking at my throat on both sides. They say they will have to come out, for no other reason as its bound to eventualy cause major issues with breathing or swallowing
Whats freaking me out is (and I am not even talking about what there is online) is the family and co workers long list of what I will probably have to endure after a total removed: excessive weight gain, hair loss, cant think straight, no energy, depression, aches, pains, depression (one person said it gets so bad you want to kill yourself) And being told it never gets better. You go from tolerable days to a living hell
A good chunk of whats online is people complaining of the same things. I don't know if the people who are complaining are a very vocal minority or the majority. Doctors tell me I am crazy and not to listen to them, but people are saying their doctors told them the same thing....
I have surgery scheduled in 4 days and I am not sure I can go thru with it if this is what will happen
Whats freaking me out is (and I am not even talking about what there is online) is the family and co workers long list of what I will probably have to endure after a total removed: excessive weight gain, hair loss, cant think straight, no energy, depression, aches, pains, depression (one person said it gets so bad you want to kill yourself) And being told it never gets better. You go from tolerable days to a living hell
A good chunk of whats online is people complaining of the same things. I don't know if the people who are complaining are a very vocal minority or the majority. Doctors tell me I am crazy and not to listen to them, but people are saying their doctors told them the same thing....
I have surgery scheduled in 4 days and I am not sure I can go thru with it if this is what will happen
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