# Operate or not: Pros and Cons



## peaches

I am coming to the end of my rope. I need some advice from all of you guys. Any advice would be appreciated.

I am bordering on absolute insanity. I had a brief spell where I felt reasonably well after starting on thyroid medication. (100mcgs Synthroid and 7.5mcgs of generic Cytomel daily) I have now reached a point to where I am backsliding. The old symptoms are returning just not quite as severe. (weight gain, hair loss, dry-cracking skin,anxiety attacks, swollen-scratchy-sore-burning throat, burning feeling from the inside out, dizziness, waking up in the middle of the night and not being able to go back to sleep because of the above symptoms-this happens several nights a week, emotional roller coaster, severe heartburn.) I also have to put an ice pack on my throat when these episodes happen at night just to try and alleviate some of the symptoms. It is becoming overwhelming. I have been suffering from this for about 10 years now. About 13 years ago it starting with crazy emotional mood swings and full body hives.

Even though my endo hasn't discussed it with me I am wondering if surgery would help put me out of my misery and help me recover my quality of life. She just had an ultrasound done no changes from the one I had a year ago. One lobe is swollen more than the other if there are nodes she didn't mention it. Is there anyone out there who had surgery when they didn't have cancer or a completely dead thyroid? Mine is still working to some extent. I have Hashi's and I swing from extremely hypo to extemely hyper on a weekly basis.


----------



## lavender

My situation is a bit different from yours, not sure if it will help, but I will share my experience.

I had surgery for extremely hyper Graves. Based on my symptoms, I am sure it was there for years before I was diagnosed, and once it was, I just wanted my thyroid out. I was pretty frank with my endo when he suggested I stay on anti-thyroid meds for a year or more. They were making me miserable and I could not function/live like that. He respected my decision, even though he voiced that it was not his first choice and referred me to a surgeon.

I think perhaps the biggest question is if your insurance will agree that your illness is severe enough to justify surgery. For me, it was obvious. I can not tell you how they deal with Hashi's. But I would say that it is worth bringing up to your doc if this is what you really want.

I just want to put it out there that once your thyroid is out, you will not be at the end of your journey, just the beginning of a new one in trying to find a way to supplement the hormones your body is not able to make. And that has been a big challenge for me. Even so, I am greatful that my thyroid is gone.


----------



## GD Women

Bad cop here! I agree.

None of the treatment options are a 100% guarantee to bring symptom free wellness. In surgery you will be left with some thyroid tissue that still can play havoc with you and symptoms, let alone grow back. Unless you do RAI after surgery to kill off the rest of the thyroid residue left behind.
RAI, what can I say it has its draw backs too.

Unless your levels state that you are swing back and forth from hypo to hyper, you are just one or the other, you can't be both at the same time. A lot of symptoms are shared between hypo and hyper let along other illnesses. Such as for a few; Symptoms of mercury poisoning. How's you teeth fillings
Respiratory problem, Headaches, vertigo, tinnitus, shaking in various areas of the body (eye lids, feet etc.), Cardiovascular problem.

"The symptoms of both hyperthyroidism and hypothyroidism are non-specific and can be mimicked by other conditions." New England Journal Of Medicine

If you have some of the symptoms and don't have a wholesome diet, take nutritional supplements, exercise to tolerance, get physical treatment as needed and abstain from taking metabolism-slowing drugs each day (such as beta-blockers, muscle relaxants, and narcotics) raises the possibility that your symptoms are caused by the issue addressed abovr. For example, if you don't take nutritional supplements, nutritional deficiencies may the cause of your symptoms. In that case, taking nutritional supplements would relieve the symptoms. You should consider the use of thyroid hormone only when you can honestly say that you do all the above. 
If you do all the above, it's suggested you find an alternative doctor who is cooperative and collaborative. The doctor should be competent at differentiating medical disorders that might be causing your symptoms. For example, low adrenal function is a common cause of some of the symptoms 
A doctor competent at diagnosis can help you determine the cause-whether it's hypothyroidism or some other disorder.

It's your choice with the help of your doctor. I am sure its not an easy one so good luck.


----------



## peaches

GD Women said:


> Bad cop here! I agree.
> 
> None of the treatment options are a 100% guarantee to bring symptom free wellness. In surgery you will be left with some thyroid tissue that still can play havoc with you and symptoms, let alone grow back. Unless you do RAI after surgery to kill off the rest of the thyroid residue left behind.
> RAI, what can I say it has its draw backs too.
> 
> Unless your levels state that you are swing back and forth from hypo to hyper, you are just one or the other, you can't be both at the same time. A lot of symptoms are shared between hypo and hyper let along other illnesses. Such as for a few; Symptoms of mercury poisoning. How's you teeth fillings
> Respiratory problem, Headaches, vertigo, tinnitus, shaking in various areas of the body (eye lids, feet etc.), Cardiovascular problem.
> 
> "The symptoms of both hyperthyroidism and hypothyroidism are non-specific and can be mimicked by other conditions." New England Journal Of Medicine
> 
> If you have some of the symptoms and don't have a wholesome diet, take nutritional supplements, exercise to tolerance, get physical treatment as needed and abstain from taking metabolism-slowing drugs each day (such as beta-blockers, muscle relaxants, and narcotics) raises the possibility that your symptoms are caused by the issue addressed abovr. For example, if you don't take nutritional supplements, nutritional deficiencies may the cause of your symptoms. In that case, taking nutritional supplements would relieve the symptoms. You should consider the use of thyroid hormone only when you can honestly say that you do all the above.
> If you do all the above, it's suggested you find an alternative doctor who is cooperative and collaborative. The doctor should be competent at differentiating medical disorders that might be causing your symptoms. For example, low adrenal function is a common cause of some of the symptoms
> A doctor competent at diagnosis can help you determine the cause-whether it's hypothyroidism or some other disorder.
> 
> It's your choice with the help of your doctor. I am sure its not an easy one so good luck.


I have officially been diagnosed with Hashimoto's so I do swing back and forth on a weekly basis. Yes you are correct some of the symptoms from Hypo to Hyper are the same. I have extemely low Vitamin D that my endo has been treating by putting me on 50,000iu bi-weekly. It is not really changing much. I am lucky at work that they provide free blood testing to monitor all kinds of levels and deficiencies in the blood so I am aware of anything that may be off with my thyroid panels and cholesterol etc..

I am on several supplements to try and keep myself as healthy as possible and it so far is not doing much good.

Right now I am just trying to weigh my options based on how bad I feel on a daily basis with little or no improvement. I would like to hear from those who have had the surgery and see if it has made any improvements on their lives in contrast to how they felt pre-surgery. I will take this into account along with a long conversation with my doctor on what she thinks may be the best strategy for me.


----------



## lavender

My TT was 3 1/2 months ago, and my surgery may have been to recent to really see the improvement. Also, I have Graves which is different from Hashi's.

Since my surgery, my mood swings have greatly reduced. I am no longer as irritable or anxious as I was. I no longer have a tremor and I can write my name again. Dizziness and headaches have improved. I am no longer experiencing derealization. Heart Palpitations have improved. I am able to write a sentence. Sensitivity to light is less severe. I can fully close my eyes and no longer require a sleep mask to block the light out at night time. Constant diarrhea has stopped. I am no longer extremely sensitive to heat (my AC as at 60-65 all summer), but am more sensitive to cold. I am able to sleep.

I am continuing to deal with extreme fatigue, brain fog and loss of memory. I could sleep 12+ hours a night and barely have energy to function. If I had a job, I am sure I would not be able to work. I am in school and am barely able to complete the work for part time classes. I have had a lot of hair loss and have noticed a bald spot. I have quite a bit of pain-muscle aches and weakness.

I believe I am not on the correct thyroid hormone replacement based on my recent labs. I have hope that I will feel better once this is corrected. My hope is that I will be telling a different story in a few months.

I will say that for me the decision to have my thyroid removed was a gut reaction. I did a lot of reading and got a lot of opinions, but ultimately listened to my own body. I could tell that my thyroid was making me sick and needed to be removed. People who have known me for years told me they could see an immediate change/improvement after my surgery, and I felt instant relief the moment I woke up. I had a month where I felt better than I have in years. Then my thyroid levels dropped and I have not felt well since. Even so, I believe I made the best decision for me.


----------



## McKenna

I had my thyroid out almost 4 weeks ago. My decision was made b/c of Hashi's, hashitoxicosis (swinging) and a large cold nodule that they could not get a good FNA biopsy of. It was mostly b/c of my swinging and the hyper feelings that I wanted it out. Thankfully, those symptoms left after surgery and I'm doing pretty well even though I'm very hypo now. I pray it continues.

My situation was weird, with labs showing hypo, but some hyper test results (high RAIU scan and high TSI). In hindsite, I had hypo symptoms for a few years, but didn't know what it was. I thought it was aging (I only just turned 40), perimenopause, new job stress. Then I started with the hyper stuff and that was a nightmare. My doc tested everything under the sun and that was when we found the thyroid to be messed up.

I'm back to smiling again, laughing, much less irritability, almost no anxiety except for normal life stuff. I don't feel like my head is in a weird bubble (don't know how to describe it! LOL!) I have minimal fatigue, which is strange b/c I'm very hypo now until my Armour gets right, and I'm conviced it's b/c of the T3 in Armour. I am gaining some weight, but I'm very small to begin with and nowhere near overweight.

It's not an easy decison to make and I wish you well with it.


----------



## Guest

I understand what you are talking about and dealing with. I have hashi's also. I also swing back and forth sometimes within hours. I stay cold alot but also can not tolerate heat very well. If I exert myself (or get in bed) I am short of breath and my heart is about to beat out of my chest. I stay tired (almost like completely exhausted feeling) and sleepy all the time. I do not want or feel like going anywhere or doing anything. I am in constant pain (also have RSD and Fibro). My Vit D was down to 8.4 and I have been on 50,000 a week for 11 weeks now. I feel a tad more alert but not no where near normal, my level is up, so this is resolved. I have nodules, had FNA and thankful they are benign. It seems like no meds help any of the bad feelings.

I had new labs this am and see my endo next Monday for results and follow up.

I have talked with her about removing my thyroid and she wants me to just leave it alone. She said we needed to just keep a check on everything.

She said she would refer me to a surgeon but her opinion was not to have it done. She said this was because of the complicated surgery that it is that I could have more problems afterwards than I do now. She said she is concerned about the possible complications from the surgery.

I think I will dwell on it until after the first of the year and go from there. I feel like I just want it out and gone. I would love to live a half normal life again. I know I should not feel this bad everyday at 51 yrs old.

I am glad that you brought this up, as I too would like to see everyone's comments on this.

Thanks!

Kay


----------



## McKenna

I completely understand the fears and not knowing what will happen. I had them all too, and I still wonder how I'll get regulated.



> She said she would refer me to a surgeon but her opinion was not to have it done. She said this was because of the complicated surgery that it is that I could have more problems afterwards than I do now. She said she is concerned about the possible complications from the surgery.


As far as the surgery itself is concerned, this is where interviewing a surgeon is so important. Then you can find out what his/her individual skill level is. You can ask the questions about how many complications he/she has had, any people with vocal chord damage, permanant or temporary, how many with parathyroid issues, how the surgery is done, incision, drain, etc.


----------



## lavender

McKenna said:


> As far as the surgery itself is concerned, this is where interviewing a surgeon is so important. Then you can find out what his/her individual skill level is. You can ask the questions about how many complications he/she has had, any people with vocal chord damage, permanant or temporary, how many with parathyroid issues, how the surgery is done, incision, drain, etc.


I completely agree with you on this one. My family doc was dead set against surgery because she thought there were too many risks and My endo did not recommend it. When I talked with the surgeon and learned the chance of complications such as vocal chord or parathyroid damage, I felt a lot better. I had some issues with my parathyroids, (which are improving) and I think it could have been managed a lot better after my surgery than it was. My issues with my surgeon had a lot more to do with his bedside manner than his actual surgical skill. I think the surgery itself went pretty well. Bottom line, I knew I wanted surgery, was direct with my docs, and feel good about my decision. I would have felt a lot worse if I had let the docs talk me into something I didn't want.


----------



## Guest

I was wondering that if I have surgery after recovery and meds adjustments, should I show and have improvements with all the problems and symptoms of this nasty thyroid?

I have been having some new symptoms for a few weeks now, I cramp every where (feet, toes, legs, hands and sides) at night I can not sleep for this happening every few minutes if I move. I have had problems since 2002 with my thyroid. Also endo said we need to check nodules every 6 to 9 months.

I was thinking along the lines of get rid of it and get adjusted and I should feel better! I am tired of living this way and never having a "good day". Everything I do is because I push myself to do it, then pay for a few days after doing so. Right now my goal is to cook for Thanksgiving, and I will, but then feel so bad I will not want eat or enjoy the day with family!

Does anyone think this will happen if I have surgery?

I would love to hear everyone's comments, suggestions and/or idea on this, you all share so much valuable info that is always imformative and oh so helpful.

Thanks to all!

Kay


----------



## McKenna

> Does anyone think this will happen if I have surgery?


 I wish there was a definitive answer, but it is very individual.

When I was considering to have the surgery or not, I saw some negative stories online and they really freaked me out. But the more I thought about it the more I realized some things.

1. People who are having a hard time usually come to support forums for help. Considering how many people have their thyroids out, the amount of people needing support afterwards is small. This is just based on my researching different online thyroid support groups.

_In the United States, more than 80,000 thyroidectomies are performed each year. (http://www.nursingcenter.com/prodev/ce_article.asp?tid=942473)_

Plus, you never really know what another person's life circumstances are like. People don't usually come on forums to rave about how well they are doing with their TT. They move on with their lives and don't think twice about it. People usually come to forums for help and direction with something that is not going well. And I thank the Lord for support forums like this one and others to provide direction and help.

2. I know two people personally who had their thyroids out and they are fine. One had cancer and one had hashi's. Both live their lives, work and are active and doing well. I also know one who had RAI and she is fine now too. She was hyper. They all have told me that it takes a while to get regulated but they are doing very well now. When I was in the hospital getting prepped for surgery, one of the nurses told me she had her thyroid removed years ago and she encouraged me that it would be ok. She had one side removed b/c of nodules, but had to have a second surgery about 7 years later for the other side because she developed more nodules. It is way more common than I realized before. I've found that the more people I talk with, the more people tell me that either they, or someone in their families or friends, have had their thyroid removed or RAI. I had no idea before! Heck, I didn't even know what a thryoid did 9 months ago!

3. For those of us with thyroid disease, we have to have blood tests regularly anyway, we have a balancing act with meds anyway, we have to watch our diets, supplements, vitamins, etc. now anyway. Those of us with autoimmune disease have to deal with that and everything that comes with it anyway, our thyroids are dying anyway. This is all part of the hand we were dealt when our thyroids and bodies konked out on us. Surgery doesn't change it much IMHO.

This is all my own opinion and some of the things I thought about while making my decision. :winking0001:


----------



## prettynikki5

peaches said:


> I am coming to the end of my rope. I need some advice from all of you guys. Any advice would be appreciated.
> 
> I am bordering on absolute insanity. I had a brief spell where I felt reasonably well after starting on thyroid medication. (100mcgs Synthroid and 7.5mcgs of generic Cytomel daily) I have now reached a point to where I am backsliding. The old symptoms are returning just not quite as severe. (weight gain, hair loss, dry-cracking skin,anxiety attacks, swollen-scratchy-sore-burning throat, burning feeling from the inside out, dizziness, waking up in the middle of the night and not being able to go back to sleep because of the above symptoms-this happens several nights a week, emotional roller coaster, severe heartburn.) I also have to put an ice pack on my throat when these episodes happen at night just to try and alleviate some of the symptoms. It is becoming overwhelming. I have been suffering from this for about 10 years now. About 13 years ago it starting with crazy emotional mood swings and full body hives.
> 
> Even though my endo hasn't discussed it with me I am wondering if surgery would help put me out of my misery and help me recover my quality of life. She just had an ultrasound done no changes from the one I had a year ago. One lobe is swollen more than the other if there are nodes she didn't mention it. Is there anyone out there who had surgery when they didn't have cancer or a completely dead thyroid? Mine is still working to some extent. I have Hashi's and I swing from extremely hypo to extemely hyper on a weekly basis.


Hello 
I am sorry you are feeling this way. I understand. My experience was very similar to yours, I had Hashi's as well. I had a TT just this past June. I am so glad that I did, I am feeling better than I have in years. I do not regret my decision AT ALL. The way I see it, alot of my symptoms were simply the autoimmune response my body was having against my thyroid. Since removing the thing my body was attacking, I am healing. I believe I would have continued to be 'sick' that way until my thyroid was completely dead from being attacked. Who knows how long that would have gone on. My surgeon described my thyroid to me after removing it and it had alot of scar tissue covering it, poor thing had been beaten up. The immune system is no joke. Best wishes to you and healing thoughts your way!
Nicole


----------



## Andros

lavender said:


> My TT was 3 1/2 months ago, and my surgery may have been to recent to really see the improvement. Also, I have Graves which is different from Hashi's.
> 
> Since my surgery, my mood swings have greatly reduced. I am no longer as irritable or anxious as I was. I no longer have a tremor and I can write my name again. Dizziness and headaches have improved. I am no longer experiencing derealization. Heart Palpitations have improved. I am able to write a sentence. Sensitivity to light is less severe. I can fully close my eyes and no longer require a sleep mask to block the light out at night time. Constant diarrhea has stopped. I am no longer extremely sensitive to heat (my AC as at 60-65 all summer), but am more sensitive to cold. I am able to sleep.
> 
> I am continuing to deal with extreme fatigue, brain fog and loss of memory. I could sleep 12+ hours a night and barely have energy to function. If I had a job, I am sure I would not be able to work. I am in school and am barely able to complete the work for part time classes. I have had a lot of hair loss and have noticed a bald spot. I have quite a bit of pain-muscle aches and weakness.
> 
> I believe I am not on the correct thyroid hormone replacement based on my recent labs. I have hope that I will feel better once this is corrected. My hope is that I will be telling a different story in a few months.
> 
> I will say that for me the decision to have my thyroid removed was a gut reaction. I did a lot of reading and got a lot of opinions, but ultimately listened to my own body. I could tell that my thyroid was making me sick and needed to be removed. People who have known me for years told me they could see an immediate change/improvement after my surgery, and I felt instant relief the moment I woke up. I had a month where I felt better than I have in years. Then my thyroid levels dropped and I have not felt well since. Even so, I believe I made the best decision for me.


We need to get you on the right thyroxine replacement for your body and your needs. Plus, it has to be titrated properly until you feel well.

Sending prayers and thoughts for the achievement of this goal in the very near future.

You did make the right decision; there is no question of it.


----------

