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Can a thyroidectomy get rid of graves disease?
Once you have a total thyroidectomy, do you still have graves disease?
I was diagnosed in June 2007 with hyperthyroidism and graves disease. I was on Toporol and Tapazole for 6 months prior to having surgery. I had a total thyroidectomy in November 2007 and my recovery was great. I'm on Levoxyl now and still trying to find the right dose but so far so good.... it just needs a little tweaking here and there. I don't miss the graves symptoms at all. I've researched everything I can get my hands on and I still haven't found a clear-cut answer.... a client of mine also has graves and he said he's seeing one of the top endocrinologists in the country who told him that even with the surgery, you still have graves disease. Someone else told me this: Graves' is the autoimmune disease that can cause hyperthyroidism. so if it makes any sense then think of it as having 2 diseases, one which is caused by the other. So when you have your thyroid removed then you don't have the hyperthyroid disease anymore but you still have the autoimmune disease (there is no cure, so unless someone comes up with one you'll always have it)
What confuses me is that graves is the most common FORM of hyperthyroidism. I had a total thyroidectomy, therefore, I have no thyroid and am now technically hypothyroid so how could I still have graves disease?
Can you please help me on this one?
I was diagnosed in June 2007 with hyperthyroidism and graves disease. I was on Toporol and Tapazole for 6 months prior to having surgery. I had a total thyroidectomy in November 2007 and my recovery was great. I'm on Levoxyl now and still trying to find the right dose but so far so good.... it just needs a little tweaking here and there. I don't miss the graves symptoms at all. I've researched everything I can get my hands on and I still haven't found a clear-cut answer.... a client of mine also has graves and he said he's seeing one of the top endocrinologists in the country who told him that even with the surgery, you still have graves disease. Someone else told me this: Graves' is the autoimmune disease that can cause hyperthyroidism. so if it makes any sense then think of it as having 2 diseases, one which is caused by the other. So when you have your thyroid removed then you don't have the hyperthyroid disease anymore but you still have the autoimmune disease (there is no cure, so unless someone comes up with one you'll always have it)
What confuses me is that graves is the most common FORM of hyperthyroidism. I had a total thyroidectomy, therefore, I have no thyroid and am now technically hypothyroid so how could I still have graves disease?
Can you please help me on this one?
Hello I'm Stephanie and I as many as the rest of you was diagnosed with hyperthyroidism and Graves' Disease. At first my hyperthyroidism was diagnosed as pregnancy induced hyperthyroidism in January 2003. Although monitored consistently for 10 years, in October 2013 I got Somenilla that triggered a Thyroid Storm, (TSH LEVEL 6.9, T3 and T4 levels unsure of.), and Graves' Optomopathy. I spent 4 days in ICU, discharged on Toporal XR, Hydroclorthyizide (HCTZ), and the Anti-Thyroid Med Methimozoal. I remained on meds until September 2014, at which time I was stable enough for a Thyroidectomy. My Graves' Optomopathy however, took time for my eyes to stop moving. I had horrible double vision, even with strong priziums. and both eyes bulging to the point I lost driving privileges and needed constant supervision as I would walk into walls and fell down a flight of stairs. In January 2015 my eyes stabilized enough to have decompression on both eyes. Then in November 2015 the had to reposition my left eye upward. I currently still need the eyelid surgery, but that may be on hold for awhile as my left eye is once again on the move. In short I just wanted anyone/everyone to know its a long or short process depending on your severity of the disease. I can say with my own health and this disease I don't do anything easy or small in any way shape or form. I remain positive and hopeful in my journey and I owe it all to the exceptional support I have within my family, loving husband, and compassionate children (Ages: 17,13 ). Without them and the phenomenal medical team in my corner I'd be lost. To all reading this post keep your head up, don't loose faith, and keep your sense of humor, because if you haven't already run into someone looking at you funny or whispering behind your back that "he/she looks funny or I wonder what's wrong with her." You just might. I just looked at them longer and laughed as I walked away.
Sincerely,
Stephanie S.
Sincerely,
Stephanie S.
Hi and welcome.
This is a very old thread, and the original poster, gapeach30518, hasn't posted in many years. It's unlikely you will get a reply. However, if you'd like to post your own new thread (new ones usually get more attention than tagging onto old ones), we'll be happy to try to address your personal concerns.
Best of luck.
This is a very old thread, and the original poster, gapeach30518, hasn't posted in many years. It's unlikely you will get a reply. However, if you'd like to post your own new thread (new ones usually get more attention than tagging onto old ones), we'll be happy to try to address your personal concerns.
Best of luck.
Thanks for this post it sounds like you have been going through the same thing that I have. I am interested in the same information. My THS Receptor Antibody is higher than ever and I am in a panic that it will do more eye damage. I had the strabismus surgery my vision is 80% better They seem to think the rest will straighten out within time. But with my levels so high I can feel pressure behind my eyes.
1 Comments
I'm sorry to hear that. I keep feeling as though I could adapt if only my vision would stop changing :) I'm assuming you're being tested regularly to see if Thyroid meds are accurate and wish you well. Maybe someone who's been through this can enlighten us!
Hello and happy 2016! I hope you are managing stress with success and that your health has continued to improve.
I had a total thyroidectomy 10/2015 and am working with my endo to find the correct med and dosage to replace thyroid hormone with some progress. I am writing to you because you mentioned your eyes and I am trying to learn what to expect with Graves Eye Disease, post thyroidectomy.
I've had surgery on one eye for strabismus (01/15) that occurred during Graves Eye Disease progression and the other eye began to cross about 6 months ago.
I have severe double vision and have strong prisms in both lenses, with frequent vision changes. Eye Dr. saw me after thyroidectomy and will see me again in 04/16 after vision has time to stabilize. Aside from how I see, I look pretty googly, but that is of less importance to me at this point.
This has had a huge impact on my capabilities, my life. How do you (or how did you) cope with the vision problems and how long after thyroidectomy did it take for your vision to stabilize? Did you have the decompression and lid surgeries and how were they for you?
I'd be grateful if you could share your experiences with these topics.
Thank you,
nceyes
I had a total thyroidectomy 10/2015 and am working with my endo to find the correct med and dosage to replace thyroid hormone with some progress. I am writing to you because you mentioned your eyes and I am trying to learn what to expect with Graves Eye Disease, post thyroidectomy.
I've had surgery on one eye for strabismus (01/15) that occurred during Graves Eye Disease progression and the other eye began to cross about 6 months ago.
I have severe double vision and have strong prisms in both lenses, with frequent vision changes. Eye Dr. saw me after thyroidectomy and will see me again in 04/16 after vision has time to stabilize. Aside from how I see, I look pretty googly, but that is of less importance to me at this point.
This has had a huge impact on my capabilities, my life. How do you (or how did you) cope with the vision problems and how long after thyroidectomy did it take for your vision to stabilize? Did you have the decompression and lid surgeries and how were they for you?
I'd be grateful if you could share your experiences with these topics.
Thank you,
nceyes
You are so right my friend. Dr, Christopher's immucalm cuts your immune system back just far enough to stop the self destruction that it causes no matter where it is in the body. You don;t want to pull the immune system back to far like one does with cortisone for obvious reasons. One has to take one teaspoon full of the powdered formula mixed in a little water 5 times a day. Now the other one that is just as important is his glandular formula. Make the tea and soak a muslin cloth or diaper in it and squeeze out just enough until it stops dripping and put it on your throat - several times a day. Cover this with plastic. 1 or 2 months of this is more of permanent relief with no returns.
If it is adrenal exhaustion, Dr. Christopher's adrenal formula (adrenetone) is superb. Also his Immucalm formula will take care of the anti bodies that causes Graves disease and causes the immune system to stop fighting itself.
The Immucalm needs to be 5 capsules 5 times a day.
The Immucalm needs to be 5 capsules 5 times a day.
I would love to have a copy of the article! Please desperately seeking understanding!
Medrequest has not been active on this Forum for a number of years, so it is unlikely that you will get a response from there. Is this the link you were looking for?
http://www.ncbi.nlm.nih.gov/pubmed/12970276
http://www.ncbi.nlm.nih.gov/pubmed/12970276
Hello
I just read your post although it is Nov 2014. Could you tell me if you were tested for anti-tpo and anti-thyroglobulin at this time and if you did , did you have higher than normal levels for someone who had thyrodectomy and RAI>
Also the link to the texts you mentioned would be great....
Thank you
Joanna
I just read your post although it is Nov 2014. Could you tell me if you were tested for anti-tpo and anti-thyroglobulin at this time and if you did , did you have higher than normal levels for someone who had thyrodectomy and RAI>
Also the link to the texts you mentioned would be great....
Thank you
Joanna
HI my name is Deirdre and I just had a consult with an eye specialist who wants me to go to Tufts University asap to have decompression surgery (well consult first) and says although I had my thyroid removed in 2007, I have severe case of Graves' Disease. I am scared and dealing with inept doctors-my story is so long that I was wondering if there was a way to talk to you more-I am now disabled due to severe fatigue and major eye problems-I wont even go outside b/c I am so embarrassed!
I worked as a paralegal for ten years til 2009-then home-then applied for SSI-got denied b/c some specialist said I did not have Graves anymore b/c I had my thyroid out! Well today I got the letter saying that was incorrect-I am at my wits end. Since my dx in 2002 I have never been euythyroid. I'm exhausted-my kids think I'm lazy-depression is deep.
I would love to tell my story as I think the information could help a lot but too tired right now.
Will try to check back tomorrow.
I hope u check back in.
Thanks, Deirdre H
I worked as a paralegal for ten years til 2009-then home-then applied for SSI-got denied b/c some specialist said I did not have Graves anymore b/c I had my thyroid out! Well today I got the letter saying that was incorrect-I am at my wits end. Since my dx in 2002 I have never been euythyroid. I'm exhausted-my kids think I'm lazy-depression is deep.
I would love to tell my story as I think the information could help a lot but too tired right now.
Will try to check back tomorrow.
I hope u check back in.
Thanks, Deirdre H
Hi, thank you for your effort in sharing all of that information. It was very helpful as I am thinking of opting for a thyroidectomy soon and need a good idea, past what the doctors say, of what to expect.
Thanks
Gina
Thanks
Gina
I had graves Disease for many years unknown and untreated. I wanted to take care of it naturally but I was too sick. I had surgery finally and thankful to better than I have in years. The muscle wasting vanished, the tremors stopped and my strength returned right away. The joint pains also subsided thankfully. I never had any eye problems. I am 11 months post-surgery and I am on generic levothyroxine 75 mcg.
I have found the best advise I was given to date for me is this: NO GLUTEN!!, minimize stress!!, and REST, REST, REST!! when I am tired! I eat NO SUGAR, NO CAFFEINE, NO PROCESSED FOODS, NO PRESERVATIVES... I eat REAL food - I can't afford organic but I can eat raw fruits, raw vegetables, eggs, meats, gluten free carbs, and use a little raw honey, pure maple syrup or agave for a treat once in a while. It was NOT easy but it is worth it because I feel so much better eating REAL food. I also take a good vitamin. I switch off of two different brands for no real reason. I use Peter Gillham's liquid vitamins because my chiropractor carries them and vitamins from womentowomen.com which I really like they but are more expensive. I had thinned, breaking hair and these have made the difference in that.
I also QUIT using shampoo after reading an article that shampoo is actually hard on your hair and I found that to be true for me even trying the shampoos that promised deep conditioning, to fix breakage, etc. It seemed that while my scalp got greasier quicker the ends just became drier. I scoured the internet and came up with my own recipe that used a blended mixture of avocado, honey, yogurt, egg and olive oil and it helped some until I washed my hair again. I tried the "no 'pooers" movement and after the "not sure I liked it" 2-3 week transition period I am so thankful I tried it and I intend to stay with it! My hair looks so much better! I usually wash in the shower and I pour over my head 2 TB baking soda in 1 cup warm water and work it into my hair like you would shampoo for about 3-4 minutes. I rinse it very, very well for several minutes. After that I pour a rinse of 1 cup warm water with 2 TB apple cider vinegar in it. It immediately softens your hair like conditioner but without the weight of conditioner. I have been doing this for 2-3 months now and am very satisfied. I have used shampoo 3-4 times after I worked out in the yard becaue I was not sure the other would get my hair "clean" enough for me but am not as happy with how my hair looks after I use shampoo as when I use baking soda wash and vinegar rinse. I don't notice any vinegar smell and my hair smells very, very clean - don't know how but it does!
So, all in all - I am thankful I had surgery - I went to Mayo Clinic in Rochester, MN and though it was not without mishap (I had an emergency surgery due to a complication only hours later - they cut a small artery going in and left it slowly bleeding which in a few hours time became a serious problem!) I am doing fine. I will never be what I was before I got Graves Disease BUT I am also years older than I was before I became sick. With watching my diet, going to bed early, napping when I am tired, watching my attitude towards others which really alleviates a lot of stress, doing a little exercise like stretching (Graves Disease seemed to make my muscles tight and they still are but getting better, too!) and simple bike rides and walking ( I taught fitness classes and personal trained for 20 years at a YMCA and our University here) I am improving and have a better quality of life than I thought I ever would again. DO WHAT YOU CAN DO TO HELP YOURSELF! It is empowering and positive!
I have found the best advise I was given to date for me is this: NO GLUTEN!!, minimize stress!!, and REST, REST, REST!! when I am tired! I eat NO SUGAR, NO CAFFEINE, NO PROCESSED FOODS, NO PRESERVATIVES... I eat REAL food - I can't afford organic but I can eat raw fruits, raw vegetables, eggs, meats, gluten free carbs, and use a little raw honey, pure maple syrup or agave for a treat once in a while. It was NOT easy but it is worth it because I feel so much better eating REAL food. I also take a good vitamin. I switch off of two different brands for no real reason. I use Peter Gillham's liquid vitamins because my chiropractor carries them and vitamins from womentowomen.com which I really like they but are more expensive. I had thinned, breaking hair and these have made the difference in that.
I also QUIT using shampoo after reading an article that shampoo is actually hard on your hair and I found that to be true for me even trying the shampoos that promised deep conditioning, to fix breakage, etc. It seemed that while my scalp got greasier quicker the ends just became drier. I scoured the internet and came up with my own recipe that used a blended mixture of avocado, honey, yogurt, egg and olive oil and it helped some until I washed my hair again. I tried the "no 'pooers" movement and after the "not sure I liked it" 2-3 week transition period I am so thankful I tried it and I intend to stay with it! My hair looks so much better! I usually wash in the shower and I pour over my head 2 TB baking soda in 1 cup warm water and work it into my hair like you would shampoo for about 3-4 minutes. I rinse it very, very well for several minutes. After that I pour a rinse of 1 cup warm water with 2 TB apple cider vinegar in it. It immediately softens your hair like conditioner but without the weight of conditioner. I have been doing this for 2-3 months now and am very satisfied. I have used shampoo 3-4 times after I worked out in the yard becaue I was not sure the other would get my hair "clean" enough for me but am not as happy with how my hair looks after I use shampoo as when I use baking soda wash and vinegar rinse. I don't notice any vinegar smell and my hair smells very, very clean - don't know how but it does!
So, all in all - I am thankful I had surgery - I went to Mayo Clinic in Rochester, MN and though it was not without mishap (I had an emergency surgery due to a complication only hours later - they cut a small artery going in and left it slowly bleeding which in a few hours time became a serious problem!) I am doing fine. I will never be what I was before I got Graves Disease BUT I am also years older than I was before I became sick. With watching my diet, going to bed early, napping when I am tired, watching my attitude towards others which really alleviates a lot of stress, doing a little exercise like stretching (Graves Disease seemed to make my muscles tight and they still are but getting better, too!) and simple bike rides and walking ( I taught fitness classes and personal trained for 20 years at a YMCA and our University here) I am improving and have a better quality of life than I thought I ever would again. DO WHAT YOU CAN DO TO HELP YOURSELF! It is empowering and positive!
Hello,
I am happy to have found this forum, It has a lot of important information that will help me with my decision.
I have been diagnose with grave disease for about 7 years now. I have been on tapazol and propranol on and off because I hate taking meds and I am not that dicipline when it comes to my health. Doctors have told me over and over that it would be the ideal thing for me to do the RAI. I chose not to do it because of the many side effects... I continue to have palpitation and my biggest fear is ending up with a stroke. ( God forbid)
I would like to have surgery and after reading everyone's post, now I am scared. I am not sure of exactly what to do...I don't have nodule but my thyroid are enlarge and very noticeable.
Does anyone have any advice for me please?
Desperately seeking a better solution.
I am happy to have found this forum, It has a lot of important information that will help me with my decision.
I have been diagnose with grave disease for about 7 years now. I have been on tapazol and propranol on and off because I hate taking meds and I am not that dicipline when it comes to my health. Doctors have told me over and over that it would be the ideal thing for me to do the RAI. I chose not to do it because of the many side effects... I continue to have palpitation and my biggest fear is ending up with a stroke. ( God forbid)
I would like to have surgery and after reading everyone's post, now I am scared. I am not sure of exactly what to do...I don't have nodule but my thyroid are enlarge and very noticeable.
Does anyone have any advice for me please?
Desperately seeking a better solution.
COMMUNITY LEADER
Also meant to say that you'd have to talk to your opthamologist about the eye problems. It may depend on how severe it is.
COMMUNITY LEADER
Once the thyroid is removed, there's nothing for the antibodies to attack, since they don't move on to other organs. It may take some time, but they will go into remission, eventually; but even if they didn't, there's no more damage they can do, without thyroid tissue to attack.
Since there are no "natural" cures for thyroid disease and once the thyroid has been damaged there's no way to repair it, many people end up having theirs removed.
Wishing you the best.
Since there are no "natural" cures for thyroid disease and once the thyroid has been damaged there's no way to repair it, many people end up having theirs removed.
Wishing you the best.
Thank you for your comments. Are you sure the antibodies will go into remission? Will the eye problems subside? I am thinking of having my thyroid removed in time. Best wishes. Rose
COMMUNITY LEADER
I see you figured out how to start your own thread. I've responded to one of them.
Hi there. I wish to start my own thread but am new to these types of forums. How do I start a thread please?? many thanks
Oh little sister! What a horrible horrible frightening experience!! Thanks for posting! It was long to read but you had to explain properly and thank you so much for that. These types of stories only make me more determined NOT to be sliced open and have a vital organ ripped out. Our bodies are designed to heal themselves I believe. And with Graves the thyroid is so so sick that it needs HELP and not to be killed off!!
My fight continues!!
Take care and I hope you are feeling better!!
My fight continues!!
Take care and I hope you are feeling better!!
Thank you for your comment!! I am one of the idiots with SEVERE Graves and resumed smoking on diagnosis. Your comment made me chuckle and then I decided enough was enough. I will stop smoking so many thanks for that. By the way I have opted to have no operation and will not be having radiation. I will be seeking all things holistic and my specialist estimates I have a 30% chance of getting better in two years. Well I shall take those odds thank you very much. From my research it seems having the total thyroidectomy causes more hassle than trying to actually HEAL the thyroid which is what I plan to do. The docs these days always go for quick fixes. It soooo angers me!!
COMMUNITY LEADER
AR-10 has not been active on the forum for several years, so I'm sure he won't respond to your questions.
Being an autoimmune disease, Graves is incurable. Once the thyroid is removed, the antibodies will go into remission, but you still have the disease.
Graves disease doesn't lead to other autoimmune diseases, but once a person has one autoimmune, the chances of getting another, become greater.
Thyroid antibodies only attack the thyroid; they don't refocus on another organ, once the thyroid is gone.
Being an autoimmune disease, Graves is incurable. Once the thyroid is removed, the antibodies will go into remission, but you still have the disease.
Graves disease doesn't lead to other autoimmune diseases, but once a person has one autoimmune, the chances of getting another, become greater.
Thyroid antibodies only attack the thyroid; they don't refocus on another organ, once the thyroid is gone.
Dear AR-10,
What research have you found that indicates that Graves disease is incurable and that it can lead to other auto-immune diseases?
Also, have you found research indicating which other tissues or organs can become the focus of the auto-immune issue after a thyroidectamy for Graves'?
Thanks,
DMK
What research have you found that indicates that Graves disease is incurable and that it can lead to other auto-immune diseases?
Also, have you found research indicating which other tissues or organs can become the focus of the auto-immune issue after a thyroidectamy for Graves'?
Thanks,
DMK
Thanks annajonas63! I just feel like such a freak I've seen four doctors that specialize in bulging eyes and they all say that my condition isn't bad enough for surgery. That even though I can't close them at night, etc. that no one in their right mind would operate on me because the risks are too high. All of the doctors I've seen in Ct. are so mean. They make me feel like I am wasting their time, they have no idea what this disease has done to me and how sick it has made me. Sometimes I wish they would have a little compassion, oh well. The only treatment that one doctor is willing to do for me is the high level of steroids, which he said will make me fat etc. So that's unfortunately the only treatment that's being offered to me at this time. I'm very happy for you though. Sounds like you have really good doctors in AZ, and hope everything works out for you in the future. Thanks again!!
Thanks annajonas63! I just feel like such a freak I've seen four doctors that specialize in bulging eyes and they all say that my condition isn't bad enough for surgery. That even though I can't close them at night, etc. that no one in their right mind would operate on me because the risks are too high. All of the doctors I've seen in Ct. are so mean. They make me feel like I am wasting their time, they have no idea what this disease has done to me and how sick it has made me. Sometimes I wish they would have a little compassion, oh well. The only treatment that one doctor is willing to do for me is the high level of steroids, which he said will make me fat etc. So that's unfortunately the only treatment that's being offered to me at this time. I'm very happy for you though. Sounds like you have really good doctors in AZ, and hope everything works out for you in the future. Thanks again!!
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