Graves' Disease Support Group

Graves-Basedow disease is a medical disorder that may manifest several different conditions including hyperthyroidism (over activity of thyroid hormone production), infiltrative exophthalmos (protruberance of one or both eyes and associated problems) and infiltrative dermopathy (a skin condition usually of the lower extremities). This disorder is the most common cause of...

767 Members

5,956 Posts

0 Online

Gillma 09/11/2017

Hi,

I am new to this site. I am hoping that there are people out there who have had a thyroidectomy and feel really well. I have had Graves Disease for about 9 years now and have been treated with Carbimazole on four occassions always going into remission for a while. However, this summer whilst in remission I was admitted to hospital in thyrotoxic crisis or thyroid storm. It all happened so suddenly. It was a seriously frightening experience and the doctor who treated me in A&E said it was a good thing I had arrived at the hospital when I did. So now I am facing either Radioactive Iodine or Thyroidectomy. I have looked online and all I can see are horror stories of people never feeling really well again. Please if anybody is out there has had successful treatment I would love to know about their experience. I am petrified of making things worse than they are or never feeling well again. Good luck to all who suffer with thyroid problems and I hope you all find good health. I don't think anybody really understands how much trouble this tiny little organ can cause unless they have experienced thyroid problems.

Candi 09/11/2017

Hi Gillma. I've had Graves 7 years and have been treated with methimazole 3 or 4 times now. I'm planning on doing this as long as possible. I don't have any experience w thyroidectamy, although my aunt had hers removed so I will ask her how life compared before and after and let you know.

How quickly did the thyroid storm come on? Was it abrupt or did you start to notice symptoms long before having to go to the hospital?

mmztcass 09/11/2017

Hi:

I moderate at another thyroid board which we stress on avoiding all dietary and environmental triggers that can set off the thyroid. My triggers are avoiding chemical and processed foods as much as possible and eating organic without any chemicals and toxins. I also have had to replace a lot of cleaning products in my house to be less chemicals as well as avoiding the personal products containing the chemicals. Our skin is the largest organ in the body and can absorb so much from all the harmful stuff it is exposed to.

So basically going organic and Non-GMO is the key to healing my thyroid as much as possible.

{{{hugs}}}

livingly 09/16/2017

Hi I have Graves' disease to. I don't know if this will help but I've heard that people with thryoiedectomys can go on to live long full lives.

liz1967 09/20/2017

I had a total thyroidectomy 6 months after diagnosis of Graves. I felt so much better right away. Within six months, my levothyroxine dose was stable. That was over four years ago and I feel totally normal, exactly like I did pre Graves. No special diets, no weird symptoms, no weight gain or loss, no worry about thyroid cancer. The actual surgery was easy. I have no regrets at all, only that I spent six months on methimazole feeling bad. I get labs yearly. I forget most of the time I have Graves, except for the minor residual eye issues post eye surgeries. People who feel well seldom come on these forums, thus you dont see a lot of post TT people. I have not been here in over three years myself. It was great putting all the Graves stuff behind me.

tlinaluski 10/13/2017

I'm also facing a tt. My surgery is next Thursday the 19th. I've had Graves for 10 years and now have a large nodule on my left lobe that needs to be removed! I'm so scared and pray I feel better. Have you scheduled yours yet?

Join the Conversation