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I need some advice

christy1228
0 Recommendations

I seen my doc this past Tuesday and he scheduled me for an iodine uptake test which will be completed today. He is urging me to do the RAI possibly next week to kill the thyroid. I am very skeptical on doing the RAI. My gut tells me not to do it and that I should do the surgery. I know that both have risks and complications. I know every person is different. I just need to know from anyone that has had either done and what their opinions are. Much help would be greatly appreciated.

Explore topics in this discussion:

Hyperthyroidism Cancer Tylenol Surgery Goiter Atenolol Pregnancy Fever Synthroid Pain Prednisone Memory Graves' disease Stress

23 replies

Carerra

I had a thyroectomy two months ago. After a few days of coming home, I had to go back to the hospital because my calcium levels were so low, my whole body was tingling(like pins and needles) even on my face. It was horrible. I have gained 12 pounds. At the beginning I was feeling very tired and cold/hot. I don't feel that way however the tingling and numbing is still there, although mild; it's still there. My scar doesn't bother me. However I still feel as my neck is tight and when I swallow feels as thought everything is pulling together. My biggest issues are the same what disconform still with my neck, my weight gain (i am not regular as I used to be)and the calcium levels still being low.
You are right, we are all different. I would really follow my gut, which is what I did.

christy1228

Thanks Carerra for your story and I hope you continue to improve. I start back to school this summer I hope I can get this under control before I go back. Best wishes Christy

precious

I had both the surgery and the RAI. With the radiation treatment you would be put in isolation in the hospital for several days. That experience can be very depressing. The surgery went without any hitches but takes time and patience to recuperate - as does any surgery. Both treatments are do-able with support and patience.

christy1228

Hey precious thanks for the insight. The doctor told me that after the RAI treatment I will be sent home that day. I worry about this because I have a 2 and 4 year old. I don't want to expose them to the radiation. On the other hand my mother lives in the area and said I could stay with her. Thanks

BrandyAnne

You have other options besides RAI ~ I was going to use the RAI as my treatment..then I freaked out about it. I will be taking an anti-thyrod medicine. At lesst for the first year or two of treatment. And if that fails, I will have to take the RAI treatment. Ask your doctor if you have options. It's also known that the RAI can cause damage to your ovaries. Whether you do or don't want to have anymore children, why do the extra damage to your body that is uneccessary? I LOVE the weight loss I had, but I felt crappy the whole time. I know I waill gain the weight I lost back, but you can maintain a healthy figure by just changing your diet and excersise. I have a few friends who had Hyper-thyroidism and they didn't turn super-fat from their treatment. Please ask your doctor for other options. Like you said taking the RAI will make you have to keep distance from people and pets. You'll have to wash your clothes daily, and sheets. Why take the chance of doing it if you don't have to? Good Luck!

christy1228

Well the nurse called yesterday and confirmed that the test showed I did have hyperthyroidism and the doctor said to continue with the treatment plan which is the RAI. I told the nurse that I had thought long and hard and I did'nt think the RAI was not right for me at the moment especially with my children being so young. I asked about the surgery and if that was an option and she said she would ask the doctor. So that's where I am at at the moment. I hope I will get an answer any day now. I'm ready to be thyroid free and start the medications for hypo. I know that may sound bad but I feel the worse I have felt in my whole life. Thanks to all that have responded I wish you guys the best and I look foward to the future contacts.
Christy

Long2Bhealthy

Hi Christy,
I am having RAI treatment in 2 days and it is taking all of my strenth to go through with it. After 2 years of misdiagnosis with optical problems, and nearly losing vision in my left eye...I now have real diagnoses. Hyperthyroidism (Graves) and thyroid eye disease. I am ready for results and do not like the option of antithyroid medications for me. They will lower my immune system, which is already compromised, and make me susceptible to illness. I babysit my Granddaughters weekly, and would hate if I couldn't be with them for each little cough or fever. I will miss them for a few weeks immediately following treatment, but this is a necessary step to get my throid in order so I can repair my eyelid retraction. When the stabbing pains started to spread to my good eye, I decided I must do this. I am scared because it is contrary to common sense-stay away from radiation...but in the proper small dose, it will stop my overactive gland and improve my racing heart, weight loss, trembling hands, and all of the other symptoms. I have great family support as they have been through the past 2 years with me. I hope you have family support with whatever you decide is right for you.

christy1228

Long2Bhealthy good luck with the RAI let me know how everything goes. I have not heard from my doctor yet. He was suppose to contact me last week but I guess he got busy. I'm hoping we can get this on a roll before I start back to school. My concentration and memory is not at it's best right now. I hope I hear something this week.

danna

DON'T DO IT!!! I did and my life has been hell ever since. They tell you that you will just have to take a pill the rest of your life and all will be well. I you go to about.thyroid you will see that all is never all right again.
do all you can to heal your thyroid. Get accupunture. Get help for stress. But do not have this done. It will destroy your life.

boysx3

I was diagnosed with hyper thyroid (Graves) last fall (08). By the time I "got around" to seeing a doctor I was in pretty bad shape, shaking hands, rapid heart rate, memory loss, hurt to swallow, heat intolerance and an all around different person than i normally was (very agitated and intolerant). The first thing the endocrine did was an ultrasound. I had a huge nodual, I was put on Tapozol and I responded wonderfully to it. Within 6 weeks my husband looked at me and said "it is nice to have you back".
My levels are still not perfect, but my doctor and i are working together to get it right.
I went to the Dr. today and we had a lengthy discussion on treatment options. She indicated that at one time the routine treatment was the killing of the thyroid, however she now believes that a patient should be on medication ( if tolerated) for two years. Then 1 in 4 patients go into remission. For now I will continue to take Tapozol and see my endocrinologist every two months.

Has anyone experience weight gain while on Tapozol? I gained 11lbs in the last two months!! The doctor decreased my dosage to 10mg daily, hopefully this will help. She indicated her goal was to get me on the lowest effective dosage.

Good luck, and i believe your "gut feeling" is usually correct.

danna

when i had it done i was told to stay away from children and any women who might be pregnant for five days and i had to wear a wristband that said i was radioactive but i went home

christy1228

Well The doctor called on Friday for my decision. I told him that after long concideration that I want to get this over with and that I wanted the surgery. I told him I think that would be the best option for me since my husband is away for 24 hour shifts. I do not want to be away from my children for days at a time. He told me that he was on call this weekend and he would start setting everything up. He said he would call me back on Monday with the next steps. I will keep everyone informed of what happens and what kind of test I will have to go through. I think I have made the right decision at this time. Thanks for the support you all are great.

Nanners

It seems that your doctor was rushing you to make a serious decision. Schedule RAI before you even get all of your results? I was told by my specialists that the RAI is no longer recommended for anyone who plans to live a few decades after treatment as it has recently been found to increase cancer risks within a few decades of treatment. I am going to have the surgery soon to get a partial lobectomy and hopefully it will go well. I have heard some good stories from people who had it and recovered well. Good luck to you whatever you choose.

christy1228

Thank you Nanners I did not know that about RAI. Luckily I had surgery this past Friday and it went great. I was out of the hospital the next day and I was feeling really good. I am still a little sore and I'm starting to feel the effects of being Hypo, but I am great. Good luck to you.

Nanners

Wow, I am glad to hear that your surgery went so well! I hope that your good recovery will continue and that you won't have too many problems related to hypo.

I am going to have the surgery in July and I hope you don't mind if I ask you a few questions....I understand if you will not want to answer them.

--Has it affected your voice much?
--Has there been a lot of scarring?
--Did they give you any advice about how to strengthen your immune system to prepare for the surgery?
--Did you need a lot of help from family after-wards?

I am feeling a bit nervous, but mostly about the possibility of my nodules being cancerous. The chances are supposed to be low based upon my specifics, but any chance is uncomfortable. Hopefully I will not be hypo after-wards as we are only planning to take one lobe, unless they find cancer.

Thanks for sharing your story with us, it makes me feel a lot better to hear how other people have been dealing with their thyroid issues.

christy1228

Again thank you Nanners and I don't mind telling you how my recovery has been. I do get a little hoarse when I talk to often. They will tell you just to rest your voice for awhile. The incision itself is not bad that I can tell I still have the glue band on, but my doctor did do plastic surgery procedures to minimize scarring. You will have a sore throat after surgery for a couple of days. Also when you swallow you may feel like there is a lump in your throat I was told that was normal due to the drain tube and the swelling. The hospital will give you ice packs for the incision and they do work very well. My drain tube was taken out the following day before I was discharged and it did not hurt. You may feel that you have some congestion in your throat for a few days I still do but it helps if you cough it up. I don't have a sore throat at this point but the muscles in my neck are sore especially around the incision. When your neck is bandaged it will be hard to hold your head upright you may feel that is more comfortable to hold your head slightly tilted down. But as your able to move around the stiffness will go away. A week before surgery I was prescribed prednisone and Iodine to supress my thyroid since it was hyper. I have two small children at home and my husband helped me out with them. To tell you the truth I was cleaning the day I got out of the hospital. I have to keep myself busy so I don't get tensed up which can make me more sore than what I am already. I was prescribed Perc. 5 for pain I think I have taken three of those, and I have a really low pain threshold. I take a couple of tylenol 3 times daily to keep the swelling down. I am very happy that I had a total thyroidectomy and would di again if I had too. The best advice I can give go with your gut and trust your nurses because they will be your lifeline. The nurses were so great they brought me things to help with every discomfort I had including, ice pops, apple sauce, ice packets also the diapers with Ice are the best because there soft and they conform to your neck. And if your in pain don't wait until it gets so bad you start shaking let them know early so they can give you something. The more you rest the faster your body will heal. I wish you the best of luck and let me know how everything goes...

Nanners

Thank you so much! It is really encouraging that everything is going so well for you. I really appreciate you sharing and wish you the best of luck!

christy1228

Thank you Nanners and I wish you the best and keep me updated on what you decide to do... Best wishes

steviemac

Hi Christy, Wow this the first time I read this, hope you are feeling good...My name is Steve and I found out that I have all the things that come with Graves...Can't sleep, uncontrollable emotions the whole 9 yards..Found out that its mostly a female disease and its like 2 out of 10 for men...My doctor told me that surgery might not work for me because I waited to long before I went to the hospital...its a man thing, thought it was just a swollen gland that didn't go away, but then my heart was racing faster and faster so I had to go in..Now my life is upside down, I am trying to get as much info as I can...I just turned 40 and I don't want surgery, I take methiamzole 3 times a day at 10mg..my swollen neck (that was the size of a tennis ball) has gone down a lot, my eyes are starting to get back to normal. I am getting used to my pills, but I forget sometimes...I really want to know how you are doing...If you are feeling great, then I have to think about everything....Thank you and a speedy recovery

Valarie

Hi Christy,
I just wanted to say, I'm glad that you chose the surgery. I have Graves disease, and had RAI. It probably wasn't the best choice for me, but at that time I thought it was. They don't recommend that some still the child rearing years have RAI, as it can complicate pregnancy. I also have TED, and it too can become worse due to RAI. So I think you made a wise choice. Although you have had surgery there is always the rare chance that your thyroid can grow back, unless it is followed my RAI, so if you start to feel like your old Graves self sometime in the future please see your doctor. You might also find the Graves disease foundation on the net helpful. Good luck,
Valarie

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