# Graves confirmed today. RAI or thyroidectomy?



## BaylorBear (Oct 20, 2015)

Hi all,

I had a thyroid uptake scan today that confirmed that I do have Graves disease. My hyperthyroidism started in 2008 and since then I have been on and off of medicine as needed. I did have some long stretches of time where I didn't have to take any medicine and I felt fine. I started feeling sick again in July and had my levels tested and my TSH was <0.01. T3 and T4 were also out of range.

The doctor today talked to me after they took the first picture and wanted me to do RAI immediately! I told him that I have never been comfortable with the idea of RAI, and that I would rather just have my thyroid removed. I'm not sure why I feel like that, I just have ever since they mentioned in 2008 that I may need to destroy/remove my thyroid. I do realize that surgery involves risk as well, and I am not sure what to do! Do you have any advice or experiences with RAI or thyroid removal that you would like to share?

Thanks for your help!


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## webster2 (May 19, 2011)

I was never comfortable with RAI and had heard it may take more than one dose. Thyroid surgery is not a terrible surgery, as far as surgeries go. Either way getting the correct dose afterward can be a process but it is worth it.


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## Lovlkn (Dec 20, 2009)

RAI may require more than one dose, it's harder to stabilize thyroid replacement, if you have eye involvement then you run the risk of making it worse.

Surgery has some risks , make sure your surgeon is qualified performing 4-5 surgeries weekly- it's a one and done procedure and life goes on - easier to stabilize replacement


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## joplin1975 (Jul 21, 2011)

Thyroidectomy, for sure.


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## Andros (Aug 26, 2009)

You should do what your instincts tell you to do. For one thing, this way, the pathologist can see if you have anything cancerous going on.

W/RAI, it is unlikely that you will ever know. Also, I had advanced Graves' and I think you do also. RAI is not good for the eyes and further more, I personally had to have RAI 3 times at intervals as the gland refused to give up the ghost!

Hugs,


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## BaylorBear (Oct 20, 2015)

Thanks, everyone!! I appreciate the advice! My husband would prefer it if I did the RAI, but I'm just not comfortable with it. He did say that ultimately it is up to me and he would support whatever I decision I made. I am definitely leaning towards the thyroidectomy! I think I will do a little more research and then try to make a decision. Thanks for your help!


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## Octavia (Aug 1, 2011)

Because of your screen name here, I feel compelled to give some unsolicited advice. I know Baylor has a medical school...so there's probably a teaching hospital or two in the area, assuming you live in/near Waco. Based on my own experience having my two surgeries done at a teaching hospital, I would absolutely advise against going to a teaching hospital. It was obvious after my second surgery that students had completed at least some of the work because the stitches, end knot, and drain looked completely different and "unprofessionally done" compared to what I saw after my first surgery. My second surgery was also the source of voice problems that still bother me nearly 5 years later. Had I known then what I know now, I would have chosen a different surgeon at a different hospital, one where I know EXACTLY who is operating on me. Hoping others can learn/benefit from my not-so-great experience.


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## BaylorBear (Oct 20, 2015)

Thanks for sharing that, Octavia! That is great advice and definitely something to keep in mind! I am sorry that your second surgery did not go as well as your first.

I am already a patient at a top-ranked cancer facility (for a different issue), so I am thinking about seeing if I can meet with a surgeon in their Head and Neck dept. I called them today, and they said that while they mostly deal with thyroid cancer, etc., they may be able to do my thyroidectomy. My doctor has to put in a referral for me and then I can have a consultation with them. Hopefully it will work out!


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## webster2 (May 19, 2011)

My surgeries were done in a teaching hospital as well. The hospital web site had bios of the surgeons. One of them trained at the Cleveland Voice Center. It was very helpful to know all of this before I asked them how many surgeries they did per week along with my many other questions. Ask your questions and if you don't feel good about someone, keep shopping, or kissing frogs.


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## ThyroidMan (Dec 26, 2015)

Neither!!! Look up how to heal leaky gut and changing your diet can control grave's disease. If anything partial removal of the thyroid is better than full removal. You fully remove the thyroid then the immune system attacks something else. You can destroy your health and live the nightmare that I do, or you can put in the hard work of changing your diet and controling the disease. Once you get rid of the thyroid theres no turning back and you WILL NOT feel the same ever again. The best you'll feel is like 90% of how you would normally feel. There are alternatives, don't believe these doctors they just want you on their meds so they can pay for their kids college lol.


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## blackngold (Oct 28, 2011)

Lol thyroid man is this true about the leaky gut ?!


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## Mike1973 (Feb 25, 2016)

I'm aware of leaky gut and Paleo diets that address it and go pretty Paleo myself. That said, I totally disagree with what you said. I had a TT about 8 weeks ago and feel way better than I did with the thyroid intact (on levothyroxine) and the whole thing of removing the cancer that was growing in my body. And my immune system hasn't attacked any other part of my body. People should do their due diligence with regards to treatment and take internet advice with a grain of salt.



ThyroidMan said:


> Neither!!! Look up how to heal leaky gut and changing your diet can control grave's disease. If anything partial removal of the thyroid is better than full removal. You fully remove the thyroid then the immune system attacks something else. You can destroy your health and live the nightmare that I do, or you can put in the hard work of changing your diet and controling the disease. Once you get rid of the thyroid theres no turning back and you WILL NOT feel the same ever again. The best you'll feel is like 90% of how you would normally feel. There are alternatives, don't believe these doctors they just want you on their meds so they can pay for their kids college lol.


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## GandKsmommy (Feb 15, 2016)

My aunts both had their thyroids removed and do fine. I have had some issues with medication regulation, but that is because I had my thyroid out and then two kids back to back. My crappy former endo had my tsh levels tested post partum and because they were within the 2 range, he said to come back in a year. I ended up going really hypo 6 months after that. My obgyn was shocked he didn't have me go every 3 months. Any other type of hormonal change in a woman's body can affect thyroid levels...pregnancy, perimenopause, menopause, birth control pill, etc. Just be proactive and stay on top of your levels bc you can't count on a busy dr to do it. I also know people with Hashimotos and that's all they have and I also know people who have it and other autoimmune disease. I know some people with Graves' disease and that's all. I really think stress affects people negatively, as well as diet, but stress is huge. I was on a cycling bike 3 weeks after I had my son, and 2 weeks after my daughter. I hiked up 3.9 miles up hills the day in went into labor with my son. You can feel well, the key is being diligent about your levels. Sometimes, I feel like I may tire a little more easily here and there, but then I just listen to my body and rest. Good luck!


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## ThyroidMan (Dec 26, 2015)

Mike1973 said:


> I'm aware of leaky gut and Paleo diets that address it and go pretty Paleo myself. That said, I totally disagree with what you said. I had a TT about 8 weeks ago and feel way better than I did with the thyroid intact (on levothyroxine) and the whole thing of removing the cancer that was growing in my body. And my immune system hasn't attacked any other part of my body. People should do their due diligence with regards to treatment and take internet advice with a grain of salt.


if you have cancer then yeah, regardless of what you know of leaky gut, you should prolly get the thyroid removed. I dont think healing the gut will help you there.


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## runninginthewind (Jun 5, 2016)

Good Morning,

Years ago I was diagnosed with being hypo - Over the last few months my thyroid levels have gone completely nuts into the hyper range. I came off of the medication and my levels didn't not drop not any. This past week I have was diagnosed with Graves. I am still off of any medication except for a beta blocker. The first of July the doctor is going to have the uptake test run and I have to be off of my medication for a month.

My questions regarding treatment are as follows:

1) Is there a course of medication that you can take to stabilize the graves?

2) RAI treatment- percentage of being successful - (I'm very allergic to shellfish so would the iodine in this treatment be an issue)

3) Removal of thyroid (I am getting ready to yank the thing out myself) What is the recovery time? The success rate?

Any information would be great.

Thanks


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## Lovlkn (Dec 20, 2009)

Do you by chance have TSI antibodies?

Uptake tests are becoming a thing of the past - the main reason to run one is to determine the amount of RAI dose should you go that route to ablate

your thyroid.

As far as having hypo, then hyper symptoms, sometimes having both TPO and TSI antibodies -> causes hashitoxicosis. Your symptoms will reflect what antibodies are active at the time. I was DX'd with hashitoxicosis after my surgery by surgeon due to the fact my thyroid was completely destroyed. I had TSI 325% and TPO antibodies over 2000 at time of surgery.

I would highly suggest surgery over RAI , surgical removal renders you immediately hypo and dialing in proper replacement dose is much easier without a thyroid. Also, should you opt for RAI - you may need several doses as their calibration of dosage for RAI can sometimes be off requiring several treatments.


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## runninginthewind (Jun 5, 2016)

Sorry for the delay in responding to the antibodies test - I was waiting for them in the mail:

Thyrotropin Receptor Ab, Serum - results 5.88 - range 0.00-1.75

Thyroid Peroxidase (TPO) Ab - results 17 - range 0-34

Uptake scheduled for next month


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## Lovlkn (Dec 20, 2009)

Uptake is going to tell them what dose RAI to give you - if that is your direction then it's a good thing to have, however if you are considering surgery - then it's not necessary.

I never had RAI Uptake and understand it is not being used as often for diagnostic purpose.


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## blackngold (Oct 28, 2011)

Uptake and scan can also tell you if you have hot nodules or cold


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