[BClark]

#1059804

Hi everyone,

I am newly diagnosed. I am 52 and live in Kansas City.

I had an uptake(?) done last week and was told I have Grave’s Disease. I was losing so much weight and so hungry I thought I had a parasite. I still feel feverish but was told that is the disease too. I have already gone through menopause so I know what a hot flash is…this is not like that. I feel warm all the time and have for a few weeks. They told me it would get better eventually with the pills. It has been 3 weeks and I still feel hot.

Today my doctor’s assistant called me and said my insurance ONLY covers radioactive iodine as a treatment, besides the PUT pills he put me on.

I am scared but so many other people have had success with it. I live alone so I know the isolation will be easy, but radiation scares me. I trust my doctor but it is radiation. My mom had breast cancer and that concerns me.

Reading the posts here have made me feel better but I feel like my right to choose has been taken away from me by the insurance company.

Has anyone fought for the surgery and won?

Do I really have any reason to be afraid. I read there are conflicting points of view on here so if anyone wants to message me instead of posting, that is ok too. I do not want to cause a fight, I just want to know what you think I should do.

Thank you and God bless,
Brenda

[Kimberly]

#1177721

Hello and welcome!

Hopefully, you will receive some additional responses here from others who have had to deal with insurance company battles.

If you are interested in pursuing surgery, one thought might be to do a consult with an experienced surgeon and ask that individual to work with your insurance company. We interviewed a thyroid surgeon for a newsletter article a year or so ago – and she mentioned that she had never had an issue with getting coverage for her patients.

There are pros and cons to all three treatment options (RAI, surgery, and anti-thyroid drugs) and we welcome open discussion here on everyone’s experiences. Our guidelines are that posts and PMs should not be designed to give medical advice – and any links posted need to come from a credible, peer-reviewed journal or a major medical association. (And if you receive an inappropriate PM from another user, please feel free to report it to the GDATF at info@gdatf.org).

The “Treatment Options” thread in the announcements section of the forum has some great info on the risks and benefits of the three options.

Obviously, we’re fellow patients here, not doctors…but did your doc discuss the other anti-thyroid drug (Methimazole, generic Tapazole) with you? In *rare* instances, anti-thyroid drugs can cause serious side effects with liver or white blood cell count…and Methimazole is believed to have a better safety track record than PTU.

Take care – and please check back to let us know how you are doing!

[adenure]

#1177722

I would do what Kimberly said and consult with a surgeon. Given your mom’s history of breast cancer, you probably have a good case to bring up to your insurance company for pursuing surgery. When you talk with the surgeon, share that info. so he/ she can inform the insurance company. Also, many states offer financial help too. I paid for my surgery out of pocket. I had insurance, but didn’t like the surgeon I had to use. So, I went out of the network. The hospital arranged a payment plan over 2 years (no interest bc it’s medical). The total (in Connecticut) for everything (doctor appointments, anesthesia, hospital, labs etc) was $11,000. It might be worth trying for if you prefer a TT to RAI.

[Kimberly]

#1177723

Thanks, Alexis – This is great info for me as well…my insurance won’t cover anything thyroid-related, so if I ever decide to have surgery, it will be 100% out of pocket.

[amosmcd]

#1177724

Hi, Brenda–

I, too, am terrified of radiation because my Mom and my Grandma and her first cousin all had breast cancer. My insurance covers any type of Graves’ treatment, so I’m fortunate that way.

I was worried enough about the risk of radiation that I saw a Breast Cancer Genetic Counselor. My mother had triple negative breast cancer, which is a very aggressive form, but my Grandma and cousin did not. My Mom did not get tested for BRCA 1 or 2 genes. I’m not sure why. She passed away a couple of years ago of esophageal cancer. The thought of radiation near my esophagus and breast is very scary. The genetic counselor said he himself avoids as much radiation as possible. I think one of the things to consider is our lifetime radiation exposure. I grew up having lots of dental x-rays, and I’ve had quite a few spine xrays.

Anyway, after looking at my family’s and my medical history, he gave my lifetime breast cancer risk at ~18%, which is a little over double the average woman’s risk, but still less than 20%. And not high enough to have insurance pay for the BRCA testing. He doubts I carry it. Without insurance, it’s $4000 out of pocket.

Anyway, I totally understand not wanting to have radiation, and I think if you get your breast cancer risk assessed, it would not only give you good information, it might be helpful in convincing your insurance company to cover surgery. I wish you the best trying to get it!

Amy

[BClark]

#1177725

Thank you everyone for your responses and guidance. I called the insurance company and was told I can file an appeal if my doctor recommends the surgery instead of the radiation.

My recheck with him is in 2 weeks so I am going to request he makes that call. I want this over with sooner than later.

Brenda

[vanillasky]

#1177726

I’ve never heard of an insurance company rejecting a TT. That’s awful and I’m disgusted with this insurance problem in this country.

Can you change carriers? That’s what I would do if you are adamant about TT. I, personally, am going through with RAI when my doctor says it’s time. I am not afraid of it. He recommends it.

TT could cause problems as well. You face just as many risks to your vocal chords, parathyroids and problems with sore throats, etc. And if I could avoid a scar on my neck, I would. The surgeon I met with goes through the armpit, if it comes to that, I am going with the armpit surgery robotically.

[adenure]

#1177727

It’s hard to change carriers with a pre-existing condition. Hopefully your doctor will have success with the appeal.

TT does come with its risks, but those risks are minimal if you are stable (thyroid hormone wise), generally healthy, and have a very experienced surgeon. The vocal chord damage can be avoided if the surgeon uses a recurrent laryngeal nerve stimulator to locate the chords during surgery. Very experienced surgeons don’t always use this, but it can help. The scar isn’t a big deal. Mine is hardly visible at all.

My personal opinion would be to go with the traditional approach to a TT. For some reason having a real person in there doing the cutting rests better with me than a robot. But, that’s just me I guess. I don’t trust machines 100%. People can make mistakes, but I trust the human hand more- just my own perception I guess.

[Kimberly]

#1177728

This is a recent piece from the American Thyroid Association on robotic thyroid surgery. The original purpose was to look at cost, but the commentary section has some additional info comparing this to traditional surgery:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.thyroid.org/thyroid-physicians-professionals/thyroid-disease-information/clinical-thyroidology/march-2013-volume-25-issue-3/clin-thyroidol-20132550-52/

The commentary quoted a doctor from the MD Anderson Cancer Center, noting that “the cosmetic benefit of robotic transaxillary thyroidectomy does not offset the risks and liability of performing an operation that takes greater resources, might have some additional complications, and is not supported by the robotic equipment manufacturer.” (The manufacturer of the Da Vinci surgical robot stopped supporting its use for thyroidectomy in 2011).

Obviously, any procedure has risks and benefits, but this is definitely something to discuss with the surgeon in an initial consultation. There was also an article in the newspaper recently indicating that doctors using the Da Vinci robot for other procedures besides thyroidectomy had perhaps not received as much training as they needed. We always tell patients to ask the doc how many surgeries he/she does per year. But this story illustrates that it’s also important to ask how many surgeries they have done using any type of new equipment!

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