[Bellagon]

#1059742

Hi everyone,

I’ve been a part of this website for awhile but have not submitted anything on the forum. As I’m getting desperate now I need some advice! Any advice or information will be greatly appreciated.

I was diagnosed with Graves Feb 2012. I was put on a beta blocker and Methamazole. I was finally taken off the beta blocker and now am still on 15 mg Methamzole daily. I am at the point where there’s no remission in sight and my Graves just keeps acting up. Almost every time I go in for lab work I have to adjust my medication, most times up the medication goes up. Only once was I advised to reduce the milligram only to find out Graves was back in full swing.

My endo and I are talking about RAI or surgery. My endo recommends RAI but I would rather surgery. We have different outlooks on my treatment, but he supports what ever choice I end up making. After much research about RAI vs surgery, I just feel surgery is a better option for me.

Now my big problem is I have no insurance, and have not had any in the last year. All of my labs, medication, office visits have been paid out of pocket or out of the kindness of the clinic’s financial aid office.

With no insurance I don’t know how I’ll be able to afford and get surgery. And I just don’t want to opt out for RAI. Please help.

[Kimberly]

#1177201

Hello and welcome! This is definitely a challenging situation.

First, depending on what state you live in, you *might* be able to enroll in a special insurance program for patients with pre-existing conditions. About half of states have programs that are still in effect, although the federal program (which many states used) was shut down earlier this month. Here’s the link, although you have to close out of the disclaimer to see the availability by state.

https://www.pcip.gov/

Contacting your state and county health and economic security departments can sometimes be helpful as well. Even if you are not Medicaid eligible, these offices can often suggest other resources. Individually contacting local hospitals, universities, or medical schools can also sometimes get results. You might consider posting the state where you live (I wouldn’t give out much more personal than that), as others who live in your area might have specific suggestions.

You might also try the Patient Advocate Foundation; their specialty is helping patients who are uninsured and underinsured get access to medical care:

http://www.patientadvocate.org/

Finally, keep in mind that dosing with methimazole can take a few tweaks to find the right dose that will keep you from being either hypER or hypO. And while methimazole blocks production of new thyroid hormone, it can take a few weeks to burn off your body’s existing stores of excess hormone. Given your current financial situation, you might talk to your doc about staying on the meds for a longer period of time.

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

[adenure]

#1177202

Self pay for surgery is less than what the insurance companies would be paying. Also, many doctors/ hospitals/ states have financial aid. I paid for my surgery out of pocket. I’m on a payment plan (no interest because it is a medical bill) over the next 2 years to pay it off. If you can handle a payment plan (vs. 1 lump sum), surgery could be a possibility still.

If you foresee being able to get insurance through your employer or in some way in the relative near future though, maybe taking the ATD’s until then is the way to go.

[catstuart7]

#1177203

Hi Bellagon, I know it’s more money, but I’d encourage you before committing to RAI or surgery to get a second endocrinologist opinion. There are radically different views among them on how methimazole should be dosed based on the lab results. You might find another endo who might be able to make the methimazole work out for you after all and that by far would be the most affordable option.

The source of the controversy (which may or may not apply to you) is that some doctors do not reduce the methimazole as long as the TSH is still suppressed, but Graves’ can cause a false suppression of this value even though your actual thyroid hormones T4 and T3 are well within normal limits. So if your TSH is still low, but your FT4 and FT3 and within the normal range or even low please look at all your options. Wishing you well!

[Bellagon]

#1177204

Thanks for all the great information!

I’m from Wisconsin and I know there are lots of great resources in my city so I will be contacting those organizations.

I think talking to another endo will also benefit me, and I’m in the works of contacting another endo to discuss my Graves.

@Alexis do you have an regrets about your surgery? If you could go back would you opt for RAI?

[Author]

Posts