[robertajean_]

#1018882

Hello, I’m Roberta. I found this site yesterday, and have been reading through most of the posts and seeing people’s stories.

I’m not really good at this, haha. Never was a public person, but Graves has just seemed to make it worse. I was in my junior year of high school when I started showing symptoms (and a LOT of them; I’m in the first quarter of my senior year now, I’m seventeen years old) and it just drained everything from me. At first, I thought it was just stress of school work, midterms, finals, people getting to me, and that probably was part of it. It took several months for me to go to my general doctor, and a few more months to get a diagnosis and see an endogrinologist. (I apoligize if I spell anything incorrectly, I’m in a study hall right now and don’t have time to look things up because I want to get this typed before the bell, haha.) By the time I was told I had Graves, it was summer time and many things were already ruined. I had become extremely lethargic, exhausted and panicy. I felt like there was something holding onto my chest and squeezing painfully every time someone talked to me or I had to do something, and that caused me to lash out at people and sit around all day doing nothing. I was sleeping, was never hungry but ate all the time (causing me to gain weight, which I’ve yet to lose), failing most of my classes and just hating life. It seemed, to me, like this was just someone’s way of saying I shouldn’t be here, but whoever that someone is, I’m going to be here whether you like it or not, because I want to be!

I’ve only seen my endo once since this has happened, and it took months to get in to see him. I was put on methimazole, which made me feel better for a while. Recently, I went in to have more blood work done (must’ve had blood work at least once a month for the past half a year!) and the results came back abnormal. I don’t know really, I can’t seem to get any information from anyone. I’m still a minor, so I can’t even set up an appointment without my mum there, and she’s a restaurant manager so she’s always at work. It just feels like no one can help me, and no one knows what I’m feeling.

Anyway, they took me off the methimazole, and I’ve only gotten worse. My mom called my general doctor, and was told that the endo said to NOT go back on the meds, even though mum told them I was only getting worse. The endo had said that they had made me worse, which just doesn’t make sense to me. I felt better on them, why keep me off?

I just really don’t know what to do anymore. Mum’s set up an appointment to see my general again soon, so hopefully I’ll get some answers then. Getting an appointment is almost as annoying as the cough I’ve got (it’s been a month and a half!). I just want everything fixed, and it doesn’t look like it’s going to be. I’m already in danger of not graduating because of this, and I’m looking at colleges now. I just hate to think that it’ll take away what I want in life, but the pessimiste in me can’t help but yell that at me.

The bell’s about to ring, so I’ve got to close up shop, haha.

[bradybunch6x1]

#1067640

Hi Roberta,
Ya know being a parent to a child with this disease is pretty hard, but my children and I are lucky, I found out first that I had it so I understand it alot better than most parents with a child that has it. My 12 year old son has it, and I have found that inorder for him to know how to handle this part of his life he can not just go around saying I have a disease I know nothing about. He is informed. He knows what is going on, yes even at 12. With the explanation that you have given me, it seems that you and your mother both may need to start doing a bit of research, and asking questions. Although you are a minor, you also are the patiant, and the doctor does need to explain to you what on earth he is talking about. Your the one when you turn 18 that will be dealing with this disease, not your mother. You need information, and it seems your trying to find it. Check the section on books here, that may help you, also see if your mom will take the time to check out this web site, and ask questions. She as well as many other people on here are having to care for someone with Graves, and it isn’t the easiest job in the world. It might help her understand a bit more about what your feeling, and she may also be able to understand what you may need from her in order to help you.
Valarie

[robertajean_]

#1067641

Hi Valarie (:

I have been doing research when I have time, there’s just not much time to do that with school, haha. If this were diabetes, I would know what to do and have family members to help me.

I’m just fed up with my doctors. The appointment my mom’s set up is because I pushed to have one so I could get information about this.

I do appreciate your advice, it means a lot to know I’m not alone (:

[Kimberly]

#1067642

robertajean_ wrote: I’ve only seen my endo once since this has happened, and it took months to get in to see him. I was put on methimazole, which made me feel better for a while. Recently, I went in to have more blood work done (must’ve had blood work at least once a month for the past half a year!) and the results came back abnormal. I don’t know really, I can’t seem to get any information from anyone.

Hi Roberta – Many of us just got back from the annual conference for the Graves’ Disease Foundation in Charlotte. One of the issues we discussed during the final day was the fact that many endocrinologists specialize in diabetes and are NOT as informed about Graves’ as they should be.

I would recommend getting a copy of every set of labs that you have had run for the last year. The doctor’s office might charge you a fee for the copies, but you are entitled to get this information. Then, when the doctor’s office tells you that something is "abnormal", you will be able to see in black and white exactly *which* test was abnormal…and whether that particular benchmark was too high or too low. It’s also good to note the *direction* in which your labs are moving. For example, if you have a test that is SUPER abnormal at one point, and several weeks later, that benchmark is only SLIGHTLY abnormal, this is actually a sign that things are moving in the right direction.

Educating yourself on Graves’ Disease and tracking your own labs will allow you to be an active partner in charting your treatment course…instead of just accepting the (limited) information that our endos sometimes give us.

Best of luck!

[robertajean_]

#1067643

Hey Kim; I saw a bunch of you mentioning the conference, how did it go?

That’s a very good point, I’ll ask my doctor about getting copies of the labs and see exactly what they are.

[Kimberly]

#1067644

robertajean_ wrote:I saw a bunch of you mentioning the conference, how did it go?

It was well worth the trip. We got lots of excellent information on different topics…and it’s always great to connect in person with others who "get" what it’s like to deal with Graves’ Disease.

I would definitely consider attending next year’s event, if you are able. There are separate sessions for family members as well, so I think your mom would get a lot out of it as well.

[Lucy]

#1067645

For those of us unable to attend the conference, is there a way to find out what was said? I’d like to know if any new research has been done. Are they close to a cure?!! ” title=”Razz” />

[Marpo]

#1067646

I just got back last night from the conference. There was so much to learn in a short time. I am sure there will be some kind of information here for those that were not there. But, it will not be the same as being there. Amazing people….doctors, supporters, family, Graves’ and TED people and of course the people that put it all together. No, there is still no cure but with the researchers and people like Steve and Kathleen I am sure it will come soon.

A big "Thank You" to Peter, Nancy, Steve, Kathleen all the Doctors and supporters and all the speakers. I learned so much at the conference. Antonio Richardson a great Hip-Hop artist who was there and has Graves’ Disease is going to really get the word out for us and I am proud to call him my friend. I was so glad to meet all of you special people. Congratulations to our very own Ski for being the "Volunteer of the Year". You deserved it and more for all you do. Congratulations to all that got awards. Thank you Kathleen and Steve for the beautiful bracelet I was awarded and to the foundation for the "Star Fish" Medallion my husband and I received.

I miss you all, already, and look forward to seeing you all soon. This is a wonderful foundation to belong to. I really believe this foundation and supporters "WILL" find a cure one day soon. In the mean time the information the foundation and the volunteers give us will help us all while we wait.

[Kimberly]

#1067647

Lucy wrote:For those of us unable to attend the conference, is there a way to find out what was said? I’d like to know if any new research has been done. Are they close to a cure?!! ” title=”Razz” />

Ditto what Marpo said about the conference. ” title=”Smile” />

The presenters were actually fairly optimistic that someday we will have an ability to interrupt the autoimmune response that causes Graves’. Unfortunately, that is probably still several years away.

I believe that the issues in posting conference info are that (1) the material is proprietary to the presenters and (2) some of the presentations on Thyroid Eye Disease included pics of actual patients, so distribution could create patient confidentiality issues. Maybe there is a way that some of the key info could be included in a future newsletter.

[robertajean_]

#1067648

The conference sounds like it was really great, I’m sorry to have missed it.

Is it around the same time every year? I’ll have to remember next year so I can try to go, haha.

[Julie3588]

#1067649

Hi Roberta,

I just wanted to say hi and welcome. I am 21 years old and currently in college. I was 19 when I was finally diagnosed with Graves but I suspect that I had it since senior year of high school. It can be very difficult at times to be a young person with this disease because most of the time your peers will just not "get" what it means to be sick. Some may even assume you are using this an excuse for having a hard time keeping up with school or having no energy to get through the day.

Get as much information as you can about this disease, especially before you go off to college! While student health centers can be helpful, they usually do not understand the scope of thyroid disorders. I keep in direct contact with my endo while away at school. Please know that you will get through this! I am working on my bachelor of architecture and am slated to graduate on time in May 2011, even after hearing that I wouldn’t be able to manage my disease with such a stressful major. It is important to find an endo that will work with your school schedule to that you do not have to miss much and fall behind.

Good luck.
-Julie

[robertajean_]

#1067650

Hello, Julie.

I’ve been worried about starting college myself. I know it’s a year away, but the one I want to go to most isn’t in my town, let alone state haha. I’m going down to check out the campus next month, so I plan on scoping the area for available doctor’s offices and endos.

I’ve been learning as much as I can about this, because I don’t want it to prevent me from doing the things I dream of. At most (and I seriously hope it doesn’t take this long) it needs to be under complete control or in remission in about seven years, so that I can join the Peace Corps after college.

Does anyone have any idea how Graves will effect me getting health insurance when I’ve got to get my own?

[Kimberly]

#1067651

robertajean_ wrote: Does anyone have any idea how Graves will effect me getting health insurance when I’ve got to get my own?

Robertajean – Someone that is an expert on health insurance might be able to provide a better answer, but if you are in the U.S., you *should* have some protections under the HIPAA act, if you make sure that you do not have a break in coverage for more than 63 days.

Generally, HIPAA applies to people who lose insurance coverage because of losing a job or changing jobs…I’m not positive if it covers switching from a family member’s plan to your own.

Once you know that your will no longer be able to take advantage of your mom’s coverage, you’ll definitely want to start researching other options well before that happens. If your break in coverage exceeds the HIPAA limit, this gives insurers more flexibility to *exclude* coverage for your Graves’ treatment for a certain period of time.

[bradybunch6x1]

#1067652

I have a family member that was dignoised with Graves while he was still in high school, and he stayed on his parents medical insurance all threw college. Once he did graduate from college, he did have to provide insurance for himself, but at that point he had already found a job with insurance, and since he had prior coverage for a continued 12 months didn’t have to worry about being able to use his insurance.
We have two insurance companies, and just started one of them, they have pre exsisting clause, but due to 12 months of prior coverage, we are covered. I myself didn’t have 12 months of prior coverage, so my insurance won’t cover any Graves related charges, other than my meds.
Valarie

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