[MeganD]

#1018269

I am a teenage girl who has been living with graves disease, since the age of 14 I am now 16. I had a very long nightmare the first year of my diagnoses. I had side effects from both methimazole and PTU, I also started to go into a thyroid storm that almost cost me my life. After all that I decided to try RAI again, the first time it didn’t work. By some miracle this time it worked!! My thyroid was officially declared dead in August of 2009. I then started on levothyroxine(big mistake) and stayed on it for a year with MAJOR stability problems due to the fact that I can’t convert t4 to t3. Last month I started armour thyroid, and I pray every night that this will get me back to normal. As a teen it is really hard to go through this disease, I face a lot of challenges that most teenagers don’t go through. It has really had a negative affect on my school work,frienships,personality, and sanity. Is there anyone else out there who is my age that has or is going through this? Also any ideas on how to lose weight with this disease would be greatly appreciated ” title=”Very Happy” />

[Kimberly]

#1063624

Hello – If you use the search function at the top right-hand side of the board and search for “teenagers”, that should return a few past threads about teens and Graves’. If you would like to connect with some of the other teenagers who have posted here, you can click on their name (just under the title of their post) and then click “send private message”.

As for weight loss, here are a few suggestions from a nutritionist who presented at our conference in Charlotte last year:

1. Include breakfast daily within 2 hours of waking up.
2. Don’t go longer than 5 hours in between meals
3. Select “high volume” and “high fiber” foods such as fruits, veggies, and whole grains
4. Limit servings of healthy fats to 1 per day
5. Prioritize at LEAST 7 hours of sleep a night

Once a doctor’s clearance is obtained to resume activity, she also recommended 150 minutes per week of physical activity, plus strength training 2 times per week.

Because of your age, I would suggest consulting a doctor to determine an appropriate healthy range for your weight…and to discuss specific weight loss approaches. This is definitely NOT the time to deprive your body of key nutrients!

Best of luck!

[Julie3588]

#1063625

Hello,

I had just turned 19 when I was first diagnosed, though I expect I’ve had GD since high school. So I’m a bit older than you but can probably still relate (I’m 22 now). I first tried ATDs then eventually ended up doing RAI a little over a year ago and am now on synthroid.

Like you mention, graves can really wreak havoc on friendships and schoolwork, dating becomes even more challenging (not that it’s easy to begin with, lol) I know I’ve lost a couple of friends/relationships because they just couldn’t deal with the severity of everything, not that I blame them. Teens/young adults just aren’t the most understanding group, they tend to still be in the invincible stage. This disease knocked me right out of that one.

Anyways, let me know if you want to chat. Like Kimberly said, you can PM if you’d like, or just post here. Best of luck with everything. Hope you’re having a healthy day!

-Julie

[MeganD]

#1063626

Thank you Kimberly! and Julie I sent you a PM

[mamabear]

#1063627

So sorry to hear that you have Graves’. Being a teenager isn’t easy either. I have 4 kids, ages: 15 & 7 (boys) and the girls are 4 & 6. I’m 37 now but when I was a teen I can recall the feelings of being hyper even though I wasn’t tested till I was 18 and even then the tests showed I was "just fine" . I knew something was wrong and my mom did too. I couldn’t consentrate in school and well life was hard and it wasn’t easy not knowing so I just went on with life. I still didnt have a confirmed positive result till I was 27 years old, before that it was always fine/borderline. Looknig back I can tell there was something wrong but it just wasn’t "triggered" yet. OH well I wont complain!

It is hard and making sure you speak to your family about this and venting with them and on here can help get you through this. Having support with your parents will be key, as far as friends go…. I have learned that I have had many many friends but only one true friend I trust and rely on when I need her. SHe was someone from high school a few years younger than me and she is still my best friend after all this time. THere were a few years we didn’t speak because she was in the military and our lives were crazy but we are very close again and have been for years. Finding that is hard to find but once you have somenoe like that it’s wonderful. Being a teenager you wish to have many friends to chat with and share things with and you should have them, having graves disease makes it hard because they dont understand it. You might watn to get a few friends on here to talk about things as well and let us help explain what you are going through AND what THEY are going through with being your friends and have had to watch from you while you were hyper. It isn’t easy having a friend wtih Graves either, scary for most teenagers so maybe they need someone to say hey it’s ok and although it is scary your friend is still your friend. Teenagers need reassurance that all will be ok, I can imagine what it was like for them knowing you were getting RAI done or having to take ATD’s and them not working. Being all crazy with Thryoid storm in front of someone can scare them to death as well or even being nasty to a friend can scare them because they dont know if its you or the Graves.

[MeganD]

#1063628

Thank you so much for the advice mamabear! And sorry to hear about your long journey to just get a diagnosis!

[11ESK]

#1063629

MeganD, I am happy for you that the radiation cured you!! That’s a huge step, and hopefully the new medicine will wok well. I am 15 and got diagnosed with Graves a few weeks ago in the middle of June. My pulse is usully 115-120, but now I’m on Atenolol heart medication that lowers my pulse. Nevertheless, my doctor still insisted that I do not exercise except for light walking. I used to really like it, but now I cannot exercise. This makes me even more anxious!! The one thing I cannot stand at all is the anxiety. It takes a lot for me to act like a normal/sane person sometimes! I have to do some extreme acting a lot of times to make it seem like I’m ok- when I really want to start jumping up and down and screaming!! In the past I had a naturally calm and type B personality. I gues that’s why I loathe the anxiety so much. My younger sister, who knows what disease I have, calls me mean names every time I randomly start crying. Of course, I’ve never done anything like that before. I am always soooo hungry!!! I have to eat like 2,500 calories a day just to not lose weight!! I lost 10 pounds, which is not good at all for me. My ex-boyfriend made some really mean remarks about it… I told him off though! haha I mean, no one except my immediate family knows that I even have this disease!! When I found this website, it made me feel great that I could have other teenage girls to discuss my disease with.

[11ESK]

#1063630

It helped me immensely to research about GD online as much as possible. I’ve probably read over 40 articles (Mayo Clinic is a great source too, by the way) on GD and hyperthyroidism.

Also, if you are experiencing ANY symptoms of Graves Disease, go to the doctor soon and ask for blood work up for hyperthyroidism (including the hormones for Graves Disease and other forms). If the doctor will NOT give you blood work up, GO TO ANOTHER DOCTOR. I prolonged my treatment by 4 (horrid) months because my pediatrician would not give me blood workup. Like all diseases, the longer you wait without treatment, the worse GD gets.

So, now I’m in a much worse condition than I was in the beginning of March. I’m considerably more anxious and my pulse is 30 bpm higher. I am getting radiation therapy on July 11 (one week from now) I’m sooo happy to finally put an end to this!! I know it will be painful, but it is DEFINITELY worth doing for my life in the long-run.

[akenyon]

#1063631

I am 17 and i was diagnosed with graves disease a year ago. I had my thyroid removed in april of last year i have an awful scar. I also had a reaction to the methothimizole i am allergic to it and broke out into hives and ended up in the hospital. I know how you feel my first year has been awful in total i have gained 25 pounds. I lost a boyfriend that i had been with over a year and im constantly tired and moody. I am on levoxyl and it seems to work okay but iwas on the wrong dosage for roughly 6 months which made me gain even more weight. It’s not fair and no matter what i do i cant get rid of the weight.

[Kimberly]

#1063632

Hello – I’m so sorry that you are dealing with all of this at 17! We don’t have a ton of teens posting on this forum, but when you pull up older posts like this one, you can always try to contact the individuals who posted via private message. Just click on the PM icon that appears a few lines underneath their screen name. The system will “ping” whatever e-mail address the other person used to sign up to let them know that they have a private message waiting. (Hopefully, they are still checking that e-mail address; otherwise, posters can fall out of touch with us).

There is also a Facebook group for parents, with an offshoot group for teens. These are not official groups moderated or controlled by the Graves’ Disease and Thyroid Foundation, but they include many family members who have come together to share their personal experiences. I don’t have a direct link to the group for teens, but the group for parents located at http://www.facebook.com/groups/265484340175004/. It’s a closed group, but you can request to join, and the organizers will approve you if you let them know you are interested in the group for teens.

If you are still feeling tired and moody six months later, I would *definitely* push your doctor about helping you get some relief. It can also be helpful to get hard copies of all your labs, so you can see for yourself where your levels are. The “normal” range is fairly wide, and some patients feel their best at a certain spot in the range. Sometimes we have to be *very* assertive to get the care that we deserve!

Weight issues can be a huge challenge for many patients. Unfortunately, there aren’t any easy answers, but here are a few suggestions from a presenter at one of our past patient conferences:

1. Include breakfast daily within 2 hours of waking up.
2. Don’t go longer than 5 hours in between meals
3. Select “high volume” and “high fiber” foods such as fruits, veggies, and whole grains
4. Limit servings of healthy fats to 1 per day
5. Prioritize at LEAST 7 hours of sleep a night

Once a doctor’s clearance is obtained to engage in activity, she also recommended 150 minutes per week of physical activity, plus strength training 2 times per week.

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

[Girl]

#1063633

I was diagnosed when I was four (or maybe three). I’ve never had it as bad as you. I just see a specialist every six months and have been on various amounts of methimazole and synthroid. They’re hoping I just won’t need it eventually, trying to wean me off.

I suppose that having it so young, before I even really developed as a person, I’m not able to tell what is a symptom or just how I am. I can tell with the eyes, though. When I was little, people were constantly asking me what was wrong with my eyes or kids I didn’t even know would just bug their eyes out trying to “stare” back at me. I just told them that’s the way they are. I don’t want sympathy and my story isn’t even worthy of that because nothing too terrible has happened to me. You don’t bring something up like that in conversation. So when at school hepatitis shots were being given and there was this girl bawling her eyes out because of her fear of needles I sit by and think, “I’ve been having blood tests regularly for most of my life and my doctor is talking about future surgery and YOU’RE the one who gets consoled?” I hate how selfish that sounds, but it’s how I felt in a moment of weakness. I was young.

I haven’t had surgery yet, but the thought scares me. I don’t want some gaping hole in my throat held together by strings. And my vocal cords, what if they get damaged? I need my voice, the way it is. And the scar. I already don’t like how I look. Must we add to it? I’ll still have to take medication every day either way so why must we cut me up?

It’s all just this part of me that I can’t talk about because I’ll sound like I’m looking for pity. I just want people to understand. But I guess my symptoms aren’t as severe as yours or cancer so I’ll just go along a secret hyperactive thyroid soon to be removed.

By the way, I’m sorry about ranting, but that’s what I use the internet for. Someone to talk to when saying these things to the people I know is just too much.

I’m sorry about everything you go through and you really help me realize how lucky I am to have gone this long without trouble and you’ve had hell in only a couple of years. I feel like an idiot.

[Kimberly]

#1063634

Hello and welcome! You have found a group of kindred spirits here who totally understand what you are going through!

We don’t have many teens posting here, but if you check out the Facebook link on the previous page, that might be a good way to connect with fellow patients your age who understand what you have been dealing with in balancing Graves’, school, and family/personal life.

You might also be interested in visiting the GDATF’s YouTube channel, as we have presentations from Dr. Michael Gottschalk and Dr. Scott Rivkees on Graves’ and kids. (A lot of times, they use the words “kids” or “children”, but the info applies to teens as well.)

(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.youtube.com/user/GravesAndThyroid

If you are doing well on the meds, that’s great. If the time comes when you do need surgery, please be assured that you will *not* be left with a “gaping hole”! As with *any* surgery, though, thyroidectomy comes with a risk of complications. The most common complications with this type of surgery are damage to the nerves around the vocal cords and parathyroid glands. Having an experienced surgeon is important in order to minimize the risk of these complications.

Take care!

[Raspberry]

#1063635

Dear Girl, please know you can talk here – no one will tell you that you are whining, complaining, seeking pity. It sounds like someone in your life has been warning you of that so you keep it all in? There are people in the world who do manipulate others for sympathy over every hangnail, but you are clearly not one of those people. You do deserve support and care and nothing is wrong with talking about how you are feeling and what you are dealing with. Graves’ is a very hard disease to have mentally as well as physically on just about anybody. There’s been quite a few people lately on this board having TT’s (total thyroidectomy surgery) and it might ease your fears about surgery to read their stories.

[Author]

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