[hyperm]

#1071140

HI Princes,

Firstly, welcome. You seem to have had a rough time of it but thankfully now you are receiving proper care.

I am heading out to take my little one to nursery so its a quick reply I’m afraid but I can assure that you will receive a lot of support on here.

If your BP is high/ high pulse etc you will experience dizziness – I have a community job and at one stage I really thought I was going to be reported for drinking and driving as I often got to my car door then would stumble to the side – it was very scary but I knew that it was thyroid related and it settled down after I was on the meds for a while..hopefully that will happen for you too.

Keep posting and in the meanwhile take it easy,.

M xx

[princesslala]

#1019359

Hi everyone, it has been a pleasure to stumble across this very informative website!

Well, where to start… ” title=”Confused” />

My name is Stephenie, I am 17 years old, and live in Ohio. I recently got diagnosed with hyperthyroidism/grave’s disease earlier this year.

Ever since about the age of 13/14 or so, I’ve slowly started to not feel ‘human’. By this I mean I’d have an extreme loss of energy even if I never did physical activity.
I would have a lot of hair loss, just clumps falling out as I washed my hair, thankfully I have thick hair or it would have been noticeable.
My appetite changed dramatically; I would always get hungry an hour or two later after eating, no matter how big the meal was! Yet, I never gained a pound…
I would always have a fast heart rate, always nervous, always shaky even at home in comfort. I turned into an insomniac and also became very depressed and got mad about everything.
I thought to myself "Am I dying?" I really just got to the point where I knew something was wrong.

Meanwhile, my mom was our only income, and she was barely making enough since my dad got laid off; so I didn’t want to burden them by using money for a doctor. Besides, my mom brushed off my symtoms just saying things such as, not eating right, not drinking water, being on the computer too much. Which just made me want to scream inside because I KNEW something was more serious.

Finally, 2009 rolled around and I got health care. I made an appointment with my new doctor, got a physical. To her I was just a big joke it seemed. She would think it was all my fault for my very high blood pressure and anxiousness and heart rate. I’d explain I wasn’t nervous of the visit and that I am always like this, but she would make me wait about 15, reading a magazine to calm down and then take my blood pressure again only to find that it didn’t change and won’t change. All she did was write me a prescription for anxiety medication and sent me home, but also with a request to do labwork just to see how my chlorestoral and things are.

Thank goodness for that blood test, because the next day my mom received a call saying that the doctor wants me to go to Akron Children’s Hospital the next day ASAP to see a specialist. My thyroid hormone levels where worryingly high. I thought to myself "What the heck is a thyroid?" That night, before the visit, I looked up all the information and was shocked. This little gland was causing ALL those problems? I couldn’t believe it. I finally had an answer to all my problems. I was happy.

The doctor at Akron said I had a pretty extreme case (not thyroid storm though), and the levels were very very high (wish I remembered the numbers), and my heart rate was scaring him. He said I was way too hyperactive and he was worried about my organs such as my heart. Once he did some blood tests, he said my liver took some damage and he was worried about it. Thankfully now, a few months later, my liver is almost completely healed. Anyways, he kept putting that stethoscope up to my thyroid and listened amazed about the sounds it kept making….he called in all the nurses to take turns listening. I was just like…. ” title=”Neutral” /> oooook. The ‘test’ most doctors use with the paper to see the shaking hands…well my doctor had me hold out my hands and said "I don’t even need that paper for you". I was that shaky.

So he sent me home with more delicious medication yay. /sarcasm. So I’m on Methmazole for the thyroid and Propranol beta-blocker to slow down my hyper heart. That makes 10 pills a day counting my allergy medication, which I hate but I feel a lot better. I really see improvement. The only problem….of course is the gaining weight again. ” title=”Sad” />

2 months and I gained I think 10 pounds. He said this was good because I was almost underweight, but he said I need to make sure not to gain anymore which is hard because my eating habits are still the same, but I’m actually gaining the weight now. I love healthy foods such as fruits and veggies, but my parents and brother just get a lot of junk and meat to eat. I’m trying to break them of it.

A lot of this is still confusing but I tried my best to do my own research before the doctor filled me in on some things.

I am really hoping to get to go to the Grave’s Disease Conference this year to meet some of you, share stories, information, and get my parents some information too.

Few, that was basically a book up there.

I do have a few questions.

Is dizziness a symptom of the disease? I don’t really get dizzy anymore and I used to a lot before the medication.

I have really really really unexplainably painful menstrual cramps each month for about two days. Can’t eat, sleep, anything during them. Does this have anything to do with the disease or just random unluckiness?

Lastly, do you think my chance of getting financial aid/scholarships are any easier with this disease? I’m looking for any aid I can for when I graduate in 2010 and go to college for Astrophysics & Astronomy.

Thank you for reading. (:

[ely2009]

#1071141

Hi Princess.

I’m in Ohio too. Farther south than you.

Glad you finally were diagnosed and that you can see improvements with the meds. That is a HUGE step.

I too have "dizzy" spells – more before I was on meds, but some still. They aren’t your basic like get off a merry-go-round dizzy, but definitely something off in the head – somewhere between dizzy and light-headed. I told my husband that sometimes it feels like I have to hold my head together. That’s an annoying, and sometimes scary, symptom.

ASk your guidance counselor about scholarships. There are LOTS of different ones out there. There are probably some good websites as well; I just don’t know what they are. It’s worth looking in to. I do know that there is usually money out there for women in science/math fields.

I haven’t gained weight back yet, but I’m really hoping that even if I do I’m able to focus on feeling HEALTHY finally and not worry so much about the weight. I’d trade being hyper for chubby anyday!!

Good luck,

Emily

[mamabear]

#1071142

Hello and welcome.
I am sorry dr’s didn’t take you seriously as a kid. Please forgive your mother, it isn’t her fault. Having felt hyper through out teen years and now being a mother of 4 with one that happens to be a 14 yr old boy. I know from experience that it is hard to distinguish between nonsense, bs and the real thing. I felt weird throughout being a teen and mom suspected something she had no clue. When I was about 17-18 she sent me to the gyn for a test for thyroid because she thought i was, but it came out fine.

It’s hard to be a mom and trust me I am sure she is beating herself up after finding out you are truly hyper(graves). She is doing enough damage to herself inside her heart than anyone saying I told you so. She is only human. Be thankful that you are here and that this dr. although he seemed a bit hmmmmm let me not say the word.. At least you found out what you needed to.

Here are some tips about Hair/skin… IT’s a link from this forum so if you want you can bookmark it.
Make sure your guidance counselor, teachers and friends know. It is important they know that some of your actions aren’t your fault.
Please know that there is a chance that you can pass this on, so make sure when you decide to have kids that your ObGyn knows and after babies are born that you tell the pediatrician for medical history. Don’t fear about having babies. I have 4 kids and know it could be passed on and I will watch them and if something happens take it from there.
Stay out of drama, unless you are failing and your parents are yelling at you don’t worry about other peoples drama or nonsense. It’s just not worth it. Girlfriends and boyfriends have plenty of it and be assured it’s just not worth it at all to be caught up in that stuff when you have Graves. Well you shouldn’t be anyway but definitely not when you have graves.
IF ONLY i knew then what I know now…I swear i’d be rich!!!! LOL

Usually my posts are much longer than this but I have to go and i’m not feeling well to boot. Ask questions and vent if you need to. We’re here for you.

[Hopeful23]

#1071143

Hello and welcome princess ” title=”Smile” />
I to had a similar story as yours. My dr at the time looked over my levels for almost 2 years. I started feeling like you around 21yearsyoung. I am now 24 and just got diagnosed in past Oct. I was in and out of the er two three four times a week. They kept sending me home with anxiety and panic information. I knew being a nursing student this was not my problem. I was a dancer/gymnast and competitive cheerleader and so I tried to ignore it and ‘BE HAPPY’ thinking i was over thinking and what not. I however got so bad i was passing out and getting heart rates as high as 190. It was waking me up out of a dead sleep. I would be sweating like a man. I also lost major weight I went from 112-190 back to 82 lbs in one month. I thought for sure I was going to day every night i fell asleep. When I could, I literally had to get so tired i couldnt keep my eyes open. I would go 2-3 days without sleep in fear i woudlnt wake up. I know where you came from. We at one point were all there. Im sorry u had to go thru that at a very young age. Everyone on here is very young and has gone thru and are very educated on this disease. If you go read posts from months ago you will see how much my attitude has changed. My endo is amazing and so smart and if it werent for him I wouldnt be here today. He is my gurdian angel. When this is all over. I couldnt buy a gift for him that could describe my gratitude and thanks. He has been there for me at 2 3 4 in the morning. I would be crying and so scared and he would assure to me that i was going to be okay and he would soon fix this for me that i just had to be strong and patient. I was at a very bad state and was lucky to be alive. I went mis and undiagnosed for 4 years. I wish you the best of luck in your journey. Welome to the family ” title=”Smile” />

All is OHIO girls/guys need to meet up and drive to a conference together ” title=”Smile” /> Ely and princess and whomever else. Let me know how you feel on that idea ” title=”Smile” /> OR we should all meet up for a dinner date.

[Madame_X]

#1071144

Sorry to hear you are having such troubles.

Dizziness indeed is a symptom — that was one of the first symptoms I had. I got out of bed (the day all of this mess began) and I was dizzy — thought nothing of it until I went to lie down when I retired for the night. I got extremely dizzy, followed by an increased heart rate of about 100 per minute.

I still get occasional dizziness, even now, several months after the dx. If I look up, I get dizzy; I still have some when I’m lying down.

Sorry the doc didn’t take you seriously; my GP told me I was dehydrated and to go home and drink a lot of water. (this was the day after the dizziness began where I also had a heartrate of 100 per minute) Dehydration was never my problem — it took a hospital admission for them to discover what my problem was; it was either Graves or a prolapsed mitral valve.

[Kimberly]

#1071145

Welcome – I’m glad you found us…and that you are finally getting appropriate treatment.

I attended a seminar on autoimmune diseases this year, and a study was done showing that it took women an average of 7 different doctors to properly diagnose an autoimmune condition – women complaining of symptoms were often dismissed as hypochondriacs. That’s really disgraceful.

Definitely stick around, ask questions, and learn all you can about your treatment options. It’s really important that we be our own advocates in managing this condition.

[npatterson]

#1071146

I just want to say what a wonderful set of posts that has been! Princesslala, you gtive a great history. And you really will learn a lot at the conference. Bring your mother, too. She will get support for missing what now seems obvious, and will learn what to look for and how to support you. You will learn how to live the rest of your life!

Your assignment: Add Pediatric Endocrinologist to the list of speakers needed. Send me the name of the doctor in Akron, and maybe we can get him to come do the presentation!

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