[RhondaG4]

#1070013

Welcome skinny….I don’t know that I can be of much help to you, as I’m pretty new to this myself. I’m sure Ski will be able to answer your questions as best she can. She really knows her stuff when it comes to GD. Just wanted to say hi and you’ve found a really great site with people who understand what your going thru. Rhonda

[Hopeful23]

#1070014

Skinny,
Welcome to thee absolute best forum ” title=”Smile” /> We have amazing facilitators and gd patients that are here for you. I am sorry you are apart of this group for obvious reasons however glad your here than some where else. I don’t know where to start and I apologize ahead of time for length.

I am 24 and have been dealing with this since about 21. I was 112 lbs a dancer,gymnast and cheerleader& coach. I was in college for nursing and had thee best friends/bf. Well so I thought. The minute my life went down hill I lost it all. EVeryone thought i was LAZY and MOOCHING. No one listened or cared to look past the ANXIETY/PANIC ATTACK diagnosis even though I was sayings ‘ITS NOT JUST THAT, THERE IS MORE GOING ON’. I was sitting on top of the world. ALways happy and outgoing and never tired. I would work work work and play play play. It suddenly all came crashing down FAST AND HARD.

I got diagnosed November 2008 and my CRAZY journey had begun. Like I said I was 112 then I went up to 160 and was told that it was because i was in college and had anxiety and wasn’t doing my hobbies anymore and etc etc. Then I had my usual Dr. Apt to get more blood work and testing done that had no correlation to my SYMPTOMS but at this point i was like whatever ill go in. I signed in and the receptionist says welcome to ……… Your name and Dr. I said Um its Krystal W. She just looked at me like umm im sooooo sorry. I didn’t look at you really" covering herself up for looking ‘shocked’. I was 82lbs in 2-4 weeks. I went back to my New dr cause mine was booked that day but passed my "reg" dr and she just stared and said lost some weight I see. Well my new dr said "okay, so Im assuming this isnt your actual weight since everyone seems to be in hysterics right now. I said now twoish weeeks ago i was 160 and she said well are you eating I said triple what i was last time i was here. She then sat in front of me and said okay tell me everthing since this is our first meeting. I wasn’t even thru my story before she stood up felt my neck and said swollow and I started choking like a victim. She said well you are hyperthyroid and I need to schedule you with an endo RIIIIGHT NOW TODAY. I went in my endo FLIPPED OUT and said not on the record but you have GD. I was like ummm excuse me i have whaaat. the name threw me through a loop. lol. HE DID MY SCAN THE NEXT DAY. My levels were in TS AND my uptake was at the time like 89%. He gave me scripts and said this is what you need to do i am very worried about you. gave me his cell, pager, home and answering service number. I was lucky not to go into THYROID STORM (TS). If it wasn’t for that dr who realized my BLOOD WORK WAS OVER LOOKED. I probably would have been a TS vicitim. God was def watching over me. You are not alone. AT ALL. We all have our stories. Now as far as pregnancy, food ect. Its def not the time for pregnancy. PTU is the choice of drug if you happen to get pregnant however at this state you HAVE TO DO EVERYTHING YOU POSSIBLY CAN TO NOT GET PREG for your health and the unborn baby’s health. Your focus needs to be getting your levels down and seeking a treatment option to heal your body. You body is being beaten up like a mac truck right now. Like others have said. Its like sitting in your car with it in park and putting you gas peddle to the floor and never stopping. Eventually your body will break down and thats whats happening to you. Your muscle mass is being destroyed and your heart is being over worked as well as your fight or flight system (sympathetic system) this is where you experience your anxiety/panic issues. I feel for you. I was you a few months ago. SKi our facilitator has way more knowledge than i have right now but go thru and read posts and her responses you will be a GD PRO by the end of the night/day. There is nothing really to avoid other than seafood. My endo specifically told me to stay away from it when I was at my worst. It has something to do with the iodine dye I believe. I don’t really know that time is kinda a blurr to me. I didn’t respond well to ATD’s. The Anti thyroid meds (PTU, Or TApazole) so i had the choice of TT or RAI and TT scared the living SHI* OUT OF ME so RAI was my treatment of choice and I cant say anything bad about it but its totally up to you and your endo. Research ask questions and do whats right for you. we are here to support you and again sorry to say welcome but welcome aboard. IT WILL GET BETTER BUT YOU HAVE TO DO EXACTLY WHAT YOUR TOLD BECAUSE IT CAN SPIRAL DOWN AND FAST. Stay strong, confident and believe in FAITH. Your not alone..

<<<<HUGS>>>

Hopeful 23
Krystal

[skinnyasarail]

#1019198

Hello everybody
I am really needing so serioius help and support
I just found out today that I have Graves Disease
the doctor explained my condition to me but I am still
confused on somethings! she prescribed a medicine to me
called PTU and I need to know will this medicine help
me to regain weight? I am 22 and weigh 106
also will this medicine help me to get pregnant?
because my cycles have been very irregular!
I would love some advice!!! on what foods
to avoid and what foods are best for me having
Graves..

[vintagegreen]

#1070015

Hi Skinny,
Welcome to this group. We all realize its not the group you wanted to join, but this place is great. It really is. I never was a online-group-joiner before but everyone here is so helpful. If you are wondering about something, read the archives to see if someone before you has asked the same thing.

I’m new too, well only by 1.5 months, but I’ve found it necessary to buy some GD books as you will want to be an informed as you can be. Go to amazon.com or your local book store and read up. Be informed, know the questions you want to ask BEFORE you go into your appts. The endo’s time is limited and you may be too emotional to remember them. Take a small notebook or list of typed questions that you have as you read. I’ve started journaling too, so I can remember how I feel/felt on a certain day. These kind of things have helped me learned to understand my journey.

Do what you can each day. Do things that you want to do and lower your "to-do" list. Manage stress in different ways.

I’m praying we all reach the other side and are normal again.

LOVELOVE,
A

[npatterson]

#1070016

Dear Skinny,

I am glad you found us. Please go back and re-read Krystal’s note. She reminded you of a number of important things. I will also remind you of them.

Now is NOT the time to be trying to get pregnant. The excessive thyroid hormone would be very bad for an unborn child’s development. Your body needs all the attention you can give it.

Be easy on yourself, and maybe on your three friends. We have all been there, in that spot where no one understands what is going on. Hopefully, you can get that understanding here, and find the grae to reach out to the others and gently inform them about Graves’. You are right, you have too many questions right now.

Iodine is need to MAKE thyroid hormone. Some seafood has a high iodine content–depending on the iodine level of the water they lived in–and that is not good for you right now. When your thyroid hormone levels are balanced, you can return to seafood. Sometimes folks will read on the Internet that KELP is good for thyroid disorders. Absolutely NOT for Graves’. All the seaweed-type things are very high in iodine.

Before you go out and buy a lot of books, please check the reading list that is on the home page(one of the tabs). Those were carefully selected for accuracy and being medically sound, and good for "beginners". Some "popular" books are not necessarily filled with accurate information. You might spend a lot of time trying things that only delay your treatment. Print out the things under "About Graves’ Disease"

I have no idea where you live, but you will benefit by coming to the conference. There will be world-class thyroid specialists, augmented by nutritional, psychological, family and patients supporters. There best thing is that you will meet lots of others who have Graves’.

Lastly, slow down. (You have already done so, ’cause your body is screaming at you.)
Rest, pace yourself, and listen to your doctor. You will get through this. You can re-structure your life when your levels are stable–and that may take some time.

I just checked, and can’t find the reading list. If you will send me an e-mail, I can return an attachment to you. I can’t do it from here. "nancyngdf@bellsouth.net". akle care,

[missgooty]

#1070017

hi all! i just found out as well that i have gd. however, neither of the endos i’ve seen have really explained how they have come to that conclusion. i’ve been dealing with a nurse over the phone. she sounds really knowledgable with this but since this is a big deal for me, i’d love to be hearing from the doc. when i went to the doc to get some face-to-face clarification, he kept looking at his watch then said he had to go. needless to say, i feel like i’m just floating out there, with no endo willing to explain how they came to the diagnosis and also willing to go through all my treatment options. all i’ve gotten is info from the nurse, who said there really aren’t any side effects to RAI expect it kills the thyroid gland which is what i want it to to do. i hate medicine, i never take it. i can’t stand the idea of something foreign in body, so starting with something radioactive seems so drastic to me. then to have to take a pill everyday, that hormone supplement, would be huge for me, i never take meds.

unlike some of you who have written, i have no symptoms, other than my family practice doc who found abnormal thyroid scores at my physical. so with no symptoms, what does that mean? i have no idea. the endo has not really explained anything. i’ve found info myself but i’d love to hear it from someone whho is an expert. i have so many questions. and besides "how did you come up with this diagnosis?" which i believe is correct, i’d just love an explanation, i’d like to know what all this gd stuff means to me since i have no symptoms, like can i run three times a week for 30 minutes?

and since my endo experience has been so bad i’ve had to look for another one, which i won’t be able to see till mid august. can i wait that long? uuhh, so many questions.

i’m glad to have found this group. i’m looking forward to the info that will be shared here. this is really a new thing for me. i had been the picture of perfect health. i’ve never even had a ear infection. i’ve been really blessed and i have to believe this isn’t the end of the world but for me, even though it has kind of been feeling like it. i look forward to when i’m not feeling so sorry for myself.

i’ve been venting. sorry but thanks for reading. all of your posts have been very helpful for me. i look forward to any info you all would be willing to share. things can only get better for all of us, right?

[Ski]

#1070018

You should get a copy of your thyroid hormone test results ~ if those results are far out of range in the hyperthyroid areas (T4 very high, TSH very low), the most likely reason is Graves’. Transient thyroiditis CAN occur, but usually resolves after six weeks’ time. If your levels have been high for more than six weeks, again, the reason is probably Graves’. You can re-confirm the diagnosis with an uptake/scan of the thyroid, which will show a pattern of uptake across the entire gland (not normal), and will give a very high percentage of uptake, if it’s Graves’.

Many of us believe we are not having symptoms when we are hyperthyroid. The early symptoms are very subtle and may just seem as if we are unusually "energetic" and feeling great, because we can do just about everything on very little rest. Unfortunately, waiting for symptoms to arrive can mean we’ve had some real damage in our body. Being hyperthyroid is kind of like being a car, sitting in the driveway with a brick on the gas pedal. For a while, it’ll just rev really high. After it’s gone on for a long time, things start flying off the car and out of the engine. You don’t want to wait until your body is at that point. If what you’re looking at is hyperthyroidism, you need to treat it.

RAI is not the only treatment available to you. ATDs (anti-thyroid drugs) are effective for many people. Do your research on the disease and the treatment options (there are three ~ ATDs, RAI, or thyroid removal through surgery), and make your own decision. If your doctors are so inattentive that they can’t even tell you what’s going on with you, and they dismiss your questions and concerns about treatment, you should really go looking for a new doctor who will work with you. This can be a long road. You need a team member, not someone who thinks they’re the "boss of you."

[missgooty]

#1070019

thank you for the info ski. i agree, after reading some info on gd, that i can’t go untreated in this hyperthyroid condition. it has been longer than 6 weeks for my blood work to be hyper. can i wait for my appt mid august? i’m just a bit nervous if i do begin to notice symptoms. how quickly can things change…i have no idea? i guess i can only hope for a cancellation.

[Ski]

#1070020

Typically things change rather slowly, but read up on the symptoms of thyroid storm, just in case. It’s rare, but you should know what to look for. Read up in the meantime!

[Author]

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