Graves' Disease Support Group
Graves-Basedow disease is a medical disorder that may manifest several different conditions including hyperthyroidism (over activity of thyroid hormone production), infiltrative exophthalmos (protruberance of one or both eyes and associated problems) and infiltrative dermopathy (a skin condition usually of the lower extremities). This disorder is the most common cause of...
I've had Graves disease since I was 16. I'm about to turn 23 and I had radiation/ iodine treatment to kill my thyroid almost two years ago. Every day is a struggle to stay positive and just get out of bed in the morning. I get so tired sometimes I'll be in bed for days on end. This disease makes me feel like I'm broken or I just need to be fixed. I have seen doctors endocrinologists and still my synthroid medication is not correct and I haven't felt like myself or normal or even healthy for years. I know this isn't cancer or a terminally ill disease... But I just get soo frustrated because everyone say's I just have to get my medication right and then I'll feel better, normal. Im 22... I feel like I shouldnt be dealing with this for another 20 years but It's been 7 years and it affects school work and my personal life. Im so good at hiding my problems and staying my bubbly self on the outside but inside I'm so upset and stressed and I just want to feel normal again. I'm pretty upset and feeling not so positive and just don't know what to do, I just wish I had friends who feel this way or who have gone through this or are going through this to help me out with advice or even just support.
Let me start by saying you are not alone. This disease is so difficult at times for our loved ones to understand because alot of the symptoms are not so transparent. I feel at times too that I'm living a secret, and I wonder at times...wow, if people really knew I'm living with this. I put on a good front that everything is fine, but if they only knew?!
This can be a difficult disease to control if you have a doctor that doesn't really get this. Alot of Endo's and doctors just don't fully understand this disease. I know, at first I couldn't beleive it. I too had RAI in 2008 and I was sick for a long time after that. Once I discovered this place and Elaine Moore www.elaine-moore.com
I started to learn alot more about my disease....that doc's just don't seem to get. The Endocrinologist that gave me the RAI told me "we just don't know much about this disease, ya know"....this was after she gave ;me the RAI and I was desperate for help because I felt sooooo terrible.
There is GOOD NEWS though! but you'll have to become proactive with your disease now and really own it. It's very important to get your blood work done and get copies from your doctor, you are entitled to them. You'll have to learn how to read and interpret the lab results, we here will help you learn to do this, it's quite easy once you get the hang of it. For starters, there are 3 very important tests that you must get done. They are the:
TSH
Free T3
Free T4
Alot of us with graves still have a low or suppressed TSH, which is okay. Your Free T3 and Free T4 should be at least - middle of the range. If you have any lab results or if you can give your doc a call and ask for them (they must give them to you, if asked for), post them here and we'll help you interpret them and see where we can help. I now feel great! not all the time, but I'd say at least 90 percent of the time, which is good for me. It's been a tough road, especially after RAI but life doesn't have to be miserable, really.
Look forward to hearing back and helping you out along the way xo
P.S. sorry if there are any typo's, it pretty early here :)
I would do what jjbrookes suggest. I am happy we were able to help her in any ways that we could. We follow Elaine Moore too. I credit Elaine and few other people for my recovery and I still have my thyroid.
{{{hugs}}} :-)
I've been researching it as much as I can but I'm going to talk to my doctor tomorrow about it. I will post my blood results later today I'm having problems logging into my test results.
Thanks jingling for all your help... If you have any other websites or information mmztcass please lemme know :)
Your story hits close to home with me. I too struggled with the disease post RAI. Through the support of my Endo and a Nutritionist, I went on a completely organic diet. It took about a month until I truly started to notice a marked improvement in my overall well being.
Healthy diet and lifestyle changes have really seemed to help. I do yoga every morning. I no longer need ibuprophen or Naproxen for swollen painful joints. (( I'm 50 years old)) My arthritis symptoms are hardly noticable other than occassional morning stiffness.
You seem to have a lot of stress factors in your life? I feel for you my dear. I pray that you can find your way through this. Perhaps your endo is not hearing you? If you don't feel right...there is an imbalance with your thyroid hormones or body chemistry.
Keep your chin up!
I just wanted to say I totally sympathise and undersand! I was 28 when I was diagnosed at toxic state just over a year ago, though looking back I can see I'd been poorly for quite a while.
I think we share the same thought - you don't get this sick at our age, older people get sick not us!! I've had exactly the same feeling - we shouldn't be dealing with this for the rest of our lifes which will hopefuly be a long time! It's very cruel!
I feel so much better now than at the beginning of last year, but am still getting times of high energy and feeling great to times of depressing hair loss, can't shift any weight, feeling grotty etc. I'm getting married soon and want to start a family, but don't know how I'm going to do that until this is settled - feel angry that it's happened to me now just as things are going well.
Every emotion and feeling you describe I have the same - hiding how we feel under a bubbly exterior, upset, stressed, angry. We maybe across the atlanic from each other, but if you ever want that person who feels the same you know where to find us / me! It's good to share the rants! I've found a lot of suport here, would be good to give some back!:-) Keep your chin up! x
Perhaps a change in medication may help you. I felt horrible on synthroid and levothyroxine...I struggled with fatigue and had difficulty thinking clearly. I switched to Armour and felt an immediate difference. Take care.
Josh
nicolle hang in there, we r all here 2gether! this is my 1st nite, but ill be on it a lot!!!!
I pay about 6 dollars a month for my Armour RX...that's a lot less than I was paying for my Synthroid and levo.
Josh
T3-85
Tsh-24.34
T4-1.12
All seen fine I think it would be nice to know how to read these test results. I still am feeling pretty crappy though...I'm seeing a new endo I'm finding a nutritionist and reading up as much as I can though
I've been on levoxyl synthroid and levothy
I'm quite curious about armour..This is the first I've herd of it.... I wonder why that is? I've been researching a lot too. Is it a newer medication?
Please include the lab ranges to go with the lab results. These can be found on the right side of the paper.
{{{hugs}}} :-)
Free t4- 1.12 (0.81-1.54)
Tsh- 24.34 (
(sry my phone cut it off!)
Thank you. Any way your doctor could run the "FREE" T3 as you had the Total T3 done.
I suspect that both of your Free T4 and TT3 are too low for your needs as mid range for the FT4 is: 1.175.
Maybe you would benefit from taking Armour since it looks like you may not be converting the T4 into T3 properly, hence the higher TSH.
{{{hugs}}} :-)