[carla]

in reply to: I can’t do this any more – sorry :( #1069252

Hi Hyperem, you know that you are going to be ok? You took the first step in the right direction and you have spoken about the way you feel, the second step is that you have asked for help, from all the GD group, but you have still asked. I know how you feel even though I don’t even have the disease, I feel like you because my daughter has the disease and it is so unfair to be 13 and to be struck down by this. You just have to think of your children, men are from mars remember, they don’t get it like we do, think of your children, think of how good you will feel this time next year, think of all you have to look forward to in your life, there are things, think of happy times and surround yourself with good festive music and people, not classical music and time alone. This is how I stop myself from crying each day about my daughter, I go to work, I talk about how I feel. I don’t care if people are sick of hearing, it is the keeping it inside that is bad, get it all out.

[carla]

in reply to: Swine Flu effects on Graves #1069276

My13 year old daughter was diagnosed with GD and TED in the first week of June this year and I asked my husband, a Medical Practioner, the same question. We live in Australia and the disease is running rife through this country. My husband said that our daughter is at higher risk to get it and if she got it, she could get very ill. Not to make you worry, but I am a firm believer in the idea that usually when you worry about something it doesn’t happen. It tends to be the things you don’t worry about that you end up getting. So if it were me, I would worry and that will stop it from infecting our daughter!!

[carla]

in reply to: Intravenous Glucocorticosteroids #1069636

Took my daughter to see the opthalmologist this afternoon and he wasn’t happy. Apparently her left eye is showing deterioration, as in folds forming at the back of the eye. Sent us off to the hospital for 500 mg IV pulsed steroids, to be repeated in one week. Got the impression that the endocrinologist and paediatrian are not overly happy with the steroids (she has already had 2 1 gr. pulsed iv steroids, then 50 mg oral, then 40 mg oral, then 30 mg oral and now this. Apparently this regime is now: 500mg iv once a week for 6 weeks and then 250 mg iv once a week for 6 weeks. They are going contact some super duper guru in the states for his verdict on this treatment, but meanwhile, have started it.

[carla]

in reply to: Orbital Decompression DONE! #1071453

Hi there, if you don’t mind me asking, why did you end up having the orbital decompression? Did you ever have oral or iv steroids? How long have you had Graves eye disease? Val

[carla]

in reply to: Intravenous Glucocorticosteroids #1069633

Hi Sue,
How long have you had Graves Disease and Graves Orbitopathy for now? How old are you? (not exact, don’t worry, between 20 and 30 or ???)

[carla]

in reply to: Gardasil Vaccine and Graves Disease #1069556

Well this is the funny thing. She definitely did not have undiagnosed Graves. I know this for a fact because she was the pillar of good health, a straight A student, a talented dancer and singer as well as athlete, in fact, the perfect child. Come the 1 May 2009, all that changed and she went off to dancing and came home really unwell and now we are here with Graves, 12 weeks later. She basically got the symptoms of Glandular Fever and just was getting worse and worse until she had lost so much weight that we noticed a Goitre and other symptoms of Graves and she was then tested for Thyroid problems (this was after 16 other tests and scans). Her levels were so high that she was in a Thyroid Toxic State. Her levels are finally back to normal and now our biggest problem is her eyes as she has had an epidsode of Optic Nerve Compression as evident by loosing her colour vision. (corrected by 2 pulse IV steroid does over 2 days). Bearing all that in mind and then hearing of a possible link between Gardasil Vaccine and Graves, I am feeling like the worst mother in the world for insisting that my daughter have this vaccine, as you can imagine.

[carla]

in reply to: Intravenous Glucocorticosteroids #1069631

Hi Sue, (and others)
Can you clarify for me…did you have 1 gram IV on one day and then 1 gram on the next day and then this treatment repeated 2 months later? Did you have any oral steroids after you had received the IV doses? I have been advised that RAI is not an option for a 13 year old child and that IV steroids or if that doesn’t work, decompression, are the only choices. I would like to add that apart from the fact that my daughter lost her colour vision in one eye and has very puffy, red (inflammed) eyelids, she has no proptosis, no double vision, her eyes feel normal. The 3 months of once weekly IV steroids is to prevent a relapse so they tell me.

[carla]

in reply to: Singing #1069765

Hi, I was diagnosed with Graves 6 weeks ago. I am 13 and also a singer. I hope for a career in musical theatre one day. I have been on beta blockers and carbimozole for 6 weeks and am also on 40 mg of steroids a day (for thyroid eye disease). Only tonight I was singing and have noticed that when I am, it feels like something is in my throat and I can’t sing properly anymore. My goitre has gone and I am no longer breathless when I sing, just doesn’t feel right. I know how you feel.

[Author]

Posts