Well I did post about this before as my 15 year old daughter has swollen thyroid and inflammed eyes.. doctor suspects Graves.... but all blood tests come back normal (bit like me with the SS blood tests).
Does anyone know if you can still have Graves Disease without blood test confirmation? We are awaiting an ultrasound scan, but until we get some sort of diagnosis I am worried about my daughter's eyes as they are painful and inflammed and I have to send her to school otherwise she will miss so much. Summer break is only a few weeks away thankfully.
She has been prescribed Viscotears, but although soothing are not helping much with the pain/inflammation.
Many thanks.
Hi Fluffie
If your doctor suspects Graves - has he referred your daughter to an endocrinologist? They would have to do specific antibody tests for Graves and not just a normal thyroid panel.
Do you have an eye casualty clinic near you? I'm lucky to live quite near a dedicated eye casualty dept. and if my daughter was having a lot of problems with her eyes I would take her there.
If you don't - can you get your doctor to refer her to an opthamologist. That would be the next logical step for treatment not working.
Take care - Scottie :)
Thanks Scottie..... some good tips!! I just have a blank head when it comes to what to do next!
I will go back to the GP if her eyes dont get any better and we do also have the ultrasound appointment on her thyroid coming up (not had appt through yet).
If the ultrasound shows nothing then the GP has to have an idea what to do next!
What with me, and now my daughter, I think my GP is thinking we are moving into the surgery!
Hi. I have Graves with some eye involvement. My blood antibody level stays normal. My actual diagnosis is subclinical Graves disease. My T3 and T4 dont get too badly out of whack but my TSH drops a lot and causes some really bad symptoms. There is another test an endocrinologist might suggest called a thyroid uptake scan. That will give confirmation of Graves if bloods don't. Everyone is different. Some people don't have to have severe blood test abnormalities to have severe symptoms. I'm living proof of that.
Good luck to you and your daughter.
My daughter developed Grave's disease when she was around 16. She gained a lot of weight and had a noticeably swollen thyroid, though we just thought she was eating too much and people usually lose weight with a hyperactive thyroid. Her blood tests were abnormal, we were referred for an ultrasound (it might have been a thyroid uptake scan) which confirmed Graves's disease. It caused her eyes to be large but nothing else was wrong with her eyes. She had a very rapid resting heart rate, was intolerant of heat and was very hungry all the time. They decided they had to treat her. The treatment is to destroy the thyroid. The Endocrinologist suggested Tapazole a medication instead of surgery or radioactive iodine. So she took the Tapazole for about two months and then developed medication induced hepatitis. Her liver was inflamed, she was really sick and had to stop the medication. But it brought her thyroid function back to normal. She has lost the weight, and is doing well with normal thyroid function tests although her resting heart rate still runs between 110 and 120. Anyway, as was previously mentioned, the expert is an endocrinologist although we were not referred to him until after the ultrasound when the diagnosis was made by the radiologist right there. They just took us in a room and told us immediately without having to go back to the GP. So hopefully you will get some answers when she has the ultrasound.
KL
So--here we are Sjoggies, with daughters who have Graves Disease. My daughter showed autoimmune disease about 10 years before I was diagnosed. At age 28, she became diabetic, Type I, and within a year after that had Graves disease diagnosed. I think it was there, but her dr didn't catch it. Someone at work noticed her neck "looked like it had a lump."
Well, she did indeed have a lump. There was several ways they could have handled this, but they removed her thyroid and she takes Synthroid.
The Type I (insulin dependent) is autoimmune. My sister just asked me that yesterday. I can't imagine all this 10 years + later that she doesn't realize this. So, my daughter had the diabetes and (I think) the Graves all at one time and they didn't catch the Graves. She had to point it out to them. She is about 110-120 lbs and they didn't notice this huge neck? It didn't look odd to me, as she didn't ( and doesn't) live with me then. I wish it would have been me who got the diabetes instead of her and I's take the Sjogrens too. Lucy
Thanks for the replies. My daughter is as skinny as a rake, but I didnt notice her swollen thyroid... feel bad about that! Surely I should of noticed!!! Anyways, I will post when we have had the ultrasound as hopefully we will have more of an idea as to what is going on.
Many thanks, once again.
My 21 year old daughter has Addison's disease, thyroid and adrenal insufficiency. Her symptoms began when she was about 15. She saw 7 doctors here in town, including her gp, and ear, nose & throat drs. One finally sent her to a pediatric endocrinologist. After several visits and tests, she was finally diagnosed. Whatever you do, do not give up. Addison's can be life threatening. I don't know what we would have done if we had not persisted.
Try a pediatric endocrinologist if you have one available.
Wishing you luck and many prayers!
jpd
Most of the responses to posts about children with AI problems seem to refer to daughters. Do any of the mothers with Sjogren's have sons with AI diagnoses? Roxanne
Hi
My son isn't a child anymore but he's still my baby and he's been dxd with Crohn's disease recently. Its AI. Thinking way back there were episodes in his childhood that could maybe have warned us it was coming. I just didn't know so much then.
Take care - Scottie :)
Quote from: Scottietottie on July 16, 2009, 05:32:06 PM
Hi
My son isn't a child anymore but he's still my baby and he's been dxd with Crohn's disease recently. Its AI. Thinking way back there were episodes in his childhood that could maybe have warned us it was coming. I just didn't know so much then.
Take care - Scottie :)
Hmmmm food for thought there Scottie.... my son has episodes of stomach problems, which he always puts down to allergies (EGG) or a dodgy take away.... I have always suspected it is something other than that but at 17 he is reluctant to talk about it. He has episodes of chronic pain and sickness (ulcer like acid pain across top of stomach).
Same her!
My middle son had lots of food allergies as a youngster. He's now 28 and has food triggered bouts of pain and diarrhea.
My youngest son has fibromyalgia and also some bowel problems.
Definitely worth considering a link.
Kathyx