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...
Hello
I'm new to this site. I have Graves Eye Disease and I'm currently seeing an ophthalmologist or my double vision and trouble focusing. For the last couple of years, off and on, I get solumedrol intravenously since my body just does not handle taking the steroids by mouth well. Side effects are horrible. The solumedrol tends to correct my vision temporarily. I have not seen an endocrinologist in over three years. My internal medicine doctor treats my hyper thyroid with levoxyl but she only does blood test for TSH. I could kick myself because I think I have needed more blood work in order for her to treat my hyper thyroid. I have lost weight, and I eat all the time, grouchy, rapid heartbeat, hair will not grow, shedding a lot, puffy eyes, watery eyes, gritty and sand paper feeling. My ophthalmologist just ordered labs for my thyroid...about 6 different ones. Thank God. I'm looking for an endocrinologist so that I can get better care. Does anyone have problems with their double vision and/or trouble focusing know if this is permanent damage? If my thyroid gets in shape, will that help with this all. I've had the eye symptoms before but recently this started 9/2014 with gradual different eye symptoms. I hope someone will share their experience and offer some advice on if I'm headed in the right direction or what I should do. BTW, I go back to ophthalmologist this week for f/u on blood work. Comments welcome. "
I'm new to this site. I have Graves Eye Disease and I'm currently seeing an ophthalmologist or my double vision and trouble focusing. For the last couple of years, off and on, I get solumedrol intravenously since my body just does not handle taking the steroids by mouth well. Side effects are horrible. The solumedrol tends to correct my vision temporarily. I have not seen an endocrinologist in over three years. My internal medicine doctor treats my hyper thyroid with levoxyl but she only does blood test for TSH. I could kick myself because I think I have needed more blood work in order for her to treat my hyper thyroid. I have lost weight, and I eat all the time, grouchy, rapid heartbeat, hair will not grow, shedding a lot, puffy eyes, watery eyes, gritty and sand paper feeling. My ophthalmologist just ordered labs for my thyroid...about 6 different ones. Thank God. I'm looking for an endocrinologist so that I can get better care. Does anyone have problems with their double vision and/or trouble focusing know if this is permanent damage? If my thyroid gets in shape, will that help with this all. I've had the eye symptoms before but recently this started 9/2014 with gradual different eye symptoms. I hope someone will share their experience and offer some advice on if I'm headed in the right direction or what I should do. BTW, I go back to ophthalmologist this week for f/u on blood work. Comments welcome. "
I would also look for an Internist to treat. Did you get an RAI?
The thyroid tests to order are: Free T3 and Free T4 in addition to the TSH. The TSH alone cannot be used when one has positive thyroid antibodies. The antibodies skews the TSH reading. So we have to go by with using the Free T3 and the Free T4 to dose and assess how we are feeling.
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Thyroid levels (the Free Ts) not in the 'right' places often the eyes don't do great. Once in normal ranges, from the mid to the upper third ranges, can do better with the eyes then.
Thyroxine Binding Globulin,
Trilodothyronine (T3),
Thyroxine (T4),
Thyroid Antibodies,
Thyroid peroxidase (TPO), AB,
TSH,
Thyroid Stim Immunologobulin,
Thyrotropin Receptor Ab, Serum
Are the above test gonna provide him with results that could help?
Let me know your thoughts.
Thank you,
Yes, when I was diagnosed in 1994, I was given the radioactive treatment and was put on synthyroid which I took for years. Now, I'm on Levoxyl .125 mcg.
Of the tests ordered I don't think there was a Free T3 (Triiodothyronine Free Serum) and a Free T4 (often known as Thyroxine Free Direct Serum).
Hopefully the T3 and the T4 are not the Total T3 and Total T4. The reason why the Frees are better that these are not effected by diet, hormones, etc. whereas the Total Ts are.
I am sure once the results are back, it will likely show that the Ts are not where you'd feel your best there at. Most of us with thyroid issues do better with our Free Ts in the mid to the upper third lab reference ranges.
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No, the test ordered do not include a Free T3 Triiodothyronine Free Serum and a Free T4 (often know as Thyroxine Free Direct Serum. Very disappointing.
Please tell me exactly what I need to have my doctor test for? I want to get this right and I want TED to go away.....
Thank you,
CW
Which did you do better with, the Synthroid or the Levoxyl?
Another thing, even though I know it's been awhile since the RAI, the thyroid antibodies can be positive for many years before ever settling down. It could be the case for you why having hypER spells now.
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Perfect, I will ask my GP to test the Free T3 and the Free T4 and hopefully from all the test we can get me straightened out. if the thyroid #'s get right, will my TED go away?
Help me understand what you mean on this? "Another thing, even though I know it's been awhile since the RAI, the thyroid antibodies can be positive for many years before ever settling down. It could be the case for you why having hypER spells now." Question - Should I have them do something to the thyroid itself...take it out?, scan to look at it?
{{{hugs}}} "
elaine-moore.com
I have never had an RAI as I've been on a low dosed ATD (antithyroid drug) for 11+ years now. Currently I fluctuate with taking between 1.875 mg to 1.25 mg per day. I have several autoimmune disorders with my thyroid being one of them.
By going to Elaine's site, you will find the articles on how thyroid antibodies stays positive for many years from the RAI and can also find articles about the eyes.
I don't really have eye issues as you have described except when it fluctuates with my cycles and I go through dryness here and there. But I take fish oil (Salmon and Cod Liver) as well as eye supplements containing bilberries and Lutein and whatever else.
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If you live in the states and not in a state that doesn't allow this, you can order your own thyroid labs at places like healthcheckusa.com and privatemdlabs.com/
Free T3, Free T4, and TSH usually costs around $85.
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