I have some questions regarding TED, thanks in advance.
Q1- can TED exist when you have normal t3 and t4 ranges?
Q2- can TED get worse if i get from hyper to hypo by taking medicines (overdose)?
Q3- Is TED directly correlated to which figure? T3, T4, Tsh, TraB?
Q4- how effective is selenium?
Q5- difference between steroids drops and pills for TED? Is radiation a good option?
Thanks
Q1- can TED exist when you have normal t3 and t4 ranges?
YES
Q2- can TED get worse if i get from hyper to hypo by taking medicines (overdose)
YES
Q3- Is TED directly correlated to which figure? T3, T4, Tsh, TraB?
NONE It runs it's own course
Q4- how effective is selenium?
Some evidence to say it is beneficial
Q5- difference between steroids drops and pills for TED? Is radiation a good option?
Don't know about this. As far as I am aware there is no cure It will run its course. You have to be patient - difficult though it is. Steroid infusions can help while the disease is active .
Steroids can have side effects so would only be used if disease is very bad.
Ted exists separately to your thyroid hormone blood levels. It will run its own course. With graves disease you immune system attacks the thyroid. The tissue around the eyes is similar to thyroid tissue so the immune system attacks this too. Even if the thyroid was removed, Ted could still occur.
Hi Santos82,
I have TED, but with Hashimotos not Graves. At the moment it’s considered ‘mild but active’ and I’m not having steroids. I’m taking 200mcg selenium (which several studies have shown may help with mild TED), using lubricating eye drops, wearing sunglasses to help with light sensitivity and taking a diuretic to help with upper eye lid swelling (as needed). I’m also taking lutein and zeazanthin (as Eye Complex 7 from Amazon) to help alleviate dry eye.
As I was only diagnosed in the summer, I’m still learning about the condition myself. My Endocrinologist wants me to get my TSH to 0.3 as he thinks this may help stabilise my current TED flare. Even when my thyroid is optimal, I understand that the TED will ‘run its own course’ and may take another year or so to ‘burn out’.
I’m trying to maintain a sense of humour and a glass half full approach, but understand how hard it can be not to be very self conscious of having swollen/ asymmetric eyes. Some days are harder than others. Remember to keep posting if you need any support!
You might find this abstract of interest. Unfortunately, the full paper is behind a paywall.
Thyroid. 2010 Jul;20(7):785-93. doi: 10.1089/thy.2010.1640.
The tale of radioiodine and Graves' orbitopathy.
Ponto KA1, Zang S, Kahaly GJ.
Author information
1 Department of Ophthalmology, Gutenberg University Medical Center, Mainz, Germany.
Abstract
BACKGROUND:
Autoimmunity against the thyrotropin receptor (TSH-R) is a key pathogenic element in Graves' disease (GD) and the autoimmune aberration may be modified by antithyroid treatment. An association between radioactive iodine (RAI) therapy for GD and the development or worsening of Graves' orbitopathy (GO) is widely quoted. RAI-associated leakage of thyroid antigen(s) leads to an increased production of TSH-R antibodies that may initiate the eye injury.
SUMMARY:
RAI therapy leads to prolonged worsening of autoimmunity against the TSH-R, and the number of patients entering remission of TSH-R autoimmunity is considerably lower than with other antithyroid therapies. Scientific evidence has indicated that RAI treatment for GD is associated with increased risk of occurrence or progression of GO compared with antithyroid drugs (ATD) and thyroid surgery. The risks of developing new GO or worsening of preexisting GO is around 20% after RAI and around 5% after ATD. The risk of developing severe GO after RAI is around 7%. Smoking, high levels of pretreatment serum triiodothyronine, and post-RAI hypothyroidism are associated with increased risk of GO, whereas a high TSH-R autoantibody titer is an independent risk factor for the progression of GO. In patients with mild preexisting GO, steroid prophylaxis is effective in preventing deterioration of GO. Also, routine use of prophylactic oral steroids with RAI therapy should be considered in GD patients without overt GO, but even more so in those at higher risks of eye complications such as smokers, old men, and those with severe hyperthyroidism or high TSH-R antibody titers.
CONCLUSION:
In contrast to ATD, remission of TSH-R autoimmunity after RAI therapy is less common, and RAI for GD is associated with definite increased risk of GO. Oral steroids are beneficial for patients with preexisting GO, particularly smokers.
PMID: 20578895
DOI: 10.1089/thy.2010.1640
Thyroid eye disease, the eyes dry, tight gritty sensations I believe are due to hypoglycemia or low Biotin so is the energy drops that's common. I recently started Biotin high dose 10,000mcg/10mg and gotta say that the eyes are lubricated tightness gone, energy drops gone. As for high dose Biotin interfering with thyroid results ie falsely raising thyroid levels, you gotta wonder if high dose Biotin is natures Levothyroxine???
All I can say is it's my personal experience as tried it to try and help with hypoglycemia... do your own research on it and decide... include symptoms of hypoglycemia... the only one I could find that high was by Simply Supplements.co.uk or amazon
Biotin doesn't falsely raise thyroid levels - it directly interferes with the streptin-avidin binding used in many tests (not just thyroid).
The effect could be to raise or lower a test result - there is no blanket "always raises" across all tests.
I am not saying anything about the effects of biotin - about which I know little. If it is helping you, that is great.
By some of what I read on it, they weren't sure why themselves. Sooo makes it simpler/easier to give it a try... I know one thing my eyes love it.
biotin only interferes with the testing since a form of biotin is in the test kit itself which throws off results falsely......of the tsh therefore it is said to be off biotin a week or 5 days b4 you do your thyroid test.....but it doesnt actually interfere in reality of your thyroid function...just the labtest.....
By some of what I read on it, they weren't sure why themselves. Sooo makes it simpler/easier to give it a try... I know one thing my eyes love it.
Hi I am not sure although I have eye problems and hashimotos which seems to me to flare up periodically. I have glaucoma, wondering if this is related, as I have normal tension in my eyes when it is measured.
RAI is NOT an option - it will make your eyes worse - and I am speaking from experience.
I can't answer your other questions, as I have had to learn of my own situation, back to front, after the RAI treatment I was given for Graves Disease back in 2005.
There is more information available now, so please do your research.
The Elaine Moore Graves Disease Foundation in the States is the only Graves specialised website I have found. This lady has the disease and writes extensively through books and on her website, which is open to everybody, which also has an open forum, much like this amazing site, where you can ask questions and receive considered opinion.
Hi
I have had Teds for the past 4 years. Mine was so bad I had to have steroid infusions and radiotherapy. I could not close my eyes and family members could not recognize me . Both treatments helped and I had to be seen at the eye hospital on a weekly basis. My eyes still feel dry sometimes but are fine. I do still use eye gel when needed but that can be once in 2 or 3 months. Selenium and other supplements did not help much. However, each individual case is different. Goodluck
Hello again Santos 82,
Not sure if you are in the UK, but wanted to recommend TEDct - I spoke to Gillian on their advice line and she has been extremely supportive. She did some research on my behalf about TED specialists in my area and phoned me back with her findings. I also got a useful information pack from them in the post.
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