# TED - 2 Types Please Help with Question



## SuzieD (Feb 17, 2010)

http://www.suite101.com/blog/daisyelaine/1074

Above is a link to an article in which she talks about 2 major Subtypes of TED.
Here is a bit of the article that I would like to question.

_"There are two major subtypes of TED: *a milder form related to abnormal thyroid hormone levels,* and an autoimmune congestive disorder that is usually more clinically significant. The first type of TED is the most common TED subtype seen, and with sensitive imaging tests, its seen in nearly all patients with autoimmune hyperthyroidism and in a smaller number of patients with hypothyroidism.

In hyperthyroidism, eye symptoms are usually spastic and include staring, dryness, and eyelid retraction.* In hypothyroidism, periorbital edema or swelling all around the eye socket occurs*. *Both of these forms of TED are related to thyroid hormone imbalance, either excess hormone acting on the nerves that supply the eye or deficient hormone causing venous congestion, impaired circulation and fluid stagnation.l*
*This form of TED resolves within a few weeks after thyroid hormone levels are corrected and brought back into the normal range. Note, by thyroid hormone levels I mean FT4 and FT3 levels*. The pituitary hormone TSH can stay low or suppressed for many months during the course of treatment for hyperthyroidism and doesn't mean that the patient is still hyperthyroid. TSH also lags at least 6 weeks behind thyroid hormone levels and often remains elevated longer in people who have been hypothyroid. Relying on the TSH level can be misleading, and in treating TED, hypothyroidism must be avoided for reasons described in the next paragraph."_

Ok, now for anyone who can help. I had a perfectly fine thyroid. My dr (I should say x dr, I no longer go to her) put me on Levothyroxine to help with weight loss. I was only on it for 11 weeks but in that time I developed eye pain & my MRI reveals eye muscle enlargement: TED. I know this is unusual but while on Levothyroxine I actually came close to being hypo when we checked my #'s at the end of 3 months.

The article says if you have the type of TED that is more due to fluctuating hormome levels , and in my case I'm guessing the meds brought me to hypo, swelling aroung the eye socket, it says it can resolve within weeks after thyroid levels go back to normal. I have been off Levothyroxine since 11/30 but I am in great pain (probably due to the swelling in my eye). This has brought on great anxiety which I'm sure is not helping. While on the drug my TSH went to 2.73 Ft4 1.12 (She didn't check my Ft3)
Latest blood was 2/1 TSH 2.17 (Range .358=3.740) Ft4 1.21 (Range 0.76-1.46) & Ft3 2.77 (Range 2.30-4.20)

But here's the BIG question -* HOW DO YOU KNOW IF YOUR TED IS DUE TO ABNORMAL LEVELS AND WILL CORRECT ITSELF FAIRLY SOON, OR IF YOU HAVE AN AUTOIMMUNE CONGESTIVE DISORDER???? WHAT TEST DETEMINES IF YOU HAVE AN AUTOIMMUNE CONGESTIVE DISORDER?* iN READING IT MENTIONS TRab - Mine are 7 (Range (0-9) It says anything less than 9% is negaive. 10 - 15 would be intermediate & 16% or greater would be positive.
I never tested for cytokines. Is this something we check as well????



My anxiety is crazy & I am trying to get that under control so my body can heal.

*I am sorry this is so long* but I am trying to figure out if I have the type that should resolve in a shorter time when my Ft3 & Ft4 are considered normal or this is more The congestive autoimmune form.

What doesn't make sense is Iwas a perfectly healthy woman - NEVER a thyroid issue and my irresponsible dr gives me Levotyroxine to help me loose 10 pounds!!! I never knew the risks associated with going on the drug or I certainly never would have. I very naively trusted her.

Can someone help me make sense of this??????Thank you!!!


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