[klassey]

#1184591

Thank you Kimberly for your response, I was asking about the TED that I am experiencing now. Is it wise to continue with steroids after the first 12 weeks of steroids if the disease is not burned out yet?

Gail

[Kimberly]

#1184592

Hello – If your TED is still active at the 12 week mark when you stop the steroids, you could see the swelling and double vision get worse. So this is an issue where you and your doctor will need to weigh the risks and benefits.

If you are 100% happy with your doctor, great – if not, a second opinion might be helpful, as not all doctors will agree on when and how long steroid therapy should be used! The “Looking for a Doctor” thread in the announcements section of the forum has a link where you can find an eye specialist near you.

[snelsen]

#1184593

I can only state my experience. I view them as two separate things, but kinda related. The important thing regarding eyes, is to be sure you are being seen by a near-ophthalologist. With TED, the typical response to steroids, is for the TED to improve. But when steroids stopped, for TED to return. The big things to be concerned about are:
-decreasing vision-probably because there is pressure on the optic nerve. Without intervention, usually and orbital decompression, blindness can result.
-damage to cornea (cause of bulging eyes)

No, we can’t just continue to take steroids. That is a temporary measure to save vision, by relieving the pressure on the optic nerve.

If double vision and increasing decrease in vision occurs, most probably an orbital decompression will be needed, of course, that means you should be seeing docs who know this, and or be referred to a doc who does.

As is stated in my history, I got TED multiple decades, almost sixty years, after my sub total thyroidectomy. They left a teeny tiny piece of thyroid gland. Subsequently, it was not functioning at all, and I began Synthroid.

I take Synthroid now, and eyes work well after my many surgical procedures.
The double vision bothered me most of all…plus not being able to see, and realizing my vision was diminishing.

[snelsen]

#1184594

sorry, typo up there. near-ophthalmologist

[snelsen]

#1184595

another typo~!! Neuro ophthalmologist

[klassey]

#1184596

Kimberly,

I am on my 5th steroid IV treatment and have seen improvement. The Nero-Opthomoligist I’m seeing seems well informed about TED as he said some people may need more than one round of steroids and others might need more. Also told me about the stronger steroid R ?? that we could use and also surgery and or prism glasses. I return to him in November for a check up after the 12 weeks of IV steroids., to measure the eyes etc. Is there a way to get this disease to burn out faster? What other questions should I be asking my Doctor?

Klassey

[Liz1967]

#1184597

I had 12 weeks of weekly IV steroids. Seemed to work until treatment over and within a week or two off steroids, eye disease progressed again with more retraction, irritation and worsening double vision. I had the TT at week 6 of the steroids. I then had two weeks of daily orbital radiation and oral steroids. The lid retraction improved a lot after the first week and the double vision stopped progressing a few weeks after radiation over. The rest of it, like irritation and pain, stopped a couple months later, about six months after the TT, and the eye disease was pretty much burned out. Waited six months, during which there were no changes to be sure it was stable, and corrective surgeries could begin. I just finshed the last of five surgeries n each eye and I was diagnosed with Graves and the eye disease began three years ago this June. I had some delays between surgeries due to complications and travel issues. My time between start of eye disease and burnout was about a year, 18 months if you include the extra six mnths to be sure no further changes would occur.

[Kimberly]

#1184598

klassey wrote:

Is there a way to get this disease to burn out faster?
Klassey

Hello – Unfortunately, TED runs its own course and there are no shortcuts that I am aware of. However, not smoking or being around second-hand smoke is important, and it’s also important to make sure that your thyroid levels are stable. Although TED can strike at any time (in some people even before their thyroid levels go out of range), there is an increased risk when we are hyper or hypo.

[Liz1967]

#1184599

Early thyroidectomy does seem to shorten course. I just read in the GDATF August newsletter that the new Guidelines are recommending thyroidectomy for people with active moderate to severe TED.

Horm Metab Res. 2016 Jul;48(7):433-9. doi: 10.1055/s-0042-108855. Epub 2016 Jun 28.
The Effect of Early Thyroidectomy on the Course of Active Graves’ Orbitopathy (GO): A Retrospective Case Study.
Meyer Zu Horste M1, Pateronis K1, Walz MK2, Alesina P2, Mann K3, Schott M4, Esser J1, Eckstein AK1.
Author information
Abstract
The aim of the work was to investigate the effect of early thyroidectomy on the course of active Graves’ orbitopathy (GO) in patients with low probability of remission [high TSH receptor antibody (TRAb) serum levels, severe GO] compared to that of continued therapy with antithyroid drugs. Two cohorts were evaluated retrospectively (total n=92 patients with active GO, CAS≥4). Forty-six patients underwent early thyroidectomy (Tx-group) 6±2 months after initiation of antithyroid drug (ATD) therapy, while ATD was continued for another 6±2 months in the ATD-group (n=46). These controls were consecutively chosen from a database and matched to the Tx-group. GO was evaluated (activity, severity, TRAb) at baseline and at 6 month follow-up. At baseline, both cohorts were virtually identical as to disease severity, activity and duration, as well as prior anti-inflammatory treatment, age, gender, and smoking behavior. At 6 month follow-up, NOSPECS severity score was significantly decreased within each group, but did not differ between both groups. However, significantly more patients of the Tx-group presented with inactive GO (89.1 vs. 67.4%, * p=0.02), and mean CAS score was significantly lower in Tx-group (2.1) than in ADT-group (2.8; * p=0.02) at the end of follow-up. TRAb levels declined in both groups (Tx-group: from 18.6 to 5.2 vs. ATD-group: 12.8-3.2 IU/l, p0=0.07, p6months=0.32). Residual GO activity was lower in Tx-group, associated with a higher rate of inactivation of GO. This allows an earlier initiation of ophthalmosurgical rehabilitation in patients with severe GO, which may positively influence quality of life of the patients.

[klassey]

#1184600

Thanks Kimberly, I am grateful for your quick responses.

Klassey

[klassey]

#1184601

Thank you Liz for this information.

[Author]

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