[Liz1967]

in reply to: Orbital Radiation – Expectations #1184328

Lisa, here is a link:

http://www.ncbi.nlm.nih.gov/pubmed/25012831

In case there is a problem accessing this link from a journal from 2015, here is the conclusion:

“Orbital RT is a generally well-tolerated treatment that helps minimize the dose and duration of corticosteroid therapy for patients with GO while improving ocular symptoms, including proptosis and diplopia. Prospective research should consider using corticosteroid requirement as a measure of response to orbital RT for GO.”

This study is from a respected journal. If you do a Pubmed search, you will find other recent studies. There seems to be a renewed interest in orbital radiation for Graves.

Hope this helps.

[Liz1967]

in reply to: Proptosis recurrence 3 years after OD #1184348

Thanks for the info! I am finishing up with the reconstructive post TED surgeries and it is my greatest fear that somehow it will start up again, even though that is really rare. Bad enough having it once. So glad you have a better dagnosis than a TED reactivation!

[Liz1967]

in reply to: Recovery from strabismus surgery #1184333

I was wondering how you were doing. It is my understanding that the brain can easily fuse up to 7 diopters of torsion. I believe that because that is where I am right now. Sorry you are not yet in single vision. Have they suggested further surgery or at least told you how long to wait to get final result? Everything about this disease involves waiting for something.

[Liz1967]

in reply to: Orbital Radiation – Expectations #1184322

Jeff, I had orbital radiation done at Emory in Atlanta. I had daily treatments for 11 or 12 days, can’t remember which, but slightly longer than the normal course of ten days. The treatment time is very short, like a minute total or less. They make a mask of your face, put it over your face each time, and affix it to the table. I know, sounds like torture but it looks like a hockey mask only made of plastic webbing. Anyway, you stay still, you see a blue light go across on each side and you are done. I had optic neuropathy soon after onset of TED, which necessitated weekly intravenous steroids for three months. I had the radiation after that to stop the progression of the double vision as well as any optic neuropathy exacerbation in the future. I had really bad lid retraction on one side. After the third treatment, the lid came down a lot. It helped with the redness and irritation somewhat. The double vision slowed a bit but I also had a thyroidectomy in the middle of the steroids so that brought it all to a halt in about six months. You do take oral steroids in a tapering dose starting a couple of weeks before treatment and stopping a couple months after. The radiation doc told me that he had patients sent to him after orbital decompression failed to cure optic neuropathy. I personally know one person who continued to lose vision after emergency orbital decompression for optic neuritis and had to have orbital radiation. Losing vision is the worst result of this disease and I really wanted to take no chances. There are people who have better results than mine in reversing double vision. It is best done in the first six months of TED and I was already at 8 months. The risks are mainly cataract formation, which did happen to me from the radiation and the steroids. There are minor risks of retinal issues but a good radiologist can keep any risks to a minimum. If I had it to do over, I would probably skip the steroid infusions and do the radiation early. Thyroidectomy halts the disease progress within 6-12 months but I think maybe radiation would have stopped the muscle fibrosis sooner. At any rate, I was more comfortable and I only progressed a few more diopters of double vision. Hope this helps.

[Liz1967]

in reply to: Methimazole More Effective than Radioiodine for Opthalmopathy #1184307

This is just one study, there are several newer ones, indicating total thyroidectomy has the most benefit for thyroid ophthalmopathy. This particular study does not find medical therapy to benefit Graves eye disease.

Surgeon. 2009 Oct;7(5):290-6.
Graves’ ophthalmopathy: the case for thyroid surgery.
Lowery AJ1, Kerin MJ.
Author information

Abstract
Graves’ disease is the most common cause of hyperthyroidism and is frequently complicated by ophthalmopathy, which can be a debilitating component of the disease, resulting in impaired quality of life. The management of Graves’ disease aims to restore the patient to a euthyroid state and minimise the extent of extrathyroidal manifestations such as ophthalmopathy. Management options include medical therapy, radioactive iodine (RAI) and surgical intervention in the form of thyroid resection. Graves’ ophthalmopathy (GO) is often resistant to or even aggravated by medical therapy and RAI, both of which have unpredictable relapse rates. The extent of thyroidectomy in the management of benign thyroid disease remains controversial. Total thyroidectomy is being increasingly favoured as the procedure of choice for treatment of benign thyroid disease. Recent study has indicated that it can be performed with minimal complications at a rate comparable to the less radical subtotal thyroidectomy. The predictable outcome and lack ofdisease recurrence make it an attractive option for benign conditions such as Graves’ disease. In addition, there is increasing evidence that total thyroidectomy may have a beneficial effect, inducing an improvement in eye signs and symptoms in cases of GO. This review discusses the indications for surgical intervention in Graves’ disease, with specific focus on the extent of resection and the relative merits of subtotal and total thyroidectomy in patients with GO.

[Liz1967]

in reply to: A Week Post-TT :) #1184304

Congratulations! Levothyroxine isn’t hard to dose. You may be on the low or high sides of normal until you get your dose perfect, but that is so much easier with a measurable TSH. I felt like you did about getting it done sooner and I had it done about 8 months after Graves diagnosis! Even that short a period on methimazole was too long. Glad you are doing well.

[Liz1967]

in reply to: Success Story (A Blast From the Past) #1184290

The manufacturer is on my prescription bottle, in my case it is Lannett. While absorption may vary between manufacturers, including Name brands, within the manufacturer, it remains stable. In fact, Lannett levothyroxine has a better absorption rate than Synthroid. One brand comes in a gelatin capsule which makes it less affected by things in your stomach, I think Tirosint. Anyway, things like proton pump inhibitors, like Prilosec, can interfere with absorption. Coffee can cut absorption by 25%, which is okay as long as you either drink coffee regularly and a slightly higher dose takes care of that, or you don’t drink coffee and you need lower dose. Steroids affect absorption definitely. Weight changes, if significant, change things too. That being said, people with normal thyroids have periods when they feel “off”. I tended to forget that because you don’t pay attention when you don’t have a health issue or aren’t on meds of any kind. Now I just ignore the stuff I would have ignored before Graves! Like you, having the thyroid gone was a relief and I am happy to feel normal. Glad you are doing well too.

[Liz1967]

in reply to: Strabismus surgery…. #1184110

No one at Kellogg has checked antibodies because my thyroid has been removed and antibodies go down within a year of that. They do look at stability but the only changes I have had since six months postop TT when the eye disease reached the cold stage have been the result of mechanical manipulation during the ODs and lid surgeries. Actually, the only docs at Kellogg who look at Free Ts or TSH is anesthesia requesting them preop general anesthesia. I think if you still have a thyroid, or if the eye disease occurred many years after TT, it might be different.

[Liz1967]

in reply to: T4-Only Versus T3/T4 Combination Therapy – Please Share Your Experiences #1184238

I am fine on generic levothyroxine. I was actually on a good dose that the surgeon had determined, but when switched to endo, she lowered it because she for some reason liked the TSH around 4. Now I use a nurse practitioner and have been stable at a good level for many months. I am consistent with drinking coffee and not using proton pump inhibitors like Nexium, etc., as well as the hour fasting after taking levothyroxine and no calcium for 4 hours after. I had considered Armour or T3 when I was a bit out of whack, but once I figured out how slowly my body responded to dose changes, I learned to be more patient, never an easy thing for me. I never felt terrible but I feel normal now, except for the eye disease related anxiety!

[Liz1967]

in reply to: Strabismus surgery…. #1184106

Laura, my surgery is February 26. They will do measurements an hour prior to surgery. I am pretty sure nothing has changed in past three months. We will just miss each other! I will have two muscles in left eye, horizontal and torsion, and one in right eye for horizontal. Thanks for the gel pack tip too. I am not sure if we are allowed to mention surgeon names, but my docs first name starts with “s ” for the muscles.
The lid surgery was a definite game changer as far as comfort. Can’t tell you the difference it has made. I would try to correct the droopy lid, it is pretty noticeable, but not if it would sacrifice comfort. The other non droopy eye is comfortable so I am hoping raising the lid is possible.
I was so hoping your experience would be easier, for your sake and mine! Another poster here had a similar experience to yours so guess I will be prepared for it at least. Keep us updated on your progress.

[Liz1967]

in reply to: Strabismus surgery…. #1184104

Laura, I was hoping you would post about your surgery. I am having mine in two weeks also at Kellogg and getting nervous. Do you know how many muscles they did on each eye? I had the lids done six months ago, six months after the decompressions. The surgery was not bad at all but I had only upper lids, not lower. My left eye is now a bit droopy rather than a lot retracted and right eye is fine. I am so much more comfortable, only use drops a couple of times a day. Still use ointment at night and cover lightly with plain plastic wrap on one eye. They did lids first as I have no vertical diplopia so did not expect position of eye with respect to lids to change and I was so uncomfortable with retracted lids. I do have torsional issues so will do another muscle on one eye. Hope you feel better soon and stay in single vision soon.

[Liz1967]

in reply to: Largest eye muscles Dr. has seen in his 25yrs! #1184269

I have never heard of that approach. Are you sure that is what they said? Usually, one or two of three orbital walls are decompressed (bone removed). The medial wall is the wall close to the nose, the inferior wall is below the eye and the lateral wall is the outside corner farthest from the nose. The medial and inferior walls can be accessed either through the nose and sinuses, usually done by an ENT, or through an incision in the corner of the eye by the nose by an ophthalmic plastic surgeon. The lateral wall, which is what I had done, is accessed through an incision in the outside half of the upper lid and is also done by an ophthalmolgist. Orbital fat can also be removed to decrease inflammation and make more room. No one has ever mentioned superior wall except once in passing that it is never done. Find an ophthalmic plastic surgeon familiar with Graves. Orbital radiation is another option to explore for optic nerve compression. I had steroids, orbital radiation and orbital decompression. The most important thing you can do is find a center or university or individual ophthalmologist with a lot of experience with Graves eye disease.

[Liz1967]

in reply to: New To GDATF – Eye Surgery(ies) #1184265

I had severe thyroid eye disease. I thought I could avoid orbital decompression as I had very little proptosis. I had some optic neuritis but that was corrected with steroid infusions. Glad I had it done on both eyes. For me, it helped the dryness a lot. I need muscle surgery and they needed to make room to move the muscles and so my eyes could move better. It can recur years later, so if you skip the decompressions and have just lids or muscles, it can ruin the effect of those surgeries if it recurs. Your orbital surgeon is the best to advise you. If he thinks you need it, you need it. I had lids done in September and the one really retracted lid is now a bit droopy! I had it done at a center specializing in Graves eye, so this surgery can require some fine tuning. If it doesn’t go up, I will need it fixed again so none of these surgeries always go perfectly! The lid surgery helped the dryness. They do like your thyroid levels stable and your disease burned out before doing lids. The orbital decompressions help the inflammation a lot, which may hasten burn out of the disease as it does stop optic nerve issues too. Good luck!

[Liz1967]

in reply to: TT scheduled! #1184208

sarahlee87, so glad you had the thyroidectomy and they caught the cancer. That was a factor in my decision too as Graves patients have a slightly increased risk of thyroid cancer, which is so treatable if caught early as it is slow growing. Sounds like you are recovering well.

[Liz1967]

in reply to: Suggestions for books about Graves Disease #1184226

You will always have Graves but your hyperthyroidism is cured and your antibody level goes down after thyroidectomy. Antithyroid antibodies attack the thyroid and eye muscles, the eye muscles only because they mistake them for thyroid tissue for some reason. Therefore, without a thyroid and if you have no eye disease or it is burned out, the antibodies have no more effect on you than the antibodies you have against diphtheria or polio or measles. They have nothing to attack and thus no way to hurt you.
When I first got Graves, I read a lot of the popular books on Graves and found them to be misleading and biased, in particular the popular books written by a laboratory technician whose name I won’t mention. Your best sources are medical journals. You can easily access these on Pubmed on the internet. These are of course technical, but the conclusions of the studies are easy to understand and the search feature is user friendly. You can also Google search terms and pay attention only to those results reflecting medical science, like ones by a university, medical center or the NIH. I found good info from the Universities of Michigan, Wisconsin, Mayo Clinic. There is truly a lot of misinformation out there.

[Author]

Posts