[Caffer1962]

#1059574

Hi all,

I’ve had Graves since 2005. Was treated with radioactive iodine and have been fine until last year when I developed eye problems. I’ve been seeing an eye disease specialist since it began. He believed that I got through the active phase and entered the cold phase with a mild enough condition that all we opted for was eyelid surgery to drop my left eyelid a bit. That surgery took place in June 2012.

I saw him again yesterday (Dec 12th), and my left eye is worse. It’s bulging out an additional 3mm. He wants to schedule me for a CT scan and vision field test. He spoke to me about starting me on 12 weeks of IV steriods, depending on my test results. This scares the crap out of me. Can anyone out there tell me the gory, gritty details of what I will go through, whether I will be able to work, whether my fiance will be able to live with me….

OR if there are other options that I should consider. He mentioned radiation, but for some reason, didn’t seem to consider that option for me. Not sure why.

Thanks in advance for any advice.

[Kimberly]

#1175872

Hello and welcome! Hopefully, you will get some responses from others who have used these treatment options, but you might also use the “Search Posts” in the top right-hand corner of the screen and look for keywords like “steroids”, “prednisone”, “radiotherapy”, etc..

As far as I know, you should be able to continue your day-to-day routine while on these meds, but there are certainly potential side effects that you will want to discuss with your doctor.

I’ve heard mixed reviews of radiotherapy from other patients. Here’s some info from the International Thyroid Eye Disease Society:

http://thyroideyedisease.org/radiotherapy/

Hope this helps!

[snelsen]

#1175873

After you have your CT scan and visual fields tests, you will know a lot more.
If the pressure is on your optic nerve, you will NEED IV steroids (as I did) to decrease swelling, fast, to save your vision. After your vision is safe, I would not be surprised if your were referred to a surgeon to have an orbital decompression..even if you are in the active phase. Like I did!
Get those tests asap.
Shirley

[hollygsmith]

#1175874

I attempted to do 6 weeks of IV steroid therapy in order to get off of oral steroids (there are supposed to be less systemic side effects with the IV steroid therapy). Every time I would try to decrease my oral steroid dosage my eyes would get worse. I made it through 3 weeks of IV steroid therapy and couldn’t do anymore because I could not deal with the side effects. I couldn’t sleep and my anxiety levels were through the roof. It was very difficult at work because I was so irritable and would get so easily annoyed. It was a bit like when I was very hyperthyroid and initially diagnosed with Graves except way worse. When I couldn’t tolerate the IV steroids, I tried a steroid injection directly into the fat below my eye. That was an awful experience and I didn’t get any improvement. So, I ended up being on oral steroids for close to a year before being able to taper off completely. I still had side effects, but they weren’t as severe as with the IV steroids.

That being said, you may have a very different reaction to the IV steroids and of course have to weigh benefits vs. risks for your individual case. Even after all of the steroids I still had to have OD and upper eyelid retraction repair. But it likely would have been much worse without the steroids.

I’m so sorry you are going through this.

[Caffer1962]

#1175875

Thanks for responding. I had the CT scan yesterday and the vision field test today. The good news is that my visual field tested within normal limits but my optometrist wanted to check my eye pressure since my last checkup, and it’s gone up a small amount. She said that if I go on the IV steroids, it’s very important to keep track of it. Does anyone know why?

[hollygsmith]

#1175876

Steroids can cause an increase in eye pressure. TED can cause an increase in eye pressure as well. High eye pressure can lead to vision loss if it goes untreated. The good news is that there are drops that can be used to regulate eye pressure. I had to use Timolol drops twice a day in my eyes while on steroids to keep my pressures within normal range.

[Caffer1962]

#1175877

Thanks everyone, it’s been awhile since I’ve logged onto this site. Although my CT scan showed a marked increase in swelling, my vision is safe, there is no pressure on the optic nerve. My eye doc wants to continue monitoring me until he’s sure that I’m not in an active phase anymore and then we discuss surgery to make some space in the oribital lobe, etc. My term: make my eye look less wonky. For those of you who have had the surgery, what opinions do you have? Also, you get totally knocked out when they do this, correct? How long for recovery?

[Kimberly]

#1175878

Hello – You might consider starting a new thread with the topic “Orbital Decompression and Anesthesia”, as your question might get more views.

OD is done under a general anesthetic, but hopefully, others will chime in with their experiences on recovery time. There are different types of decompression (bone vs. fat) and different ways to access the orbit, so this probably has an impact as well. Your surgeon will be able to provide more specifics on your particular case.

Take care!

[Caffer1962]

#1175879

Hi all,
I’m at the point where my doctor has prescribed high doses of steroids to alleviate the progression on my disease. When my medical doctor looked at the script, he said “this is a whopping amount of steroids” and that scared me. It was 500 ml of mg for 6 weeks and then 250 for 6 weeks. As long as my blood work comes back fine, I plan to go ahead with it. Does anyone else have experience with these high dosages and what are the side effects? Thanks to all. This disease is tough to deal with. So little information.

[snelsen]

#1175880

Hi. Are you referring to oral prednisone? Or IV? your post stated ” It was 500 ml of mg for 6 weeks and then 250 for 6 weeks.”
I am wondering if you were typing too fast. 500 ml is a lot of FLUID, a glass of water is 240 cc (ml) I am wondering if you mean 500 mom of prednsone once a day for six weeks. If you do, I agree, that is a WHOOPING BIG DOSE.

So first, let’s clarify what you are taking.

I had what is considered a high dose of steroids (prednisone) 60 mom for 2 weeks, with a VERY long taper, over the next two months, down to 2.5 mom before discontinuing.

Prednisone made me very hungry, and very fussy and irritable. It goes away when you stop the drug.

Do write with more info.

[Caffer1962]

#1175881

It’s IV steriods–once a week for 12 weeks. Yes, I was probably typing too fast and my vision isn’t what it used to be .

[snelsen]

#1175882

Ok. I got it! And… I also had IV steroids. I had the oral ones to give me a little momentary relief from my terrible, awful, life changing double vision.
It helped when I was on them, and returned worse than ever when they were discontinued.

I had IV steroids, but only once a week for three weeks. I think 1 Gm each week, but been a while, not sure of that.

My vision is not good. 13 surgeries better. but I can see to read, drive sensibly I am very photophobic, wear sun glasses all time and have to have a visor with me cause of glare. Eyes dry, get super tired. But can see
!
s

[Caffer1962]

#1175883

In order to prep me for the start of a 12-week course of IV steroids (starting tomorrow, the 16th), I had to have some pre-surgical testing done, including a TB test. I stopped by my doctor’s on the way to work to have my arm checked, thinking it would be quick and I’d be on my way–no such luck. I reacted to the TB test. An absolute positive would be 10mm, my reaction was 7mm. Next thing you know I was given a face mask and sent for an HIV blood test and chest x-ray. The x-ray was clean and my doc gave me the go ahead to begin the IV treatments. I asked if, since Graves’ is an auto-immune disorder, if that could create a false positive on the TB test and he said it was a good question, but couldn’t answer it. Does anyone know if that’s possible?

[snelsen]

#1175884

Nope. I don’t think so. I can understand why you asked, cause of Graves’/TED, that is on your mind.
TB caused by bacteria in droplets, kinda hard to get, really, but possible from being exposed to someone with active TB.

I have had zillions of TB skin tests. Not sure if this is your first one, or not.
The reading is rather subjective, and the first thing to do is repeat the test, and/or proceed to a chest xray as you doc ordered.

In recent years, people who are positive for HIV have had a TB that is much more resistant to treatment.

You probably won’t get an answer, cause most likely the logic is not there for anyone to think about it!

Good luck with your steroid infusions. YOur eyes will be better, but you most likely will know that you are getting steroids. I think I mentioned before.
Hungry, little bit of a round face, more trouble sleeping and more fussy.
But your eyes will be protected, that is good. When steroids are stopped, all symptoms go away, and usually the improvement in your eyes does not remain.
Whee.
Shirley

[mari]

#1175885

i had 15 radiation treatments and i got a lot of relief from it… but my case was so severe a month or so later i had to have orbital decompression… my eyes look great they are not bulging as bad anymore… but do have to go for another surgery to correct the double vision
mari

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