[Jolilly]

#1060087

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Pardon my awkwardness, this is all so new to me. I have been dealing with strange symptoms over the last year or so. Started with just feeling “off” then swelling in my hands over night. Liver function test were off the chart one month and normal the next. Blood pressure and heart rate thyroid function, kind of all systems, crazy too. Had biopsy of the Liver, all normal. December 2012 I have a bone scan and I have osteoporosis!

Continued to feel worse and in January the eye issues escalated. I thought I had an infection from my contacts and my GP put me on an antibiotic. Tearing tearing, tearing and one morning double vision that has stayed. (It took long weeks to see one Ophthalmologist who told me he could not help me, weeks to see a second, and months to see the third.)
February back to the GP with my eyes and feeling so bad. She tested my thyroid again, did a scan of my thyroid again, and did a MRI if my brain, everything became more clear and I was diagnosed with graves and grave ophthalmopathy and put on a beta-blocked.

So March I started with my Endocrinologist, who gave me the Radioactive Iodine Treatment followed with Methylprednisolone. Now that I know more, I know it was not the best treatment for me, with the eye involvement, but that is past. Saw her last week and we started on the Synthroid and started treating the bone loss, see her again in a month.

By the time I saw my third Ophthalmologist (June 2013) he told me on a scale of 0-10, 10 being total blindness, I was at 7!! I am currently on a course of Prednisone starting at 60 MG and descending to 10 MG. It did make a huge difference in the swelling behind and around my eyes, improved the kaleidoscope vision back to double vision, and the band of normal vision in my lower sight is expanded. I see him again in a week.

My husband can’t understand what the Prednisone is doing to me. Third week I went from wearing size two pants to size four and fifth week up to size 8, face and neck and belly all are swelling, with the swollen eyes, I look like Quasimodo! He keeps telling me how big I am and how bad I look, like I have any control……… I think that is the issue, I am always in control of things and now I am not….

This is where I am now. I feel like my poor body is on a roller-coaster with out a seatbelt. I am encouraged to read others post that have made it through this.

Sorry for the long post, guess I needed to kind of vent.

[Kimberly]

#1180220

Hello and welcome. Prednisone can literally be a sight-saving drug, but it does have some significant side effects. I’m so sorry your husband is less than sympathetic – hopefully, others here will chime in with their experiences. Perhaps you can have him read this and help him better understand what you are dealing with.

The eye involvement with Graves’ typically goes through different phases. The period where symptoms are getting worse is referred to the “hot” or “active” phase. This is where steroid therapy is generally used for more serious cases. Once the “hot” phase is over, there is usually some improvement in symptoms…and then things eventually level out and stop changing. (This is referred to as the “cold” phase). If you reach the “cold” phase and still are having issues, there are surgical procedures that can be done to restore eye appearance and function.

Steroid therapy is intended to be a short-term solution during the “active” phase. Dr. Raymond Douglas of UM Kellogg Eye Center noted that it’s important to have a goal – and an end point – in mind before starting a course of steroids for TED. So although the side effects can be distressing, this is not something that you should be having to deal with long-term.

Wishing you all the best.

[snelsen]

#1180221

Hi Jolly, brief note, cause I am literally running out the door to a class. This site is reliable, and we all vent here!!! Graves’ TED (thyroid eye disease) are terribly disrupting events in our lives, and they are serious.

I hate prednisone, too, took it for the same reason, to save my vision. You may have already been told that you have optic neuropathy, which is plain speak, is pressure on the optic nerve.

As Kimberly said, prednisone is a short term fix. But a very valuable one.
I imagine your eye doc will refer you to an oculofacial surgeon, for an OD, orbital decompression. Much more to say about that, but purpose is to take pressure off your optic nerve, to save your vision, it is a surgical procedure.

Tell your husband that prednisone DOES this to any person. And you are most likely on a high dose. I think I was on 6omgm/day with a long, long taper, cause you cannot abruptly stop that drug, it needs to be decreased a little at a tlme, over several weeks.
Maybe it would help for your husband to go to a drug store, ask the pharmacist to explain predisone, and say why you are taking it. All the bloating, IRRITABILITY BIG TIME, EXCESSIVE APPETITE, SLEEPLESSNESS, ARE par for the course.

Gotta go. Or , have him read this post.
more later,
Welcome, this will all simmer down, and life will be normal again, maybe with light sensitivity, and wearing sun glasses. But you will see as long as you receive the appropriate care as I described. Sounds like that is what is happening. Most people have mild TED. I did not, as you can see by my list of stuff I had done.

Shirley

[Jolilly]

#1180222

Kimberly,

thank you for your response and support. I think my husband is simple scared and overwhelmed by what is happening, in the 33 years we have been married this was not the first time he has inserted his foot into his mouth!
I made him sit down at the computer and read Again, about both Prednisone and TED. All is good again.

My Ophthalmologist is the one who told me about this support group and I am grateful to him for that, I am learning so much reading what others have been through, and so much I did not have a clue about! Sometimes it little things, like the occasional hand trembles, did not know that was the Graves!! The poos, did not know that was the Graves!! Its like a candy store of knowledge!

thank you,

Jolilly

[Jolilly]

#1180223

Shirley,

Thank you for your reply. Some of the the things you have had done I have not heard of yet, sounds like you really have been through it all! I is encouraging to me to hear from someone who really knows what this is like.

My eye doctor specializes in Ophthalmic Plastic & Reconstructive Surgery, according to my endo Dr. he is the best in my area. He started me on the 60 MG dose with the long taper, like you.
Again, I think my husband is just scared, seeing the physical changes, it is hard to pretend nothing is wrong. Generally, he is a pretty good guy!

thank you for the encouragement,

Jolilly

[snelsen]

#1180224

Hi Jolilly,
OF COURSE he is scared! Just like we are.
Sounds like you are having good care, with the right doc.

I think it helps to look back to when we did not know a doggone thing about Graves’ or TED. We found out, ’cause we “got” it. And before that time, almost all of us knew absolutely nada, nothing about any of this. We are learning now because it is US it is happening to…….. it helps me to have this perspective.

Now, I am not running out of the house to my beginning traveler’s French class, I am going to bed!!!!!
Shirley in SEattle

[Stymie]

#1180225

Hi jolilly and welcome!

I’m so sorry you’ve been going through this graves rollercoaster. Good news is you’ve found this site with a wealth of info and helpful people.

Most people don’t understand what youre going through but we do. Come here and vent all you want.

Diane

[Gabe]

#1180226

Hi Jolilly. welcome to the best place to vent, find friends with similar situations, and gain a wealth of knowledge. Everyone of us has GD in common and everyone of us has a slightly different story or path. I’m just starting on the TED journey and its much scarier than the GD by itself. I’m happy for you that you finally found some good docs. That’s so very important. Keep us posted.

Best wishes,

Karen

[Jolilly]

#1180227

Thanks Karen,

I am sorry you are on the TED path too, sounds like you have already been through plenty! I see my Dr. again on Monday and will see what happens from here. Thanks to all of y’all (yep, Texas) I have plenty to ask him about!

Jolilly

[Mommyof4]

#1180228

Hi Jolilly,

I am new to this site and Graves as well. I am trying to gather as much information as I can about what is happening to me now, and what will happen in the future. It is all very confusing, frustrating, and depressing. But I think this forum is going to be wonderful, supportive and most of all understanding!!!

[Author]

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