# Hi, I'm new, diagnosed with Graves



## Prairie Rose (Nov 17, 2011)

and I have been reading several threads on this forum.

Thank you for the information via facts and living with this thing.

I was diagnosed with Grave's yesterday.

Yay, me.

Being sent to the big city next week to see a neuro-opthamologist. My eyes were pretty aweful for several weeks.
The local optho put me on Prednisone. It is helping a LOT, thank God. My only issue with the steroid thus far is weight gain of 3 lbs in 5 days. That is so not a good side effect!
The double vision is lessening as is the constant tearing, so it is what it is.

I had the RAI uptake test done last week. That made my eyes worse for a couple of days. My throat turned very red and swollen also. Much better now though.

The whole mess began this past spring. My eyes watering, itching, burning, swelling. I went to a medical doctor at the walk-in clinic on my lunch break this summer. He gave me allergy eye drops. No relief.
I went to my regular eye doctor this fall. She said allergies and gave me a steroid eye drop. No relief.
I went back to my eye doc after a couple of weeks and she said there was nothing she could do. Except prescribe me new, stronger glasses.

Finally a few weeks ago I got in to my regular medical doctor. He took one look at me and KNEW. He sent me for a thyroid ultrasound, and from there, to an endocrinologist.

That led to the RAI uptake, as well as being sent to an opthamologist.
Which leads to going to the big city next week to a neuro optho.

I am still on the prednisone, and today began the methimazole (10 mg once daily), and the propranolol (20 mg three times daily). 
One tablet of each down and I am light headed. 
I might mention that ansethesia makes me sicker than a dog, and Nyquil and Benadryl knock me out cold. I have a low tolerance for drugs, apparently! Also hate taking anything.

I am concerned about the prednisone and the methimazole weaking my cell counts. I work at a pharmacy......but I am more concerned about how bad my eyes and the double vision had become......

My blood pressure has always been pretty low...my normal is 115 to 120 over the low 60s. The drugs I am now taking can lower that....

It is what it is, right?

My lifestyle is a busy one, and I like it that way. Most of the time. 
I have a wonderful husband, a 21 year old daughter, and two teenage boys ages almost 16 and almost 18.
I have 3 horses that I love to get out and see the world on, but also enjoy just watching them as well. 
I work full time plus in retail management.
My life is busy. My life is good.

Thank you and cookies to those that read this.

I appreciate the posts you make that help me learn and the experiences you share.


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## webster2 (May 19, 2011)

Welcome, and i am very sorry for what brings you here. So sorry to hear all those docs missed your eye symptoms. Your attitude is inspiring. I hope you will get some good news at your appointment.


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## Prairie Rose (Nov 17, 2011)

Thank you very much, Webster.

It is nice to meet you, although we could sure do without the health issues, couldn't we? :hugs:

You have certainly been through far too much, via your signature.
From this I see that you are a strong person, and that lends strength to others.

Positive feels better than negative, so I try!


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## Andros (Aug 26, 2009)

Prairie Rose said:


> and I have been reading several threads on this forum.
> 
> Thank you for the information via facts and living with this thing.
> 
> ...


I sure am sorry to hear about the Graves' and I am glad you are seeing an ophthalmologist who knows what to do for you to stave off further infiltration.

it would be best to avoid OTC altogether. Some things can be life-threatening to Grave's patients. Anything adrenergic. Cough medicines, novacaine, nose spray, antihistamines....................the list is long so do be careful. If you read the label on Nyquil and other things, you will see contraindications to person's w/thryoid disease specifically hyperthyroid.

Glad you are here and I love hearing about the horses!


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## Prairie Rose (Nov 17, 2011)

Nice to meet you, Andros.

Thank you for that info, very, very much.
Gosh, I didn't know that novacaine was an issue for us. I have a dental appointment coming up, so I will let my dentist know.

Thank, on the horses. One of these days I will figure out how to post pictures on here...if I don't bore you too much.


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## dlo1725 (Oct 30, 2011)

Hi PR:

I was recently diagnosed with TED. My eyelids are swollen, I have slight bulging in my left eye and some double vision. I went to eye doctor in December and was advised on a scale of 1 to 10 I was at 1. At the beginning of February I went back to the eye doctor and he stated my eyes were getting worse and prescribed steroid eye drops. Drops have helped a little bit but I have heavy swelling on lids.

He also discussed taking prednisone and the discussion made me wince. Like you, I am sensitive to any type of medication and hate taking anything.

Were are you now with the prednisone? How are you feeling and has there been significant improvement in our eyes? I am very nervous about taking prednisone but hate the fact that my eyes are swollen and teary.


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## Prairie Rose (Nov 17, 2011)

Hi there!

I saw your other thread before I saw this , so I put a post there.

I have been off the prednisone since the beginning of December and honestly, even though it made my eyes better for a while, it is the one drug I wish I had NEVER EVER taken. 
I can NOT wear most of my clothes any more. It sucks!

I eat a healthy, low fat diet (did before this mess too), and am on my feet running at work often from 7 am to 8 pm or later. 
That prednisone worked fast on me--hit me like a ton of bricks--but gosh, if I could go back I would not have taken it.

Plus, being on the methimazole to slow my thyroid down is making it doubly difficult.

What kind of eye doctor are you seeing? My regular eye doc had me on the steroid eye drops for a while too when she thought it was allergies. They did not help me at all.

If you aren't seeing an opthamologist, please, please find one and get in there, ok? It is really important that they check your eye pressures and make sure your optic nerve is not being damaged.

Also, have you seen an endocrinologist for the Grave's of the thyroid?
Important as well.

To sum it up in a short version, the Graves Thyroid issue and the Grave's Eye issue are two seperate issues that are both caused from a different one.

That being an autoimmune disease in which your own immune system has decided to attack a protein that is present only in our thyroid glands and in our eyes.

They don't know for sure what causes our immune system to do this. 
There are a few theories, but nothing set in stone.

I look forward to hearing more from you.



dlo1725 said:


> Hi PR:
> 
> I was recently diagnosed with TED. My eyelids are swollen, I have slight bulging in my left eye and some double vision. I went to eye doctor in December and was advised on a scale of 1 to 10 I was at 1. At the beginning of February I went back to the eye doctor and he stated my eyes were getting worse and prescribed steroid eye drops. Drops have helped a little bit but I have heavy swelling on lids.
> 
> ...


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## dlo1725 (Oct 30, 2011)

Hi Prairie Rose:

Saw both of your posts and I appreciate your feedback greatly.

I am seeing an opthamologist for my eyes and he started me on steroid eye drops a little over a month ago. The drops help a little bit but do nothing for the swelling surrounding the eyes. I am also seeing an endo and have been on methimazole for about 6 months.

I have mentioned prednisone to several of my coworkers as one of my options for my eye issues. Like you, some of them have taken the drug and wished they had never started. I am sorry to hear that you had a tough time with this drug but thank you for making up my mind for me. Although I want my eyes to return to normal quickly, I don't want to have regrets for taking the prednisone.

Thanks for letting me know that the eye disease would have probably kicked in anyway. I was thinking that if I had never started treating the hyperthyroidism, then the TED would not have happened.

This venue is great as I know that I am not alone in this battle. Thanks again for reaching out.


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## Andros (Aug 26, 2009)

dlo1725 said:


> Hi Prairie Rose:
> 
> Saw both of your posts and I appreciate your feedback greatly.
> 
> ...


This was my protocul and I had a very advanced case of exophthalmos. Globes were completely out of the orbits, corneas bulging and the optic nerves were being stretched beyond capacity causing blindness.

Prednisone (oral) concurrent with 2000 RADS (radiation) to each eye 3 times a week for 6 weeks. Saved my eyes. Then I had to wait 18 months for orbital decompressions. The long wait was required to make sure the globes were going to go back in as far as they were to go so that when I had the surgery, there was not overkill. Many have had their globes sink so far into the orbits that they required reconstructive surgery w/placement of fat (auto-donor) to build up the orbital floor.

I was "lucky" to have such a fine and knowledgeable ophthalmologist/surgeon.

Let me know if I can help you in any way.


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## Octavia (Aug 1, 2011)

Andros said:


> This was my protocul and I have a very advanced case of exophthalmos. Globes were completely out of the orbits, corneas bulging and the optic nerves were being stretched beyond capacity causing blindness.
> 
> Prednisone (oral) concurrent with 2000 RADS (radiation) to each eye 3 times a week for 6 weeks. Saved my eyes. Then I had to wait 18 months for orbital decompressions. The long wait was required to make sure the globes were going to go back in as far as they were to go so that when I had the surgery, there was not overkill. Many have had their globes sink so far into the orbits that they required reconstructive surgery w/placement of fat (auto-donor) to build up the orbital floor.
> 
> ...


Wow, Andros...that must have been very scary to go through. It certainly sounds like you were in great care, though.


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## Andros (Aug 26, 2009)

Octavia said:


> Wow, Andros...that must have been very scary to go through. It certainly sounds like you were in great care, though.


ROLF!! I was subsequently treated for post traumatic stress. Yes; words cannot describe. Not to mention that I was treated differently by others because of my appearance.

I went through a lot of emotional/psychological changes because of this. All to the good though thanks to a very very good counselor and a very very wonderful husband who is rock solid.


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