BYC Café

[ShrekDawg]

Or maybe I should do it the healthy way and put real strawberries in almond milk and blend it

Either way sounds really good lol

 

[pennyJo1960]

Morning Cafe yup Graves positive since 1999 went ophthalmic in 2001 it was nightmare 70 lbs, we nuked my thyroid then 500mg prednisalone iv once week for 8 weeks 60 mg of the same daily, radiation to eye sockets and decompression on both .. I am a healthy 130 my body does not caffeine but I will 2 cups of it each morning take a fiber so I am able to eat anything and my BF does not leave things in my way

 

[sourland]

I am usually up between 5 and 6 each morning though and only sleep later if I am sick, which is not very often for me

Don't be jinxing yourself. Who, me superstitious ?

 

[FortCluck]

Morning Cafe yup Graves positive since 1999 went ophthalmic in 2001 it was nightmare 70 lbs, we nuked my thyroid then 500mg prednisalone iv once week for 8 weeks 60 mg of the same daily, radiation to eye sockets and decompression on both .. I am a healthy 130 my body does not caffeine but I will 2 cups of it each morning take a fiber so I am able to eat anything and my BF does not leave things in my way

I had my thyroid removed 9 years ago and shortly after that I got the eye portion of the disease I did orbital decompression 5 years ago and it worked for about 6 months... Then my eyes got worse again I have to be careful what treatments I do and surgeries because of other issues that I have. They were going to do another orbital decompression on me last month but they canceled 2 days beforehand!

I'm kind of glad that they canceled it because I honestly didn't want to go through it again! The first time was enough for me.

Now I am taking rituxan infusions every 3-6 months. I also have to give myself a shot of methotrexate every week.

There is actually a medication that is coming out for thyroid eye disease. I think it should be out by next year, It's for active thyroid eye disease. I'm kind of excited for it to hit the market because nothing else truly helps in my situation.

I can no longer wear contacts and have to wear glasses, which I hate. I also hate the fact that when I have a flare up people like to point it out and it usually makes me walk away and start crying!

 

[FortCluck]

I am actually allergic to prednisone, when they were preparing me for the surgery they made me stop my infusions due to the risk of infection so I wasn't allowed to have it for 8 months. They decided that prednisone would be great for me to use until after surgery...

I'm actually allergic to it. I have very severe reactions to it and it pretty much turns me into the incredible hulk. as soon as my doctor realized how bad I was getting, he took me off and then he put it on my do not take list.

 

[pennyJo1960]

May have saved you the osteoarthritis it has given me so trust me went through hell so long I am marginally healthy now take heart and thyroid meds my vision is legally blind nothing in the right little in the left

 

[FortCluck]

May have saved you the osteoarthritis it has given me so trust me went through hell so long I am marginally healthy now take heart and thyroid meds my vision is legally blind nothing in the right little in the left

I actually got graves disease from a continuous IV medication my doctor put me on for pulmonary hypertension when I was 22. It's so crazy to me that a medication that is supposed to help you can cause so many issues in the long run.

I'm so sorry that you've had to deal with all this

 

[pennyJo1960]

Graves is genetic your Dr. is a idiot if he said it gave you graves

 

[FortCluck]

Graves is genetic your Dr. is a idiot if he said it gave you graves

Actually he is not an idiot The medication is what gave it to me... The medication is called Flolan and in studies one person got Graves disease from it. It is very rare and the disease that I have that is called pulmonary hypertension is also rare...

Trust me I never had graves before I took this medication, I was checked up and down for everything in the book when I was hospitalized for a month with pulmonary hypertension.

 

[pennyJo1960]