Graves' Disease Support Group

Graves-Basedow disease is a medical disorder that may manifest several different conditions including hyperthyroidism (over activity of thyroid hormone production), infiltrative exophthalmos (protruberance of one or both eyes and associated problems) and infiltrative dermopathy (a skin condition usually of the lower extremities). This disorder is the most common cause of...

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eccentric 04/01/2017

My tsi numbers are really high, I have problems with my left eye only. Dr wanted to keep me on a 2mg of medrol (steroids) I was on it for 7 months back in 2015-16 and after being on for so long i started getting really bad side effect, foggy thinking, hair coming out, very moody, lot of weight gain. I'm waiting for my test results on Monday the last time it was over 600, that was last Oct. My thyroid was doing ok at that time. It's only been the last month that it's getting big again, and of course i'm stressing about it as well. I didn't want to go back on medrol so he agreed to let me stay off, but was suppose to lose 10 kilo, well instead i put 2 more on. I'm hoping there is something else to help bring it down. I understand selenium is suppose to help? Has it worked for anybody else? Any suggestions on food?

Aronia 04/01/2017

I feel that Acetyl-l-carnitine helps me with my eyes.
I m curious why someone kept you on steroids for 7 months ?? It is so bad for adrenal system and now that you need it for this eye problem, you can't have it..
I m so sorry this is happening...
How are your thyroid numbers right now other than TSI?

eccentric 04/01/2017

He had me on the Medrol for 4 months at 4mg, then put me down too 2mg for the last 3, it did bring my eye down, but the numbers were still in the 200, and he wanted me to keep going on the Medrol at 2mg, i just had enough said no. It was doing fine on it's own, it was hard to tell the difference. But now it's like it was when he started me on Medrol. I'll find out my numbers on Monday, i just had the blood work done after 6 months of being off of everything. I'm frustrated with this whole thing. I never heard about the acetyl-l-carnitine. Is that something i can just pick up myself, or is this a DR thing?

mmztcass 04/01/2017

Hi:

When you do find out the other thyroid numbers - hopefully the Free T3 and the Free T4, see where you are at with the FT3 and if not too high, the Selenium can be safely taken. Selenium raises the FT3 so not everyone with thyroid issues can take it.

Many of us do our best with the FT3 at mid range and the FT4 at mid to the upper third range.

The TSI can be pretty tricky. by being able keep the Free Ts in the 'right' places with the ranges that we feel our best there at, can help the TSI drop down. The TSI will go up whether one is hypERthyroid or hypOthyroid.

{{{hugs}}}

eccentric 04/02/2017

I get my results for everything tomorrow night. I can let you know then. I also understand stress can cause issues as well. Has that happened with anybody else? I'm living in Greece right now, but moving to Florida in fall. I worry if i will even be able to afford health insurance, so i'm stressing out about this as well. I'm sure it doesn't help.

KarenMW 04/02/2017

Praying for you. Try not to stress. Tell yourself that it doesn't solve anything. I'm trying to get to Florida myself! It's beautiful, peaceful and a wonderful place. You'll enjoy it.

Look for GoodRx online. Methamazole is close to nothing for the prescription and the card is free. I'm not sure how often you see your endocrinologist. I only see mine once a year and call in for lab results. I have blood drawn about every 3 months.

KarenMW 04/02/2017

By the way, stress doesn't help any issues with the body. Mind body and soul must be in harmony. It's hard to do with our disease if you are at the early phases. It's double the reason to relax.

eccentric 04/03/2017

Well test results are back
TSH is 0.01 with range 0.27-4.7
Free T4 is 1.66 range 0.7-2
TSI went up some more to 7.44

Didn't take any FT3, but a lot of other tests i don't understand, i'll see the Dr on Wed and i'm sure he will tell me to go back on the steroids (Medrol) this really sucks, anybody have any food suggestions that might help..:)

mmztcass 04/03/2017

Hi:

I would ask for the Ft3 to be ordered at the appointment.

{{{hugs}}}

eccentric 04/06/2017

Seen the Dr on Wed, i'm heading for a relapse. I wasn't on anything for 6 months. Now i'm back to 1/2 a pill for graves and he wanted me to be on 4mg of Medrol but i'm only taking 2mg for my eye. It sucks, there has to be something else to do besides this. I'm waiting on my books to come on natural treatments. We will see. :)

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