[chrisk]

#1058897

Hi,
Thanks to the people behind this site. I have found lots of info here and feel grateful to have a source whereby i can share my experience and learn from others’. I was diagnosed a month ago with graves. For up to a year(??), i had the now obvious symptoms: hand tremor, rapid heartbeat (125/minute), heat intolerance, insomnia, etc. My lab results were:

T3 9.32 (normal range 0.9 – 3.0)
T4 220 (normal range 60 – 165)
TSH 0.01
Antibodies were through the roof as well.

Endo initially put me on methimazole but an allergic reaction made us switch to carbimazole at 30mg a day plus inderal for graves symptoms. I am having an echograph of thyroid today. In term of TED, the only thing i have noticed last few months is a mild sensitivity to light (not always) and the formation of big bags/pouches under both my eyes. I am seeing an eye doctor today although endo says she does not see serious signs of TED. I have a few questions if anyone out there can answer:
A. As i live in greece, are the lab results posted “free” T3 and T4 levels or not (based on normal levels)? Can’t seem to find microbiologist in greece who sees the difference.
B. How often should i get blood test done? Doc says every two months.
C. Are my sudden bags under eyes related to graves? If so, what can i do about them?

Thanks in advance for any advice. Still kind of confused with everything.
Chris

[chrisk]

#1170756

Just got my ultrasound results: “thyroid inferno” was the takeaway. I also got back from eye doctor who says the pressure in my eyes is high but within normal levels. Otherwise, no pronounced features of TED, told me to wait and see and meanwhile get a CT scan for orbit area. Do all these things make sense? Couldn’t get a straight answer from him regarding big pouches under my eyes though.

[Kimberly]

#1170757

Hello and welcome! We are just fellow patients here, not doctors, but here are a few comments:

A. I would suggest checking directly with your doctor or your lab. From most of the experience I’ve had with labs here in the U.S., unless a test is specifically designated as “Free”, you are likely looking at Total T3 or T4. The preferred test in the U.S. is Free T4 over Total T4, although there is some controversy over whether Free T3 is superior to Total T3.

B. The recommendations in the U.S. are to re-test 4 weeks after starting Anti-Thyroid Drugs and then 4-8 weeks after that. However, some patients respond very quickly to these meds, so certainly if you feel symptoms of hypO coming on prior to your next appointment, it’s a good idea to get a set of labs done more quickly. Every patient is different, but common symptoms of hypo can include fatigue, joint pain, unexplained weight gain, constipation, dry skin, cold intolerance, and slow pulse.

C. Eye swelling can be associated with Thyroid Eye Disease, but an ophthalmologist would need to help you with a specific diagnosis, as there could be other causes as well. Some patients with TED find that consuming excessive levels of sodium can make the swelling worse. CT scanning can be used to determine whether the muscles behind the eyes have become enlarged due to TED.

Hope this helps!

[chrisk]

#1170758

Kimberly, thanks for the help!!
All the best,
Chris

[snelsen]

#1170759

Hi Chris,
your eye doc is doing the right stuff. Kimberly’s answer about the CT scan helps confirm/not confirm the diagnosis of TED. When the muscles are affected, they get bigger, and you can see that very clearly on an orbital CT.
If they are bigger, or big enough, then eyes bulge a little bit or a lot. Our eye sockets, or orbits, are very cleverly designed to hold some cranial nerves, our eye, and the eye muscles. If anything provides more bulk, the eyes have only one way to go, and that is OUT.

I did not know the information that Kimberly said, about waiting a month for labs after beginning ATD’s/ The endos in my area are very interested in all symptoms and changes, and like to do the labs closer to two weeks apart, especially in the beginning. They say that there is less chance of dipping down into hypo that way, which presents its’ own symptoms, none of them very nice to have.
Shirley
So glad you found this site, I am a fellow patient, and have found it immensely reassuring, informative and responsible, with no drama.

[Bobbi]

#1170760

There is also an ultrasound test that can show the condition of the eye muscles, without incurring additional radiation exposure. Whether it is as good as a CT scan or MRI, I don’t know.

[snelsen]

#1170761

Interesting! Thanks, Bobbi. I did not know about the ultrasound for eyes. Wonder if it provides the same information of orbital fat and fibrosed muscles? That was never offered to me. I just had another orbital CT (without dye) yesterday.
I will ask one of my many eye docs about that when I see her this week.

[Bobbi]

#1170762

Well, my eye disease was never as bad as yours has been, Shirley. Bad enough, but not OD level bad. Anyway, they did the ultrasound on my eyes. It did show the muscles, which had detectable…what?…swelling, I guess would be the word. I don’t know about the orbital fat issues.

[Author]

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