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SBW8
11-27-2011, 08:00 PM
Hello all,

I was diagnosed with Lupus about 4 months ago and have been on plaquenil since late August - it has helped my discoid rash on my face so far, but that is really the only very noticeable difference since starting the medication. I also started to see an endocrinologist when my primary care physician ordered labs that included thyroid tests which showed that my free T3 and T4 levels to be on the very low range of normal. I have a normal TSH level, normal T4 levels and extremely low free T3 levels. Has anyone else ever experienced this? I am 25 and never had thyroid issues before - my thyroid is not enlarged so they believe that I am having a central thyroid issue within my hypothalamus or pituitary gland.

The endocrinologist put me on a compounded slow release T3 formula which has helped, but I fear that my T3 levels will not be the only thyroid problems I have. Since testing in July both T3 and T4 levels have gone down considerably, but my T4 levels are still within normal range. The reason the doc believes it is a central problem and not hashimoto's is because my TSH level is very low - generally speaking with hashimoto's there is a very high TSH level.

Thanks so much :)

Love,

Sarah

steve.b
11-27-2011, 08:14 PM
sarah, please read a few of the older posts on thyroid.
there is quite a few others here who have issues also.

SBW8
11-27-2011, 08:19 PM
Hi Steve,

I have gone through and read most of them which is why I chose to post this thread. I haven't found anyone who had specifically only low T3 levels. Apparently it is very uncommon in the thyroid/endocrinology and metabolism specialty but I figured maybe some other lupus people have encountered this. I have the opposite of the problems most described in the posts which mention thyroid - even down to the cold intolerance that most people face.

Nonna
11-28-2011, 01:25 AM
You're doing the right thing by seeing an endo. I have hashimoto's so I can't really help. But to say, that it does take time for them to get the levels to stabilize. I have been on different dosages for over five years. They think I'm finally stable but it did take time. If you feel comfortable with your endo, ask about a consult with another endo. Two heads are always better than one.
Hugd

jmail
12-08-2011, 06:24 PM
I'm been sick the last few weeks, so I missed your post, SBW8. I'm not sure if this is the link to the site I'm thinking of, but I think it is ("Where oh where are you tonight? why did you leave me here all alone?" my brain ain't engaging much right now...):

http://www.thyroid.org/

If that's the right site, they've got all sorts of stuff on there. I've managed to forget most of what I've read there... Low T3 with "normal" TSH is relatively unusual, but what is a "normal" TSH level? Not only that, but it's Thyroid Stimulating Hormone, so if your body (pituitary gland??) doesn't think the thyroid *needs* stimulating, whether it's correct in that or not, the TSH won't raise, so the T3 won't go up...