[mikkie2876]

#1017951

Hi All,

I have been doing several rounds of testing after having an initial abnormal TSH result. Just to touch on what made me go see a doctor- I had been having all kinds of strange symptoms since 2006 In 2006 I developed an eye condition. At the time my eye doctor said I had "Chronic Allergic Conjunctivitis" Extremely dry gritty eyes, excessive watering, red, swollen eyelids and blurry vision. This went on for almost THREE months! I ended up at the ER one morning after waking up with extreme eye pain. I had tore the cornea. And as fast as my eye problem started, it just disappeared one day. Around the same time, my hair started to fall out. The hair loss has tapered off, but if I compare myself to photos from 6 year ago there is a marked difference. It is also very dry, breaks easily and my hair has lost all of its curls. Since 2006 I have had bouts of insomnia, fatigue, more eyes problems (dryness, watering and sore eyes in the AM), swelling in the ankles (non pitting) and very dry skin. Recently I have had worsening fatigue, anxiety and an itchy red rash around my ankes and shins. The rash was especially telling because I had never made the connection until I read about Graves. When my results came back I was completely shocked. HYPERthyroid even though I had gain 50lbs in less than 2 years. My first test revealed normal T4 & T3 with low TSH (0.161). I also had a very high white blood cell count. My doctor sent me for additional testing. I had a tyroid ultrasound done and it was normal. Here are the results from my recent test:

T3 UPTAKE: 33.0
TSH 3RD GENERATION: 0.344
T4 FREE 1.16
CORTISOL, ATCH ANDTYROGLOBULIN ALL NORMAL
TPOAb (THYROID PEROXIDASE AUTOABS): 116 (ELEVATED, NORMAL IS LESS THAN 60)

She is not ready to diagnose and wants to send me in for an RAIU. What else should I be asking for? I want an accurate diagnoses and Im not sure if I should just ask her to refer me to an Endo. Also, I really think I may have Graves. She seems skeptical. Thanks for your advice!

[Kimberly]

#1061806

Hello – TPOAb (thyroid peroxidase antibodies) can be a marker for autoimmune thyroid disease, but it is not specific to Graves’.

Common options for antibody tests for Graves’ include TSI (thyroid stimulating immunoglobulin), TRAb (thyrotropin receptor antibodies), and TBII (TSH-binding inhibitory immunoglobulin).

Having suppressed TSH with normal T3 and T4 is referred to as “subclinical hyperthyroidism.” There is some controversy over whether subclinical hyperthyroidism should be treated, as suppressed TSH can be associated with bone density and heart issues. However, the usual approach is to “wait and see” – with periodic follow up testing to see if you progress into “overt” hyperthyroidism with elevated T3 and T4.

It sounds like you have had a tough time with symptoms for quite some time. I hope that you finally get some answers — and some relief!

[mikkie2876]

#1061807

Hi Kimberly,

Thanks for the response.. I had also forgot to mention that I had a checkup with an opthamologist last week and all went well except he noticed the dry eyes and he also said that I have signs of early Optical Nerve Atrophy.. He took a retinal scan and wants me to follow up in a year. I told him that I am hyperthyroid with a possible autoimmune disease that hasnt been diagosed yet, but he blew me off and said that sometimes people are born with ONA it and it never progresses further. Also, I wanted to ask- what exactly does the RAIU look for? My ultrasound didnt detect nodules and my thyroid wasnt enlarged. Would it be more benificial to ask my doctor to do the other autoantibody screenings instead?

[Ski]

#1061808

The antibody levels can rise and fall for no reason anyone understands clearly, so a negative antibody test isn’t necessarily conclusive. RAIU is conclusive for Graves’ Disease, because it confirms the distribution of iodine in the thyroid gland. Typical patterns are very different from GD patterns, so it’s usually easy to tell if it’s Graves’ you’re dealing with. If you have GD, the uptake is all over the gland and a higher than normal percentage of iodine taken into the thyroid. If not, the percentage of uptake is lower, and the pattern is not so much "everywhere." You’ve already ruled out nodules, I think, but if you have a nodule, that will either appear as a small area of very high uptake – that’s a "hot" nodule – or an area without any uptake – that’s a "cold" nodule. You can get a great deal of good information from the uptake/scan.

[mikkie2876]

#1061809

Ski- thanks for the helpful info. All I know is that I was really depressed when I was told that I had an autoimmune disease. On one hand I was relieved that all of these symptoms I have felt for the last few years havent been in my head and that I am closer to finding out why. On the other hand, I felt betrayed by my own body. The thought that my body is attacking itself is like watching a cat chase and bite it’s own tail. ” title=”Confused” />

Im going to call tomorrow and get on setting the RAIU appt. Im not looking forward to swollowing radioactive iodine, but if it is going to get me answers then that is what I have to do! Thanks again, Michelle

[snelsen]

#1061810

Regarding your optic nerve atrophy. Here’s my thinking. And it is from my own experience. I suggest that you establish an ongoing relationship with a good neuro ophthamologist, continuing to have this condition evaluated on a regular basis. Is this possible for you? Optic nerve atrophy can have several causes. But one of them that can be treated is associated with TED, or thyroid eye disease. This is a different subject than Graves’, although it is certainly associated with Graves’ most of the time. My point is that if there is increased pressure from eye muscles being bigger, and developing additional orbital fat, it gets crowded in there! The optic nerve is being "pushed," and there is pressure on it. IF the cause is thyroid eye disease, then there is a surgery, called orbital decompression, which is done, to save the optic nerve from permanent damage. If you do have thyroid eye disease (TED) I suggest you talk to your ophthamologist about seeing a neuro/opth doc to follow your eyes. I have concerns about you being seen in a year. Any way you can ask more questions about this? I know you are focused on the RAI right now, but this is something for you to learn more about from your eye doc, so that it is/is not established what the cause is of your ONA.
I was followed closely, my eyes were fine for a while, then my visual fields decreased in my left eye, and the color red was less distinct. I had optic nerve atrophy. The treatment was to make more room in the eye socket, to relieve the pressure on the optic nerve, for the damage otherwise would probably be permanent, resulting in blindness. I had an OD, my visual fields and vision returned to normal.
Shirley

[Bobbi]

#1061811

Regarding the low TSH, normal thyroid hormone levels: Think in terms of viewing a two year-old’s birthday party with a video camera vs. a single shot camera. TSH is the video; thyroid hormones are the single shot. When the test was taken, your thyroid hormones were normal. That could have been a photo of the children smiling over cake. But TSH is like a "running average" of thyroid hormone levels — it gives us sort of a view of your thyroid levels OVER TIME. So, a video, in addition to showing the child smiling over cake, also incorporates a few minutes before when one of the children was beaned by the birthday child and started crying and chaos ensued. It’s not a perfect analogy, but I think it helps us to understand why part of the test could be considered normal, but another part abnormal. Having a suppressed TSH suggests that over time your thyroid hormone levels were not normal, that they were in fact higher than they should have been. And that they likely were higher than they should have been for longer than they’ve been normal at the present.

[mikkie2876]

#1061812

Snelsen-

Thanks for the advice! It is nice to know that someone else has had this experience. Luckily, Opthamologist are covered by my medical insurance company rather than just my vision plan. So I should be able to get a second opinion. If had used my vision plan I would have only been able to see an opthamologist next year.

Also- here is something odd about the ONA.. I mentioned in my original post that in 2006 I suffered a severe episode of gritty, red, itchy, dry eyes for almost 3 months before it disappeared and also had another relapse a little over a year later that was not anywhere near severe. The interesting thing is that prior to all of it I wore glasses starting in 2000. I was nearsighted. I say, "I was" becuase in 2008 when I went in for another eye exam after my vision seemed off with my glasses on my eye doctor told me that my vision had corrected itself. He was as suprised as I was and said that my vision was 20/20 and to just keep up with the exams. It was also 20/20 at the last appt when I learned about the ONA. What I wonder about now is if the pressure on the optic nerve is actually causing the vision to seem improved. Does that make sense? As if maybe the pressure is pushing it into focus. I know that may sound crazy but I thought it was odd that my vision would go back to 20/20 with no explaination and maybe it isnt a good thing after all..

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