Advice on Graves?

[weathergirl1971]

I am very confused.  I went to a neuro-opthamologist because of double vision.  He ran blood work and MRI.  My TSI is 2-3x the normal level , but my TSH, T3 & T4 are all normal.  The MRI showed my eye muscles are inflammed.  The neuro-opthamologist says the high TSI and the MRI results are signs of Graves.  
My primary care doc., an internist, said if my TSH, T3 & T4 are all normal maybe its not Graves and if it is Graves he would not know how to treat it--because the goal is to get the TSH & T4 within normal range.  Since mine are already normal any medication will probably take them out of the normal range.
Any similar experiences?  
Any advice?

[tm514]

Hi,

You can have Graves Orbitopathy (Graves Eye Disease) without having the Graves Thyroid Disease.  They are each caused by different (but related)  antibodies.

I had the symptoms of GED for months before I was diagnosed with the Thyroid side of things.

Treatment for Graves Thyroid will not treat the eye problems.  The goal is often to have the thyroid issues under control before permanent treatment for the eye problems is persued.

The options for your eyes: some docs use prednisone or other steroids to help reduce the swelling of the eye muscles; some docs use radiation to accomplish the same goal; the only real permanent solution is surgery, which is usually done in 3 phases: orbital decompression to remove some of the bony eye socket or fat deposits (which is what causes the eye muscle inflamation), a second surgery to correct double vision if present, and a third surgery to correct any eyelid defects (often with Graves Orbitopathy lids will retract and cause more of the white of the eye to be exposed than should be, which is what causes the dryness, grittiness and tearing).

The two diseases are treated separately.  If you have access to an occuloplastic surgeon, they are usually very experienced in treating Graves Eye Disease.  

Also, I'd be vigilant about developing symptoms of the thyroid problems associated with Graves - hyperthyroid symptoms such as heart palpitations, intolerance to heat, fine muscle tremors in the hands - a google search on Graves or Hyperthyroid will get you a complete list of signs and symptoms.

Most people have both sets of problems, but some with thyroid problems never develop eye problems, and some people with the eye problems never develop the thyroid problems.  Sometimes onset can be months or years apart.

Hope that helps you a little.  Please follow up with your eye doc.  Both docs are probably correct in their individual diagnosis.  Close medical followup early in the Eye Disease is important for getting you back to normal down the road.

Good luck.

[AR-10]

TSI is indicative of Grave's disease.

If your hormone levels are good, the doctor is right. No treatment required other than follow-up bloodwork every few months. He might want to run other antibody tests to get an idea of what the chances are that you will need future treatment.

You may develop Grave's in the future, or you may not.

You should ask your neuro-opthamologist about Thyroid Eye Disease (TED), and see if he feels this is what is going on. It is seen in people with Grave's antibodies, but it is not a symptom of Grave's disease. It is a seperate disease caused by antibodies that can bring on Grave's.

They often come as a package, which is why your neuro is saying Grave's and your PCP is saying maybe not.

Best of luck to you.