Hi Elaine,

Thank you for providing such a valuable resource! I have been reading and trying to absorb all of the information. I'm hoping you can provide me some guidance on how I should proceed.

First, I have multiple autoimmune disorders. I am a 50 year old female that is currently going through menopause (I believe I am, anyway).

I had a splenectomy in April 1997 due to ITP that didn't respond after prednisone treatment. My platelets have been at the high end of the normal range ever since without further treatment.

I was Dx with Grave's disease in February 2005 and underwent RAI that same year. I have been taking 100mcg levothyroxine sodium for several years without issue. I've never really had any noticeable symptoms, even prior to the RAI. It was only after routine bloodwork by my PCP after my daughter was born in 2004 that it was noticed and I was sent to an endocrinologist, who I've been seeing at least yearly until he retired last year. My current PCP has now taken over my care.

I was Dx with rheumatoid arthritis in February 2018, which is currently controlled with plaquenil and methotrexate. At that time, my Rheumatoid Factor was 358.0 (0.0-20.0) and my Cyclic Citrullinated Peptide Ab, S was 567.8 (0.0 - 5.0).

In August 2023 I had a corneal abrasion on my right eye. It was at this appointment that I was informed that my eyes look slightly dry and to start using lubricating eye drops, which I rarely did as my eyes felt fine. In April 2024 I felt a slight tugging on the inside of my left eye when looking left. I also noticed that eye looking slightly larger than the other eye. Went to the eye doctor who said everything looked fine. In July 2024 I went back to the eye doctor to ask about the staring and lid retraction. He didn't think it was TED and again assured me all looked fine. By this point, my left eye felt like it was "too open" and was noticeably different than my right eye, which was experiencing slight ptosis. In August 2024 I went to a different eye doctor who reassured me all was fine but was willing to refer me to the oculoplastic surgeon for peace of mind. The surgeon ordered a TSI to rule out TED and it was high, 1.63 (<=0.54). He also gave me a req for a CT Scan. I have not discussed my lab test results with him, my follow up appointment is on 12/18/2024.

I meet with my PCP on 12/12/2024 for my annual exam and plan to mention my symptoms and ask for additional labs.

Previous Labs:

11/20/2024
TSI 1.63 (<=0.54)

12/6/2023
TSH: 4.10 (0.35-5.50)
T4 Total: 8.90 (5.00-10.90)

7/26/2023
TSH: 2.74 (0.35-5.50)
T4 Total: 8.80 (5.00-10.90)

12/2/2022
TSH: 2.20 (0.35-5.50)

8/31/2022
TSH: 2.41 (0.35-5.50)
T4 Total: 8.30 (5.00-10.90)

9/28/2021
TSH: 1.95 (0.35-5.50)
T4 FREE: 1.52 (0.80-1.80)
T4 Total: 8.00 (5.00-10.90)

10/27/2020
TSH: 2.14 (0.35-5.50)
T4 FREE: 1.40 (0.80-1.80)
T4 Total: 10.30 (5.00-10.90)
Vitamin D 25 OH: 44.6 (30.0-100.0)

11/7/2019
TSH: 1.78 (0.35-5.50)
T4 Total: 8.50 (5.00-10.90)

12/7/2018
TSH: 2.53 (0.35-5.50)
T4 Total: 9.70 (5.00-10.90)
Vitamin D 25 OH: 37.3 (30.0-100.0)
B12 Level: 1187.0 (200.0-944.0)

Any guidance you can provide as to what tests I should make sure I ask for, what I should watch out for, how I can improve my symptoms (which are currently limited to dry eyes, staring and lid retraction in my left eye, and just an overall feeling of my eye being too open, even though I can close it fully) would be greatly appreciated. This whole situation has me feeling self-conscious but more so concerned about the Dx and prognosis.

Thank you so much for your time!
Wendy

Hi Wendy,
20 years ago the TSH range was changed to 0.3-3.0 and since it's changed to 0.3-2.5. Test kits haven't changed the range since it's expensive ti do so and the idea is that doctors will know the correct range. Your TSH suggests that while FT4 is ok your FT3 is likely too low and that can contribute to TED. By 6 years after RAI most everyone needs to be on T4 (levothyroxine) and T3 replacement hormone. I'm on Armour, which contains T1, T2, T3 and T4. Not much is known about T1 but T2 is needed for the proper conversion of T4 into T3. I'd ask for an FT3 level and if it's low ask for T3 replacement hormone (cytomel) or a natural form of glandular thyroid hormone like Armour or generic NP.
Reducing thyroid antibodies will help and having optimal levels of both FT4 and FT3 as well as 25OH vitamin D will help you. Also avoid all the enviironmental triggers of Graves' disease. Best, Elaine