Journey through TED

            I have been in the “active phase of Thyroid eye disease (TED) for about 6 months, but was only diagnosed last month. I honestly don’t know what took me so long to make the appointment with the ophthalmologist.. maybe I was afraid? In denial? Although it took a while I am glad I finally did.

            The Beginning

A week before I found out I was pregnant I started noticing my vision was a little off. I wear contacts so it almost looked like one eyes prescription changed. I told Dustin I needed to make an appointment for a new prescription but it wasn’t a huge deal so I out it off since we were just a couple months away from getting new insurance which had eye coverage on the plan. As the weeks went on I noticed that if I turned my head to the right I would get double vision.. I told Dustin then I think I’m getting a lazy eye and he told me I was crazy. I had no way of explaining what was going on so I just let it be and brushed it off again.

Noticeable Change

Eventually both Dustin and I noticed that my left eye was swelling a bit, maybe an eyelash got stuck and infected? We didn’t know at this point, but the swelling also wasn’t large enough to become concerned. I then started doing research on graves’ disease which I was aware I had. I read a symptom could be puffy eyes. I thought the hormones in pregnancy were just playing off my GD and making me a little puffy. I got my blood work done and my levels were all normal so again I dint believe this to be too alarming.

            Finally, two months ago the swelling finally got to a point where it was concerning. I also noticed minor mobility issues in my left eye when I tried to look around so I finally decided it was time to do some research. It took me a month to find a doctor who deals with TED who also has my insurance and make an appointment. With COVID going on it was really hard to find a place who would take me as it technically was not an emergency.

Diagnosis

         It took the dr. less than 2 minutes to look me in the eyes and confirm its graves’ disease. I have built up pressure in my left eye, severely restricted mobility and a slight restriction in my right eye. He said once I was through with my pregnancy we could try a pulse of steroids where we start with a high dosage and wean down and if that doesn’t work we can try other treatments directed more towards TED. He also said breastfeeding was not in my future because of the medications I will be on and it being trial and error. It was definitely heart breaking finding that out but I think back to filling my cup. If I don’t take care of myself I can’t take care of my kids.

            A month went by and I noticed my eye swelling even more as well even less mobility to my eye. My high-risk doctor noticed this too and called my Ophthalmologist and got me in for an immediate appointment which was actually today. He confirmed more pressure had built up in my eye and was amazed at how much more restricted the movement in my left eye had become in just a month. After discussing it over with my high-risk dr. they decided to start steroids now to try to stop or even better the swelling in my eye. I can’t say that I’m not nervous but I am also very hopeful that after months I can finally get relief. I am also set to get an MRI of my head next week just to be sure that there is not a tumor causing this, and to also assess the swelling in my eye.

Symptoms

         I have had many of you ask me the symptoms of TED so I will let you know what Ihave experienced so far. Swelling in just my left eye but this usually effects both eyes. Sensitivity to light, if I don’t have sunglasses on I can barely open my eyes outside. Watering of the eyes, Both eyes , although the left is much worse, water horribly all day. Headaches, I get them in my left eye and they radiate through the left side of my head. The headaches are sporadic, nothing triggers them. Decreased eye mobility, my left eye barely moves anymore and it has become very apparent. Swelling, the biggest symptom, my left eye has obvious swelling at this point and it is only getting worse.

Questions

         I have had a couple questions on my IG page that I wanted to address here. Someone asked if my eye will go back. There is a chance it could eventually go back on its own once the active phase is over, maybe even when the pregnancy is over but so far my left eye is severe so that doesn’t seem like it will happen. The treatment I am doing is steroid pulsing currently but once I give birth we are looking into other options. I have done research on Tepezza and this is something I really want to consider doing once I am eligible. Someone asked if it hurts, yes it does my eye is very sensitive and often gives me headaches, noting that can’t be tolerated thank God. Treatments? So as I have stated steroids and infusions are the main treatments, if these don’t help I will eventually need surgery once I am no longer in the active phase of TED. Surgery can be anywhere from liposuction of the fat that has grown behind the eye all the way to needing parts of the bones around your eye along removed along with fat reduction. Surgery does make me nervous. From my research it seems that 50% of people with Graves’ Disease get TED.

            I am always happy to share my journey with you guys, don’t ever be afraid to ask me any questions. It took me a little while to open up about everything because I needed to process exactly what was happening but I have decided to share this part of my life to educate those who don’t know about it, to connect with those who are going through the same thing, to be a positive light for those who are also going through health issues or a hard time and to also get closure for myself and be able to process everything that is happening to me. I appreciate each and every one of you who has supported me and been along for the journey. Until next time.