Graves Disease Update

Posted on Friday, 16th November 2018 12:08 PM EST

After six months of trial and error my endocrinologist agreed that we needed to try something new.

She proposed radioactive iodine treatment but I ruled that out. While we have general data on the success of that treatment (90%) we also know it does not work for some people and there are complications, especially for the eyes. I have three cousins who tried radioactive iodine treatment and ultimately ended up with surgery. I also learned from my mom that hyperthyroidism runs in her side of the family. She informed me that the entire McLaren family (which is my grandmother’s family from Carriacou) has thyroid problems. It has affected many of the grandkids. I am so lucky.

I initially said yes to doing radioactive iodine treatment which, because of possible compromise of vision, required a trip to my ophthalmologist. He did some tests and then explained to me that I, in fact, had two diseases. Graves Disease and Graves Eye Disease(GED). He also advised me that neither radioactive iodine treatment nor a thyroidectomy would address GED. GED has to be treated separately and my options were limited. The proptosis in my eyes is worsening but until I recover from the thyroidectomy, there is nothing to be done.

Sigh.

Yesterday, I met with a surgeon at the Rutgers Cancer Institute of New Jersey in New Brunswick to discuss expectations and risks of a thyroidectomy. Surgery is scheduled for the second week of December.

Am I scared? Yes. Absolutely. There is a risk of infection and bleeding. There is a risk of nerve damage leading to changes in speech.

But the risk of untreated or poorly treated Graves Disease is higher. None of what I am experiencing right now is pleasant. Bhavna reminds me that the silver lining is that in a few weeks this chapter of my life will be in the past. But in the meantime, I'm shivering in the cold rain.

4 thoughts on “Graves Disease Update”

  1. HealthAt the end of 2018, I had surgery to remove my thyroid as a final resolution to Graves Disease. The symptoms from Graves Disease are all gone, but I will forever on Synthroid thyroid medication.The Graves Eyes Disease (GED) has, however, worsened. I am seeing some of the best ocular specialists at Wills Eye Institute in Philadelphia. To reduce the swelling and pressure in my eyes, we have started a treatment of high dose steroids and twelve days of radiation treatment at the Bodine Center For Radiation Therapy. The doctors are concerned that pressure could crush the optic nerves and lead to blindness. We will re-evaluate once this course of treatments is complete. This disease has been a new challenge for me since last year when I was dealing with Graves Disease. I have limited my drive time, and I’m commuting to Iselin for work, using the New Jersey Transit North East Corridor line between Princeton Junction and Metro Park. Bhavna has been helping out by doing all the driving to Philadelphia for my appointments.However, my Graves Eye Disease worsened to the point where my eye specialist strongly advised on an intense treatment. After six weeks of radiation therapy and high dose steroids, my eyes “look” better than two months ago. The radiation and high dose steroid reduced the pressure and lower the risk of blindness. However, I don’t feel much better. I still have proptosis (bulging eyes) and my eyelids don’t close properly. I wake up with dry eyes and spend most of the day using lubricating eye drops or gel. Dust and dirt get on my cornea so my eyes often feel gritty. This is especially frustrating when using a computer and at work where attention to detail and concentration is necessary.In September I have an appointment to see an orbital reconstruction surgeon. He/she will determine if surgery can help.FamilyKiran has been accepted into Drew University with a full four-year academic scholarship, the Baldwin Honors Scholarship, through Drew’s Baldwin Honours Program. She will also have access to fatality and academic programs not available to other students. She also qualified for the Francis Asbury Scholarship: Annual Scholarship. We are so very proud of her accomplishment.Kiran has been accepted into the Classics program at Oberlin College, one of her first choice schools. She has also been awarded a four-year academic scholarship. Oberlin College is in Oberlin, Ohio. Kiran is super excited, and we are very proud of her accomplishments.My father passed away around 5 AM EST on Sunday, 7th April 2019. Because I have started the course of treatment for swelling caused by Graves Eye Disease, I was not able to attend Dad’s funeral in St. Vincent. I choose to write a parting post to my Dad that I hope to honour his memory.WorkI no longer consult as a security architect for the New Jersey Courts. My work on the architecture for the credit card processing systems to meet PCI DSS requirements is complete. I am now consulting for CLS Bank in New York. I joined the information security team at CLS Bank as an information security architect in June 2018. I work out of their Wall Street office near Pier 11, and Metro Park (Iselin) office a few days a week with two days working remotely.It’s an open-plan office with zero quiet rooms. The kind that Harvard business studies and psychologist think are a terrible idea.TravelBhavna and I took one item off our bucket list last year. We booked a hot air balloon ride over Letchworth, and we spent a weekend at Seneca Lake, hiking along the trails lining some beautiful waterfalls; we had so much fun on that trip. Our only regret is that we did not do these types of excursions with our kids when they were younger.For 2019, we are planning a few more trips to visit family in Florida and North Carolina.
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  2. Pingback: Khürt Williams
  3. Bhavna and I were not up for hosting Thanksgiving this year. Grave’s disease left me feeling exhausted and anxious. Bhavna has been very supportive taking on helping me schedule physician appointments and planning my calendar for pre-op and surgery. We were both feeling overwhelmed. We told friends and family that we would not be hosting this year.
    Everyone was disappointed so Falguni and Dipan decided that they would host Thanksgiving this year.
    That’s what I am thankful for. That Bhavna and I have a support system. People who are there to pick us up, to carry our load, when we stumble and fall. These are the moments in life that I think makes for the best kind of memories.
    I didn’t take many photos (my eyes are irritated from Grave’s Eye Disease) from last night, but I did capture a few moments.
    FujiFilm X-T2 + XF16-55mmF2.8 R LM WR — © 22 November, 2018 by Khürt L. WilliamsFujiFilm X-T2 + XF16-55mmF2.8 R LM WR — © 23 November, 2018 by Khürt L. WilliamsFujiFilm X-T2 + XF16-55mmF2.8 R LM WR — © 23 November, 2018 by Khürt L. WilliamsFujiFilm X-T2 + XF16-55mmF2.8 R LM WR — © 23 November, 2018 by Khürt L. WilliamsFujiFilm X-T2 + XF16-55mmF2.8 R LM WR — © 23 November, 2018 by Khürt L. WilliamsFujiFilm X-T2 + XF16-55mmF2.8 R LM WR — © 23 November, 2018 by Khürt L. Williams

  4. Tuesday Photo Challenge – Trio by jansenphoto (Dutch goes the Photo)

    Three heads are better than one?

    We've all heard of the rules of thirds but have you heard of the rule of three?

    The rule of three is a writing principle that suggests that a trio of events or characters is more humorous, satisfying, or effective than other numbers in [the] execution of the story and engaging the reader. The reader or audience of this form of text is also thereby more likely to remember the information conveyed. This is because having three entities combines both brevity and rhythm with having the smallest amount of information to create a pattern. It makes the author or speaker appear knowledgeable while being both simple and catchy.Wikipedia

    Although a writing principle, one of my photography instructors, Loren Fisher, has suggested using this principle when composing images with more than one object of focus.I’ve been trying to use this principle in my images.This image was captured earlier this year near South Street Seaport during my lunch break. I used my Fuji X-T2 + XF16-55mmF2.8 R LM WR and shot using an ACROS Film Simulation Recipe by Ritchie Roesch.My participation in the photography challenge has decreased. My thyroid problem has not improved and has left me drained of energy and motivation. I will soon have surgery to remove my thyroid and I hope my energy and motivation will return.
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