johnnykongblog

17 Aug 2018

Sorry for the late update. It’s been a very busy summer so far.

Mom’s health has been in a steady decline since her falls last year. This summer, she was diagnosed with congestive heart failure and had to be hospitalized for a couple of days to get her stabilized. At one point, they were considering putting in a stent to help with her circulation but after an echocardiogram was performed, they found that she was in no immediate risk and deferred on the procedure. Instead, she has been placed on Lasix (diuretic) and Entresto (ACE inhibitor) to mitigate her edema (that’s what sent her to the hospital), and later added Carvedilol (beta blocker) to further improve her heart function.

Over the last couple of weeks, her condition has dramatically improved. She’s back to her normal bodyweight (as of this week) and is even back on her feet again (she had pretty much become wheelchair bound for most activities and using a walker in and around the house). She still needs to be closely monitored and will require more frequent doctor visits, particularly with the cardiologist – not something she likes. Happy with her progress and hope it remains stable.

On the flip side of the coin, all of this has done nothing to reduce any stress in my journey and trying to achieve remission. My TSH remains stuck at a ridiculously low number (0.009 in July v 0.018 in April). T4 has returned to within a normal range where it was slightly elevated back in April (1.77 v 1.83). T3 was again not measured. I asked my new endocrinologist why not and he said that it was not as relevant for treating Graves. Still, I would like to know so when time comes from my next labs, I asked that they include it (hope they remember!).

Needless to say, remission remains out of reach for now. Hopefully, my situation will change when I finally pack it in after 30 years with EY and I retire at the end of the year. Too young to retire you say? Pfffgh – never too late to enjoy the rest of my life! 136 days to go!

10 May 2018

Where has the time gone? Apologies for being a month late reporting my last set of blood test results. It’s been a busy spring with work ramping up for a major deployment and caring for mom and her own set of health issues as she gets older. To further complicate matters, there was also a problem with the sample taken as it had clotted and the lab was not able to perform the standard panel as before. In any case, the only values that they were able to determine were my TSH and Free T4. The TSH number got worse, dropping to 0.018, and my Free T4 moved up and just out of the ‘normal’ range at 1.83. All things being equal, I have to believe that stress is contributing to my continued hyperthyroidism, at least from a numbers game. Regardless, I remain mostly sympton free but I am keeping an eye on my weight due to a slight drop and I am experiencing the occassional feeling of being overly warm (2 of 3 factors that lead to my Graves’ diagnosis, the final one would be the return of muscle tremors). I’m hoping the feeling of warmth is nothing more than the fine Florida weather and that the weight loss is due to my attempt at getting outside more. Keeping my fingers crossed for my next blood test in July.

10 Jan 2018

Hit a bump in the road to remission as my TSH levels dropped to 0.067. T4 and T3 are still within their respective ‘normal’ range. I have a new endocrinologist now that I’ve relocated to Florida and once again got the advice to either go with RAI or surgery, to which I declined again. I’m still on 2.5 mg of methimazole per day and so far not showing any signs of toxicity (knock wood).

The blood test results I received under my new doctors were more detailed than what I was receiving  when I was in GA so I have additional values that I’m keeping an eye on:

Thyroid Stimulating Immunoglobin: 497% (normal is 0-139)

Thyrotropin Receptor Ab: 6.53 IU/L (normal is 0.00-1.75)

Thyroid Peroxidase Ab: 92 IU//mL (normal is 0-34)

Thyrogolbulin Ab: <1.0 IU/mL (normal 0.0-0.9)

Even though my blood work is still showing signs for Graves’, I remain asymptomatic and am feeling good. I suspect the stress of moving may have caused some of my numbers to jump so we’ll see if it settles down again in another 3 months at my next lab visit.

Happy 2018!

10 Oct 2017

Just completed my latest check up yesterday and I’m happy to report that I’m still on the happy path towards remission. T3 is sitting at 114, T4 at 1.3, and TSH is now 3.23 – all within the ‘normal’ range. That makes 3 consecutive tests now and I finally got the go ahead to reduce my methimazole from 5 mg a day to 2.5 mg. Woo-hoo! Doc believes that I can probably remain on low dose indefinitely but I’m still pushing for zero.

Next challenge – finding an endocrinologist near my new home in FL with the same conservative mindset to treatment!

1 Aug 2017

Sorry for the late update but have been busy with life.

I had my follow-up blood test back on the 10th of July and received my results a few days later. They only measured my TSH levels and the results are good, assuming that my T3 and T4 are also continuing to be in the ‘normal’ range. My TSH numbers this time out was 2.6, smack in the middle of the 0.4 to 4.5 range. That’s an improvement from my April test where I had a reading of 0.7. I’m still on 5 mg of methimazole, which I hope I can get off in the near future. My next appointment with my endocrinologist will be in Oct. Fingers-crossed for reaching remission soon!

12 April 2017

Breakthrough!

My thyroid readings are finally all showing in the ‘normal’ range! For now, the doctor wants to keep me on the 5 mg of methimazole and repeat the blood test in another 3 months.

TSH 0.70 (0.40-4.50)

Free T4 1.3 (0.8-1.8)

Total T3 121 (76-181)

Smiling ear to ear!

John out!

15 June 2016

The latest labs are in and I have no right to be functional. TSH is at 62.0!!! Yes, you read that right, 62, which means I should be in a thyroid storm.

What’s a thyroid storm? If what I’m finding online is correct, it’s an acute, life-threatening condition characterized with high levels of thyroid hormones. Symptoms include hypertension (nope, blood pressure 110/72), tachycardia (heart rate over 100, nope, 68 bpm), fever (nope, not running a fever), and abnormalities of the neurological and gastro intestinal systems (you may have me there on the neurological side but I’m not experiencing any problems with #2, if you know what I mean).

I have no explanation for how and why I’m feeling ok in spite of my completely whacked TSH levels. I just very thankful that my body is holding up as well as it has and hope it will continue to do so for the foreseeable future. One of my close friends affectionately calls me a ‘rock’ but sometimes I wonder if she is referring to the object between my ears or because I’m tolerant to extremes (not bothered by cold or hot, generally high tolerance to pain – see reference to object between the ears, etc).

As predicted, I’ve been notified to stay off the methimazole and get another test in a month and a half’s time. The challenge here is that is just about when I will be off for a 2 week vacation with mom, cruising down the coast of Alaska to Vancouver, with stays in Vancouver and Seattle before returning home. More than likely, I will do another test before leaving and then prepare a medical kit of sorts to address whichever condition I may be in at the time. Hopefully, I will not need anything and stay symptom free as I am now.

Life is so interesting and unpredictable. The journey continues!