Just completed another half year check up for my Graves’ disease and my thyroid levels continue to show hyperactivity but I’m still not seeing the danger signals from my initial diagnosis. My TSH is still at less than 0.005, same as my last test (ref int 0.450-4.500); Free T4 at 2.49, better than my last 2.75 (ref int 0.82-1.77); and T3 at 217, again better than my last 269 (ref int 71-180). I also got a read for my Free T3, which wasn’t measured previously, at 6.8, higher than the reference interval of 2.0-4.4.
My retiring endocrinologist made one last plea for me to increase my medication or perform some version of thyroidectomy but I once again declined (no, me declining treatment advice was not the cause of his retirement). I’ve selected another New Yorker for my next endocrinologist so we’ll see how that works out.
I’m feeling great! I’m riding my bike 2-3 times a week for 25-40 miles per ride. My speed has improved from 12.5 mph to averaging 13.5-14.5 mph. I’m playing pickleball 3 times a week and trying to golf at least once a week. And as of this past week, I’ve added swimming, if you can call it that, to my activity list.
My vitals were BP of 117/68 (left arm) and 117/69 (right arm), resting pulse at 64, and temp of 97.9F. And while not measured in the current blood work, I did score a cholesterol reading of 164 when I gave blood back in June. I don’t think my stats have been better since the late 1990’s when I took up running.
Jan 21, 2021
My thyroid levels are still way off (TSH: <0.005; T4: 2.75; and T3: 269) and are worse than the readings from last summer. The only thing positive is that I am still not experiencing any negative impacts and, begrudgingly, my endocrinologist is allowing me to continue with my current prescription of 1/2 of a 5 mg tab every other day – a super low dosage. I am acutely aware of my condition and unless my symptoms (radical weight loss, muscle tremors, and constantly feeling warm) reappear, I will stay the course for what I’m doing to stay well. Onward!
Or at least, that’s how it seems with my labs. Back in January, my thyroid levels were as follows:
TSH: 0.431 (just below the normal range); T3: 123 (normal); T4: not measured
The labs from July 10 were:
TSH: < 0.005 (very low); T3: 164 (normal); T4: 2.39 (very high)
My vitals remain great with a weight of 181.4 (w/ clothes, down from 192); bp of 122/77, pulse of 54, and oxygen saturation of 98% (with a mask).
I remain asymptomatic but the doctor is, of course, concerned with regards to my TSH falling back to a super low level. He prefers I either go through one of the procedures to remove my thyroid but I again declined since I remain asymptomatic. Absent that, he wanted me to increase my dosage of methimazole but I didn’t agree to that either as taking that med is one of the reasons it was difficult for me to drop any weight.
I showed him my stats from my bike rides as he was also concerned about heart palpitations and I assured him that rapid heart rate hasn’t ever been a problem (from my last ride, I did reach a heart rate of 183 on a sprint) and how many people at my age can claim a resting pulse of 54?
I am distinctly aware of the warning signs for my particular set of symptoms from Graves. The most specific signs are muscle tremors and extreme weight loss, neither of which have expressed themselves since the initial diagnosis.
But due to his concern, and me being resistant to more aggressive treatment, he wants to check on my bone mass as bone loss is a possible symptom that is hard to observe physically so I will have a x-ray scan performed early next month and see whether that is the case. More to follow….
17 Jan 2020
Happy and Healthy New Year to everyone! As for my mom and myself, age related issues continue to play themselves out for mom and her recent recovery from a broken right hip.
Her surgery itself was a success but this has left her right leg a couple of inches shorter than before, exasperating her already bad balance issues. Being a shuffler (v a walker) ruled her out as a candidate for orthotics. And as for her age related dementia, I’ll just say it is continuing to progress and we’ll have to come to a decision about placing her into memory care in the near future.
Now as for my own health, my annual physical went well but they do note that my cholesterol as being elevated – I blame it on the recent roast duck and pig I had prior to the blood work being performed. Nevertheless, they performed a risk assessment, taking into consideration my other stats and indicated that I wasn’t a risk for heart disease (yet! – BP 123/77, pulse 62, weight 192 – ok, I know, I could stand to lose a few pounds but considering it’s about 5 lbs less than last year, I call it a win, plus most people guess I am less).
My TSH levels also showed further improvements from the last test (0.431), it’s still considered to less than the low normal standard of 0.45. T3 remains in the normal range at 123 and T4 was not measured. In any case, my doctor agreed to let me reduce my methimazole to 2.5 mg every other day and we’ll review my blood test again in another 6 months. I think he is letting me do so as I remain asymptomatic and I am always monitoring for signs of my Graves.
18 Jul 2019
First thing first, mom had her final follow-up with her orthopaedic doctor and her break has healed up nicely and no further follow-ups needed (including any therapy) and the final prescription of ‘no more broken bones, please.’ She is actually walking a little better now than before breaking her leg. Knock on wood.
Now as for my Graves, the latest blood test looks better but still shows one thyroid hormone indicating mild hyperactivity: my TSH is 0.325, still below the low normal of 0.45. That is a marked improvement from the last reading at the beginning of the year of 0.022. T3 and Free T4 are still in the normal range at 118 and 1.34, respectively.
The big question for me is whether or not stay the course with my medication, reduce the dose, or stop completely and see where my thyroid hormone levels will be in another 6 months time. I want to stop but given I’m so close to reaching what is considered to be normal, I think I’ll stay the course for another half year and hope that the TSH reading will finally be within range.
Otherwise, retirement has been good with many trips to the area attractions and more free time in general to spend outdoors. And with the increase in outdoors time, I’ve lost about 6 lbs (now 192) and about an inch off my waist. My doctor would like to see me at 180. I don’t know as I feel great and to reach 180 will probably require dietary changes that I’m happy not to make.
Cheers for now!
07 Jan 2019
One week into the new year and it’s the start of a new chapter in my life. As some of you may know, I retired at the end of 2018 and I fully intend to enjoy the fruits of my last 30 years of labor. And with that, I look to renew my efforts to send my Graves’ Disease into remission. To that end, my blood test result is still showing me as being hyper, but not as bad (low) from my previous results this past summer.
T3: 134 (ref 71-180)
TSH: 0.022 (0.45-4.5) – much better than last summer’s 0.009 but still a ways to go
Free T4: 1.57 (0.82-1.77)
So how am I spending my time now that I don’t have work to occupy me? That’s still being worked out. For now, more frequent and longer walks, starting to learn pickleball, trying to find time to start golfing again, and catching up with friends and family, local and afar. All this is with mom in tow, which creates its own set of challenges. But as the saying goes, a bad day out still beats a good day in the office :-). Decompress, decompress, decompress!
Cheers to 2019!
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.