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.
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
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!
Just got my latest labs and my counts are showing that I’m hyper once again. TSH is back to 0.02 and Free T4 is 3.9. As a result, my doc is putting me back on 10 mg of methimazole daily. I’m going to try and see if he will agree to 5 mg a day instead as the 10 mg got me to being hypo. Since I being off the prescription, I did manage to drop 10 lb. over the last 6 wks and I have noticed that my hands have been feeling warmer as they normally have been before the methimazole. If I have to stay at 10 mg, I think I have to start a new exercise regimen and do something aerobic on a more regular basis to keep the weight in check.
This is pretty disheartening and a setback for trying to reach remission. But despite all of this, I’m still feeling rather normal and it hasn’t really slowed me down from doing my normal routine, knock on wood. I’ll have another follow-up in 6 wks time but for now, I’m just going to enjoy a long vacation starting this weekend (Alaskan cruise, Vancouver and then Seattle).
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!
10 June 2016
I admit I’ve been pretty lazy about updating my blog, mainly because I didn’t have much to report. My health has been holding up, although back in Feb, my thyroid hormone level had swung completely in the opposite direction (TSH at 8.9!). While I was able to get my labs back, I had a snafu with a follow-up message regarding my prescription that I didn’t receive until my check up today. After the labs came in, the doctor sent a note telling me to reduce my methimazole intake by half to 5 mg a day. Whoops as I’ve been continuing at 10 for the last 4 months now!
Despite that, as I said, my health has been fairly steady, with the only notable change being creeping weight gain. That’s been going on since recovering from the initial dramatic weight loss and I had always put the blame on the methimazole. I’m up to around 203 lb. now, which is pretty close to my heaviest weight which was when I was still seriously working out with weights. My doctor is actually surprised that I’m not more screwed up and not exhibiting other physical signs of trouble. We’ll find out how screwed up my thyroid levels are when my new blood test comes back next week. But other than that, did I mention that my health has been relatively stable? Pulse 68 and blood pressure was 110/72, surprisingly good for carrying all that extra weight and without putting any serious effort towards a consistent exercise routine. Counting my lucky stars….
For now, my doctor said I should just stop taking the methimzaole (yes! – that was my goal) starting now. We’ll reassess once the blood test comes back but I’m guessing that it will continue to show that I’m too hypo and will likely stay off methimazole for at least another 4 months and then get another read to see if I’m within a ‘normal’ range again. The other good news was that he said I shouldn’t have to be concerned about iodine intake now and can resume eating whatever I want. Bonus as I have a big summer vacation planned with mom to go on a whale watching cruise from Alaska to Vancouver, followed by a short stay in Vancouver and then another in Seattle before flying home. It was going to be pretty darn tough to avoid seafood and now I don’t have to!
As for my journey going Mercury-free, I did experience one set back which led to having a root canal and crown put on for one of the tooth that had a big Mercury filling replaced. Apparently, the new filling came too close to the nerve, which eventually abcessed. Other than when I had the kidney stone, probably the second worst pain I had to endure only because it was so constant and caused my entire left side of the mouth to become inflamed. It was bad enough that I had to be put under antibiotics to get the infection under control so they could proceed with a root canal. Chewing, cold, hot, or anything on that side of the mouth pretty much caused excruciating pain. But that’s done now (as of Memorial Day weekend) so all I need to do is keep staying healthy.