08 October 2016
So I had another follow-up visit with my endocrinologist last month and things look to be settling down a bit on the reduced dose of methimazole (5 mg daily). Free T4 measured at the upper bound of ‘normal’ at 1.8 ng/dL, however, TSH is still way below at 0.01 mlU/L. That compares to 3.9 and 0.02, respectively, back in July.
Not sure how much these numbers truly mean to me as I’m feeling pretty normal despite all these swings. Metabolically, I can feel the effects of the methimazole as it was causing me to put on extra weight when I was at 10 mg a day. At the lower dose, I’ve been holding steady at my pre-Grave’s weight, although it would have been great if I could have kept half my losses at the peak of my episode. All in all, I suppose my body knows what my norm is and I’m fine with that.
Next appointment is at the beginning of the new year.
Ciao for now!
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.
Apologies, but been very busy with work as of late. I just wanted to give a quick follow-up regarding the my replacement fillings after having all the Mercury removed and completing my ozone treatment. I visited my bio energetic practioner a week and a half ago to see if the infection under my implant has healed. I’m happy to report that the tests are now registering normal, meaning the cavitation and the infection are no longer present. Woo-hoo!
I do have to say that despite my last blood test results, I have been symptom free these last several months, knock wood. I’ll be having another blood test run soon after the new year to see where I go from here.
Thanks for all the support you are giving and keep the positive energy coming. Merry Christmas and to a healthier New Year! Cheers!
10 Nov 2015
Just a quick update that I finally completed replacing the last two mercury amalgam fillings and I have been declared mercury free! I will continue to monitor my health for any potential exposure from the final removal but am feeling confident that I’ll be fine as with the previous three visits. Also received the final ozone treatment for the infection under the implant and will have a follow-up in a month’s time to check its status.
Thinking about how strong of a connection there is to my feeling well vs what my blood test shows…hard to say but happy that whatever changes I’ve been making have been having a positive effect so far.
8 Nov 2015
It’s herd to say whether I’m progressing to remission or if I’m regressing. I say this only because I continue to feel fine and have been doing a number of things to work towards remission for my Graves’ Disease but my physical health is contradicted by my blood tests.
The major focus of late is to address my mercury amalgam fillings and replace them with a composite I’m won’t be sensitive towards. Three of the five teeth are complete and I have my final two to go in one last swing this coming week. I’m also getting ozone treatment for the infection under my implant and will get the final dose with my next visit. I’ll follow-up on how well that treatment went in a few weeks to assess the results.
I also had another follow-up with my endocrinologist this past week and have had another blood test completed. I relayed to my doctor how I’ve been feeling and he can physically see that I’m doing ok. We talk some more about potential treatment since my previous blood work was showing that I still have a hyperactive thyroid with a TSH level of 0.03. But since I’m not showing any physical symptoms for being hyperthyroidic, he recommended that I at least stay the course with my prescription of 10 mg methimazole daily. We also have a further discussion about alternative treatments and we talk about RAI, surgery, or long term treatment using methimazole. He re-affirmed that he prefers not using RAI, leaving surgery or methimazole for me. I’ve already expressed my aversion to both surgery and long term use of methimazole and I bring up the topic of alternative treatment with either L Carnitine or Lugol’s plus lithium. He absolutely said “No” to Lugol’s iodine and said that iodine is the last thing anyone with Graves’ should take (his analogy is that it’s like throwing gasoline on a fire). As far as Carnitine and lithium, he said that both were still unproven even though I sited a German study for Carnitine and a Walter Reed Army Medical study on lithium. I tabled the discussion but am continuing to do more research on this.
Later in the week, the new blood test result came in and it was back to 0.01! I’m stunned as this is where I was a the height of my Graves’ episode earlier this year, yet, right now, I’m not showing any signs of Graves’. I’m not feeling excessively warm, I’m not losing any weight (I’ve been pretty stable for the last 3 months in the mid 180’s), none of the muscle shakes, no feeling of being suffocated, and none of the acne on the back of my neck. I honestly don’t know what to make of this.
I’ll keep my fingers crossed for continuing to feel well but I will be staying vigilant and keep close watch on my physical health.