So, about seven weeks on the meds and I've seen a lot of changes. I started putting on weight pretty quickly, and my appetite didn't alter with it, so I still felt like I was starving and ate to match despite all attempts not to. That went about how one would imagine at first. Then my appetite began to calm, and I have gained muscle mass and noticeable strength. I've been able to do things with ease that I haven't been able to do in a long time. As a result, I've tried pushing myself. When I was 400lbs, I couldn't walk anywhere. When I dropped down to 165lbs, I tried chasing my son around the park a few times thinking I was in shape to do it, and found that I couldn't lift my legs, and fell on my face when I tried to run. I'm holding pretty steady now at 235lbs and I've been able to jog the length of the football field near my house on a few occasions on walks, and even been able to sprint some! I'll never be as fast as I was, and my knees are pretty well destroyed, but I can move faster than I've been able to in close to a decade. The weakness is fading away. I went up a pants and shirt size, but I don't look "skinny fat" anymore and I feel a lot stronger. I looked at pictures my wife took of me a couple years ago and I looked like I was on chemo. I look in the mirror now and I look like me again, just older.

I'm not tired all the time, and though I definitely need eight hours and still occasionally nap, I'm not falling asleep in the middle of tasks or at meals anymore. My mood has improved and I feel more stable that way.

Oh, and the tremors. Let's talk about that briefly. They were so bad that I could not stand still in line at the grocery store or post office, my legs would start shaking so bad it looked like I was bouncing. I made a good living for some years doing really fine, small solder joints. You have to have a steady hand for that. Back in November, I melted some shield on some wires and touched the circuit board several times trying to repair a webcam that had a short. What would've been a five minute task prior took me an hour of great struggle with ugly results. Saturday, I went to the range with a friend who brought a steel silhouette target, and on a whim, I was able to hold my Smith & Wesson 41 not only on it, but hit it about forty percent of my shots... at 120 yards.

I had my six week appointment and followup. It included an ultrasound and bloodwork. Doc said the ultrasound looked good, and we'll have to wait for the results on the bloodwork, but he said he'll probably have me drop down to 5mg a day as a maintenance dose for now and we'll see where we're at in another six weeks.

For the first time in a long time, I have real hope for my health. I turned 40 last week, and I think if I put in the work, I'll be in better shape than I was at 30. I wouldn't have made that claim a few months ago. It was looking real bad.

I'm glad to hear you had some good news.
Keep working on you . You're worth it!

Fantastic news sir ... and Happy Birthday !

Keep that positive attitude Smudge....you'll beat it and be stronger.

Thanks, guys.

Time for an update, I think.

In made basically zero progress with this stuff after my last post for the next nine months. The doc I was going to was apathetic, and anything I told him fell on deaf ears. Not encouraging when every visit consists of the doctor just reading your chart and telling you "alright, keep taking the meds. See you next time." I told him my appetite was out of control and I felt like I was starving to death at all times, and he told me "that is paradoxical" and that was the end of it. What the fuck is that?

This past spring, I made a number of phone calls and managed to get in with an endocrinologist at Mayo Clinic. Our first appointment threw into sharp relief how badly my care was being managed at the previous place. My doctor is attentive, competent, and addresses my questions and concerns.

quote:

Originally posted by 12131:
Yes, talk to your PCP about treatment options, of course. In general, meds first. Many, but not all, will achieve prolonged remission. Also, the meds, although generally safe, are not free of potential side effects, and some could be serious.

So, reaching back in the thread a bit, this is where we resume things. PTU wasn't safe, so I spent over a year on methimazole. We adjusted my dosage and brought my numbers into range. This did not control or eliminate all the symptoms. As you noted, there are some rather severe potential side effects. One of them associated with methimazole is rapid destruction of the liver in patients with healthy livers resulting in requiring a transplant. My new endocrinologist said that with my surviving all the stages of liver disease except outright failure and being sober for four years (coming up on five), it would be a damn shame to go through all of that and end up being one of those one in a thousand or so, and they had no way to predict it. We talked about irradiated iodine vs surgery. He said the surgeons at Mayo were so good, he felt confident in advising that either route was as safe as the other, and it was up to me to choose which potential side effects I felt like dealing with. We talked through those in detail. Ultimately, he didn't advise staying on the methimazole, and that radiation destruction or removal of my thyroid was going to be the safest route for me.

I got a surgical consult, and the surgeon equally impressed me. He addressed my questions fully, offered zero pressure in either direction, and even showed me his own surgical scar from his thyroidectomy, thus he was able to address my questions as both a surgeon and a patient of the procedure. Massively helpful. I took the spring and summer to think it over.

quote:

Originally posted by 12131:
In these situations, knocking out the thyroid, by radio-iodine or by surgical removal, are the way to go. And, you'll never have to worry about those antibodies anymore, since they no longer have the thyroid gland to stimulate.

I made my decision to avoid the potential associated cancer and leukemia risks with RAI, and last Tuesday, I got my thyroid removed. Yesterday, I got the dressing removed at our follow up. The surgery went very well with no complications. My surgeon said my thyroid was very inflamed, "you had a war zone in there." A healthy thyroid has six blood vessels going in and out. Mine had twenty five. Pathology report says it was 46 grams. There were days I could not swallow, and my voice changed a lot. I have already gotten back a resonance and range to my voice that I haven't had in years. The incision itself is healing up nicely already, and as I was leaving our appointment yesterday, I overheard the surgeon note to his student "that closure looks awesome." I'm definitely feeling it, but it's not as bad as I thought it would be. I'm sore and tired, just taking it easy and listening to my body.

quote:

Originally posted by 12131:
So, Smudge, once you get proper treatment, you will feel and act better.

It's been a while, but I wanted to thank you again for your input on this. This line in particular has stuck in my mind this whole time, but it kept coming up for me this last week. The words "act better" initially caught me off guard, and I used to wonder about it. I guess I could have asked you, but I didn't. Those words, I think, don't require explanation anymore. I'm still stabilizing, but I already feel so much calmer. I didn't realize how much I was struggling before. I cannot truly describe how I used to feel. There were no calm blue oceans, to put it in a Sigforumism. I can't tell you how many times this last week that it is immediately noticeable to me that my initial reaction to social input is coming from a place of actually being at a neutral emotional state instead of being somewhere closer to "rage on tap." You know that feeling when you reach the top of a set of stairs and you think there's one more step when there isn't, and you nearly stumble? It's kind of like that - I'm continually stepping, nearly faltering over a feeling that isn't there anymore. It's difficult to put into words. Combined with all the emotional/personal work I've done with sobriety these last (nearly) five years, I feel truly placid now as a default state, and it's nothing short of incredible.

Physically, I feel a lot stronger already. I'm struggling against it, really. I have the energy and strength coming back to my body, but I need to not disrupt the wound that's trying to heal on my throat. Oh, and not having the rash and maddening itching on my shin that ceased the day after surgery was really nice, too. Dealing with that shit for the last four years wasn't helping me any.

So, to everyone who chimed here or over email to offer their experience and input, I offer my sincere gratitude.

^^ All of That is VERY Good to hear!

quote:

Originally posted by 12131:
Hyperactive thyroid (Hyperthyroidism) has several causes, and Grave's disease is just one of the causes. The two thyroid blood tests are TSH (Thyroid Stimulating Hormone) and the actual thyroid hormone (T3 & T4). TSH is made up in your head (pituitary gland) that goes to the thyroid gland and stimulates it to make the actual hormone. A problem with the pituitary or the thyroid gland will result in thyroid disorder (hyper- or hypothyroid, depending on test results and your symptoms).

Let's say your hyperthyroid is the result of Grave's disease. The T3/T4 levels will be super high, and the TSH will be super low. But those are just screening tests. Grave's disease is the result of the body making antibodies against the thyroid gland, but instead of destroying it, they actually put the gland into overdrive, resulting in overproduction of the thyroid hormone. To confirm Grave's disease, blood tests must show high levels of these antibodies, called thyroid receptor antibodies (TRAb) or thyroid stimulating immunoglogulins (TSI). Once you have these confirmation, that's it. That's the disease.

Typical Grave's disease symptoms and signs that are uncontrolled/undiagnosed: Weakness, weight loss, hair loss, heat intolerance, loose stools, bulging eyes, swollen neck (from the enlarged thyroid gland). But don't forget Afib is one of the most important consequences of excessive hyperthyroidism. Once the condition is under control, the Afib goes away.

Treatment for Grave's disease is actually simple. Methimazole and propylthiouracil (PTU) have been around forever and are safe. But the definitive treatments are either radioactive iodine or surgical removal of the thyroid gland. After your thyroid gland has been knocked out, you will be on thyroid hormone pill for the rest of your life, with blood testing at intervals to make sure that everything is under control. So, Smudge, once you get proper treatment, you will feel and act better.

So Grave's is really an auto-immune disease. Does anyone know what triggers the autoimmune reaction?

quote:

Originally posted by c1steve:
So Grave's is really an auto-immune disease. Does anyone know what triggers the autoimmune reaction?

I did some digging into this over the last couple years, and there's a growing body of articles relating to both Covid 19 infection and vaccine both inducing Grave's in people. I first noticed changes in my throat about a month after getting what I now know was Covid in January of 2020. I quit drinking in March of that year and over the course of the next six months lost over 200lbs. It's hard to say how much of that was getting sober and coming back from the brink of liver failure, how much of it was water retention and ascites, and how much of it was Grave's, but I went from over 400lbs to 167lbs between January and October of that year. At nearly 6'1", my healthiest "fighting weight" is about 220lbs with a 32" waist. I was into 28" pants that at one point were falling off of me, I was all hips and ribs, sunken eyes. At first I thought I was just getting healthy, then rocketed past that to sickly looking. Then I got diagnosed with cirrhosis for Christmas that year, and so most of the symptoms of the Grave's were explained off as cirrhosis. Getting my thyroid numbers checked during a fluke ER visit for what they thought was a stroke in July of '22 finally caught it.

Here a few articles, and a quick search for "Covid new graves disease" gave me a whole bunch of hits.

https://www.cureus.com/article...literature-review#!/

https://sharylattkisson.com/20...health-care-workers/

I mentioned surgery to my neighbor, and she told me that her sister, her niece, and a cousin have all been diagnosed with Grave's in the last three years.

quote:

Originally posted by 12131:
Hyperactive thyroid (Hyperthyroidism) has several causes, and Grave's disease is just one of the causes. The two thyroid blood tests are TSH (Thyroid Stimulating Hormone) and the actual thyroid hormone (T3 & T4). TSH is made up in your head (pituitary gland) that goes to the thyroid gland and stimulates it to make the actual hormone. A problem with the pituitary or the thyroid gland will result in thyroid disorder (hyper- or hypothyroid, depending on test results and your symptoms).

Let's say your hyperthyroid is the result of Grave's disease. The T3/T4 levels will be super high, and the TSH will be super low. But those are just screening tests. Grave's disease is the result of the body making antibodies against the thyroid gland, but instead of destroying it, they actually put the gland into overdrive, resulting in overproduction of the thyroid hormone. To confirm Grave's disease, blood tests must show high levels of these antibodies, called thyroid receptor antibodies (TRAb) or thyroid stimulating immunoglogulins (TSI). Once you have these confirmation, that's it. That's the disease.

Typical Grave's disease symptoms and signs that are uncontrolled/undiagnosed: Weakness, weight loss, hair loss, heat intolerance, loose stools, bulging eyes, swollen neck (from the enlarged thyroid gland). But don't forget Afib is one of the most important consequences of excessive hyperthyroidism. Once the condition is under control, the Afib goes away.

Treatment for Grave's disease is actually simple. Methimazole and propylthiouracil (PTU) have been around forever and are safe. But the definitive treatments are either radioactive iodine or surgical removal of the thyroid gland. After your thyroid gland has been knocked out, you will be on thyroid hormone pill for the rest of your life, with blood testing at intervals to make sure that everything is under control. So, Smudge, once you get proper treatment, you will feel and act better.

You got everything you need to know from Q. Hope you took this in and get better.

RMD

Glad to hear you’re finally getting the medical care you deserve; hope you feel better soon!

Smudge, you mentioned earlier about your tremor; that's one of the symptoms of high thyroid level. Is that gone now?
Beta-blockers (atenolol or metoprolol, usually) can help control the tremor and high heart rate associated with high thyroid levels, but are usually given early on before methimazole can work.
Curious what your resting heart rate is these days.

Thank you nhracecraft, rduckwor, and SigFan.

quote:

Originally posted by sjtill:
Smudge, you mentioned earlier about your tremor; that's one of the symptoms of high thyroid level. Is that gone now?
Beta-blockers (atenolol or metoprolol, usually) can help control the tremor and high heart rate associated with high thyroid levels, but are usually given early on before methimazole can work.
Curious what your resting heart rate is these days.

Being a cardiologist, I'd be curious about your opinion on a prior medical outfit deciding that what I needed was a cardiac ablation for severe afib. Got that done in early December of 2020, a few weeks before the cirrhosis diagnosis. They had me on metoprolol at first and then flecainide at the time, looks like, and that helped a bit. The surgery helped a lot, but I wonder now if it was necessary or if getting the thyroid stuff figured out first would have solved it, but that took another eighteen months to even catch it.

They pulled me off the flecainide shortly after that, and started me on carvedilol instead. I've been on that since early 2021. The endocrinologist who was careless put me on atenolol for the tremors, and I took that for a while. Pharmacist said that, plus the carvedilol, plus the methimazole was a dangerous combination. I had a few days with some severe chest pains. Called up the endocrinologist's office and said I wanted a different endo, who put me on propranolol instead of atenolol. That has worked wonderfully, I haven't had any tremors since I started on that. My surgeon said that soon we're going to start tapering me off that as well since I shouldn't need it anymore. I'm running so many goddamn pills through my liver right now, it would be great to knock out three of them if I can safely stop the carvedilol as well.

Oh, resting heart rate when they took my blood pressure last week was in the mid 60's. I wanna say I was like, 100/60 something as well.