I did the bloodwork part of the screening before I moved a few months back. They still need to do the reuptake imaging part of it, but they couldn't schedule that before I moved and I still need to get that done, but my numbers were way out of whack. If I remember right, the two things they tested for, the standard range was .2 something and my results were in the 200's. When I read up on it, I realized I have all the physical symptoms, and have for several years now. The big one that's really bothering me is muscle weakness, I try to work out, but I'm weaker than I'm ever been. I cannot do a single pushup, I can do about three dips, and I cannot run. Attempting to run, I cannot pick up my feet and I fall. Very distressing.

Anyways, I understand that this is supposed to be pretty easily controlled with medication. My question is, should I expect miraculous results? Like, will I ever be able to get back in decent shape or put on any muscle mass? Will my appetite which has me feeling like I'm starving at every minute of the day go back to normal? Will I be able to go from ballooning and shrinking to deathcamp survivor status normalize? Any input or advice? What should I expect?

This message has been edited. Last edited by: P220 Smudge,

Barbara Bush and her spouse lived with it for years.

quote:

Originally posted by ZSMICHAEL:
Barbara Bush and her spouse lived with it for years.

Your primary may refer to an endocrinologist for treatment.

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.

quote:

Originally posted by ZSMICHAEL:

quote:

Originally posted by ZSMICHAEL:
Barbara Bush and her spouse lived with it for years.

Your primary may refer to an endocrinologist for treatment.

Yeah, we just got our insurance updated and I'm looking at primary care docs in my network accepting new patients. Gonna call and get set up with someone Monday.

quote:

Originally posted by 12131:
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.

First of all, thanks for your reply. I just looked up the results of the two tests on Mychart, here is what they say:

Thyroid Stimulating Immunoglobulin
Std range: 0.00-0.55 IU/L
Value: 194.00

TSH Receptor Antibody
Std range: 0.00-1.75 IU/L
Value: 222.00

These are the only two test results relating to thyroid. I had two hospitalizations in June for what they thought was a stroke, and they caught this with all the standard bloodwork. These two test results were the followup from my primary in Washington. There was an idione reuptake scan scheduled, and they said that would confirm it. If I read you right, these test results confirm it pretty handily, yes?

quote:

Originally posted by 12131:
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.

I underwent an ablation procedure in December '20 for Afib. It fixed it. I haven't had any problems at all since, except for a few weeks ago when we moved. I had it for a week straight along with, as I look at it, a lot of the other symptoms for thyroid storm.

quote:

Originally posted by 12131:
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.

Well, I guess those are options I'll talk with a doctor once I get established care somewhere. I'm guessing it's a "we start with the meds that have been around forever and if those work, great. If they don't, we take your thyroid and you live on a replacement hormones" type situation?

Say whichever treatment I undergo is successful. Will I be able to live an active, healthy lifestyle? Bodybuilding isn't in my future, but I would like to put on some muscle mass and get in good shape. The weakness and, I forgot to mention, tremors have made all sorts of simple tasks difficult. There's things I have to have my 5' 3" wife do that I, at 6' and 200lbs, cannot as a result of this. It's degrading. I thought it was all cirrhosis stuff, but if a lot of it is reversible with taking a pill, that's some hope I could really use right now.


*Edit- I just saw what you added. Thank you, that helps.

That is it. You have Grave's disease. Like I said, all your hyperthyroid related symptoms will be gone, once you get proper treatment, and your TSH and T3/T4 levels normalize.

Thanks. Feeling hopeful now.

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. 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 may be a case for that. When I left the ER, the doctor flatly told me that if it wasn't for the cirrhosis, that I would be leaving with scrip for a thyroid medication, but that the main one generally tried first is hepatotoxic and she wanted me to follow up with my gastro first. Looks like both the meds you listed have such effects, with TPU having liver failure among the first few search hits.

I'll get with a doctor here ASAP and follow up here. Maybe I'm the only one here with Graves, but hopefully someone else gets some valuable information out of this thread at some point.

Thanks, Q.

Doc Q is aight.

I have Grave's disease as well. I let it go too long before seeing a doc so I had the goiter as well as the bulging eyes and all the other stuff you mentioned. My doc had me on the methimazole for a while, but I ended up having my thyroid surgically removed. I felt like new man the morning I woke up in the hospital after the surgery, and I've been chugging along fine for the 20 years since. I just check my thyroid levels and play with my dose every now and then. I am not up to date if there are any newer treatments, so I can't offer any suggestions on how to approach it. I do have some issues with my voice from the surgery. It's lower and raspier and harder to yell. My voice also gets tired much faster now. That would not be a concern with the radiation, and hopefully not with a good surgeon and a not extremely enlarged thyroid.

Yes, the afib went away, so did the hunger and inability to gain weight and the weakness and constant tiredness. I don't know if you can be a body builder. I don't have the build or genes to be really big, but I did get noticeably stronger when I was lifting.

The most annoying thing about recovery is that I get cold now. I used to be one of those people still in shorts when the snow came; now I'm putting on a sweatshirt for temps in the 50s. I also turned 50 this year, which could have something to do with it.

Just like Q said.

I went through this all back in 2014.

After treatment, and killing my thyroid, I take a pill every day. Levrothyroxine, or synthroid as the generic name.

It will take some time to adjust the dosage for you, mine had to be increased for 6 years to get it right. (and I gained the weight to show it).

make sure you take it on an empty stomach, and about an hour BEFORE eating. I set an alarm to take it about an hour before I wake up. (I roll over, take the pill, drink water, and go back to sleep).

Feel free to email me if you have any questions about my experience.

Thanks for the replies, guys. A lot of it is reassuring, some of it is depressing. If I'm apt to get cold, I guess it's ok that I moved to the Sonoran Desert. The voice stuff concerns me.

Did you guys notice changes to your voice prior to getting some sort of treatment? In the last two years, my voice gets tired quickly, has shifted higher in pitch and sounds reedy now. I used to be able to sing with perfect pitch, now I cannot sing at all. I've also had what was before, unexplained pain and sensations in my throat. Now I imagine it's probably all been thyroid.

When you guys say gained weight, are we talking healthy weight gain as in putting on some muscle mass, or the undesired type of weight gain? Not being tired all the time would be fantastic, I thought that was all liver stuff. Between the bad liver and bad thyroid, ten hours of sleep a night just isn't enough. I had to become a coffee drinker just to stay awake at my work bench two years ago. I was falling asleep while torqueing parts together! Now if I have any during the day, I'm up all damn night. I just want to get to some semblance of normal.

Kevin, I'll shoot you an email soon. I appreciate the replies.

I replied, hope you got it. Best of luck, if I can help more, please let me know.

yes, good luck and I'm sure they can get you back on the 'better' track..

when I first read the title of this thread my first thought was surely some one could come up with a better less depressing name for that disease?

The condition gets its name from Robert Graves, an Irish doctor who first described the condition in the 1800s.
Diseases are frequently named after the person first discovering them

I was speaking to a nutritionist about Graves', and he told me that markers on the outer surface of the thyroid are extremely similar to markers on gluten.

Some persons are more sensitive to gluten than others. In some cases a cross reaction to gluten may be the underlying cause of Grave's Disease.

Had my first appointment with an endocrinologist this morning. Not exactly reassuring when after I shook his hand, he said "so what do we have going on? Diabetes?" Guy hadn't even looked at my chart yet.

Anyway, he wants to start me on 5mg of Methimazole, and have me switch off from 25mg of Carvedilol twice daily to Atenulol 50mg once daily, but the second one I have to run by my cardiologist. He said if the Methimazole didn't control it, that the options were the irradiated iodine or surgery, and when I reminded him I have cirrhosis, he corrected himself and said "yes, no radiation for you, it would be surgery." So... here's hoping the Methimazole works a charm and I don't go hepatotoxic. I ran that one past my friend, my old hepatologist and she looked it up on UpToDate and said I was probably fine, but run it past my hepatologist at Mayo, which I'll be doing as soon as I post this.

Yes, the name of this one sucks and gives it an ominous tone that freaks out friends and family when it has come up. He did also mention trying to avoid gluten, if I could, which speaks to your post, c1steve.

Thanks for the input and well-wishes. I'm either tired or wired all the time, and too often am irritable and douchey. I spent the morning showing my ass all over the forum here and sometimes I wonder if it's just my sparkling personality, or how much of that is being on the bleeding edge of "fight or flight" mode at all times. Not a great combo. Plan this afternoon is to get my bike running nd check out the trails by the house so I'll at least have an outlet for the nervous energy.

Good that you know your history. Some docs are absent minded and lack social skills. In most practices the NP briefs the doc on the issues. He is just following medical protocol. Good luck.

Well, after a week on the meds, I'm seeing no difference in my symptoms. I'm sure it takes a while, and we'll have to play around with dosage. I'm trying not to have unreasonable expectations, but I did have a very small hope that I would just start feeling better.

I'll be honest: I'm concerned that they're going to have to surgically remove it, and the thought of it scares me. Bad. For lots of reasons.

Really, if I could just get the tremors to go away, I'd be a happy camper. I also would prefer to not end up looking like Marty Feldman, if at all possible.

quote:

Originally posted by ZSMICHAEL:
Good luck.

Thank you.