[Jenny1981]

#1019782

I was diasnosed with Graves 4 1/2 years ago. I tried tapazol for 6 months and felt worse, so I went off of it and haven’t taken anyhting since. My levels have gotten a lot worse but I don’t have the classic graves symptoms. No hot flashes, no night sweats, no shaky hands (unless I don’t eat) I sleep very well at night and have no problem gaining weight. My resting pulse is 105 and I have trouble remembering things. I have been taking hormones to surpress my period for 10 years as I have endometriosis and was recently diagnosed with Lichen Schlorosis. I am beginning to wonder if I have an auto immune disorder or if the hormones I take could be affecting my thyroid. I have heard that when women hit menepose they have thyroid problems and I have not had a period for 10 years. Have any of you not treated your graves? Do any of you have endometriosis or Lichen Schlorsis?

[Madame_X]

#1074020

To discontinue meds and go without isn’t a good thing to do.

Did you tell your doc you were feeling worse when it began to happen?

And a resting heartrate of 105 can be dangerous; when I was diagnosed (it took a trip to the ER after my heart rate shot up to over 150), the cardiologist in on my case told me that there are some people who ignore the increased heart rate with serious repercussions to their cardiac health.

My suggestion: go back to your endo. If you don’t like that one, get another one. it’s essential that your Graves be monitored.

I have not heard of any connection between menopause and Graves. Graves can hit either sex at pretty much any age. There are youths and youngsters that have the condition; same goes for ladies who develop the condition after childbirth.

[DianneW]

#1074021

Jenny, as Madame X told you, it’s essential that you treat your hyperthyroidism. The negative effects on your heart and brain are occurring, even though you don’t feel like they are. By not treating, you’re putting your life and mental health at risk.

If you didn’t feel well on Tapazole it’s possible that your endo was over-treating you; that is, making you slightly hypothyroid. Some doctors simply aren’t too skilled at managing antithyroid drugs.

What I suggest you do is to find a different endocrinologist and have your records transferred there, and then discuss with him reasons that you might not have felt well when you were treated before, and then talk about what else can be tried. If you aren’t happy with what he has to say, then talk to a another doctor still, until you find one who will treat you in a way you find acceptable and explain the reasons in a way you can connect with.

You MUST be treated. This isn’t going away, and the track record before treatments were available was that half of patients died of the disease. Those aren’t good odds, and I hope you won’t play.

[npatterson]

#1074022

My grim response to this post is that untreated Graves’ can be fatal. Treatment is not an option, but the choice of treatment is. The thing that causes death is one’s heart. Get thee to a doctor!

[Jenny1981]

#1074023

Thanks for the advice. I sceduled an appoinment with a defferent endo today as my current one is not working out for me. He actually told me that the only thing I risk by not treatng it is ostioporosis. I cannot get into the other one until mid-march so I guess I will have to wait til then. I have been running about 5 miles a day and now I am thinking maybe that is not good either.

[DianneW]

#1074024

With your doctor’s okay you might consider walking rather than running 5 miles a day, and if you have any severe symptoms before your appointment in March, don’t hesitate to go to an emergency room. This disease can be unpredictable at times, because certain conditions occasionally set off super-high thyroid levels, and that can happen suddenly. In rare instances it leads to thyroid storm, which is a life-threatening emergency and sometimes fatal even when treated. Anyway, I can’t imagine why your doctor told you osteoporosis was the only risk of not treating your hyperthyroidism. When you see your new doctor and explain your reasons for remaining untreated this long, I hope you’ll mention that and see if he agrees.

I was a mail carrier and was able to continue delivering my mail route, which involved much more than five miles of walking, plus carrying heavy loads. I was in condition for it, though. Strenuous aerobic activity was out of the question until the hyperthyroidism was controlled.

I didn’t miss any work when hyperthyroid, but I was an emotional wreck and a real witch (probably spelled with a b). I had gone untreated for a long time simply because my doctor didn’t figure out what was wrong with me until my eyes changed significantly, and by then I had a lot of memory problems too. It took quite awhile after my levels were normalized for me to start feeling like my brain and emotions were functioning somewhat normally again. I don’t think it’s good to remain hyperthyroid for long periods.

You’ll feel so much better once you get the right treatment, if you find a doctor who really listens to you. Sometimes finding that right doctor is most of the battle, but it’s very important. I’ve found that no matter how good a doctor is, if s/he isn’t able to understand the problem I’m experiencing, take it seriously, and have the willingness to find an answer, nothing will change for me and I’m wasting my time and money. That kind of insult the last thing an ill person needs.

I hope your new doctor is the right one so your search is at an end. If not, please start your treatment anyway so you can start healing while you continue the search. There are posts on finding a doctor that might be helpful that you should find if you do a search.

Best wishes

[cccmmm]

#1074025

To be honest, when my levels are okay I feel tired, fuzzy and depressed. When I am hyper I feel better, am more productive and it’s worth the hot flashes and other hyper symptoms. Given all this, I DO follow the directions of my endo and take my meds because it’s the best thing for my family. Do others out there prefer being hyper to normal?

[kaicee118]

#1074026

I’ll say that I don’t feel any better while on Tapazole – different, certainly, but not better. Are you on medication when you feel tired, depressed and dizzy, cccmmm? I ask because I’m trying to get to the bottom of why I feel this way.

And I have to admit that when I was first diagnosed with Graves over 2 years ago, my GP told me that he would give me tapazole because I was experiencing symptoms, but if a person has no symptoms you can just wait for your thyroid to "burn itself out" (with blood testing along the way). I know better than that now. I don’t feel good at all on tapazole but I do take it, because of the toll the disease takes on my body if I don’t.

[Ski]

#1074027

I have often joked that I didn’t mind being hyper, because everything was finally getting done! Still, it’s no laughing matter, being hyperthyroid. If you are feeling fuzzy when your levels are "okay," then examine more closely what it means to say your levels are "okay." The range of normal is VERY large, precisely because people feel best at many different points along the range, yet all are considered "normal" in the big picture. If your T4 is near the bottom of the normal range, that may signal it as hypo FOR YOU, so you need to tweak your medications in order to bring the T4 nearer to the top of the normal range (and, in concert, bring your TSH down to the bottom of the normal range). It is always best to stay within the normal range, but within that, you can adjust things a bit. I think I remember that one person did find themselves thinking that they felt best even a little outside the normal range, but eventually that caught up with them and they had to bring the levels into the normal range. Even a little bit of imbalance can cause damage, it just causes less, so the damage may take longer to show up. Have a discussion with your endocrinologist to find out how you can explore the normal range in order to find YOUR normal point. It takes a little bit of time, but if you don’t try, you’ll continue feeling "not quite up to par," and that’s no good.

[DianneW]

#1074028

I agree with Ski. Some people who don’t feel well on Tapazole (methimazole) or PTU might feel better if they took slightly less of it (with doctor’s permission, of course), just as people on thyroid replacement sometimes need to take a little more replacement hormone to feel well (while still keeping TSH in the normal range). It’s important for people with the eye disease not to become hypothyroid while on ATD treatment, so close monitoring of levels is essential. If the TSH is suppressed (which it often is in Graves’ patients), monitoring of Free T3 and Free T4 levels both must be done.

Whenever I have blood tests taken I request that a copy of the results be mailed to me at home. That way I can keep track of how I’ve been feeling and see how it relates to my test results. For me, there has been a direct correlation.

I think the only people who feel better hyper are people who are only mildly hyperthyroid. (Those are also the only patients that a doctor would consider not treating.) "Burnout" is not the only end result of untreated hyperthyroidism. It can cause premature death, or it can simply continue indefinitely. The other possibility is a spontaneous remission.

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