[Ski]

#1065692

Welcome, we’re glad you found us! Sorry you had to join the "club," but it’s a nice one, despite the reason. ” title=”Very Happy” />

A quick answer for your main question is YES, we all have varying symptoms. If you look at the list of hyperthyroid symptoms, or those that point to hyperthyroidism, we each probably had some of them, not all of them. It sounds as if you’ve already learned the lesson to keep pushing until someone finds out what’s really wrong with you, kudos for that!

You’ve also learned that the doctor is not necessarily the best one to give you chapter and verse on what’s going on with you ~ it’s really necessary to do your own research and learn for yourself. No one cares about you like you do, I promise. We were all raised with the Marcus Welby idea of a doctor, who is positively consumed by your problem until he "cracks the case," but the truth is they are exhausted and often not up on all the latest information on every single disease. And who could blame them? Especially endocrinologists ~ rates of diabetes are through the roof, and that’s definitely the bulk of their practice, so other conditions, unless they specialize, go somewhat by the wayside. That is not to say anything particularly negative about physicians ~ it’s just the truth. Graves’ is somewhat "simple" for them ~ we have several treatment options, and doctors typically pick their favorite, then push all their patients in that direction. For the most part, the patients do what they’re told and the doctor never gets any pushback, so they figure they’ve made the "right" decision for all their patients. (Naturally, there are doctors who operate differently, and bless them all ~ but I’m afraid they’re in the minority.)

It’s VERY true that what appears to be a "normal" thyroid hormone level may not be normal FOR YOU, and you’ve seen that. It’s a good thing you got the scan done, that has obviously helped you get the diagnosis you need. If you have historical lab values for your thyroid hormone levels (before anything went haywire), that can help you identify YOUR normal point. If not, it’s a little bit of art, finding that, and it can take some time. The methimazole should help you feel better, but it may take a little time. Hyperthyroidism is literally an assault on every part of your body, and only after levels are normal, and stable, can your body BEGIN to heal from the assault. Arriving at some level that "ought to be" normal is not enough, you’ll need to stabilize there for a time (weeks, maybe? months, perhaps?) before you REALLY feel the best you possibly can.

You’ll get more responses, I’m sure. I hope you’re feeling MUCH better, and soon. ” title=”Wink” />

[ELM81]

#1018557

First of all, let me say thank you to everyone who posts here. I’ve been reading up and have learned so much about this disease.I apologize if my questions have already been answered elsewhere, I’ve found some answers in others posts, but it’s still all a little overwhelming. I was diagnosed (sort of) on Monday with a very "mild" case of Graves. I had a rather miserable Fall this year and back in early December I went to my doctor for a variety of symptoms. He took bloodwork and referred me to a gastroenterologist for possible IBS. After more testing and and endoscopy/colonoscopy I was diagnosed with IBS. This didn’t explain my other symptoms however. I would have sudden crying fits for no reason that could go on for hours (I was referred to counseling). I became, what I thought at the time, was hypoglycemic. If I didn’t eat frequently I’d feel like I was going to pass out. I kept snacks with me at all times. My mother thought I was losing weight. I didn’t notice anything, but when I finally got around to checking the scale, sure enough I’d lost some and have since lost more. My blood work finally came back and I was told my thyroid numbers were "abnormal" so off to an endocrinologist I was sent. And here is where my questions start. I’ve read here that your "good" level can differ from person to person. Does anyone feel poorly even if they’re levels are close to normal? My numbers were benign enough that the endocrinologist was about to send me packing with a "you’re fine" before I forcibly began relaying my symptoms (because he’s not the listening type). Such as the crying and that for the past two weeks I got irritated over the simplest things. I would get shaky and have the weirdest feeling of being "off." Also the feeling that you’re wired and no matter what you do, you cannot chill out. I was sent for a thyroid uptake. It came back slightly hyperthyroid. He said that made it technically Grave’s, but that I was a very mild case, if even that. He gave me a prescription for the lowest dose possible (his words) of methimazole, 5 mg every other day. He said come back after 3 months and the medication would probably make it all go away. No mention of words like "remission" or an overview of whether or not it could come back. Frankly, he seemed so unimpressed (brusque and dismissive) with my case that I left even wondering if I should tell people I had Grave’s. I still feel that way. As if I’m being a hypochondriac. Has anyone NOT had the rapid heartbeat? My pulse rate is fine. I’ve always had a very low pulse rate and exercised regularly. He kept going on about how if I had a problem my pulse rate would be high. After reading about what others have to deal with I’m very grateful it’s not. Mind you I have to tell myself that forcefully when my body feels so shaky I wonder if I’m about to have a seizure. It’s as if someone has flipped a switch that has turned my blood to a setting of vibrate. Last week it was so bad at one point I couldn’t hold my hands still enough to use a cash register at work. Is anyone else missing one or more of these "classic" symptoms? Or have levels that are very close to normal with symptoms that are turning your life upside down and making you feel like you’re gong crazy? In the beginning I thought I was going nuts and was relieved when the blood work came back and there was actually something psychically wrong with me, but after seeing the endocrinologist and his attitude of there being barely anything wrong with me, I find myself second guessing my symptoms all over again!

[Bobbi]

#1065693

Good for you for pushing the endo to listen. I consider the words " a little bit hyperthyroid" to be a bit like a "little bit pregnant." You either are or you are not hyperthyroid. If you are, it needs to be treated. In a newsletter that was published for a while by an organization called the American Thyroid Foundation, a doctor wrote that studies were finding that being even subclinically hyperthyroid — i.e. slightly — had been shown to cause ALL of the bad long-term issues associated with the more powerful forms of it. More to the point — you know that you are "off" and have been for a while.

Basically, the dose of methimazole IS based on the lab numbers for thyroid hormone, not how you are feeling. You don’t want to take too much of it, and fall into definitely hypothyroid territory, which is another diseased state. Being put on it all all means that your thyroid labs fell outside of the range of normal, on the hyper side. It is good that you are being treated.

Within the lab values that are considered "normal," however, we can indeed vary– one person to another — as to where we feel the best. For me, the middle to hypo end of normal is MUCH more comfortable than the hyper end of normal. For other people, however, it is the reverse. As you deal with this disease, you will come to decide where you fit within that normal range. One helpful way to do that is to keep a copy of ALL of your lab work over time. You can jot, on a post-it note or something — symptoms, or lack of symptoms, if you wish. Don’t expect, however, a specific number within normal to feel "right" all the time. Unfortunately, there are lots of things that can make us "feel" hyperthyroid (wired) or hypothyroid (sluggish), when, in reality we are neither of those things. It makes it more complicated, for sure.

I do hope you are feeling much better, and soon.

[ewmb]

#1065694

I was always a case of "that can’t be your thyroid causing that" because my numbers weren’t classic. My GP suspected it and an cardiologist I went to see too because of the pain in my chest. It was my endo who said I had Graves even though I didn’t have all the classic symptoms at once. I did have a family history and my uptake and scan showed classic Graves. I’ve never had the antibody test come back positive either. After three years of ATDs- hypo on them to off to no remission and being very sick sometimes I was finally low enough on my TSH to have RAI. You are right that you know when you are not right. I am not right right now trying to get my correct dose of replacement hormone after almost 8 months since going hypo after RAI last May. I know better than to think all of it’s my thyroid levels but I need that to be right to level my playing field. Then I can work harder on getting my other issues under control.

Please do tell those who need to know that you have Graves. It may get worse for you before you get better and I have learned that I am not irreplaceable and that others can pull their weight for me some times. It is a hard road but you are on the right track and sound like you are a strong person. Good luck with your treatment and I wish you better health soon.

ewmb

[bluewave]

#1065695

For a year, while I had most symptoms one sees in a list of GD/hyper symptoms, the ones that bothered me most were GI probs not often found in a list of hyper/GD symptoms, such as chronic unbearable nausea, loss of appetite, and more than infrequent diarrhea.

My PCP kept wanting me to see a GI (not an endo), and the GI Dr wanted endoscopies, etc. I was way too afraid to do the upper endoscopy, so I suffered months more before I ended up at an endo.

About a 1 year into this, I saw a couple of endos, and they found high FT3 & FT4, very low TSH, and plenty of GD antibodies.

After 2.5 months of ATDs, I went up to 40mg/day methimizole yesterday. The Dr said my case was bad, not mild, yet I presented w/ a mix of classic and non-classic GD/hyper symptoms, and I really only mentioned or emphasized the non-classic ones — nausea, nausea, nausea and weakness w/ general sick feeling.

I’m careful not to assume every problem is from the GD; maybe I have a GI prob, but all the symptoms have improved on the meds, and my PCP said to hold off on the endoscpy until the thyriod is under control.

You may send me a private msg for more details, or just post here again.

[knitlit]

#1065696

When I was first diagnosed, I actually didn’t know I was having any problems. NO rapid heartbeat that I was aware of, felt good, but my BP/resting rate was high. Went for routine physical. I also went for a routine eye exam, another thing I had put off for years, and ophthalmologist found I had a slightly protruding left eye, again I was caught off guard, hadn’t known that this was happening, but this was another piece of the puzzle for my internal medicine person, who by this time had my blood lab results w/wonky out of range, so he had my TSH/T4/T3 levels etc taken again, which showed even wonkier the 2nd time. I did have the tremors though, I attributed those to caffeine or peri-menopause, or being hungry or time of month.

I felt good so didn’t expect what resulted . shortly before the diagnosis was confirmed (about a month later) I started having the rapid resting heartbeat. What is weird is that my antibody results/uptake etc were way up there, but I seem to not have had the extreme symptoms that others have reported on these forums w/test results in less extreme ranges. I don’t know if this is because I was just in the beginning phases of the disease or what, but everyone definitely seems to have different experiences w/this disease.

Enough about me and my experiences.

If possible, please shop around for another Endo. Find one that has dealt w/GD patients. IMHO most Endos are dealing with diabetes and hypothyroidism.

best of luck, keep us posted.

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