[Ski]

#1062699

Hi Julie,

I’m so glad you found us! Unfortunately, your path to diagnosis is fairly common ~ Graves’ is relatively rare, and the symptoms mimic so many other common maladies, so our doctors tend to presume it’s the more common thing first, and only later on do they realize this is something else. I’m sorry you had to wait so long, but glad you’ve come to the correct diagnosis at last!

We’ve had some other people here that have gained weight instead of lost it, and I would agree, that completely SUCKS. ” title=”Very Happy” /> Still, the result is the same in the end ~ normalizing and stabilizing your thyroid hormone levels will help you bring your weight back where you feel more normal. For now, you are VERY ILL, please do not minimize what’s going on in your body. You say that you know your limits, but keep in mind that as long as you are not treated in any way, you risk a lot of trouble, especially when you’re very active.

You can take ATDs and see how they work for you at first, it’s a good way to bring your levels down and begin the healing, and also to allow you to get your head back, if you know what I mean. It’s all so disconcerting, and being ill on top of it just doesn’t help us navigate through the process of treatment and healing.

You WILL get there ~ arm yourself with all the information you can get, knowledge is POWER. Keep in mind that it will take time. Longer than you’d like, I’m sure (we all want to be well yesterday), but you WILL reach health again. Promise. ” title=”Very Happy” />

[snelsen]

#1062700

Hi, I am not sure if have been seen by an endocrinologist. It will help you get an appointment if you are either referred, with your labs and history faxed to them by you or your doc who drew the labs- Also, if you can "ask around" or your doc will "ask around his/her community, and provide a couple of names of endos who see Graves’ patients and are interested in thyroid disorders, it will be helpful. I say this because many endos have a practice full of diabetics, for there are so many of them these days.

As Ski said, unfortunately your path to getting a diagnosis is all too familiar. The good news is that you do have the diagnosis, and that is step #1 to getting healthy again. And that means beginning treatment asap. When I was hyper, I was SO WIRED, yet tired. I slept poorly. I was anxious. I was a pain in the butt to everyone. I was impatient. I was defensive.
My heart was RACING! Not a good thing for a heart to do! When I held my harms out, I had a tremor (another typical sign of hyper) I was HOT all the time. I was compulsively hungry. I was misdiagnosed for a long time, like you. It was pure hell.
Nobody understood. It DID help me (when i felt better, after beginning anti-thyroid drugs (ATD’S) to realize that before it happened to ME, I was most probably one of those other people who did not/could not UNDERSTAND someone who had Graves’. It would probably help for your family and friends to read what we say in our posts to you.

Not sure how much reading you may have done yet. There are good and reliable references on this site. There is a lot of crap on the internet.

As Ski said, everything takes way too much time. So true. But the sooner you being this path, the sooner you will go through all these steps back to being LIKE YOU KNOW YOU REALLY ARE! So-see the endo, you will probably be prescribed an ATD and a beta blocker (to control a fast heart rate if you have one.) In a couple weeks, or a fairly short period of time, you WILL begin to feel better. The dose may or may not need to be tweaked a bit, depending on how you feel.

When you get out of the hyper state, you will have three choices of treatment options, (and there is plenty of time for you to learn about this,) it will be helpful for you to use our search option to read about the choices, which are:
RAI (radioactive iodine) ATD’s, or surgery, a thyroidectomy. All are good, and all of us make our personal choice, depending on what we want. In certain circumstances, there are reasons and variables which make one treatment more appropriate than the others, but this is in your future, and you want to deal with the NOW!!

If you go skiing, take it easy, your body is under a huge amount of stress right now, physiologically, it really is! It just doesn’t respectably show like a big cast on your leg!
Do write again
Shirley

You will love this bulletin board, for all of us UNDERSTAND, we have been there, had the same experience you are having right now, and have slugged (or are beginning to slug) our way back to our "old selves."

[JulieG]

#1018100

I have just been diagnosed with Graves. When going through this you know something is wrong but until you get to see an endocronoligist it seems so hopeless. My general physician was treating me for menopause, an intolerance to heat And hot flashes are similar. But then the thyroid storm and muscle weakness and inability to loose weight, and finally he did the blood tests and the uptake and thus the resulting diagnosis. Which by the way, I am not impressed with gaining weight when most with this disease loose it, what the heck!

I have not felt good in so long, and some night I look forward to sleeping. I have been getting weaker and weaker, my husband just can not understand and I don’t really expect him to. We are going skiing next week and quite frankly, I am worried. I know to judge how I feel and take it easy but sure would like to know if others find themselves struggling to do the things they love to do and still get some joy from it. Everything is getting harder to do. I think I just need some encouragement.

I am glad to join this group, it is hard to keep positive when feel like crapp most of the time. I do not like to drag others around me down and so I have been very silent about how I am doing. My treatment has not been planned yet so there is a little relief that I know what it is, even though I still don’t feel good.

[JulieG]

#1062701

I do have an endo and thus far he has been good. I am going with RAI treatment March 5. However he did not talk about watching exercise and I have been exercising five times a week. It has been the only way I was getting over the tremors before I knew the cause. I have been aware the heart rate increase and do watch it. I have been working with weights because my legs are getting weaker and weaker. So many of the conversations seem to discourage exercise, any one feel strongly about exercise?

[snelsen]

#1062702

I know Ski, Bobbi or Kimberly can say it WAY better than I can (on the subject of exercise and generally pushing your body when you are in the middle of being hyper) and I have seen posts on this subject in the past. They will probably respond with a better explanation than the one I am giving you…..

The important thing for you to know right now, is that you are really, really sick, and your whole body is under great stress from being hyper and having too much thyroid hormone. It is not at all surprising that your legs are getting weaker and weaker.

One of the many results of being hyper, is that we lose MUSCLE. We LOSE it! It’s kinda like being super de-conditioned because of being sedentary for a long time, but your illness has done this to you. So I suggest you be as judicious and conservative as you possibly can be, and restrict exercise to a bare minimum, if at all. It’s an investment in your present and future health. You have less than a month until your RAI, so you KNOW you are on your way to getting better with your treatment plan. You can begin to think of getting back in shape and slowly beginning your regular exercise routine by early summer, when you are regulated. Be prepared it takes longer than we like sometimes, like everything about Graves’.

Perhaps your endo does not realize the amount of exercise you are doing. You can check all this out with him, too.
Shirley

[Bobbi]

#1062703

There are a couple of reasons to avoid strenuous exercise while hyperthyroid. To me the most important reason has to do with the heart. The heart beats too fast when we have too much thyroid hormone. And it is less effective at oxygenating the blood and pushing the blood through for some reason. So stressing it, asking it to work harder than normal, puts even a greater strain on things.

More importantly, however, is the fact that excess levels of thyroid hormone can cause aberrant heart RHYTHMS. Arrythmias are unpredictable, and if they occur, they are life threatening.

Once you get your levels controlled back in the normal zone, by whatever treatment method you and your doctor feel is best, the heart issues will not be predominant. But while you are still very hyperthyroid, you need to take things easy, to protect your heart.

Try to keep in mind that while "having" Graves may be a life-long, chronic issue for all of us, poor health is typically temporary. Our treatment options do work, and afterwards, most of us regain our health.

Wishing you good health and soon,

[Author]

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