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Hi MadameX,
I don’t recall what stage you are at in your treatment, but if you’re hyper, this would be a pretty common experience.
At the conference we had a few years ago, there was a speaker talking about sleep disturbances, and he had some tips that may help.
First, it is NOT a good idea to find out what time it is when you awake in the middle of the night. Your brain starts to form opinions around the time ~ "how long since I fell asleep?" "how long until I have to get up?" "why is this happening, how long will it last?" — and all that processing of information literally wakes you up and makes it harder to go back to sleep.
If you are waking up and really feeling as if you’ve had enough rest, you might want to just go ahead and get up, fix yourself something to calm you again ~ warm milk, hot tea ~ and do something relaxing (reading, maybe) until you feel sleepy again. No TV, it’s bright, colorful and noisy, and there’s a lot of activity on the screen, which is not relaxing. Then again, if you’re like my husband, pick a black & white movie and you’ll be asleep in minutes.
” title=”Very Happy” /> If you feel tired, yet cannot seem to fall asleep, just get as comfortable as you can and lay there resting. Resting is nearly as good for your body as full sleep, and so you don’t need to be anxious that you’re not all the way asleep.
If there is ANY chance that you are really getting enough sleep prior to 3am, you may want to consider going to bed later, so you’ll wake up closer to the time you really want to be getting up in the morning.
I hope something in this message helps!
Hi IrishPoet1920,
I’m sorry to hear that you’ve joined our little club…. I certainly hope you are getting SOME treatment for your Graves’ Disease, because hyperthyroidism will not go away on its own, and it is extremely dangerous.
I can tell you all the individual reasons for your symptoms, but the bottom line is that your body is under attack, unfortunately from its own immune system. There are antibodies attacking the thyroid and pretending to be thyroid stimulating hormone in order to fool your thyroid into releasing more and more thyroid hormone. Thyroid hormone is the fuel for every cell in the body, so each and every cell is "revved up" when we’re hyperthyroid.
Some processes are interrupted as well, as you have discovered. When you work out, hyperthyroidism accelerates the muscle destruction, and suppresses the rebuilding process, which results in loss of muscle mass, even though you’re working out.
Consider the fact that you are like a car with a brick on the accelerator right now ~ engine is revving, for no reason. You end up completely exhausted, and yet strangely anxious. We have all been there, we know.
One thing we all seem to have in common is that we’ve been the "do everything" person in our circle, the one everyone counts on, and the one thing we all HATE is that we can no longer do that. Perhaps it’s a life lesson. Not sure ~ I guess we have to take it that way, for our own preservation.
” title=”Very Happy” />Bottom line, no matter what the cost, GET TREATMENT. You will not get your life back until you get treated. And I don’t mean to scare you, but back in the days when there were no known treatments for Graves’ Disease, it was fatal 50% of the time. With treatment, you will have some tough times to slog through, but you’ll be there for your husband and child.
Hi JandJ,
I am sorry to hear about your local endocrinologists ~ you have a few options. You can investigate the various offices and doctors, and conduct interviews of the doctors, to see if one "feels right" for you. Given your primary care physician’s comment, I would guess that you may not have much success with that, but it might be worth a try. I don’t know if it really comes down to the doctors not being "willing" to work with a thyroid patient, but the issues are certainly different, their practice is most likely full of diabetic patients, and they are usually INCREDIBLY busy. If they don’t have much experience with thyroid issues, they may not be much help to you.
Your primary physician OR an internal med doctor who is willing to learn along with you could be helpful, and could take primary control over your treatment. Whatever relationship you can build with a doctor you trust will be golden.
The initial period of time on PTU is likely to have some ups and downs for you. It’s critical that you have access to a lab for purposes of checking your levels when you feel poorly. A standing order for TSH/T4 blood tests would be extremely helpful for now. Don’t take it for granted though ~ the tests are not extremely costly, but insurance companies are touchy about that. It’s a balancing act. If your doctor consents to a standing order, ask the doctor what they feel would be a "reasonable" amount of time to wait between tests. It may be more often than you think, while you’re dealing with adjusting your PTU doses.
The slower hair growth may well be caused by thyroid hormone levels ~ when we are either imbalanced (hyper or hypo) OR our levels are changing (even if they are going from an imbalance to balance, or moving within the normal range), our body interprets this as an emergency situation and removes support from the "non-essential" parts of the body in order to preserve our "essential" body functions. The body considers hair and nails as the most "non-essential" items, and so those things are usually the first to suffer and the last to return. Go easy on your hair for now, it will come back, promise.
” title=”Very Happy” />We’re so glad you found us! This board helped me through MANY tough times. Let us know how it’s going!
Hi Lynn,
Well, our hearts go out to you too!!!
You say that you’ve had thyroid levels done recently? Are you still reading hyperthyroid, or no?
While I hate to make assumptions about medical professionals, it sounds like you need to find a new doctor to treat you. This one is dismissive and is also not telling you very much. The process of treating Graves’ OFTEN brings weight gain, so already his information to you is not correct.
It’s true that hyperthyroid patients usually (not always) lose weight, but sometimes even THEY gain, so a doctor who does not understand these basic facts is not one I would choose to treat me for this complicated condition.
Your symptoms sound like what we go through when we are hypothyroid, which is why I ask about your most recent lab results. Does your doctor test only TSH, or also T4? At this point, while you are waiting for the RAI to make you hypothyroid and begin taking thyroid hormone replacement, it can be valuable to see both levels. Sometimes the TSH takes a long time to "wake up" when it’s been virtually "asleep" from hyperthyroidism. T4 levels can give you some context.
I just seethe over doctors who tell us, when we know what we are eating, that we are "probably eating more than we think" and that’s why we’re gaining. They have no experience with this at all and are simply not sure what’s going on, so they presume that we are painting a different picture than is true. It’s not fair to us, and serves us not at all.
Now, I’m not sure how long you were hyperthyroid, but please keep in mind that during that time, your body was probably losing muscle mass. You may not have experienced a great deal of weight loss at that time, or you may not have noticed, since you were busy with a new baby. That muscle mass was allowing you to eat more food, because it burns calories even at rest. When it is gone, the entire system is out of whack. First, the muscle mass needs to return. THEN, we need to pretend we are babies ourselves, and build the muscle mass back up. We are not able to return to earlier activity levels without paying some price (pain, exhaustion, soreness). The trick is to do "just enough," only what your body can tolerate.
FIRST, I think you need to get a handle on your thyroid hormone levels. Take charge of them yourself. Get copies of all your blood test results. If you have access to thyroid hormone levels drawn before you were diagnosed (and before you were ill), that will be extremely good information for you. "Dialing in" your own normal thyroid hormone level is going to be time consuming, but as soon as you are traveling in the right direction, you’ll start to feel better.
If no one has been taking T4 levels, ask your doctor to do one more blood test with TSH and T4 included, and discuss the results. There’s every possibility you are ready to begin thyroid hormone replacement.
And lastly, I know you’ve probably seen this mentioned elsewhere, but your body is EXHAUSTED. (Oh, you didn’t know that, did you?)
” title=”Wink” /> While you have brought the hyperthyroidism down, you are still not at any kind of normal threshold, and so your body is still being punished. Things happen all over your body ~ probably more so in areas of your body that were already weak or compromised. When you find (and reach) a normal thyroid hormone level, that will be the start of your body’s return to normalcy, not the end. Patience, patience, patience.Stick around, please let us know how you’re doing!
Sure ~ you can send Nancy a private message (she may send you one when she sees your post).
” title=”Very Happy” />Hi Joy,
Typically ATDs are used for at least a year before you can say you have reached a "remission," but at the same time, antibody levels can rise and fall for no well-understood reason, so perhaps your antibody levels have fallen (a lot) for now. If you are sure it’s Graves’, there’s no getting out of it, sorry.
” title=”Very Happy” />5mg is an awfully small dose, so if that threw you into hypo levels, WOW.
” title=”Wink” /> You might be a "wait and see" patient for now. For some people, the hyperthyroidism comes and goes early on in the process. If that’s true for you, you need to be aware that this is going on in your body and be vigilant for the symptoms of hyperthyroidism in order to head off any other episodes. If going off the medication causes you to go hyper again, you would need to figure out another dose (perhaps consider PTU, it may be easier to use at small doses), or use one of the other treatments.
Typically the early stages of ATDs involve a lot of adjustment in doses, but when you’re starting that low, there’s not much room to use smaller doses, so this is a really good discussion topic for your doctor when you see them next.
