Forum Replies Created
-
I really feel for you, and I know your daughter’s going through a hard time. Try to remember that she has truly not had any kind of stability in her thyroid hormone levels since Graves’ reared its ugly head, so hard as it is, cut her some slack in her behavior right now. Run it as "damage control" first ~ don’t let her hurt herself or anyone else ~ and then try to work on making her comfortable and pleasant. It’ll come, she’s on the right track. Patience, as with everything Graves’.
First things first ~ if you have to pay for the lab tests out of pocket, you’re going to want to be careful about when you do them. It takes our body at least six weeks on a new dose of thyroid hormone replacement before our lab results truly reflect how our body is reacting to the dose. Remember too that the RAI may continue to work on her thyroid at some level ~ it does most of the work in six weeks, but it can continue to have an effect for up to six months. So there’s a little bit of complication to this process ~ at the same time she’s taking replacement hormone, her body may still be making a little hormone, but less all the time.
You are fortunate because thyroid hormone replacement is an extremely inexpensive prescription, but you may want to have the doctor limit the amount of pills they provide at any one time, right away, just in case you need to change doses in six weeks. Maybe get 50 pills at a time instead of 100, for now. Once levels are remaining stable, get enough to last a while ~ I think it might be a price break at 100 pills, since that’s a full bottle, and they don’t need to open it, just stick a label on it.
As I said though, just because your daughter’s had RAI and is on hormone replacement, it certainly doesn’t mean she’s well and should be expected to bounce back to normal in a jiffy. I’m sure she’d like to, but it really doesn’t work that way for any of us.
I was just re-reading your post, and I realized that your daughter must be in her mid-twenties now ~ I was thinking she’s a teenager, oops! Anyway, doesn’t really change anything I said already.
” title=”Very Happy” />Kimberly’s exactly right! Spirited session and all!
” title=”Very Happy” />I actually was in that session ~ I think in the end (by the close of the conference), the answer was clear, but the words people used differed widely and some created "hot buttons," so I’ll try to explain completely without hitting any of those.
” title=”Wink” />Here’s the thing with Graves’ Disease ~ we have created these antibodies inside our body. They attack our thyroid and cause us to become hyperthyroid. Once we are hyperthyroid, things start to "sproing" within us, if you get my meaning. Once we have destroyed our thyroid and it is replaced by thyroid hormone replacement pills (using regular blood tests to keep it stable), those antibodies can no longer affect our thyroid hormone levels. However, we still may have pieces within us that either take time to return to normal or may never return quite completely to normal since they went "sproing." We know some patients seem to continue having complaints about things like occasional brain fog, trouble remembering, things like that, but their thyroid hormone levels have been carefully managed and it does not appear to be related to that. Does that mean certain parts of us simply haven’t healed, or is it another part of us that can continue being affected by the antibodies? Don’t know that for an absolute certainty.
Here’s the other thing ~ Graves’ Disease comes also with the potential to have Thyroid Eye Disease and/or Pretibial Myxedema (I’ll use TED and PM from now on). It is not certain whether these are exactly the same antibodies, or just very similar antibodies, but once we have "finished off" our thyroid, it does nothing to predict whether we’ll end up with TED or PM, or how severe it will be if we do get those. They seem to be separate, yet very closely related to Graves’.
So ~ do you still have Graves’ after you have no thyroid? Kinda. You may have lingering issues that remain from the damage that was done while you were hyperthyroid, and that can be different for each one of us. The parts of us that are hit harder are usually parts of us that may have been weaker prior to us having Graves’ disease, and of course that’s very individual. It also can be a function of how LONG you were hyperthyroid, or how long your levels remained unstable, because naturally being hyperthyroid for five years would do more damage than being hyperthyroid for six months.
You will always be on the lookout for TED and PM (trust me, I know), even though neither is an absolute certainty for every Graves’ Disease patient, and either in its worst form is extremely rare. So that has a way of keeping the topic "on top" of your thoughts, if you will.
Your healing process will take a while too ~ at this point, you are still reeling from the initial hyperthyroid onslaught, and you need a LOT of TLC right now just to get one foot in front of the other. I hope you can help your husband understand. We have a unique issue because we can feel so awful, yet we don’t look so bad.
Does this help?
Hi Susan,
Don’t worry ~ it’s not at all uncommon to see very little change at this point, and not everyone does the "dumping" thing (I didn’t). Our body can take up to six weeks just to flush out all the excess thyroid hormone that was in our bloodstream on the day of the RAI, so it’s not likely that you would be feeling very hypo before that point anyway.
RAI isn’t a treatment that will make you feel sick ~ the fluctuations in thyroid hormone may make you feel a bit weird, but we’re all different that way too. For me, RAI was a lot of fuss and then… nothing big happened.
” title=”Very Happy” /> The doctor who gave me the RAI told me that it’d be at least six weeks before I felt any different, and it could be up to six months before we knew whether the treatment dose was successful or not. That’s because the bulk of the damage is done in six weeks, but the RAI can continue to affect your thyroid cells at some level for up to six months.You may want to keep a symptom diary, that’s a helpful tool for the doctor to see whether you’re slipping toward hypo ~ I think we offer one as a bulletin, but overall it allows you keep solid records on your symptoms, their severity, and the frequency.
Once you’re looking at your test results, you’ll get an idea of what to be looking for ~ all test results show a "reference range" for normal, and then they give your result. That way you can see where your level stands against that reference range. In other words, if the lab’s reference range for normal TSH levels is from 0.5-4.0, and your TSH is 0.0000001, then your TSH is very low compared to the normal range. If your TSH is 150, then it’s very high compared to the normal range. That’s how you can see by your results where you fall, and what you should be thinking about in terms of correcting any imbalance. (By the way, TSH is the stimulating hormone, which operates inversely to your thyroid hormone, so if your TSH is low, your thyroid hormone levels are HIGH, and if your TSH is high, your thyroid hormone levels are low.)
I hope that helps!
Just an FYI for everyone ~ I’ve corresponded with capebite by e-mail, but I wanted to post a response so you’d know we didn’t leave her out in the cold.
” title=”Very Happy” />Bottom line, nodules are not common for Graves’ Disease, so it’s likely that there’s something else going on. Blood tests and scans are typically very simple methods for confirming a GD diagnosis ~ the difficult part is getting the doctors to think that it MIGHT be Graves’ Disease. If you’ve run those tests and your levels come back in the normal range, then it’s possible you’re dealing with something else entirely. Hyperthyroidism can be present without having Graves’ Disease, and nodules CAN produce hyperthyroidism, so it’s still something to pursue if you feel that’s what’s going on. Try not to focus entirely on this being THE diagnosis, because it’s possible that you’re dealing with something else. Just keep looking until you figure it out FOR SURE, because you do not have to continue feeling the way you do right now.
One quick caveat ~ if you had thyroid hormone levels done prior to this (when you were WELL), you could compare those results against these to see if, perhaps, the new results fall within the normal ranges, but appear to show a significant change since your HEALTHY levels. That would be something to discuss with the doctor.
Bottom line, if your doctor is unwilling to do research and find out what you’re dealing with, then you need a new doctor. The initial diagnosis of many conditions can be made by several doctors ~ general practice, ob/gyn, internal medicine ~ and they can point you to a specialist once you’ve figured it out. The trick is finding a doctor who is willing to work with you through the process. You can ask friends for recommendations, you can call the doctor’s offices and speak with the front office staff (typically VERY much willing to help you sort out your preferences against the doctors they work for), and you can also make an appointment for a consultation *without* filling out all the forms required by a "new patient." That way you can figure out which doctor you like best, THEN do the "new patient" paperwork just one time.
If you feel you need to see an endocrinologist, I would do that research first and get an appointment ~ without conclusive test results indicating that you are now actively hyperthyroid, it’s not likely they’ll put you on the list as a priority patient, so their next available appointment may be FAR far away. Making that appointment now will give you time in between when you can be doing research on other doctors and perhaps even finding your answer, but at least you’ll have that appointment waiting for you in the event you discover that you DO need an endocrinologist. They are, bar none, the busiest doctors out there.
