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in reply to: Overwhelmed #1067367
I don’t know what to say exactly, just wanted to say I hear ya, girlfriend. It’s quite possible you’re just coming to terms with the reality of it all ~ but hopefully you’re on the way to feeling well more often than not at this point.
You know where to come to get a little encouragement, that’s for sure! I know mine won’t be the only response you see.
” title=”Very Happy” />Smile and your body will think you’re happy. Weird, but true!
” title=”Very Happy” />in reply to: I have graves what do I do please help #1067373The first thing you need to know is that Graves’ Disease symptoms mirror MANY other conditions, so it’s impossible for you to say "A-HA that’s it!" just from symptom identification. Ask your doctor to do a simple bloodtest, the routine thyroid panel (TSH and Free T4 at least), and go from there. If that reflects hyperthyroidism, the doctor will likely want to perform a thyroid scan/uptake to be sure that it’s Graves’ and not a "hot nodule" in the thyroid or something else. There is also a test they can do for Graves’ antibodies, but it can give you a false negative, so the uptake/scan is more conclusive. Once you have THOSE results, you can say "I HAVE IT," but not before.
In the event that you DO have Graves’, start doing your research now. There are three treatment options, all of which can return a Graves’ Disease patient to health, all of which have their own pros and cons. Knowing all of that information is critical, because it is up to you to make the decision. Many doctors will say "I’ve done the research, I know what I’d choose, so here, that’s what we’ll do with you." Nice to know what their opinion is, but it’s more complicated than that. Once you know all of your options, you can have a reasoned discussion with the doctor about what their opinion is, why they feel that way, and you can use that information to assist you in making your decision, but it is always going to be YOUR final decision, so you’re the one that needs to know what’s up.
It’s tough, if you’re hyperthyroid, to feel completely rational, so here’s some VERY basic info that may help IF you are confirmed to be a GD patient.
The three options are these: Anti-thyroid drugs (ATDs), typically methimazole, which are medicines that block the thyroid from making hormone, so they can keep you from being hyperthyroid. It’s a delicate dance, requiring frequent monitoring and attention to schedules and such, and there are some rather nasty potential side effects, which are very rare. The second option is radioiodine (RAI), which is a capsule (or liquid) you take that goes to your thyroid and pretty much destroys it. After treatment you should end up hypothyroid, at which point you start taking thyroid hormone replacement and return your body to euthyroid status ("normal" thyroid hormone levels). The third option is thyroidectomy, surgical removal of the thyroid. Again, you end up on thyroid hormone replacement to bring your body back to normal levels. All can work. We have people here representing each treatment option, all have returned to health.
The one thing that’s good to know up front is that you can TRY the ATDs at first just to bring your thyroid hormone levels down, which will help you to feel better and begin to heal, plus it will help you concentrate and look at everything rationally in order to make a final decision. The other two choices are, obviously, permanent once they’ve been implemented, so the advantage to ATDs is that you can decide against them later, if you like, and you can also feel better during the process, even if you decide ultimately to choose another of the three potential treatments.
I’m glad you came to us before being tested, because many patients in a desperate state will plead "FIX ME" and the doctor will choose a permanent option, rather than messing around with the medications, and then the patient is left regretting the decision the doctor made for them.
in reply to: Pounding heart after RAI…few questions #1067382As your thyroid is affected, episodes can definitely occur unexpectedly. I’m not sure where the 2-week mark came from ~ I’ve seen people here who’ve said it happened like clockwork at that mark, I’ve heard others who have had different experiences. Pretty much everything about Graves’ is one-by-one, we are all very different, but a ballpark 2-week timeframe seems to be the average we see ~ and to clarify, that is only in those for whom it happens. It never happened to me at all, that I noticed. Again, we’re all very different. As long as you have thyroid tissue that survives, it has the potential to be stimulated by antibodies and unexpected "rushes" of hyper moments can result. I think that’s just about as concrete as we can get.
in reply to: how long did your ‘dumping’ last? #1067434Beta blockers can just make you feel better, keep your heart rate down, keep the tremors at bay, and protect the heart from arrhythmias, but asthma patients shouldn’t take them. If you’re feeling horrid, you may want to press your doctor a little harder on taking those ~ you don’t need much in order to keep the symptoms at bay.
As far as methimazole (the "other" ATD), it’s not always a given that a patient will react to both, so again, just because your doctor has seen adverse reactions does not mean you must avoid that. If you’re interested, make sure you get authorization to have your blood tested often for the potentially dangerous (but VERY rare) side effects, and start with a low dose so you can minimize any trouble. Stopping the drug will reverse any of the potentially dangerous side effects.
This is a tough one ~ remember though, if you don’t want to do RAI again but are put in the position of having to do something, surgery is a valid option. As long as you find a good surgeon who does these procedures frequently with low complication rates, it can be almost a routine procedure.
I’m sure it’s scary to see your levels getting so high again, I really hope your next doctor’s appointment shows them on the decline!!
Please do keep us updated, you may be a great deal of help to the next person we see!
in reply to: soooo tired #1067387It’ll be quite some time before you know whether that was enough ~ don’t let it worry you, please, just enjoy your newfound feeling of well being. That’s a wonderful thing, I’m so glad to hear you’ve been out enjoying yourself! I always felt better having a standing order at the lab, so I could have results as soon as I felt "weird," has your doctor got you set up for that?
in reply to: Eye Disease #1069729Oh my goodness ~ I hate to say it, but I think you should be seeing a different ophthalmologist. Not all of them are "up" on the corrective surgeries. Check the website http://www.asoprs.org for a doctor near you ~ these are ophthalmologists with special training in dealing with TED issues.
On another note ~ your endocrinologist may have seen many people in your circumstances, but your endo does not have the expertise necessary to give specific advice as to what surgery you should be having. Find a good ophthalmologist through that URL and start over.
in reply to: how long did your ‘dumping’ last? #1067432This is not common, so we really can’t give a conclusive answer as to what will happen for you. The possibility exists that you did not get enough RAI to destroy your thyroid, so the antibodies are doing what they do, and your remaining thyroid tissue is being stimulated. In any event, it’s not unheard of to take ATDs following RAI if your T3/T4 levels stay in the hyperthyroid range ~ you may not need to take it for long, but it’s far better than remaining hyperthyroid.
in reply to: how long did your ‘dumping’ last? #1067430I’m really not sure whether the "dumping" can occur that quickly, but everyone’s different. It’s also possible that your body is only now reacting to the lack of ATDs. That energetic/tired feeling was pretty common for me when I was hyperthyroid ~ it happens because your body is revving high, but it’s exhausting to be in that state.
As always, if you feel like things are going wildly out of control, go to the doctor….
in reply to: Confused !! Need answers #1067394Not crazy at all! Many symptoms are alike, between hypo and hyper ~ fatigue, anxiety, mood swings, the list goes on (and on and on, unfortunately).
” title=”Wink” />in reply to: Leg Cramps #1067399Cramps can come from hypothyroidism or hyperthyroidism ~ and of course, the classic lack of potassium. Best thing to do is keep track of your thyroid hormone levels, and after that make sure you are hydrated and have adequate potassium. When your thyroid hormone levels are out-of-whack, you can still minimize the cramping with hydration and adequate potassium. As levels normalize and stabilize, the cramping should go away.
in reply to: how long did your ‘dumping’ last? #1067425It’s always best to have yourself checked, or at least talk with an advice nurse on the phone, if you’re concerned. If you can speak with someone from your doctor’s office, they may be able to ease these symptoms just by having you take a little bit of a beta blocker (don’t do this without speaking with a professional, though).
in reply to: Effects of RAI #1067717That’s not a much higher dose really, in the large scope of things. I had 10 (later, my endo said I should’ve had 15 to deal with it properly), then I had to have 22 the second time (2 years later) in order for enough to remain in my thyroid to finish the job. Sorry you’re lonely ~ that was hard for me too! Vegging out and watching TV is something I usually like to do, but when I was forced to, it wasn’t as much fun….. I hope you’re feeling "healed" very soon!
in reply to: DESPERATE!!! (please help me) #1067436I’m sorry you’re feeling so badly! There are a couple of things I can say ~ firstly, we’ve all been there, and I completely understand the feeling of helplessness, and also the feeling that you’re "failing" as a Mom when you’re not at your best. If it helps at all, remember that this is CHEMICAL, it’s not as if you’re "weak" and can’t get past this without help. Sometimes what you need to do is cry it ALL out, because believe it or not, it will, at some point, feel as if you’ve cried "enough," and you can perhaps start to see beyond this awful feeling. If there’s anyone you can count on for support, to help with the kids or give you just an hour’s break, I would get a hold of them and take advantage of that. Any time you can have to "get peaceful," to find a place where you can leave it all behind you, will be worth it. As odd as it sounds, you may be able to search up "help me" right here on the board, and you’ll see many posts from people who were once just as desperate as you are now. Check some of the more recent posts from those same people, and you’ll see them feeling MUCH better, being so grateful that they’ve come through the worst of it. You can count on that too ~ you WILL get better. It takes some time, that’s true. It’s nasty to deal with in the meantime, that’s true. Tell your kids about what’s going on with you in some age-appropriate way ~ I think you’ll be absolutely amazed to find out how THEY can pitch in and help when they know you’re not feeling very well. Some things you can ask them to do, and some things they’ll just do spontaneously, and it’ll touch your heart. I am still surrounded by the pictures my kids made for me with "get well soon" messages. Try to remember it’ll get better ~ even when you’re feeling your very worst, KNOW it’ll get better. I think that helps. I hope this has given you some help.
in reply to: Effects of RAI #1067714Thanks for the update, this is much appreciated! I wish you a smooth journey in your healing!
” title=”Very Happy” />in reply to: Hyperthyroid again #1067454Sounds like your doctor’s right on track ~ I honestly didn’t know Synthroid had the potential to cause alopecia (sp?), that’s good to know. We do get some hair loss when our levels are fluctuating (even if they’re moving in the right direction, how annoying is that?), but bald spots are truly out of the norm, so if this solves that problem for you, that’s PERFECT.
The "negative effects" we refer to are really just basically a readjustment period ~ in other words, if you go from taking 0.5 Synthroid to 0.5 Levoxyl, you may not end up at the same thyroid hormone level (ironic, I know), so then you would have a period of time trying to dial in the RIGHT number with the new replacement brand. Since you’re still dialing in your FIRST "right" number, it’s really not that much different for you, but once you find a good dose and are stabilized, switching brands could be an issue. It could trigger the minimal hair loss and other symptoms of fluctuating levels.
I agree, you should tell the doctor that you were pregnant for a short period of time ~ that could have confused the issue briefly. Usually the antibodies give you a break during pregnancy, but they can come back in full force afterward, so if you’ve got any remaining thyroid tissue, it could’ve elevated hormone production in response. This is one of those things the doctor would appreciate knowing, because it puts all the puzzle pieces together on what’s going on and why.
I’m so glad to hear that, even with these symptoms, you are feeling better than you were at your worst ~ that’s a good sign! Keep on keepin’ on, you’ll get there!
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