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in reply to: 1st Appt – What should I expect #1067442
First thing you should know is that endos have extremely tight schedules ~ any questions you have should be written down so you won’t forget to ask them. In a hyperthyroid state, you might even want to consider having someone join you for the appointment ~ a friend or family member can be very helpful, just as another set of ears so you can check your recollection. You might even want to take a recorder of some kind ~ some doctors don’t like that, others welcome the opportunity to be sure that you can refer to their comments again later.
We have found that many endocrinologists tend to have thought through the options and decided there’s one they prefer, so they will try to tell you that it’s the "right choice," before allowing you the opportunity to make that choice. It’s fine that they have an opinion, but it is YOUR choice. Learn all you can about your three options (ATDs ~ methimazole, in most cases, or RAI, or surgery) prior to your appointment. If you haven’t fully decided which you prefer, ask the doctor any questions that have come up for you about one or another of them. You can take ATDs for a while, just to get your levels in check, without being forced to make any "final" decision, and sometimes it helps to get your brain back in operating condition so you really feel like you CAN make the decision for the long term. In addition, it helps to find out how you feel and how your body reacts to ATDs.
There are pros and cons to each of the potential treatment choices, and so it depends on your own personal circumstances which one looks best to you. That’s why we recommend making the choice yourself.
We’re glad you found us! Wander about, read other posts, search up topics of interest ~ there’s a lot here to see!
in reply to: Hyperthyroid again #1067449Yikes, what a pain for you!! I do wonder at switching your thyroid hormone replacement BRAND, we’ve always been told that it can generate some unexpected results and should be avoided. The fact is that there are a couple of brands that do not have certain dose levels, so sometimes that’s the rationale behind it ~ at this point, you’re so early on in the process that it’s probably no harm, no foul, but once you’ve reached your optimum dose (and you will, trust me!), you should resist any other attempts to change the brand of replacement.
As far as your medication being picked up by someone else ~ WHAT??? That’s nuts. Unfortunately though, there are crazy people in the world who try and use thyroid hormone replacement as weight loss pills, so it’s not unheard of that they are "black market" drugs, just so you know. I hope you get that straightened out quickly, and I hope you’re feeling better SOON!
in reply to: Graves, RAI, and pregnancy…Help! #1067459The best thing to do is consult with a pediatric endocrinologist and a high-risk ob/gyn, and your own endocrinologist, answer all of their questions, and hopefully you can come up with some good information to consider. I’m sure they’ll all tell you what they know, and what they’ve seen, and what they suppose, and then the decision is really up to you after that. It’s like anything else, when they’re looking at a very rare circumstance, there isn’t going to be a lot of hard data to go on, but you get the best info possible and then make your own decision on how to proceed.
In the meantime, truly, try not to worry too much. This is a delicate time for a pregnancy, and you want to be at your best too.
in reply to: Frustrated and Confused #1067461If your thyroid hormone levels test outside the normal range, that is conclusive. If you feel that you may have slipped into being hypothyroid, then you can ask to have another blood test done in 4 to 6 weeks and see what it says. If you still test hyperthyroid, that would indicate that your body has simply changed the way it responds to hyperthyroidism. One of the hardest things about Graves’ is that we have patients who are raging hyperthyroid who lose weight, and others who gain weight. It’s odd to hear that you’ve changed from one type to another, but it’s not unheard of.
Having surgery is absolutely a valid option for treatment, and will return you to health. It’s true that some people experience increased symptoms of Thyroid Eye Disease (or Graves’ Ophthalmopathy ~ it goes by different names in different circles) after RAI, so if that is a concern for you, surgery is a perfectly good choice. Just so you know, typically there is a very small percentage of RAI patients who experience worsening of TED symptoms, but if you’re in that percentage, it wouldn’t make much difference to hear that you are in the minority. If you already have rather significant symptoms of TED, then it would absolutely be prudent to choose another treatment. It IS your choice. We have people here who have chosen all three treatments, and people in each camp are very happy with their results. In my experience, those who have made an informed choice are the most likely to be pleased when all is said and done, so you’re doing the right thing. Whatever you need to do to make sure you are having a necessary, therapeutic treatment, do it so you can be at peace with the decision.
in reply to: Questions about ups and downs #1067463We really do understand ~ it’s a VERY tough time. There’s a chance that you are simply a bad candidate for using ATDs (anti-thyroid drugs, the methimazole), because these swings from hyper to hypo are nearly as debilitating as a chronic hyper or hypothyroid level. I know that’s a hard thing to decide, because your only other choices are RAI or surgery. Still, if one of those treatments can lead you to health, it’s worth it.
Stress elevates the actions of the immune system, and with Graves’ Disease, we have antibodies that are causing us harm, so stress typically triggers escalating symptoms if we still have our thyroid. There are a few things you can do to minimize the effect stress has on you, like eating right, getting your rest, taking good care of yourself by limiting your activities to only what you can tolerate, things like that.
It’s a little alarming that you’re on several anti-depressants. I thought a person was meant to find the one that works, not keep adding more to the mix, but I have very little experience with anti-depressants, so it’s not something I can speak about. If your doctor is willing, I think the two of you should have a frank discussion about what’s been going on and what your options are going forward. You need to have a very close eye on your levels in order to find a dose that will keep you normal. You need to return to health. The continuing stress of disease can just be a downward spiral, and you need to level off and start spiraling back up to normal.
You CAN do it, I know you will. It may involve another decision of treatment, or it may involve much more testing and changes in your diet and activities, but one way or another I know you can return to yourself.
in reply to: Graves, RAI, and pregnancy…Help! #1067457Wow ~ first of all, please try not to worry. The recommendations for a six-month wait are typically overcautious. We have actually had people come here under your same circumstances, and all has worked out just fine. Has anyone figured out when you may have become pregnant? The real question is not about what your RAI dose would be doing to the fetus now, because if you had it in June, your radiation levels should have completely dropped to normal by now. The question is whether the egg that has been fertilized was affected when you had the RAI dose. The only way the egg can be affected is while it is maturing, so there is a fixed number of eggs that would have been in that cycle at the time you were given your RAI dose. In addition to that, the only way RAI can affect the egg is through tangential contact, since most of the excess RAI (the portion NOT taken up into your thyroid) is flushed out in your urine, and your bladder is near the ovaries. If you followed the typical instructions of drinking a lot of water and urinating often, that risk is extremely small. It’s all a pretty longshot problem, but of course doctors are in the business of keeping you MORE than safe, so they recommend six cycles pass before you attempt a pregnancy.
The best thing for you to do right now is to round up your medical professionals, including your ob/gyn (and perhaps a high-risk ob/gyn) so they can all weigh in with their opinions and facts. Each one has a certain area of expertise, and when you put them all together, you’ll get the best possible answer.
Our need for thyroid hormone replacement can change for MANY reasons, several of which you mention ~ changes in hormonal status (entering menopause), changes in activity level, changes in age, all these things can change our body’s need for thyroid hormone. In addition to that, our body processes the replacement a little differently as we age, so that can change our requirements too, or at least change how much we must take in order to end up at a normal level. A normal body would handle these adjustments quickly and easily through the T4/TSH feedback loop, but since we are on replacement, we must manage it ourselves with regular monitoring. It actually might be more of an anomaly that you didn’t ned a change in your hormone replacement for 14 years!
in reply to: Still experiencing symptoms…but labs are normal? #1067798There are several kinds of thyroid hormone replacement, but they’re all close to Synthroid in terms of efficacy ~ the truth is that the problem is probably NOT the Synthroid, it’s how MUCH of the Synthroid you’re taking. If your endo is no longer willing to see you in order to figure out the correct dose to make you feel right, your general practitioner or internal medicine doctor should be able to walk you through it. Most endos see their role as taking care of the hyperthyroidism, and once that’s done, they toss you back to your "regular" doctor to work with your thyroid hormone replacement dose.
Every time we change a dose of thyroid hormone replacement, it takes from 4 to 6 weeks for our body to completely equilibrate (adjust) to the new dose, and at first, we CAN feel up and down for a couple of weeks, but those effects are transient, and blood levels taken 4 to 6 weeks after beginning the new dose will show how your body is really reacting to the dose.
It can help, as you go through this process, to keep a daily symptom diary. That way your doctor can see which side of normal you are likely falling on (whether you are slightly higher than your own normal, or slightly lower), and they’ll know better which direction to adjust your dose.
It’s never helpful for a doctor to say to you "that’s impossible," it’d be much nicer if they could take a second to fully explain themselves. I wish more did. But luckily, you found us here, and we can help you through it. There is NO "natural" thyroid hormone replacement. There are different brands, and sometimes people do have issues with the fillers in the pills, so sometimes it makes sense to switch, but the majority of people are only looking at issues with finding the right dose. If you change brands, they are not necessarily equivalent in the bloodstream (due to the fillers and such), so it starts an entirely new process of figuring out the dose. It’s easier to start from your current point, get a symptom diary and a doctor who will help (general practitioners or internal med doctors definitely have the schooling required to help you through this part of it), and go for it! It takes a while ~ as I said, 4-6 weeks after a new dose in order to test to figure out where you stand, so even just a few dose changes pushes you out several months ~ but it is VERY, VERY worth it.
Wishing you the very best, and hoping for your improved health!
in reply to: post thyroidectomy hand cramps #1067596Yes, there’s definitely hope! I know two months seems like a long time, but it’s really not, in terms of normalizing thyroid hormone levels. You WILL get there, I promise.
in reply to: Leg cramps?? #1067499Joint pain can be due to either, though I think that’s listed as a side effect of PTU. Cramping can be from hypothyroid episodes, OR lack of potassium. Definitely speak with your doctor if either of these turn into a chronic problem.
in reply to: Am I headed in the right direction? #1067510Those reactions have more to do with the period of time while your body equilibrates to the new dose ~ for a little while, you tend to feel up & down kind of randomly, until the levels evens out in your bloodstream. That usually takes a week or two.
The "emergency response" I refer to has to do with large changes in thyroid hormone levels (such as when we initially go hyperthyroid, or when our levels drop rapidly after RAI or thyroidectomy), and those symptoms are things like hair falling out and brittle nails. That’s caused by the body’s natural protection, which interprets a rapid change in thyroid hormone as a potentially dangerous anomaly, and therefore restricts resources being used by "non-essential" body functions, like growing hair and nails. As levels stabilize and normalize, the reaction stops, but when you’re just starting to feel well through treatment, it’s no time to trigger another period of these kinds of symptoms in order to increase your thyroid hormone replacement.
I hope that helps!
in reply to: Am I headed in the right direction? #1067508Stable really means both T4 and TSH should be in range ~ the fact is that your body doesn’t "recognize" that it’s well until the TSH has caught up with the T4. Try to remember that even if you haven’t been "really healing," you’ve still been in a state of "less harm," if you see what I mean. You’ll definitely feel SOME amount better as you approach your stable levels, but the REAL healing will start in earnest when you have reached stability. Each step closer is worth the effort to get there, believe me, whatever that means you must endure. Changing doses has to be done in small amounts (large shifts trigger "emergency responses" in the body), so it does take time, and each change is a little weird, I’ll grant you that ~ but keep the goal in mind. YOUR normal point. Every minute, of every day. It’s worth it.
in reply to: Congratulations Nancy and Ski #1067518Thanks everyone! That really feeds my soul.
” title=”Very Happy” />in reply to: Looking for Advice… #1067526If you want to test for Graves’ Disease, it would seem reasonable to ask your doctor to have that test run ~ the most difficult part of having Graves’ is that its symptoms mimic other conditions, which of course also means that when we think we have Graves’, we may not…. Fortunately, finding out whether you are hyperthyroid is a relatively simple process, a very routine test, and rather conclusive in its results. If your doctor tests your TSH only (this is the hormone your pituitary secretes in order to give "instructions" to your thyroid), then you may see a normal test initially, if indeed you have only recently begun to have escalating thyroid hormone levels ~ the TSH can lag by a few weeks. Waiting a month or two and testing again would be more conclusive, and if your levels still read normal, then probably you should look elsewhere for the cause of your symptoms. It’s a good thing to have information on Graves’, no matter what, because you do have the family history, and your vigilance could keep you from being hyperthyroid for an extended period of time, if it DOES happen to you in the future.
As far as the swelling in your neck and the fact that it has increased in size while you were fighting off an infection, IF you are a person with Graves’ Disease, then the antibodies can be stimulated whenever the immune system is stimulated, such as a period of fighting off infection. The antibodies mimic TSH and they trick the thyroid into overproducing thyroid hormone, which can also give a patient a goiter (swelling of the thyroid). That’s one possibility for the swelling. There are many more possibilities that I don’t know anything about, so it’s always best to go over these things with your doctor.
Make sure you arrive with your list of questions in hand, and you may even want to bring a family member or friend ~ or a tape recorder or other digital recording device. I’m not kidding ~ I know it sounds extreme, but if what you are going through is hyperthyroidism, it’s hard enough to keep your own questions in your head. You may well miss some information while concentrating on your next question.
Let us know how the testing goes! And try to think of it this way ~ if it’s Graves’, at least you know what it is, you know something about your options, and you’ve found us, so we can guide you through your treatment and recovery. It’s a BIG improvement knowing what you’re dealing with, and Graves’ is very treatable.
in reply to: I can focus again!!! #1067529Congratulations! This was one of my favorite moments too!
” title=”Very Happy” /> You’re on the road, closer to real health every minute. 
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