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This IS truly entertaining, YIKES! The frightening part is, as you say, “all those people lined up for acupuncture,” there are people (a rather high percentage!) who are quick to nod their head in agreement, take notes and change EVERYTHING based on what these people tell them. shudder 😮 (side note, omg I just saw that we have a “yikes” emoticon lol)
in reply to: Six years to get an answer #1178881What a positive message, after all of your troubles! I think you have a bright future ahead of you, if you’re able to be grateful right now.
Welcome! Sounds like you know a lot about what’s going on with you, and what your options are, but if you have any questions for us, we’re here!in reply to: Old to graves, but scared from recent flare #1178692Hi Candi28,
It sounds like you have some conflicting advice — it can be difficult when symptoms flare, very frustrating, but it can also come with the territory of autoimmune diseases in general. Whenever we are ill with “regular” illnesses, our immune system is stimulated, which has the effect of stimulating the antibodies associated with our autoimmune symptoms. Managing that fluctuation is truly one of the most complicated parts of having Graves’, so it’s a good thing you’re seeking assistance, but try to remember that changes in dose can take a little while to show up accurately. It’s best to go with one option and let your body fully react to it before deciding to move on to the next thing, just for your own stability. I know it’s difficult, and it feels like we’re being complacent, but in truth you’re chasing a moving target at best, so if we make changes too quickly, we can jump even further into the wrong direction without realizing it — which obviously ends up making it take longer to get back to “normal.”
The skin rash may or may not indicate an allergy to methimazole — it’d be a good idea to see a dermatologist about that, because they could help determine what’s going on.
Let us know how it all plays out for you, I hope you’re feeling better soon!
in reply to: Chances of developping TED? #1174611Hi Shakira,
The majority of people who have TED symptoms requiring treatment by an ophthalmologist experience it within 18 months of their Graves’ diagnosis, but TED is fairly capricious — it happens to some people before they have Graves’, some people while they have Graves’, some people long after they’ve been successfully treated for Graves’ (our own snelsen from Seattle was stabilized after Graves’ treatment for decades before TED occurred with her). I think the variation in percentages has to do with where you draw the line. I’ve heard that Graves’ patients, when examined post-mortem, ALL have some evidence of TED in the tissues of their eyes. Only somewhere around 15% (someone correct me if I’m wrong, please?) will have symptoms requiring interventions and surgical corrections, and a small percentage of THOSE will have the worst symptoms.
As for whether every Graves’ patient needs an ophthalmologist, well, that’s the topic of some debate, but here are the basic points. Some suggest that it’s wise to have a baseline appointment with an ophthalmologist in order that the doctor get a good idea of your “before” state, in other words, where your eyes sit in your face normally, so that they stand a better chance of helping you return to that state after TED. The argument against it is that odds are you may never need to go back, the doctor may stop practicing before you need them, and perhaps a good picture of your “normal” face would be enough, if it comes to that.
TED is an autoimmune disease, and symptoms can be exaggerated by anxiety and stress, so some of the best advice is not to worry too much about it. If it happens to you, it’s a tough road, but at least you can be comforted by knowing that there are dedicated professionals learning more and more about TED every day, and surgical corrections are better all the time.
in reply to: New member of the TED Club #1174594The radiation treatment for TED is only effective in the early phases of TED, so no, this wouldn’t be something to save for later. TED has a well-defined disease curve, though the length of the overall process can vary. There is an initial phase when the symptoms and bulging can change frequently, followed by a period of relative stability, followed by a period of gradual improvement, and finally complete stability. The early part of the curve is very steep, the end part is shallower. Directed radiation to the eye is typically only effective in that first phase, and it works mostly to minimize bulging. Oral steroids can be another option to attain the same result during that period. Oral steroids and directed radiation carry some risks, so sometimes doctors will use a little of each to minimize the risk of both. Last I heard, patients who respond well to one of these two will likely also respond well to the other, but if the symptoms do NOT respond to one of these, they are not likely to respond to the other either.
It’s difficult to say how a patient’s TED will progress, so there’s some art to this, but there is a school of thought that suggests using one or both of these treatments (steroids and/or directed radiation) can keep the outcome from being worse by keeping the changes to a minimum and waiting out the early phase.
Once a patient gets to the very end of the disease curve, what they call the “cold phase” (diagnosed in hindsight), then surgical interventions can be pursued. If the early treatments work well to keep the eyes from changing a lot, then hopefully it either eliminates the need for surgical corrections, or minimizes the procedures that will be needed to correct the changes.
I hope this helps!
Good luck to you, this can be a tough road — keep in mind that people who suffer the very worst symptoms of TED are in a very tiny minority of patients overall, so the odds are on your side. If it get really bad, though, you’ve got a great community here of people who completely understand what you’re going through, and that will help.
in reply to: Diagnosed with Graves 4 days ago. #1174588We have a posted notice at the top of the BB with a good overview of your treatment options, check that out and you’ll be well on your way to figuring this out. The fact is, though, that there is a medication option most people can use until they make the ultimate decision, so if you’re being forced to make the decision and have the treatment within six weeks, I would find out whether you’re a candidate to use anti-thyroid drugs to bring your levels into the normal range and help you begin to heal, as well as be able to think clearly. That way you can take more time, and hopefully wait until you feel satisfied that you’re happy with one or the other choice. If meds work well for you, you may be able to use them to attempt remission, or even as a maintenance option long term. Some people don’t react well to meds, so if that happens to you, then you may be back on a short fuse to make a decision, so you’ll do well to gather and absorb as much information as possible right away.
I don’t have any last minute advice, but joined the conversation late and wanted to say congratulations for getting the outcome you wanted, and I’m glad this forum was able to provide the support you needed to get there! Good luck tomorrow — the one thing I do know is that patients who have chosen their treatment with full knowledge of all the options have been the happiest after their treatment. Not that it’s easy, but an informed, empowered patient is truly the best possible kind to be, always. Continuing along the path of treatment and healing in that spirit will serve you well. Well done! 😎
in reply to: From hyper to hypo so quickly? #1174561Patients can react quickly to methimazole, and initial doses are something of a guess to start with, then you work out your best dose with your doctor — the usual protocol is to begin on a high enough dose to ensure that the hyperthyroidism stops, then adjust in smaller increments until you find the right dose to put you, and keep you, at normal levels. It’s possible to end up at a fairly small dose, but it’s so important to stop the hyperthyroidism that sometimes you drop into hypo range fairly quickly from the initial dose. Sounds like the doctor is doing exactly the right thing, and moving up your appointment is a real bonus point.
in reply to: missed levoxyl dose #1174526I think it depends on how far away you are from the missed dose when you realize you’ve missed it — the cumulative amount of replacement hormone is important to have in order to know that your blood test results are an accurate reflection of your body’s reaction to the dose you’re taking, but I don’t believe it’s wise to take two doses very close together, so perhaps there’s a “line” past which you just skip it.
Thyroid hormone just isn’t an instantly active thing, so it’s not like you go SUPER hyper if you take more than one, and you don’t go SUPER hypo if you forget one day, but if you keep forgetting here and there, you won’t have as much built up in your bloodstream as you need.
If you have a really hard time remembering and you end up skipping doses often, you should let your doctor know about that when you have your labs done.
in reply to: Day 2 RAI Treatment #1174215A low iodine diet is intended to ensure that the thyroid takes up as much of the RAI as possible when you take the dose. Any small amount of iodine you may have ingested won’t ruin the effect of having used a low iodine diet in preparation.
in reply to: missed levoxyl dose #1174519You’re right, levoxyl is long lasting, and it likely won’t make a big difference as long as you make up the dose and put yourself back on track. It’s not like a pain pill that is immediately effective and then “runs out,” it is built up in the bloodstream and then used as our body needs it. Never worry about asking a question, that’s why we’re here!
in reply to: Struggling to stay patient and optimistic #1174404Hi Barb,
It sounds like you’re doing your very best to handle a difficult situation, I’m sorry it’s stretched on so long! I’m glad you’re reaching out, it can help in many ways.
I can offer at least one hint for your day-to-day — consider tinted glasses for use while you’re in front of people. Find a tint as dark as possible for indoor lighting. That can help to hide the fact that your eyes are different, so reduces some of the anxiety.
The wait for treatment with TED does feel so wrong, I know, but the truth is that surgical interventions taken during the hot phase can actually make things *worse* so that you would find yourself with more swelling and no further options for correction. That’s an enormous risk, and it would mean perpetual problems. At this point, I know you’ve been waiting a very long time, but once you are confirmed to be in the cold phase, you can be confident that surgeries will accomplish what they set out to accomplish, and that’s important.
If you’re in the SF Bay Area, I’m pretty sure I know what your HMO is — I am covered by the same HMO, and I actually feel like I DO have a “team” of professionals, because our information is available to all of them at once. I think what you’re looking for is a more holistic approach, which I think they’re developing, but it’s immature.
I do think you’d be wise to at least check in with Shiley, everyone I’ve spoken with from that facility, during the 8 years or so I’ve been attending conferences, has been truly immersed in this topic, they know a lot, they’re fascinated and interested in finding the right answers for each patient, and they’re extremely empathetic. They’ve done research on the emotional aspects of TED, and found that the emotional hit can be worse than having a cancer diagnosis, gauged subjectively by the patients themselves, so they truly understand and care about what the patient is going through.
We’ve also met people from Kellogg, and they are equally excellent — much further to travel for you, so that’s a consideration, of course. You may want to visit both, if you have the means, because the end result is SO important, you should feel that you researched and chose the very best.
It’s POSSIBLE that you may be able to take advantage of some level of coverage, even in the event you go elsewhere, so you may want to start asking those questions now.
I wouldn’t give up on your healthcare group, though — waiting is actually the best route to be taking, and the frustration that comes with it is no fun, but it doesn’t mean you’re not being treated correctly.
Hang in there!
in reply to: Severe memory issues #1174384Well, all I can say is WOW! You are dealing with a LOT. Has all of this been within the last year? I can only hope not. If so, it’d be a miracle if you felt “bounced back” and perfect right now, there’s so much in you that’s trying to heal.
Dealing with an autoimmune disease is a completely different experience than dealing with anything we’ve been used to in the past, and it does include emotional aspects such as depression, because we’re now struggling with the fact that we’ve got a persistent condition we must accept and consider nearly every day.
The memory issues do seem to continue, somewhat, for almost everyone I speak with, unfortunately. Still, the better we feel, the better it gets — for all the things that may linger. Everyone’s different, and hyperthyroidism is incredibly damaging. After you get back to normal, your body BEGINS to heal, because it can finally put some attention on the “trouble spots.” All of this takes far longer than anyone wants, but we must see clearly that this is where we are.
I think the best possible advice we can give is just to keep putting one foot in front of the other, keep an eye on your own thyroid hormone levels, be your own best advocate, and when you find a good thyroid hormone level and remain there for some period of time (it CAN be months, I won’t lie to you), you can get to a really good place.
A symptom diary can be your savior, when you’re talking with the doctor. They LOVE empirical data. Make a chart each day with your symptoms and their severity, then correlate with labs as you get those done. Tiny adjustments can make a big difference over time — remember that it’s not safe to adjust doses by a great deal at once, so it can take a lot of time to get through this process, but you’ll get there, and it’s worth it. Better than being unwell every day.
As for school, well, Kimberly’s advice is VERY good. If you could get some accommodations, you’d have a better shot, and your grades would more closely represent your actual abilities. I know it feels like “caving in” to your issues, but it’s not, it’s being fair to yourself.
Remember overall that you are recovering right now. You need downtime, you need time for YOU, and that’s going to be an important element to your overall emotional state as well, so make it a priority. Top on your list of things to do should be things that feed your soul and satisfy you to your core. Bottom on your list (or maybe even completely OFF your list) should be things that suck your strength and energy and give you no payback whatsoever.
I hope this helps! I can’t say I’ve been exactly where you are, but I’ve been through the “search for my thyroid hormone levels,” and I can tell you that you WILL get past this, it’s just a matter of time.
in reply to: Dental Work #1174372I had RAI (many, many years ago), and I still find that I’m sensitive to dental anesthetic that includes epinephrine — my heart races and I get lightheaded, it’s very uncomfortable.
The dentist CAN use anesthetic without epinephrine — the downside is that it doesn’t take effect as quickly, also doesn’t last as long, so you may have to sit and wait a moment longer for it to protect you, and you may need a “booster” shot if you’re having a long procedure done. I haven’t needed the booster, except when I had some oral surgery done (“pocket reduction”). MOST people who’ve had their thyroid removed through surgery or RAI are no longer affected by the epinephrine, but I’m one who is affected by it, even in the absence of my thyroid. You can tell if it happens to you — not sure how you’d know whether you’re “one of the few” other than having a rather bad experience (as I did), unfortunately.
in reply to: UPPER EYELID SURGERY COMPLICATIONS #1174375Dear, sweet Shirley!
I am SO sorry to hear that you’re having trouble this time as well!! Not much I can do to help, but I wanted to send e-hugs {{{{hugs}}}} and wishes for improvement!!
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