[Ski]

in reply to: Success stories with RadioIodine treatment? #1169597

Hi HonestBabe,

I’ve been away from the BB for a couple of months, so just catching up. I am absolutely an RAI success story — had RAI, feeling better now. I went through a period of time where my levels dropped out of the hyperthyroid range into the hypothyroid range, I started taking replacement hormone, I’ve had a good doctor navigate my dose to find a good one for me, and I feel very close to the normal I was before, with the caveat that I became older during treatment, so things change simply because of that.

As for why you have not received many responses, I would point out that our issues following RAI would be very different from yours. Your nodule is meant to be destroyed by the RAI and you are meant to return to normal thyroid function afterward.

The goal with our RAI dose is different — we are meant to destroy the entire thyroid and be rendered hypothyroid, then we take thyroid hormone replacement, adjusting doses until we find the one that works best for us. We may have commonality in the fact that we are adjusting from a hyperthyroid state, but again, your body ought to "hold" at normal, where ours goes to "no function," then we build it back up.

I know lots of people who have had success with RAI treatment and are happy with the result. Other than facilitators, not many of them come back to visit the BB, because they are happy with the result and they’ve moved on.

[Ski]

in reply to: In a rush? #1169553

Hi rushed,

I’ve been away from the BB for a while, so I only just caught up with your story — you’ve done a great job so far of navigating your circumstances, and being very realistic about all the different elements you’re dealing with. I hope you’re starting to feel much better. It’s always a slow process, no matter which treatment choice we make, but being on the road, having begun, is so important, physically and emotionally.

I wanted to weigh in on your TED questions — the way TED presents typically has no relationship with your actual vision, such as your nearsightedness. It occurs differently for everyone, but can involve symptoms such as bulging eyes, double vision, difficulty/pain trying to rotate the eyes into different positions, redness, swelling in the tissues around the eyes, feelings of pressure behind the eyes, and retracting eyelids (meaning, you look at if your eyes are open wide when they’re relaxed). The symptoms can be isolated to just one eye, or they can be in both eyes, but presenting differently in each eye. You would be likely to notice, but sometimes things happen very slowly, so seeing an ophthalmologist now can be useful for a few reasons. First, they can examine your eyes and tell you if they see anything odd. Second, they can tell you what to look for that should trigger a return visit. Third, you will have built a relationship and the doctor will know what your eyes looked like "before," which can go a long way toward correcting things in the event you DO end up with big changes due to TED in the future.

TED doesn’t always present at the same time as Graves’ thyroid disease, so it’s good to know what to look for in any event. Remember, please, that patients with the very worst symptoms of TED are in the minority (very small minority), though patients with some level of changes that can be related to TED are pretty common, so you should know that identifying any changes does not imply that you will be faced with the very worst issues. If you look up TED images online, they can be very frightening, and you should know that it’s not by any means certain that you’ll be dealing with that type of situation. The best thing to know is that IF you have to deal with the severe symptoms of TED at some point, there are really good treatments and corrective surgeries available that can return your appearance and vision to near-perfect after all is said and done. The time in between is tough, absolutely, but the final result will be okay.

TED is an autoimmune disease just like Graves’ Disease is an autoimmune disease (research continues to discover whether they are one and the same autoimmune disease — at present it appears they are related, but not the exact same disease). That means you have antibodies in your body that do harm, instead of performing a protective service, like the rest of the "normal" antibodies. With TED, the antibodies attack either the fat or muscle tissue behind the eyes, and causes them to swell and stiffen. Your immune system is stimulated when you react to stressful situations, so learning to stay calm throughout tough times can help to minimize TED symptoms, if you get them. (But if you find your symptoms continuing to escalate in the face of your Zen-ism, please do not blame yourself — sometimes it just happens. The last thing we need is a reason to kick ourselves!)

I do hope this helps!! I hope you’re feeling much better now too.

[Ski]

in reply to: Grave’s Part II. Will it never end???? #1169446

Hi Lauren,

You’ve got great information so far — I just wanted to point out that an optometrist has virtually no education on Thyroid Eye Disease, its treatment, and patient care. In the world of doctors who pay attention to eye issues, it’s almost apples and oranges, when you compare optometrists to ophthalmologists. Optometrists handle vision issues and glasses. Ophthalmologists deal with aberrations in the structure of the eye and diseases that occur in the eyes. You really must see an ophthalmologist, and preferably a neuro-ophthalmologist, in order to get the right care for TED.

[Ski]

in reply to: Hypo 6 months and counting… #1169473

Hi Nicholas,

I’m just catching up on the BB, sorry this response is so late! The first thing I wanted to mention to you is that adding T3 to your replacement hormone CAN be helpful, but it is typically not pursued until your doctor is absolutely certain that it is not possible to create normal, stable levels with T4 alone. I’ve known several individuals personally who have moved toward supplemental T3, have felt better briefly, and have ultimately stopped the T3 supplementation due to the return of hyper symptoms.

Another thing you should know is that anytime you change your T4 dose, you will have a period of "seesaw" feelings, at least a couple of weeks where you feel hyper, then hypo, (either day to day or even back & forth within a day) but ultimately your body will adjust and you will level out so that you can really tell what effect the dose is having on your body. It’s very difficult to make dosing decisions on thyroid hormone replacement without waiting at least six weeks between adjustments, because the pituitary feedback loop takes a certain amount of time to be fully accurate and measurable.

How have your levels been since your post, and how are you feeling now?

[Ski]

in reply to: Newbie #1061428

Welcome! Tired, we understand, and also sore knees ~ these resolve over time, but be patient, and be kind to yourself. Know this will take a while, but you WILL get well.

[Ski]

in reply to: Pediatric Graves – My 6 year old son #1061434

Hello and welcome,

Graves’ is rare in small children, but we have seen them (and their parents) at our conferences. There are some ways children have an easier time with Graves’, and there are some ways it is more complicated, but I hope you’ll get some input from the parents who’ve dealt with it themselves before long. In the meantime, I can offer a little bit of information I’ve learned.

Eye symptoms: children typically suffer the least with eye disease, and usually affected more in the fatty tissue behind the eyes than the muscle tissue, so it tends to resolve pretty completely by the end. It can take a while to get through the process of TED symptoms (it has a pretty well-defined disease curve that varies in length of time, but it "ends"). In the meantime, your son may have some emotional upset related to his eyes being different, if they get very bad. It is NOT common for kids to get the worst eye symptoms, but any changes can be tough for a 6-year-old, so you may give extra attention to that, if it comes up. See a counselor, as well as doing things like getting him cool sunglasses to minimize the feeling that he looks different. It’s a good idea to begin a relationship with an ophthalmologist or neuro-ophthalmologist who has treated Thyroid Eye Disease patients before, so they can keep track and give you an idea of the options. It can be complicated, but is very individual in the way it affects patients, everyone has a different story to tell.

Adult patients have three choices for treatment: anti-thyroid drugs (ATDs) [there are two, PTU and methimazole], radioiodine ablation (RAI), or thyroidectomy (TT). For the most part, doctors use ATDs by default for kids, because the other two are permanent solutions, and young patients have hope for periods of remission before needing to consider those permanent solutions. PTU has been contraindicated for children because there have been cases of liver failure, so methimazole is typically the choice of treatment for children. You should know it also carries the risk of liver damage (though at a lower risk than PTU), and rarely there can occur a dangerous lowering of the white blood cell count, but these typically appear in the first weeks of treatment, so the doctor may check for them initially, and after some period of time it’s far less likely, so you can relax a bit. Also the dose will likely be lower as treatment progresses, which reduces the risk as well. It needs to be taken pretty regularly in order to be effective, which can be tough if your son has trouble with pills. There is a process through which they figure out the right long-term dose for him, which will start with higher doses in order to bring the thyroid levels down out of the hyperthyroid range, and lower doses afterward to simply maintain normal thyroid hormone levels. The signal to the doctors to lower the dose is when the patients goes hyPOthyroid, and that’s not very comfortable. This will need to be monitored and adjusted through blood tests, so that may be tough as well. Try to figure out some way to minimize the trauma with blood draws, because it’s going to be a regular part of your life for a little while. In the longterm, it will never be needed as frequently as it is during the beginning of the treatment process, but right away you’ll likely be visiting the lab quite a bit.

Once you find a good dose for him that keeps his levels stable, you can start to see some real healing and improvement. That may take a while, but every day should be a little better.

Kids have issues with concentration, acting out, and muscle weakness while they are hyperthyroid, so it’d be a good idea to get a plan in place with his school in the fall. By then you may have reached some stability for him, but there can still be spikes of hyperthyroidism during periods of extreme stress or illness, so everyone should have a conversation about what to do to completely support your son through his school day. I think you’ll have a better idea of what that will mean for him once the school year starts, but do make sure that the teacher and the administration understand clearly what’s going on with him and the status of his treatment.

There is one thing that goes along with Graves’ that you will likely have the hardest time dealing with ~ we call it "Graves’ rage," and it comes upon us rather randomly throughout the hyperthyroid state. I remember going utterly apoplectic over things that should not have affected me that way. Sometimes even WHILE it was happening I knew it was ridiculous, but I felt powerless over it. In a 6-year-old, it’s hard to know when it’s that or when they’re just having a tantrum, so you will need to figure out some way to handle it that doesn’t necessarily presume that your child is being willful or unreasonable. It’s hard for him too, I know that.

I hope this helps! Feel free to ask any specific questions that come up during the process, or just come here to vent. We know how it is to be a GD patient, and believe it or not, we understand the frustrations of having to deal with us while hyper, so we’ll be here for you.

[Ski]

in reply to: Newly diagnosed #1061443

There are two things that can happen with untreated Graves’ that might cause the soreness in your knees ~ one is bone loss, the other is "muscle wasting" that occurs in the large muscle groups (upper arms, upper legs, chest and back). As your levels come back into the normal range following treatment, and especially once they stabilize, you’ll get some real improvement. Until then, you may continue to have some trouble, though it should get a little better all the time. There are important things to know about this ~ until you are no longer hyperthyroid, the muscle wasting continues to be an issue. We’re not completely certain of the mechanism, but it appears that the "tearing down" of muscle tissue is accelerated, and the "rebuilding" of muscle is suppressed. That means the more you exercise your muscles, the worse it will get. There aren’t many other times in life when this is true, and it seems contrary to rest when your muscles are weakening, but it’ll help minimize the damage until your levels are normal again. So go easy on yourself for now. I’m glad you got a diagnosis, at least, that seems to be the biggest hurdle for us. Once we know, we have some choices to make and then we can proceed to health. Do learn everything you can about what’s going on in your body, because it’ll help you get through this whole thing with the best possible outcome. Everything Graves’ takes TIME, so please understand that right away. You will need to accept small improvements rather than leaps forward, so look for those small improvements and celebrate them each as one step closer to normal. I hope this helps ~ good luck with your treatment, feel free to ask any other questions that come up!

[Ski]

in reply to: Brazil Nuts helping thyroid eye problems? #1061456

I have never heard of this as a potential option for controlling TED symptoms ~ I would bring it up with your ophthalmologist and endocrinologist to see what they think. Some supplements can be harmful or can affect other things you’re taking, so always best to check with the docs and/or pharmacists before deciding to do something daily.

[Ski]

in reply to: Postpartum and Graves #1061483

You’re getting some great input ~ just want to make a comment or two.

First, all online bulletin boards are skewed toward illness, because those who have had treatment and feel fine do not come looking for help. So please don’t think that seeing a lot of stories about a bad experience with RAI can be quantitatively measured as a legitimate statistic.

The other comment I would make is that many times when people have issues finding and maintaining their best thyroid hormone level, they blame their treatment choice, when in fact that may not be the problem.

Always remember that, in the absence of any other reason to choose one treatment over another, the choice is YOURS. Take a good look at all of your options and figure it out for yourself. Meds are a great option while you go through that process, since they can help you heal in the meantime, and then your brain works better. ” title=”Very Happy” />

[Ski]

in reply to: YOUR T.E.D. onset #1061478

The disease curve for TED is pretty much set, though each stage can vary in length of time. We know that people who smoke cigarettes experience longer periods of time overall before final resolution. Here’s the general pattern that each TED patient follows.

First there is a "hot phase" which is the period of time where it seems as if your eyes have gone completely haywire ~ they protrude, go back, double vision comes and goes in various parts of the gaze, there’s just no rhyme or reason but everything’s crazy. Second there is a period of stability, where things may still be abnormal, but they no longer change rapidly. Third there is a period of improvement, and the AMOUNT of improvement ultimately achieved varies among TED patients. Finally there is the "cold phase," which is best diagnosed in hindsight ~ after a period of time has passed with NO changes at all, the ophthalmologist will feel comfortable diagnosing the cold phase. The doctor should be the one to tell you how much time needs to pass before they are comfortable with that diagnosis.

Prednisone or directed radiation (a beam to the eye socket) can be effective during the hot phase, in order to keep the changes to a minimum, but of course they carry their own risks. They are ineffective after the hot phase.

Surgical correction can be safely explored in the cold phase. It can be done in the earlier phases if absolutely necessary (to save the optic nerve), but it can trigger more activity that makes future corrections more difficult, if done in the hot phase.

I hope this helps!

[Ski]

in reply to: STRABISMUS (Eye Muscle) SURGERY, ANYONE HAD IT LATELY? #1065268

If you have an opportunity to have further muscle surgery, consider it, definitely. The different muscles react differently to TED, so it’s not surprising that your first surgery couldn’t completely resolve it. I think you can get there. At least have the consultation, take all the questions you have and explore every possible point, but do consider it. It is so important just to be able to see clearly. If you can get there, it’s worth it.

[Ski]

in reply to: Thyroid hair question #1061504

Some hair loss can occur anytime your levels are moving rapidly, even if they’re moving from an unhealthy level to a healthy level, or just moving within the normal range ~ it is not a normal occurrence for the thyroid hormone levels to change so much in "normal life," so the body translates these large shifts as a state of emergency, and that triggers the removal of resources from the "non-essential" functions, like nails and hair. So you may find that some level of hair loss continues until your levels are normal, and have also been stable for some period of time. It shouldn’t be BIG hair loss consistently, it’s usually somewhat milder than that, so if you continue to lose large clumps of hair, you should ask your doctor to investigate and find out if there’s another reason behind it.

[Ski]

in reply to: Adjusting dose of Synthroid after thyroidectomy #1061530

Hi there,

I can’t speak to the post-thyroidectomy/replacement hormone curve (I did RAI), but I can tell you that T3, while it is the active form of thyroid hormone, is extremely volatile precisely because it is the active form of thyroid hormone ~ it is made when you need it, and levels may drop when you don’t. T4 is a more constant, reliable level, and after you’ve achieved normal and stable thyroid hormone levels, TSH is the gold standard for adjusting your dose of replacement hormone. That said, a CHRONICALLY low T3 level would be something to consider ~ in other words, one that simply does not come up, ever ~ but you are far too early on in the process of finding your dose to make that determination.

I completely understand the frustration of feeling badly and wanting to make adjustments rapidly. For now, though, your doctor is right, and it’s better to wait just a little while longer before making those adjustments. Your TSH level won’t accurately reflect the way your body is reacting to the current dose for at least 4-6 weeks after you’ve been taking it, and making adjustments more rapidly can lead to a longer period of time until you feel truly well.

I hope this helps! Also hoping more responses will come in, to give you a better idea of what’s ahead, or at least what the story has been for others in your shoes. Remember this: you are getting closer to normal every minute. ” title=”Very Happy” />

[Ski]

in reply to: getting labs done and taking meds #1061563

I think there may well be a difference between taking ATDs before a blood test, and taking replacement hormone before a blood test. Kimberly’s on ATDs, and Kristen is talking about replacement.

[Ski]

in reply to: Allergic reaction to Methimazole #1061536

I’ve seen people here with allergic reactions to methimazole who have been able to subdue the symptoms with Benadryl and see them ultimately disappear. I’ve also seen people here who have experienced a steady "ramp up" of allergy symptoms that can escalate into something truly frightening ~ up to and including anaphylactic shock. So it is something to look at closely, discuss with the doctor, then make a decision about what to do next and what symptoms to look for that would indicate a need to abandon the course you’re on.

It’s true, PTU has a higher risk of liver damage, but (to be fair) methimazole has its own risk of liver damage, so if you’re faced with a dangerous allergic reaction to one, it would seem to make sense to move to the other, and see if that one works better for you. But again, this is a good discussion for you and the doctor to have ~ and please remember that while your doctor has a lot more experience with this, your doctor will never care about your health as much as you do, so listen carefully, ask questions, and make a decision FOR YOURSELF about how you’d like to proceed. Obviously you share your decision with your doctor so they can assist going forward, and if they have serious reservations about your choice, that’s something else for you to consider.

Try to always be aware of the potential pitfalls in your choice, and be very honest with your doctor about what is going on, so that the two of you can operate as a team (rather than a superior/inferior position in either direction).

I hope this helps! I wish you luck with your treatment, please let us know how it’s going for you!

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