[Ski]

in reply to: So nervous – how will I cope? #1070062

You’re so strong and you hardly even KNOW it, do you? ” title=”Very Happy” />

I just got finished reading your lovely, supportive post to another, describing all you’ve been through and how you’ve come through it so well ~ and whoops, here you are in a panic! I do understand ~ advising another isn’t nearly the same as anticipating your own treatment ~ but I hope you see what I mean. ” title=”Wink” />

Others who have been through the surgery will have to answer your more specific questions, but I can tell you that for the most part, I’ve only seen posts with the happy "wow, that was much easier than I thought!" I hope that helps some. Swallowing should not be affected, since they don’t do anything with the swallowing structures (they’re working in front of them), and actually, getting the thyroid out of the way might actually relieve some swallowing issues you’ve had from the goiter. I’ve not heard of anyone saying their swallowing was affected, or that they’ve had internal bleeding afterward. Of course, as you know, that doesn’t mean it can’t happen, or has never happened. (Oh, big help I am!)

It’s wise to be looking at the advantages, rather than the "what-if" worst scenario kind of thing. Have faith in your surgeon, have a nice long consult with them to allay your fears.

BREATHE! DEEP! ” title=”Very Happy” />
and again, slowly. ” title=”Wink” />
ad infinitum

[Ski]

in reply to: double vision #1070087

There was a doctor at our conference last October who talked about steroid injections for the swelling ~ in this particular method, it is injected into the fluid BEHIND the eye, kind of "bathing" the tissues in it so all the swollen tissues can get some relief. They go in through the "blank space," be it ever so small, between the eye and the orbital bone, so there’s no "needle prick," the syringe is emptied into the fluid. It’s a tricky procedure (obviously) but he said they’d had some good results. As always though, steroids carry their own side effects, so the benefits/risks need to be weighed very carefully.

There was also talk about Botox, but not in significant detail. There had been some good results, typically for those who are in early-stage TED, and with small variances (small differences in eye tracking creating the double vision). If that describes you, sounds like it’s a possibility for you.

Just make sure you’re talking to a doctor who has had experience administering these treatments, and get ALL of your questions answered before going ahead.

[Ski]

in reply to: Medicine before surgery #1070114

It can be very personal, how long you need to be on meds before surgery. Talk with the doctor about specifics ~ where do they want to see your numbers, and how long should they be stable there before the doctor is confident that you’re in the best possible state for surgery? I would GUESS (capital letters means MY OPINION) that it’d be at least a few weeks, but it could be longer if you have any trouble bringing the levels down. It will help to know the doctor’s target figures, so you can keep an eye out for them as well.

[Ski]

in reply to: double vision #1070080

I think there is a chance your double vision could eventually go away on its own. At this point, it sounds as if you’re in the "hot phase" of TED, meaning your symptoms increase and decrease kind of randomly. That makes it much harder to manage double vision ~ there are "stickon" prisms you can put on your glasses that refocus the light to where your eye really is (the cause of double vision for most TED patients is that one muscle is more swollen, which keeps the eyes from "tracking" properly and gives you two images), but that only works if your eye stays there. During the hot phase, the muscles can swell and recede randomly, plus you can find different muscles reacting at different times, so the actual doubling might change ~ changing from a left/right double to up/down, or changing the distance between the two images.

After the hot phase is over, once you’ve hit the cold phase, you may find that the swelling recedes sufficiently to allow your eyes to track together again. If your doctor doesn’t see the need for prednisone or radiation right now, then hopefully your proptosis (bulging) is not all that severe, and that bodes well for your future. Still, this interim time is VERY frustrating. If you’re willing to try prisms, definitely go for the stick-on kind (there are others you can actually have "ground in" to your prescription), and see if they help you. If they do, then hopefully you can continue changing the placement of the prisms as necessary so you can see correctly.

If it’s worse in the morning, you may have some fluid "pooling" in your muscles as you sleep. Try elevating the head of your bed so gravity helps the fluid drain during the night, or at least keeps it from collecting. It’s easier to raise the head of your bed than use a pile of pillows, because a pile of pillows can create new stress points as your body bends to rise with the pillow tower, and you can fall off of them in the night. If the actual head of the bed is elevated, you’ll always be elevated. We have "chunks" of 4x4s under the feet of the frame. I didn’t have double vision, but I had a lot of puffiness around my eyes, and it kept it to a minimum. As a bonus, it cured my husband’s middle-of-the-night heartburn. Go figure… ” title=”Wink” /> We keep it that way still.

I hope that helps! Let us know how it’s going.

[Ski]

in reply to: Hyper / Exercise / Joint Pain ? #1070156

Surgery’s the quickest way to know the thyroid is gone, but meds can act pretty quickly to bring your levels down, and you’ll need to do something while you prepare for surgery anyway, so you may want to start with meds and see how you feel on them. If they don’t seem to be working for you, you could proceed to surgery. RAI, at a high enough dose, can be just as quick a solution. Just make sure it’s an ablative dose, nothing less. No matter WHAT you do, it’ll be up to six weeks before the excess thyroid hormone gets out of your bloodstream.

[Ski]

in reply to: Hyper / Exercise / Joint Pain ? #1070154

The normal process for building muscle during exercise is that exercise tears down the muscle tissue, and the body rebuilds it stronger. When we are hyperthyroid, our "tear down" mechanism is accelerated (so we lose muscle tissue even while sitting still, even more while exercising and working the muscles), and our "rebuild" mechanism is completely suppressed. That’s why exercise is such a bad idea. You’ll lose muscle mass anyway, and running or jogging will only make it worse.

[Ski]

in reply to: Is it a bad day? #1070096

Tapazole doesn’t necessarily work "instantly" ~ even after a few weeks on Tapazole, your body may still be reacting to the excess thyroid hormone that has not made its way out of your bloodstream yet.

Patience. I know it’s the hardest thing to come by!

[Ski]

in reply to: no dairy products? #1070110

For the most part, our reactions to hyperthyroidism are very personal ~ not everyone develops the same sensitivities or has the same symptoms.

I have never heard a blanket restriction against dairy for Graves’ patients, or anything other than "stay away from seaweed" that can be fully substantiated with evidence. Also, the diet restrictions are only meant for patients who still have a functioning thyroid ~ anyone who has ablated the thyroid through either RAI or surgery shouldn’t need to worry about seaweed.

I think it’s possible that many of us have sensitivities we are unaware of, and we just get used to eating the way "Mom fed us," so we don’t take the extra step of figuring out what we feel like without this or that in our diet.

My advice would be to do the same thing doctors suggest for our children ~ if you feel you’re having a reaction to one particular food, eliminate it completely and see how you feel. Reintroduce it, by little bits, and see how you feel. It’s time consuming, and you only want to do one substance at a time to make sure you’re getting good information, but it’s worth it!

A friend (one who does NOT have Graves’) recently decided to eliminate meat and dairy, all at once. She immediately felt healthier, and six months later, many of the symptoms she’d been chasing with her doctor had completely gone away.

It’s worth finding out what helps YOU, but I’m not convinced we can decide for each other what we "must" remove from our diet (or include).

[Ski]

in reply to: Did you develop hives/ itching from tapazole? #1070134

If you’re allergic to tapazole, it can be dangerous. Some people find that as their dosage decreases, their allergic reaction goes away, but in other people it can escalate and even end up in anaphylactic shock (like a bee sting allergy) where you can’t breathe. I’m surprised your doctor was not concerned at all that you are exhibiting an allergic reaction.

I had Zyrtec prescribed before anyone knew I had Graves’, and it made ALL my symptoms worse, so keep that in mind.

And yes, 120 is an extremely high heart rate. I really hope you’re having some success getting that down. It’s not good for you, and the accelerated heart rate can lead to irregular heart beats that can get out of hand.

[Ski]

in reply to: Hyper / Exercise / Joint Pain ? #1070152

If you aren’t being treated at all, I’m surprised your doctor has agreed to let you exercise. When we’re healthy, exercise helps. When we’re hyper, it accelerates the muscle wasting. You’re actually better off, just now, to do nothing other than stretching and EXTREMELY light walking. It’s not really your muscle turning into fat, it’s your muscle tissue literally being stripped away from your body. You don’t want to help it happen faster.

[Ski]

in reply to: 13 y/o w/Hashimoto’s, but hyper and symptomatic #1070635

That’s because it’s very hard on the body to go back and forth from hyper to hypo ~ by definition, when a patient has both Hashimoto’s and Graves’, there’s no telling which antibodies will be "dominant" at any particular time, so it’s constantly chasing "normal" that can be so debilitating. Everything takes so long in the interim, testing, figuring out levels, and then BAM something changes and off you go again. The body never has a chance to rest and heal, if the levels don’t arrive at normal and then stay there. With these two opposite sets of antibodies in the bloodstream, you have little hope of a long period of stability without taking the thyroid itself out of the equation.

[Ski]

in reply to: Propylthiouracil or Carbimazole #1070183

” title=”Very Happy” /> We do know how it is.

WBC would be a white blood cell count ~ the ATDs can have the side effect of lowering our white blood cell count to dangerous levels, where we could lose the ability to fight infections on our own, and if it happens while you’re taking one of the ATDs, they may switch you to the other. They wouldn’t necessarily both have the same effect on you.

Did they give you any reason for using the other med this time? PTU is preferred during pregnancy, as long as your dose is under a certain threshold ~ were you attempting pregnancy the first time you were treated, and that’s no longer an issue now? PTU has lately been "in the news" because pediatricians are being advised against prescribing it for their Graves’ patients, but no such restriction has yet been made for adults. The issue was a small percentage of kids that went into liver failure after using PTU, and since there are two meds to choose from, the new rule is no PTU for children. Liver enzymes are usually monitored carefully, and as far as I know the issues can be resolved by discontinuing the meds, so it is something manageable with adults. Perhaps the doctor is being cautious with you. It’s worth asking, especially since you aren’t feeling well on the alternative.

[Ski]

in reply to: neding some answers #1070253

There may be some confusion about what you refer to as Graves’ Disease ~ sounds like you’re talking about eye involvement, which has a different name. That’s Thyroid Eye Disease, but it was once referred to as Graves’ Eye Disease. It has its own course, and for the most part is not affected by treatment of the thyroid, except that RAI can cause a "temporary worsening" of the symptoms. In my case, it was a few months of a little more bulging and grittiness, but in some people it’s more pronounced. Other than that, thyroid symptoms and eye symptoms do not track together in any way, so it’s not unusual for you to be experiencing hypothyroidism and yet still having eye symptoms.

You should be seeing a specialist for your eye disease ~ an ophthalmologist would be the right source. There are things they can offer to help minimize the overall bulging that happens. The eye disease has a distinct "hot phase" that can last for months, in which the eyes continually change, bulging and receding. After that hot phase is over, there is usually a period of stability, then a short period of improvement, and then doctors can start to discuss what damage is left behind by the scar tissue. If you minimize the bulging that happens in the hot phase, you may reduce the need for procedures to correct the scar tissue at the end.

One last thing ~ increases in thyroid hormone replacement can take up to six weeks to be fully metabolized in the blood stream, so it is a long road if you’re starting from a very low point. In addition to that, it’s really not safe to up our dosage by more than one dose level at a time, which adds to the time spend dialing in your correct levels. Try to be grateful that you’re headed in the right direction, but continue to give yourself a break.

[Ski]

in reply to: Propylthiouracil or Carbimazole #1070180

Firstly ~ you are being treated for hyperthyroidism with PTU and carbimazole. I know it seems odd because the TSH is extremely low, but it has an inverse relationship to our actual thyroid hormone.

The two medications differ slightly in the chemical process that lowers thyroid hormone levels ~ I’m not well versed on the precise differences ~ but if you were successfully treated with PTU earlier, I would take some time to ask your doctor why they chose the other medication this time. You should be able to go back to using the one you used before.

[Ski]

in reply to: My 14 year old was diagnosed today #1070189

You’ll find a lot of information just by searching on topics that come up in your head, but I can give you some basics.

First, this is a chemical imbalance in your son’s body. Thyroid hormone functions as the "fuel" for literally every cell, and he’s got too much thyroid hormone, so every cell is "revving high," and he can feel amped up and totally exhausted in the same moment. Emotions will run high, and he may "snap" for reasons you don’t quite get. Graves’ is a chronic, autoimmune thyroid disease where the body has generated antibodies to its own thyroid. These antibodies mimic the hormone meant to stimulate release of thyroid hormone, and trick the thyroid into overproducing. The tough part about treatment is that these are antibodies. You don’t want to shut off the entire immune system, obviously, and antibodies can’t yet be "removed" from the bloodstream, so his thyroid is under attack, and the end result is that you must do something to stop it from overproducing. After you get the thyroid hormone levels back into a normal range, and keep them stable for some period of time, the body can begin to heal. Symptoms will not go away overnight. This came on, probably over months and months, and it will take a while for the body to heal itself after levels normalize. Patience is the hallmark in recovering from Graves’.

There are three treatment choices available to you. One is anti-thyroid drugs (ATDs), which come in two basic types, generic methimazole (U.S. brand Tapazole, UK brand Carbimazole) and PTU (long name, don’t even try). They have slightly different chemical reactions that result in lowering thyroid hormone levels. These can lower the thyroid hormone levels pretty rapidly, and in about 40% of people they can help trigger a remission of the overproduction ~ but you need to be on them for two years (at ever-lowering doses, most of that time on a very low dose) before you can stop taking them to see if you’ve achieved remission, and they have the potential to damage the liver as well as causing an extremely rare side effect where our white blood cell counts are dangerously lowered. Both of these side effects are tested for, often, and if they begin to happen, can be reversed by discontinuing the meds. For some people, they have a tough time managing levels with ATDs. You must be absolutely vigilant about testing levels and taking meds on time as prescribed. PTU must be taken several times a day. Methimazole once a day. PTU tastes foul (I mean beyond foul), and has recently been advised against for pediatric patients because a small percentage have suffered liver failure as a result of taking it.

Second option is RAI, short for radioiodine. This is a radioactive isotope we can take in very small doses (thyroid cancer patients can get 10 to 20 times what we get), it goes to the thyroid because the thyroid is the only organ that takes up iodine, and destroys the thyroid over time. It does most of its work in about six weeks, does everything it is capable of doing within six months. There was once a theory that a patient could get "just enough" to get their thyroid back into the normal range, but that has been largely abandoned now because it was unsuccessful. Any remaining thyroid tissue is capable of overproducing due to the antibody attack, and with less tissue, it doesn’t seem to limit the overproduction so that levels remain stable. For that reason, most RAI patients are aiming for ablation (total destruction) of the thyroid so they can be rid of the possibility of antibodies affecting thyroid hormone levels. After it’s gone, we take replacement thyroid hormone for our needs. It takes a little while to dial in our own normal level (the normal range is enormous, and we need to find our best spot within the range, not just ANY spot within the range), but once we’ve got that dialed in, we can have our levels checked annually just to make sure our needs haven’t changed, and that’s that.

The third option is surgical removal of the thyroid ~ same end result as RAI, quicker (you know when it’s gone), but I don’t think I need to go into too much detail about the risks of surgery, we all know those. For thyroid surgery in particular, there is a possibility of nicking or paralyzing the vocal cords, or damaging the parathyroids, which control calcium levels in the body. Seeing a surgeon who is experienced with this specific procedure, who performs many of them routinely, and who has an extremely low complication rate, is the way to do this, if it’s your choice.

Obviously, no perfect choices. Luckily, we have three. Do all your research, talk with your son, and see if you can come to some decision. It can be a good idea to start with the meds to see how they work for him, and also just to begin normalizing the thyroid hormone levels while you look into all the options.

Beta blockers may be prescribed to help with some of the worst symptoms ~ the anxiety, tremors, and arrhythmias we can get ~ but they do nothing to treat the hyperthyroidism. Mostly they protect the heart, but it’s a nice coincidence that they take care of the tremors and anxiety.

And just when you thought it was safe to go back in the water ~ I must at least mention the other things that may occur along with Graves’. We’re beginning to understand that this is more like a syndrome than one disease, because other diseases occur along with it frequently.

Thyroid Eye Disease is the thing you may have thought of as Graves’ ~ the eye-bulging. This is treated by an ophthalmologist (not an optician). There is another set of antibodies that can attack either the fatty tissue or the muscles behind the eyes, which causes them to swell. They can swell unevenly, so the result can be double vision, pain upon moving the eyes, bulging eyes, headaches behind the eyes, things like that. To complicate matters, the fact that we have an autoimmune disease makes our tears thinner, less able to moisturize our eyes, so chronic dryness can come along with this (and bulging eyes sometimes don’t close at night, so they are in danger of extreme dryness). For the most part, it is an incredibly tiny percentage of Graves’ patients that end up with the worst symptoms of TED, but you should know it’s possible. RAI can "temporarily worsen" TED symptoms, but a few weeks taking Prednisone can do away with that likelihood, so if TED symptoms are present, you would want to consult your son’s ophthalmologist about whether RAI is a good idea, or whether Prednisone would be an option. It comes with its own side effects.

Pretibial myxedema is a weird, orange-peel looking rash (except it’s purple) on the shins. Not everyone gets this either. It’s apparently another set of antibodies that attack something in the soft tissues on the shins. I’m not all that well versed on it. Dermatologists test for and treat this, usually with steroid cream. It can come and go.

Overwhelmed yet? ” title=”Wink” /> Sorry about that. Just trying to ease you into the pool. This WILL be a long ride, and it may get complicated. But your son will recover, I promise. Tell him we’re all thinking of him. There are a few other parents of newly diagnosed teenagers here, you can probably all learn from each other through the process.

Since your son is school age, you may want to look into accommodations for him in the fall. He won’t need much, but it’d be nice to have everyone on the same page, supporting him through his recovery. We all feel differently throughout treatment and recovery, so follow his cues about what he feels he needs.

Oh, and welcome. ” title=”Very Happy” />

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