[Ski]

in reply to: Thyroid Eye Disease #1061962

Hi there,

Yes, lots of our participants have TED ~ we have a great deal of information on it. The first thing you should know is that the inflammation is not the same type that would respond to anti-inflammatory medications or supplements. TED is caused by antibodies that attack the tissues behind the eyes, the muscle tissue and the fatty tissue, and causes those tissues to swell, which causes the eyeball to come forward out of the orbit. It is a nasty condition, no fun, causes all kinds of emotional effects as well as physical discomfort, AND has a mind of its own, in a way. The good news is that it has a defined disease curve that ends with some improvement, typically, and once the disease has gone "cold," there are surgical corrections that can be pursued. It can take anywhere from one to three years to fully resolve, and in the meantime there are some things that can be done to limit the ultimate damage, but you need to see an ophthalmologist or neuro-ophthalmologist who has some experience with TED patients. We recommend a doctor associated with ASOPRS (http://www.asoprs.org), because they are qualified doctors with additional training in your condition. They’ll have knowledge of the latest treatment and corrective options, which is crucial. STILL, at times there is nothing that can be done, so prepare yourself for that. If you smoke cigarettes, there is ver solid evidence concluding that smoking (or living with a smoker) can predict the worst cases and the longest disease curves.

The regular disease curve is composed of four parts. At first, there’s what they call the "hot phase," in which the swelling comes and goes, double vision comes and goes, worsens and improves, all pretty randomly. Taking substances that "boost" the immune system will also increase symptoms, so be very careful about taking anything like that. After the hot phase is over, there is generally a period of stability, where things may not be good, but they are at least the same day to day and week to week. After that, there is a period of slight improvement, and finally, the "cold phase," which is when things are completely stable, even if not back to normal. Once you’ve been stable for a certain period of time (I think I’ve heard 3-6 months?), the doctors can, in hindsight, say that you’ve reached the cold phase, and at that point, you can talk to the surgeon about corrective procedures.

Once you get to that point, there are several procedures that can help (I won’t go into it right now, you’re not quite there yet, but you can search them up in posts here), and they need to be performed in a specific order to get the best possible result. The good news is that I know quite a few people who’ve had the very worst TED symptoms, and now they look GREAT.

I hope you’re making sure that your eyes are lubricated ~ the extra exposure can cause dryness, and that can bring on corneal ulcers, which can cause permanent vision loss. Use artificial tears (NOT get-the-red-out drops), without preservatives. They can be pricey, but your vision is worth it. Make sure your eye closes all the way at night as well ~ if not, ask again about how to protect your eye during the night, because that can cause some serious damage as well.

We’re glad you found us!! There is hope, trust me. ” title=”Very Happy” />

Also, we have been told that Graves’ and TED happen concurrently in many people, but they don’t always occur together. Some people have one and never have the other, but more often than not, a patient of one disease has some level of both. TED can occur before Graves’, during Graves’, or many years after Graves’. Very capricious. If your thyroid levels are good now, that’s great ~ make note of where they are now, so that if they go wonky, you’ll have some idea of where you want to return, the point within the normal range where you feel well. Just make sure you know the hyperthyroid (and hypothyroid) symptoms, get tested occasionally (annually, perhaps), and if you feel many of the symptoms of one or the other imbalance, ask for lab tests to see if it has to do with your thyroid hormone levels. Catching any imbalance early on will minimize the amount of time you feel ill.

[Ski]

in reply to: The Rollercoaster. I think my thyroid is posessed. #1062290

Luckily, this worked for you ~ we have to advise against changing med doses (and discontinuing meds) without any discussion with your doctor, because if you’re not monitored by the doctor as the changes are made, there’s no way for them to understand what’s happening if things go awry. If you had ended up in an emergency room, severely hypothyroid, the doctor would look at their records and scratch their heads, because according to everything they’re looking at, you’ve been taking xxx replacement hormone for 8 months, so how could this be happening? It would delay resolution of the problem.

All I’m saying is that one initial appointment with your doctor where you discussed this and agreed to take this path, get tested along the way and make changes as the lab results dictate, would have been safer and would have ended up exactly the same way.

Medications/hormones we take can act differently when we start/stop/adjust ~ for instance, if you were on a beta blocker for irregular heart rhythms and just stopped taking it altogether, you could start a new, more dangerous set of irregular heart rhythms, because you must stop taking beta blockers slowly in order to avoid this affect. For that reason, it’s best to have a medical professional on your team who knows your med status. Even if you act against their advice, informing them as to what you are choosing to do is very important.

[Ski]

in reply to: New Member of the Graves Club #1061970

Hi Wendy!

Welcome to the club you never wanted to join. ” title=”Very Happy” /> We’ve all been there ~ though you’ve got some interesting complications! Some of those tests/meds I’ve never heard of, so you’ve got a lot to manage. The tapazole is the med that’s specifically targeted to affect your thyroid hormone levels, just so you know, and you are likely to come down rather quickly and may get some hypo symptoms, because that’s kind of the initial mindset with ATDs ~ get the levels out of the hyper range, fast, and then tweak doses to find the best dose that keeps your levels normal.

As for the edema, hopefully that resolves as everything normalizes, but you should probably talk specifically about that with your doctor. If they haven’t told you to limit exercise at this point, ask them specifically about that too ~ typically while you are hyperthyroid, you should avoid exercise except the most mild form. Your muscles kind of "waste away" while hyperthyroid, and have a limited ability to regenerate, so it can actually cause more harm to your muscles and lengthen the amount of time before you feel well. In addition to that, a high resting heart rate should not be any higher, and hyperthyroidism also creates some odd electrical signals which can create random atypical heart rhythms, and it can be dangerous to exacerbate that condition with exercise. It doesn’t take long to get back into a position where you’re allowed, but initially it can be a bad idea.

In any event, we’re glad you found us so quickly after your diagnosis! Please look around and I’m sure you’ll find a lot of interesting information.

[Ski]

in reply to: Long-term Weight Gain & Menopause #1061980

Menopause (and age, in general) is more likely the reason that you’re having trouble shedding weight, though there is some evidence that after treatment for Graves’ (not just RAI) we tend to have a different "setpoint" than before, in terms of losing weight. Check Kimberly’s posts about weight loss, she has some excellent tips, and she has managed her weight very well, so she’s someone who walks the walk and knows what she’s talking about.

Bottom line, if you want to drop that last 20 pounds, it’s going to be a struggle beyond what you’ve done already ~ but you CAN do it, if you follow an extreme regimen. Pay attention to the kind of calories you take in, and leave out ALL the junk calories, eat only items that are nutritionally dense, low in calories and fat, and high in fiber. That’s a good start. Kimberly has some other great tips.

[Ski]

in reply to: Has anyone ever done Reclast IV? #1061988

Hi Erica,

Talk of litigation is definitely premature when we’re talking about 5 days of discomfort, so far. Certainly, if your nightmare scenario comes true and she is crippled for months, there ought to be talk of compensation ~ but if she is able to resolve the pain and feel well soon, the litigation process would not be productive or successful. While the argument can be made that someone overlooked discussing the potential side effects, the level of damages for a few days’ discomfort would be so small that it likely wouldn’t even pay the attorneys.

[Ski]

in reply to: Chest pain but normal numbers #1063283

I know there is another condition that can cause chest pains which feel somewhat like a heart attack ~ it’s called costochondritis, and I’ve heard some people here mention having it, though not recently. It has to do with the connective tissue between the ribs and sternum. You may want to ask about that, to see if they can check for it, just in case. I know it’s unsettling not knowing, so I hope you have some luck finding out what’s going on!

[Ski]

in reply to: RAI 14 WEEKS AGO #1062022

Oh, one more quick comment ~ in the many decades RAI has been used, they have found that there is no such thing as giving "just enough," due to the antibody action in the body. ANY thyroid tissue that remains in the body can be made to overproduce by the antibodies, and it will also be slowly destroyed by the process, which results in some really odd spikes and valleys, instead of a nice, stable level of thyroid hormone. Fluctuations themselves can cause damage to the body (in addition to imbalance), and keep the patient from feeling at all well, so removing all of the thyroid tissue ends up resulting in a shorter path to health.

[Ski]

in reply to: RAI 14 WEEKS AGO #1062021

There is a slight lag in feeling the effects of replacement hormone ~ it needs to build up in sufficient quantity in the bloodstream before it is consistently available when your body needs it. The 6-week feedback loop has to do with that buildup, as well as the pituitary gland’s "read" of the thyroid hormone in your bloodstream, which determines the amount of TSH released by the pituitary.

Without the feedback loop working consistently on one dose for at least 6 weeks, the final TSH level is not reliable and your doctor won’t be able to make the correct dosing decisions. I completely understand wanting to feel well ASAP ~ the best way to accomplish it is to follow the protocol exactly. It takes a while, but the path will be shorter if you can count on your blood tests along the way.

Also, do start a symptom diary now ~ it can help when you are interested in tweaking your dose slightly in order to get to YOUR normal. The normal range is as big as Texas, but you will feel your best within a much narrower range. A symptom diary can help you and your doctor see which direction you may want to go in your adjustments, and starting it now can give you a good idea of the things that typically occur for you at certain points along the way.

[Ski]

in reply to: New and have many questions #1062162

ZachB: Feeling foggy can be a symptom of hypo, but where you stand with treatment, it’s really hard to say, by symptom alone, what might be going on. Blood tests simply must be run before you can evaluate ~ things can be VERRRY strange for a while after RAI, and some of the effect is our body readjusting to "real" normal, rather than what we saw as "normal" while hyper. I thought I liked hyper too (everything was getting done for once!), but once I stabilized at normal thyroid hormone levels, I could see in hindsight how very sick I’d been. Even slight imbalance can make you feel awful over time…

Susan: So glad you found us! I’m also glad you’re finding some relief right away, that helps ~ keep in mind that it can be time-consuming to get back to normal and stable, but please continue to celebrate each improvement, no matter how small!

[Ski]

in reply to: long term effect? #1062005

I just wanted to jump in and say it is actually very common for us to go a long time before diagnosis, for exactly the reasons you all mention. We all (along with our doctors) tend to brush off symptoms with a "stress" excuse, or "age," or something else that can’t be corrected (exactly), that we somehow "buy" because it doesn’t seem "that bad." No one wants to be sick, and we all think that one good night’s sleep, just a week’s vacation, etc. etc., will put us back where we should be. The symptoms we experience early on are very much the same as minor symptoms of at least a dozen other conditions (If I really sat down and added them up, I’m sure it’d go beyond even what I imagine), and most doctors assume a "simple answer" stance, at least at the start. We buy into it, because we believe it ourselves to some extent, and time passes, and here we are. I was very lucky to have a diagnosis within 90 days of my first measurable symptom (I had probably been "flirting" with it for more than 10 years at that point, but I don’t believe I was truly hyperthyroid for any length of time prior to that), but that’s because I had a fabulous doctor who took the opposite stance of "brushing it off," she took every test of every body fluid she could think of, and then took a look to see if anything jumped out at her, and of course it did.

Unfortunately, before we are sick with a thyroid disease, we tend to know nothing about thyroid disease, so we don’t even know to ask for the simplest, least expensive test to find out if our symptoms are related to thyroid imbalance. The fact is that it is not a very common reason for those symptoms, so we’re likely to find more patients waiting a while for correct diagnosis than those getting a rapid diagnosis. The real challenge is that we need to get to people who don’t even know they may be affected, in order to let them know to be proactive. Once they’ve gotten the diagnosis, the entire conversation changes, and that’s when they usually find us. It’s something we’d really like to correct ~ the overall awareness of thyroid symptoms and their causes, and the need to just get tested to know for sure. Not everyone will end up finding out they have a thyroid disease, but it could save so much pain and heartache for those who do, just by starting treatment sooner.

[Ski]

in reply to: Searching pictures for use in Wikipedia article about Graves #1062057

Oh, and kudos for updating the Wikipedia page!! GREAT information, at least what I’ve read so far ~ I got about a third of the way through, and adding that to a full day’s work, my brain is full. ” title=”Very Happy” /> I’ve bookmarked it so I can go back and finish. Really good work. Thank you for the attention you’re putting into it!

[Ski]

in reply to: Back to the drawing board… #1062073

That wasn’t such a quick comment, was it? ” title=”Very Happy” />

This one will be quick ~ just wanted to point out that any time you stop taking ATDs and then restart, you start the clock afresh on experiencing the potentially dangerous side effects of ATDs (liver damage and lowered white blood cell count). They are VERY rare. Doctors have found that typically these side effects arise in the first month or two of taking ATDs, and having taken them in the past without complications is NOT a predictor of how it will turn out the next time. Just something you might want to consider, especially if you’re debating the process of attaining remission vs. longterm maintenance/management.

[Ski]

in reply to: Back to the drawing board… #1062072

Just a quick comment ~ the autoimmunity at the root of Graves’ Disease (and lupus, and RA, and all the other varieties of autoimmune disease) is definitely the holy grail for all autoimmune researchers, and we hear from them at our conferences. The science is VERY early on in the process of figuring out how to solve that problem ~ as a matter of fact, they are still in the process of defining the root cause of the problem itself, so while certainly all of us would prefer to solve the autoimmunity than treat our symptoms, we’re in a tough position. Hyperthyroidism, left uncorrected, gives us about a 50-50 chance of survival, and those who survive (to reiterate, those who are uncorrected, completely untreated) will absolutely suffer a reduced quality of life, and their overall health will deteriorate steadily as the condition remains untreated. Once hyperthyroidism has gone on for a long time, there is a potential for irreversible damage ~ things that the body simply can’t heal, even if it is ultimately returned to normal thyroid hormone levels.

The three treatments that are proven to bring our thyroid hormone levels back into the normal range and allow us to return to health are by no means perfect. Each has their own pros and cons, and every single one of us would prefer to simply "be well" than choose one of these ~ given the choice. Once we have Graves’ Disease, though, our choices are limited because we must resolve the issue of hyperthyroidism somehow in order to regain our health.

ATDs, as James mentioned, are not only used to attain remission. ATDs can be used for long term maintenance of thyroid hormone levels, and typically require only a very tiny dose to achieve that. More and more of the medical community is coming onboard with this "fourth" line of treatment (vs. using ATDs to normalize, then remove them and see if remission has occurred).

So the fact that you’ve come out of remission only means that you have a choice to make again ~ obviously you are not interested in any choice other than ATDs at this time, so the mission at this point would be to find a doctor who supports longterm maintenance of thyroid hormone levels on ATDs (or another attempt at remission, if that’s what you want ~ the odds do decrease with each successive attempt, but any number above zero means that SOMEONE achieved it).

Remember that your doctor "pressuring" you to use one treatment or another is simply not right. There are certain medical reasons why a patient would not be a candidate for one treatment or another, and that’s a different question ~ barring any other restriction from certain treatments, the final choice is OURS, as the patient. Our body, our choice. Any doctor who "bullies" their patients for no good reason is a doctor who shouldn’t have patients. We sign their paycheck by showing up to appointments, so if you don’t like the service being provided to you, find another doctor whose paycheck you DO want to sign. They exist. May be hard to find, but they exist. As a matter of fact, we are in the process of launching a "doctor resource" list, and hopefully it’ll make the process a bit easier for our online community.

[Ski]

in reply to: nodule or not? #1062038

Nodules come in two types: hot and cold. As you might guess, a "hot" nodule is one that sucks up all the iodine you take in and pumps out way too much thyroid hormone, and a "cold" nodule is just a "dead space" in your thyroid that doesn’t affect your thyroid hormone levels, but feels like a lump. Cold nodules, I believe, are more likely to be cancerous than hot nodules. It is not all that common, from my 12+ years here, to have had Graves’ Disease, gone into remission, and then experienced a hot nodule (vs. a recurrence of Graves’). Not to say it can’t happen, but as I say, I haven’t seen it much in our online community.

If you had an uptake/scan in conjunction with your Graves’ diagnosis, it would have been very simple to see a nodule, vs. Graves’-like activity in the thyroid. They would have noted it at that time. Still, definitely worth asking the doctor about.

I understand the hesitation to jump into the world of Graves’ Disease again, but if that’s your path in life, we’re here to hold your hand and help you through, so try not to worry too much! At least you’re seeking help early in the process, that’ll definitely lead to a quicker resolution.

Let us know how it’s going!

[Ski]

in reply to: Recently diagnosed with hyperthyroidism #1062250

Oh my goodness! Truly one of those rare stories, I’m so sorry you had to go through all of that, and I’m so glad you’re recovering now!

Just as an aside to everyone else here, I read an article not long ago that mentioned the risks associated with a hospital stay, and they mentioned specifically that overnight staffing is not always as "talented and professional" as daytime staffing, plus (as you see here) they are frequently afraid of the doctors and unwilling to disturb them in the middle of the night, if they’re not completely certain it’s necessary. Not to paint every night nurse with a broad brush, but it’s definitely something to consider when you have some time to think and plan ahead of surgery. The suggestion was to have a family member spend the night, at least the first night, just so you have two voices (and one that isn’t in pain and shock from a recent procedure). In addition to that, speak with your surgeon ahead of time and ask for particular symptoms to look for that SHOULD trigger a call. Then you (and your overnight family member) can speak with some authority when and if something happens.

Here’s to a future of health and happiness for you! ” title=”Very Happy” />

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