[Ski]

in reply to: PTU and Liver failure #1065616

Tapazole is the brand name, but I don’t believe that would solve your problem, if you’re truly allergic. PTU can cause liver damage OR liver failure, that’s why the precautions are so severe.

[Ski]

in reply to: PTU and Liver failure #1065614

Not sure about the statistics you quote ~ you’d need to track that down by getting deeper information on that specific study to see what their population and timeframe was. There actually is relatively new information on PTU and liver failure, but the most dire news is for children, not adults. The new recommendation is NEVER to give PTU to children. Some doctors have extended that to adults because it’s such a dangerous complication. Liver damage is not reversible, but it can be minimized by stopping PTU once you see it’s happening. If you’ve been getting regular liver panels run while you’ve been taking PTU, hopefully you’d have seen evidence if the damage were occurring with you. Liver failure is permanent, and fatal without a transplant. Methimazole is still an option for you, if you want to stop taking PTU. You’d likely need to go through a short period of adjustment, since methimazole and PTU doses aren’t the same (PTU is taken throughout the day, methimazole just once), and they act slightly differently to achieve the same result, but just because you stop PTU doesn’t mean RAI is your only choice. You can take methimazole instead, or you can have surgery.

[Ski]

in reply to: nausea, loss of appetite, other symptoms on synthroid #1065679

You could talk with your doctor about the new symptoms and see what they think. It is always recommended that we wait at least six weeks before doing labs to evaluate a new dose of thyroid hormone replacement, because it can create a false idea of where you are, and you end up chasing a phantom. Still, if your symptoms are truly debilitating, then the doctor may recommend lowering the dose right away. It’d be wise to wait another six weeks after that before having blood drawn. Remember that as long as your thyroid is no longer functioning, a set dose of thyroid hormone replacement will not send you into the stratosphere again. You aren’t putting that much into your system.

[Ski]

in reply to: Can methimazole dosage cause Hypothyroidism? #1065651

Methimazole is meant to curb your production of T4, so yes, when the dose is too high for you at this point in time, it can cause hypothyroidism. ATD dosing is typically done in a way where you get a BIG dose at first, to bring your levels down quickly and reliably, then they adjust it to see where your "magic" dose is, the one that keeps your levels normal, and stable. ATDs work rather quickly, and that means you can change the dose and feel the effects fairly quickly too. We’ve seen LOTS of doctors that determine the dose of ATDs by the TSH numbers. At the beginning of treatment, that just seems to create trouble for patients. After you’ve been on ATDs for a while, TSH is actually a more sensitive and precise number, but at the beginning, as you mention, it lags behind the T4 reality. It’s as if the pituitary gland (which secretes TSH in response to the T4 it "senses" in the bloodstream) has gone to sleep in a way, and it takes time for it to wake up and smell the lack of T4, if you will. ” title=”Very Happy” /> It’s worth pushing back on the doctor’s advice if you are feeling extremely hypo ~ cold, lethargic, things like that. The upside is that you should feel changes fairly rapidly whenever they DO wake up and get the dose adjusted correctly. For now, it’d be good to have a quick conversation with the doctor to see if they’re WILLING to go your route, for now, and see how it plays out. By the way, if they do, that’s a very good sign for your overall relationship with the doctor. Too many doctors see questions about their advice as some type of assault on their character, and those are the types to run from as quickly as possible.

[Ski]

in reply to: Having a hard time dealing with Graves. #1065669

Jake is one of our founders, our shining star example of someone who got through it and is still smiling ~ he can definitely empathize with your position as one of the rare males with GD, and also as one who suffered from TED (his was just awful, you don’t even want to know). I’m sure he’ll jump into this discussion when he visits.

As to your questions ~ first, what can happen if you go without treatment? The list is long, and it includes the possibility of a fatal heart event. There are a few people here who have experienced the downward spiral of escalating thyroid hormone levels, and they have some pretty vivid horror stories. Your muscles continue to waste (remember, your heart is just one big muscle), your bones are eaten away, you begin to suffer temors, your brainpower decreases (I remember thinking I just couldn’t keep a thought in my head ~ thousands of things were going through my head at any given second, but none "stuck"), your hair can begin to thin and fall out more than usual, your fingernails can deteriorate and actually separate from the nailbed, your digestion can be inefficient and you visit the bathroom quite a lot, you always feel hot, you get anxious and angry a lot, your heart beats rapidly and can randomly go into arrhythmia (this is the only thing your beta blockers are protecting you from) ~ and to top it ALL off, you can go into what they call "thyroid storm," which is a state where everything goes completely haywire, your heart rate goes sky high, and that is an ER event, you would be lucky to survive it. We have a couple of people here who have gone through it, and they’ll be the first to urge you not to tempt fate in that way. Thyroid storm is a rare occurrence, among those who are undergoing treatment, but it is a very real threat when you are not.

In addition to ALL of this, the longer you remain hyperthyroid, the longer it will be until you truly feel well, because it is causing damage in every cell of your body as it goes on unchecked. We find that people suffer in various areas in their body ~ it’s not "standard," because each of us has weaknesses in different parts of our bodies naturally, and those are exploited by the thyroid hormone assault. Think of being hyperthyroid as if you are a car, and someone put a brick on the gas pedal. At first, the engine just revs really loud all the time, but eventually, places where the gaskets were beginning to fail or parts were deteriorating will simply, as I have scientifically named it, go "sproing." And the longer it goes on, the more areas are capable of going "sproing." SOME of this damage may be irreparable. Some of it you may be able to heal from. Minimizing the damage is important for your future health.

Now, about radiation ~ RAI has been used as a treatment for Graves’ for more than 60 years, patients have been followed closely, and they have found no increased rates of cancer. We need to remember that they also use RAI to treat thyroid cancer patients, and they routinely give them doses 10 to 20 times what we get. Even THAT is considered a therapeutic dose, and one that does not risk a future cancer event. Still, some people just have a visceral reaction to radiation, and for those people, there are ATDs or surgery as treatment choices. It is wonderful that we HAVE so many choices, we don’t just have to "take it or leave it," we do have options. The only option we really do NOT have is to NOT get treated. It is CRITICAL that you begin on some treatment path. You can go back to ATDs for a while to get your head back, then you can take the time to research and find out what you are most comfortable with.

I am not sure how much I buy the statement that it’s "easier" to regulate thyroid hormone levels after you have no thyroid, but I know I’ve heard that said a lot (by doctors who are urging their patients to do RAI or surgery). Many patients here are successfully managed on low doses of ATDs and they are very happy. Regulating thyroid hormone levels in either case can be tricky and time consuming. The only advantage to having no thyroid is that you don’t have "spikes" in thyroid hormone levels when antibodies become more active than they’ve been in the past, and I’ll let the longterm ATD patients here jump in to let us know how often that’s actually happened. I think once you’ve been successfully regulated, those spikes may be rare.

So please, get in touch with whatever agency you need to so that you can get some HELP. You need to get your thyroid hormone levels under control, and soon.

[Ski]

in reply to: Eye Pressure #1065654

I’m not sure, but please do let us know what the doctor says. It would seem logical that TED could cause increased eye pressure. I haven’t heard of glaucoma being connected to Graves’ Disease or TED specifically.

[Ski]

in reply to: Having a hard time dealing with Graves. #1065665

Hi there,

First, about the soy ~ I know that can be an issue when we’re taking thyroid replacement hormone, so I don’t think it’s an issue in your state. More importantly, your symptoms may mean you’re slipping into hyperthyroid territory again, and that’s very dangerous. I’m sorry no one explained the process of using ATDs to you, because while the goal is attaining normal thyroid hormone levels, the typical path is to just make sure you get the levels out of hyper range, then adjust as necessary to bring you back into the normal range, and hopefully find your normal point, at which point your body can *start* to heal from the hyperthyroidism. I know that some weight can come on during that timeframe, and it’s even more difficult because typically that’s when we’re prohibited from exercise, for our own safety. The bottom line is that things CAN and do improve for most patients, but it takes a great deal of patience, which is in short supply with Graves’ patients, when we’re at our most ill. You need to get back on the right meds, or just do RAI or surgery, so that you can start to heal. The fact that you don’t have insurance may limit your choices, but in the end I think RAI might be the cheapest treatment choice anyway, and if that’s what you want, it’s worth just paying for it to get it done. The replacement hormone you need afterward is one of the least expensive prescriptions there are, so it’s not a big financial impact even without insurance. ATDs still may work for you (that’s the methimazole, it works to limit your production of thyroid hormone), so I wouldn’t necessarily abandon those if you have any reluctance to destroying your thyroid. I believe you can get generics very inexpensively, and with the right guidance (and a great deal of patience) you may be able to find a very low dose that makes you feel right. The weight issue isn’t about the methimazole, it’s more about lowering thyroid hormone levels, and in some respects it’s weight coming back on you that is GOOD weight, because being hyperthyroid literally eats muscle tissue. Getting better means the muscle tissue comes back, and you need that, but it comes back like a baby’s muscle, which you now have to work up to its former strength in order to get the same calorie-burning benefits it used to give you. That may be why weight continues to come on, even if you’re hyPERthyroid, because you’ve lost muscle tissue and now your body can no longer tolerate the same level of calories without gaining weight. In either case, what will resolve your issue is normal thyroid hormone levels, and even then it’ll take a while. It’s important to get started, so you’ll get where you want to be sooner. Things can go badly, quickly, when we’re unregulated.

SO glad you found us. ” title=”Very Happy” />

[Ski]

in reply to: nausea, loss of appetite, other symptoms on synthroid #1065677

When we’re first getting regulated, things can be a bit up/down/all over the place, symptom-wise. Remember that when you change doses of replacement thyroid hormone, your body needs about six weeks to fully metabolize that dose before you can effectively evaluate it with lab results. After each of my dose changes I’ve had a period of a few weeks where I feel hyper one minute, hypo the next, before things begin to settle into a level state. It’s tough to wrap our heads around that ~ we’re so used to being able to say "I took it this morning and this afternoon I feel badly, so that must be the cause, and I need to change something." It just doesn’t work that way with thyroid hormone replacement. You need to let things settle, otherwise you can put yourself in a constant state of fluctuation, and that’s not healthy either.

[Ski]

in reply to: Fluoride Detox #1065690

What I understand is that iodine is only used in the body by the thyroid to make thyroid hormone ~ if you have no thyroid, iodine cannot transform into thyroid hormone, so it should be safe for you to ingest without any trouble. When you are still hyperthyroid, or when you are preparing to have RAI treatment, kelp is just about the only food with enough concentrated iodine to adversely affect you, for whatever reason (if you are actively hyperthyroid, it’s like throwing gas on a fire, and if you are preparing for RAI treatment, you don’t want to "use up" your thyroid’s iodine capacity with OTHER forms of iodine), so I can see why you’d be advised to avoid it at those times. Now, you probably do not have any concern with ingesting it. If you’re very concerned about it, talk with your endocrinologist.

[Ski]

in reply to: Questions about "Mild Graves" #1065692

Welcome, we’re glad you found us! Sorry you had to join the "club," but it’s a nice one, despite the reason. ” title=”Very Happy” />

A quick answer for your main question is YES, we all have varying symptoms. If you look at the list of hyperthyroid symptoms, or those that point to hyperthyroidism, we each probably had some of them, not all of them. It sounds as if you’ve already learned the lesson to keep pushing until someone finds out what’s really wrong with you, kudos for that!

You’ve also learned that the doctor is not necessarily the best one to give you chapter and verse on what’s going on with you ~ it’s really necessary to do your own research and learn for yourself. No one cares about you like you do, I promise. We were all raised with the Marcus Welby idea of a doctor, who is positively consumed by your problem until he "cracks the case," but the truth is they are exhausted and often not up on all the latest information on every single disease. And who could blame them? Especially endocrinologists ~ rates of diabetes are through the roof, and that’s definitely the bulk of their practice, so other conditions, unless they specialize, go somewhat by the wayside. That is not to say anything particularly negative about physicians ~ it’s just the truth. Graves’ is somewhat "simple" for them ~ we have several treatment options, and doctors typically pick their favorite, then push all their patients in that direction. For the most part, the patients do what they’re told and the doctor never gets any pushback, so they figure they’ve made the "right" decision for all their patients. (Naturally, there are doctors who operate differently, and bless them all ~ but I’m afraid they’re in the minority.)

It’s VERY true that what appears to be a "normal" thyroid hormone level may not be normal FOR YOU, and you’ve seen that. It’s a good thing you got the scan done, that has obviously helped you get the diagnosis you need. If you have historical lab values for your thyroid hormone levels (before anything went haywire), that can help you identify YOUR normal point. If not, it’s a little bit of art, finding that, and it can take some time. The methimazole should help you feel better, but it may take a little time. Hyperthyroidism is literally an assault on every part of your body, and only after levels are normal, and stable, can your body BEGIN to heal from the assault. Arriving at some level that "ought to be" normal is not enough, you’ll need to stabilize there for a time (weeks, maybe? months, perhaps?) before you REALLY feel the best you possibly can.

You’ll get more responses, I’m sure. I hope you’re feeling MUCH better, and soon. ” title=”Wink” />

[Ski]

in reply to: Switched Endo’s- very new treament plan…OPINIONS NEEDED! #1065709

Long term ATD use is actually pretty common in the rest of the world, so there have been effective studies. The only trouble is if the patient began to have some of the rare, dangerous side effects (liver damage or lowered white blood cell count), but the fact is that most of the time, those side effects show up at the beginning of the period of use, not in the middle with an established patient, so low dose, long term ATDs have a low risk overall. There is an element of chemicals "building up" in the liver, so I believe liver enzymes should be checked periodically during long term ATD use (annually? don’t quote me), but again, a very low dose means lower risk of that.

One thing to remember is that even if you’ve been on ATDs long term and it went well, if you stop to attempt remission and then start again, you are at the *same risk* as anyone else for those rare, dangerous side effects, so you need to be very vigilant when you first restart ATD use ~ I think they said those most often show up in the first few months.

[Ski]

in reply to: Thyroid Hair #1065721

This question has come up before ~ the doctors are split on the answer. It can be a benefit because then you’ve begun a relationship with the doctor, and it also helps if they know what you looked like "before," in case there IS an "after." The changes can be very disfiguring, and the outcome of any surgery you may need for your eyes is better when the doctor has a clear idea of where you started.

Those who are of the opinion that it is not necessarily a good idea usually say so because a very small portion of the overall GD population ends up with such severe symptoms that they need to be managed by an ophthalmologist, so in MOST cases it will be a waste of time.

I suppose you can satisfy both by having an ophthalmologist’s phone number handy, by taking a GOOD picture of yourself now, before any changes begin (close up, eyes open naturally, front and side view ~ heck, both sides), and by knowing what symptoms to look for so that you call that number ASAP if you see changes beginning to occur.

[Ski]

in reply to: HIVES POST-OP #1065698

It’s a common misconception that having Graves’ means we have a weakened immune system, but it doesn’t. Having an autoimmune disease means our bodies have developed new antibodies against our own tissue, which a weakened immune system wouldn’t do. It’s more like our immune systems have gone crazy. ” title=”Very Happy” /> In any event ~ allergies can appear at any time in your life, but hives can also be caused just by being under stress, so consider that as a possibility as well. It’d be good for the doctor to look into it, see if they can determine the root cause.

Just as an aside comment ~ I was diagnosed with Graves’ in 1998 and I haven’t had any new allergic reactions to medications. I did have one episode with hives a few years before my Graves’ diagnosis ~ I would’ve sworn it was an allergic reaction, but in fact it wasn’t. I was just stressed out and ballooned with hives as a result.

[Ski]

in reply to: MY EYES!!!!! #1065701

The doctor you need for your eyes is an ophthalmologist, and hopefully one associated with ASOPRS (http://www.asoprs.org), because they have specific training on the issues faced by someone with Thyroid Eye Disease. It’s referred to as Thyroid Eye Disease because it occurs along with thyroid conditions, but it is not caused, or worsened, by your hyperthyroid condition. It is closely related, and as a matter of fact, until relatively recently, TED was most often known as Graves’ Eye Disease. They started finding it along with Hashimoto’s and other thyroid conditions, so they officially changed the name to better reflect its incidence in the population overall.

So, see an ophthalmologist, that’s the right doctor to deal with your eyes.

You still need an endo to deal with your hyperthyroid condition, but they are NOT the experts on the eye disease, and you would not be well served getting advice only from them on that. They may well have a good deal of information on TED, and they probably have patients who have experienced it, but there is a lot going on in the field of TED treatment right now, so you want to make sure you’re dealing with the professionals who are most current in their information.

[Ski]

in reply to: Thyroid Hair #1065715

Once things are back to normal, we can (for the most part) return to things like coloring hair. Contacts can be a very individual issue ~ I’ve been able to wear mine throughout, even when they were more dry than before, but I know that for some, the comfort just never returns. I used a TON of eye drops for a little while (the drops for "mid-range" severity of dryness), but I could still wear them.

Now I’ve switched to a new-ish type of soft lens that retains moisture on your eye better than the old ones. You may want to look into those ~ it triggers another "startup" cost for fitting, etc., but I’ve been VERY happy with these, and of course that’s just a one-time cost. Several manufacturers came out with them at once, so there are choices, if you’re interested in asking your contact lens provider about them.

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