[Ski]

in reply to: New here, have lots of questions #1074148

As far as we know, Graves’ doesn’t cause these. I was having them for a while this year, and did a cursory search for info at the time. I believe I found the most relevant info under the title of "cluster migraines," it sounded like what I was going through. It has subsided, and nothing has changed in my thyroid hormone levels in the meantime. I know that’s not much info, but it’s all I’ve got for you on that topic. ” title=”Wink” />

You should run the info past your PC and see what they have to say.

[Ski]

in reply to: How long doest it take on PTU to recover? #1074060

There are actually two questions here. One, how long do you usually take PTU? Second, how long does it take to recover? The two answers are rather different.

Typically, doctors advise taking PTU (or methimazole, whichever ATD you choose) for at least a year, sometimes two years, before stopping to see if you have attained remission. Remission is a period of time when your levels are normal without taking any medication.

The standard process for using either ATD is to take high doses at first, so you bring the hyperthyroidism under control rapidly. Then you take less and less, until you are taking a dose that keeps you steady at a thyroid hormone level that feels healthy for you. Then you keep taking that dose (with levels regularly monitored) until you and your doctor agree that you may be ready to see if you’ve attained remission.

Once your levels are in the normal range, and steady, then your body BEGINS to recover. Hyperthyroidism is extremely damaging to the body, and there is much that needs to heal before we really, truly feel well. That period of time is shorter than the 1-2 years of taking PTU, but much longer than most of us would prefer. You need at least six weeks just to flush the excess thyroid hormone from your bloodstream, and after that, you may chase "normal" for a while, then once you’ve found that normal, as I said, you will BEGIN to heal. We can’t give you any hard figures, because each of us is different. The more things in your life that you bring into balance, I think you’ll have a quicker recovery, but none of us can expect truly RAPID healing.

Be good to yourself in the meantime. Take it easy. LET your body heal. Overdoing will only make the recovery last longer.

[Ski]

in reply to: Is any of medications safe for breastfeeding? #1074056

PTU is known to cross into breastmilk, but lower doses have been deemed to be safe. PTU could not "kill" your baby’s thyroid, but it may suppress thyroid activity. It is possible to keep testing your baby’s thyroid function in order to keep that from happening. PTU is the safer of the two ATDs (methimazole being the other) for pregnant and breastfeeding women.

You may want to consult with a pediatric endocrinologist. Some doctors may not be completely aware of the circumstances.

Still, you are just diagnosed, so the likelihood is that you require a much higher dose of PTU than is typically deemed safe while breastfeeding. I feel for you, I know the special bond is something you’d prefer to continue. If there’s any chance you can pump in order to keep the flow going until your PTU dose is low enough to go back to breastfeeding more safely, you may want to explore that. I know that once a baby is bottle-fed, it’s harder to get them to go back to breastfeeding (they’re fed FAR more quickly on a bottle), but that may be worth a try.

[Ski]

in reply to: from ptu to tapazole? #1074072

You should be able to try Tapazole and have a reasonable expectation of success. The two drugs act differently to accomplish the same thing.

[Ski]

in reply to: New here, have lots of questions #1074136

Some people do gain while hyperthyroid ~ there can be a number of reasons. One is that as you lose muscle mass, eating the same amount of food will make you gain because the muscle is no longer there to process the calories. I think there are other reasons that are not well understood, but I have known at least two people who gained while hyperthyroid, and almost weren’t diagnosed because of it. (You couldn’t be hyper, you’re gaining! ~ all to avoid one of the least expensive diagnostic tests there ARE.)

The meds can be discontinued if you have an adverse reaction. I don’t believe the reactions are very common. We just see a lot of people here who have had the reactions, because only people who are having trouble will seek help.

[Ski]

in reply to: Need help understanding levels #1074075

We can’t interpret your blood test results because different labs have different ranges of normal (depends on how they do their testing, etc. etc.), but if you have the test results from the lab, they should indicate THEIR normal range, and your results are typically given in such a way as to alert you to whether they are within normal ranges or not. Remember, the normal range is HUGE, so just because your levels fall within what they would call "normal," it doesn’t mean you can say to yourself, all better, phew. You may still need to dial in to your personal normal, but at least once you’re within the normal range, most of the damage caused by hyperthyroidism will stop.

For the basic tutorial on thyroid hormone levels, here you go: ” title=”Very Happy” />

TSH stands for Thyroid Stimulating Hormone. This is a component of your thyroid hormone readings, but it is NOT thyroid hormone. This is secreted by the pituitary gland and sent to the thyroid in response to its reading of the thyroid hormone levels in your bloodstream. This value is typically inverse to your thyroid hormone levels ~ if your thyroid hormone levels are too high, the level of TSH will drop so that it stops stimulating the thyroid to produce hormone. If your thyroid hormone levels are low, the level is TSH will rise, in effect "shouting" at the thyroid to PRODUCE MORE. (ALL of this presumes your pituitary gland is working properly ~ typically not an issue with GD patients, but people with a pituitary problem may not have levels that make sense against other readings.) TSH changes extremely slowly, as it responds to something of a "long term average" rather than a momentary change. If it’s been suppressed for a long time while you were hyperthyroid, sometimes it takes a while to "bounce back" and give correct readings.

T4 is the inactive form of thyroid hormone in your bloodstream. It is held "in reserve" for your body to use as required, at which point your body converts the T4 it needs into T3. T4 is what we take when we are on synthroid or another thyroid hormone replacement. T3 is the active form of thyroid hormone in the bloodstream.

Levels of T4 usually change rather slowly (think days). Levels of T3 can change rapidly (within hours), and typically adjust in response to immediate needs, so T4 is an easier level to get a handle on and evaluate. T4, in concert with TSH levels, gives you a pretty clear picture of where you stand.

I hope that helps!

[Ski]

in reply to: Thyroid Eye Disease question #1074078

Typically TED has a "life span" of one year to three years (people who smoke have a higher chance of experiencing the longer period). It comes on, the eyes fluctuate for a while (better/worse/better/worse), then they stabilize, stay that way a while, then there’s usually a period of slight improvement, and finally, no changes whatsoever.

For the most part, if the TED symptoms are not painful, restricting your ability to see, or endangering your optic nerve, the ophthalmologists will tell you to wait and let it run its course. That’s because once you wait until the furthest edge of the "curve," you may find that your eyes settle back into looking much the same as they did before you started the whole experience, which will minimize the necessity for surgery to correct things.

In the meantime, if you ARE experiencing pain upon movement of your eyes, or having double vision, then steroids and/or orbital radiation can help keep those symptoms at bay. At our most recent conference, we were told that these two treatments can be combined in order to reduce risks from either. They are ONLY effective during the "hot" phase (the period of fluctuating at the beginning), and a patient who shows remarkable improvement with either treatment is likely to also have improvement with the other, so you can combine the two for more relief and less risk.

If your optic nerve is at risk of being compressed by the extra pressure behind the eye (VERY RARE), they will typically start with steroids and/or orbital radiation, may continue to "pulsed" high dose steroids or intraorbital injections of steroids behind the eye, and might even consider orbital decompression. If the optic nerve is at risk, the highest priority is to save your sight. If it becomes completely compressed, there’s no getting it back.

Surgeries during the hot phase are very risky, because the changes in your eyes are triggered by antibody action, which can be stimulated by invasive procedures such as surgery. Usually, no surgeries will be recommended until the "cold" phase.

I’ve never heard of anyone suggesting they could "cure" TED. It is an autoimmune disease, and that is THE mousetrap that the medical community is trying to invent right now. If it were true that an autoimmune disease had a CURE, we would be hearing it loud and clear from all quarters of the globe. Waiting it out could produce the same before/after pictures, so I would not presume that the claims are 100% accurate.

I have never had a great deal of eye involvement, but now, 10 years past my initial Graves’ diagnosis, my eyes look almost exactly as they did when I started, and I never did ANY type of treatment for TED.

Once the entire process is over, there are surgical solutions to correct the issues that remain ~ at that point, it’s usually dealing with the scar tissue, since active changes stop much earlier. Doing surgery later minimizes the procedures you probably need to undergo, but again, if your optic nerve is compressed, that is an emergency situation and you must do something quickly.

I’ve heard the simple layman’s test for optic nerve compression is to look at a Coke can (the RED one) separately with each eye. If one perceives the color as more "pink" than "red," make an emergency appointment to see your ophthalmologist.

[Ski]

in reply to: Questions About Uptake Scans, Pregnancy, & Forgetfulness #1074082

First, YES, "ditzy-ness" is definitely a symptom of hyperthyroidism, and sometimes it continues to some degree. Once again, I think ALL of us have identified ourselves as "Type A" in the past, and so we are used to juggling 4 or 500 balls at once. When that begins to be a challenge, we feel as if we are "failing," and that’s tough. When we’re still suffering from hyperthyroidism as well as healing FROM the hyperthyroidism, this is an extremely common symptom.

Your uptake may be low due to the PTU you took earlier (it blocks iodine from reaching the thyroid, I believe), so probably having an uptake done at least six weeks after you stopped taking the PTU will produce a higher number. Bottom line, RAI can be done for anyone, but the lower uptake indicates that they would have to give you much more in order to have "enough" settle in the thyroid. Speak frankly with your doctor about this ~ write down all the questions you have before you get into his office, and make sure you get each one answered to your satisfaction.

If you want to have more children, all I can say is that it’d be best to be HEALTHY and regulated before you attempt pregnancy. The less you have to worry about your thyroid hormone levels, the better. Pregnancy is enough of a strain on your body. Monitoring thyroid hormone levels throughout pregnancy is necessary, but the best position to start from is a good, stable point where you feel good.

[Ski]

in reply to: 2009 Conference? #1074231

I know that in the past, nurses have been able to get continuing education credit for attending the conference.

[Ski]

in reply to: New here, have lots of questions #1074130

Stress can be managed MANY ways, so pick the thing that works for you. Typically we advise people to do what feeds their soul and soothes them. For some, that’s a nice hot bath every night. For others, it’s watching something that makes you laugh uncontrollably. It can also be yoga, acupuncture, group therapy, tai chi ~ ANYTHING that works for you.

All of us have been afraid of weight gain. Please don’t let it stop you from getting treated. The weight loss we suffer when hyperthyroid actually leads to MORE weight gain on the other side, since we lose muscle mass. Do the best you can as you go through the process. NOT everyone gains weight. Well managed levels will NOT lead to an enormous weight gain. Some weight gain is normal, and needed, after being hyperthyroid. We gain back the muscle mass we lost.

It’s hard not to panic when we’re hyperthyroid. We may as well be MADE of panic at that point. Try to laugh about it, and put it behind you in favor of healing.

[Ski]

in reply to: Is GD considered "life threatening"? #1074097

I don’t think it could be considered life threatening in the classic sense ~ in other words, a child with leukemia would clearly be in a life threatening situation, but a child with Graves’ is USUALLY successfully treated and lives a long, healthy life.

[Ski]

in reply to: Questions #1074109

Yep, it’s part of hyperthyroidism to have your legs feel like rubber. If you didn’t feel like that at first, it’s possible that the effects are only showing up now (not sure of the progress you’ve made so far).

When our eyes "seep" (I’m guessing you mean that they are tearing all the time), it is actually a symptom of the dryness that comes from having Graves’. This has more to do with the thyroid disease than the eye disease, because it is a symptom we ALL share, regardless of our level of TED involvement. Our tears become thinner, less able to solve the dryness, and a cycle begins where they continually tear in an attempt to keep some of that moisture on the eye. If you use artificial tears liberally, you can fend off this effect. Use artificial tears, non-preservative, single use drops ~ NOT "get-the-red-out" drops. As often as we need them, we cannot have preservatives in them, because the preservatives will start to cause irritation also.

Think of using drops as heading off pain tomorrow by being vigilant today. When you’re on the computer, a few drops in each eye every 15-20 minutes is NOT too much.

[Ski]

in reply to: New here, have lots of questions #1074128

James, that is a great post.

Christa ~ the fact is that, no matter what you may have read, there has never been a case of someone being "naturally treated" who was able to reduce thyroid hormone levels reliably. I believe, as James does, that taking care of yourself in general, learning how to reduce your stress and treat your body well, will ultimately make the journey better. But some sort of conventional treatment is ESSENTIAL to the process. Perhaps you can minimize the need for meds, perhaps you can go into remission sooner, by paying attention to alternative treatments. That’s GREAT, we encourage health in all respects. You cannot remove the need for meds entirely, at least up front, and when and if you find yourself in remission, you will still need to be monitored.

Make sure your doctor knows every alternative treatment/therapy you are engaged in throughout the process. Some "natural" remedies can actually be harmful, used in conjunction either with each other or with the other meds you take. Just because you can get it without a prescription does not mean it is harmless.

In the days before we had the three options of treatment that we have today, fully 50% of Graves’ patients died from this disease.

Thyroid hormone cannot be adjusted by eating right, exercising and getting stress under control. If there were any truth to these claims, we would be shouting them from the rooftops, we would have ALL preferred handling it that way. I’ve been here more than ten years and never once has an actual human being appeared that could attest to their "natural" treatment working to control their thyroid hormone levels. Never. And I do know many who have tried.

We want you to be safe and healthy. The safest thing is to work on getting your thyroid hormones under control, THEN worry about lessening/stopping the meds. The typical course of ATDs is to start on a high dose to get your levels under control, then back off to smaller and smaller doses. When everything is working together, you may be able to keep yourself healthy without ATDs (the definition of remission). Look forward to that day, but don’t rush it. Please.

[Ski]

in reply to: My flue and hyperthyroidism #1074157

I’m not sure how quickly you will be able to pursue surgery ~ you don’t want to rush into this without knowing who is doing your procedure, and anyone worth their salt may be booked up for a while. In the meantime, give the methimazole a chance to bring down your levels ~ or at least switch to PTU ~ but don’t leave yourself untreated. It is guaranteed to get worse if you stop trying to treat it. As a matter of fact, I’ve heard of surgeons refusing to do surgery on a patient who is very hyperthyroid. It increases the chances of experiencing thyroid storm.

[Ski]

in reply to: TED questions #1074181

Hi Amanda,

You’ve got it right ~ blurry vision is usually as a result of having dry eyes, not really from the TED itself. There is an element of Graves’ that makes our tears less "thick," so we can experience more dryness than other people, just in general. Using artificial tears liberally can help (preservative-free), nighttime gel helps some people, and it also helps to protect your eyes from fluorescent lights, breezes, and other irritants. If you’re already doing all those things and still experiencing dryness, speak with your eye doctor. Chronic dryness can result in injury to the cornea, which is NOT reversible if it gets bad enough. You can have your tear ducts either plugged or cauterized shut ~ it keeps the tears from draining OFF of the eye as much, which helps the eyes stay moist. If you want to explore the possibility, you can have dissolvable plugs inserted so that they’ll just go away in a period of time, and if you didn’t like the effect, you don’t have to do it again. If you like it, you can proceed to either permanent plugs or cauterization.

The cold phase is usually diagnosed in hindsight ~ once it’s been at least six months since any changes (for the worse or for the better), that’s a pretty good sign. Keep in touch with your ophthalmologist. One of the doctors at the conference said he likes to make the appointments with his patients at least a month apart, if changes are not happening often, because it helped him to recognize any changes that may be occurring (even improvement).

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