[Ski]

in reply to: New to Graves, curious about all this #1070507

When we have a thyroid imbalance (in either direction, hyper or hypo), our thyroid can swell up. I have seen people here with difficulty swallowing because of that. Any treatment that brings your levels back into the normal range can relieve the swelling, so it’s time to learn about your options and make a decision.

It’s pretty scary, but a lot of doctors know of all the options, yet will make the decision FOR you and not even let you know you have choices. You can start with medication, which can bring your levels down rapidly, and then you can investigate the other two options, to see if either one appeals to you. In the process, you’ll learn how you feel while you’re on the medication, and how your body reacts, which can give you good information for later on as well.

Very simply put, here are the three options for treating hyperthyroidism due to Graves’ Disease:

ATDs (anti-thyroid drugs). These come in two "flavors," PTU and methimazole. They each work slightly differently, and there are some other differences. You can take methimazole once a day, you need to take PTU several times. PTU tastes awful. Methimazole has no taste. PTU is recommended for women who are either already pregnant, or who are pursuing pregnancy soon. You take these meds in a rather high dose at first, bring your levels into the normal range, and then figure out which (usually very low) dose will maintain your levels within the normal range. Do this for a couple of years, then you can stop taking them to see if your body has achieved remission. About 40% of patients achieve a successful remission the first time. Remission is NOT "cured," but it is defined as a period of time when your thyroid hormone levels remain normal, and stable, without taking any form of ATD or thyroid hormone replacement. Antibodies can flare later on and bring symptoms back, which would give rise to another decision on how to treat your condition.

RAI is radioiodine. This is a radioactive isotope used to destroy the thyroid. We take a rather small dose (thyroid cancer patients receive doses that can be up to 10 times the doses we typically get), and the thyroid takes it up, which destroys it. It can take a little while, months perhaps, until it’s completely gone. After your levels drop into hypothyroid ranges, you start taking thyroid hormone replacement and find your normal level that way.

The third choice is surgery to remove most, or all, of your thyroid. Sometimes the tips are left behind in order to continue hosting the parathyroid glands, which parasitically rest on the tips of the thyroid. Those regulate the calcium in your body, so risking damage means a new problem to consider after surgery.

This is FAR too simplistic to make any decisions from ~ each of these treatment choices carry risk, and it’s impossible to say exactly how you will react to any one of them. Sorry about that ~ just when you were feeling like you had it all under control, right? ” title=”Wink” /> This is why we suggest starting with meds, because it’s not a permanent solution, so can be "un-chosen," unlike the other two options.

Visit often, read much, get some of the recommended books on our list, either buying them online or finding them in the local library. One of my favorites is "Graves’ Disease: In Our Own Words," which is culled from posts on the old bulletin board, plus some specific information about particular issues (children with Graves’, family issues, work issues, finding a new doctor). This is complicated, you’ll be recovering for a while. Take your time and find your footing.

[Ski]

in reply to: TED- and eye pain #1070559

It can happen that the eyes are affected differently from each other with TED. Have you seen an ophthalmologist?

[Ski]

in reply to: GD Treatments #1070581

Issues with your eyes may be related to Thyroid Eye Disease, not directly to Graves’ or your thyroid. It’s a related disease, but doesn’t react to thyroid treatment. You may want to find an ophthalmologist and get a baseline appointment.

[Ski]

in reply to: What doc to see? #1070575

It’s a special kind of torture, not being able to just get on with the treatment, isn’t it? I am SO sorry this is your path. Hopefully you’ll blaze a trail for all those coming afterward. It does look like they say "here’s what it is," but "I don’t know what it is." If you had a doctor who was helping you, even if it’s far away, perhaps you can figure out some "virtual" way to have your daughter continually evaluated and treated by that doctor ~ have tests done locally and transmitted to that long-distance doctor, do consultations over the phone (or Skype, even) and have them prescribe back to pharmacies local to you? I wish we could do more to help!

[Ski]

in reply to: im so tired of my mom saying… #1070518

Oh dear, I am so sorry you have to deal with this! It’s common for family members to think we can just "get over it," they say "don’t let it keep you down," etc. etc. I think if she really understood the mechanics of this disease, she wouldn’t be making comments like that ~ but of course, if you try to let her in on the information, she may just interpret that as you making another "excuse." I don’t have a magic answer to help her understand, I wish I did. If there is ANY way you can get information in front of her to read, try to find things that will resonate with her ~ either things other people have said that mirror how you feel, or technical data that explains what your body is going through right now. It’s ALMOST a shame that we don’t look worse when we feel so badly. Almost. ” title=”Wink” />

I know it hurts. It might help just to remember that she’s saying those things because she doesn’t understand, and if she did, she’d act differently. I hope she would. Parents can get twisted up in all kinds of tortured logic, and they think they’re doing the right thing.

I will keep hoping the two of you can come to a better understanding, somehow. In the meantime, {{{{{{{{{{{{{{{{{{hug}}}}}}}}}}}}}}}}}}}

And I hope you can find some peace. Strength, my friend.

[Ski]

in reply to: What doc to see? #1070571

The possibility exists that this isn’t related to her Graves’ Disease too, so if you can, get someone to explore with you until it is figured out and solved. There was a heartbreaking story on the news last night of a local boy who had confusing symptoms ~ his mother actually had specialists look her in the eye and say "we may never know what’s causing this, so get used to him being in a wheelchair and losing ability every day." She did her own research, came up with something that was likely, found a doctor who would "go with it" and try the medication proven to help that condition, and her son is now able to get up and play basketball with his friends. Pretty horrifying how quick multiple doctors were to let them go on with a shoulder shrug "can’t figure it out, too bad for you." I thought that was their job!? Anyway, off the soapbox for me…. I’m just saying that if you continue to get those kind of comments from the doctors who are "caring" for her now, then no matter the distance or expense, you need to find a doctor who will work with you to figure this all out, even when it gets complicated. You all need relief.

[Ski]

in reply to: Pregnancy #1070531

It does seem odd, if her T3 and T4 are normal ~ our best advice would be to stay in close contact with the doctor, and make sure she has her blood tested quickly if she feels hyper symptoms (I’m sure she recognizes them!). Sometimes the hormones generated in pregnancy can affect the thyroid hormone levels, but you’d think it would be affected "rationally," if you know what I mean ~ one would drop and the other would rise. If this dose increase doesn’t bring her TSH down, and yet doesn’t make her hyper either, that’s truly weird. I would want to go visit an endo or general practitioner to see about other causes.

[Ski]

in reply to: GD Treatments #1070578

You DO have a good chance of still losing that 30 pounds, if you are extremely careful.

Many of us have said "I have no symptoms," and after we’re treated, we see that we actually did. The changes come on slowly, and over time it just appears as if we need less sleep and we get more accomplished ~ super me! ~ but the fact is that we’re kind of "set at 100mph." If your doctor found abnormally low levels of TSH in your bloodstream, the highest likelihood is that you are hyperthyroid, and the vast majority of hyperthyroid patients are this way due to Graves’. With your family history, your doctor is likely considering it a slam dunk. There are more elements to the equation that can help you confirm the conclusion your doctor has made ~ the uptake/scan gives one set of data, and you can get antibodies tested as well. For some people, they are hyperthyroid due to a transient condition, thyroiditis, which typically resolves completely at the six-week mark. If you continue being hyperthyroid past six weeks, chances are this is what you’re dealing with. The ATDs can actually get you dialed into a normal, stable level of thyroid hormone rather quickly, and you can get back to planning the wedding, even exercising. Exercising is not a great idea while you’re hyperthyroid.

Get a copy of your blood test results, and if you can, get a historical copy (years’ old) of your thyroid hormone levels, so you can see if there’s been fluctuation, and how far your levels have moved. The extra advantage to having prior levels is that you’ll know where your normal level WAS, and you can aim for that during treatment.

[Ski]

in reply to: pregnancy #1070586

Plenty of Graves’ patients have had healthy children, even with all the things you must take into consideration. Gather yourself a medical team ~ high risk obstetrician, pediatric endocrinologist, and your regular endocrinologist ~ and get everyone understanding where you stand and what the plan is. PTU, in small doses, has been shown to be okay for pregnancies. If your levels have been normal for a while, your body is in the best possible state for pregnancy, given your Graves’ diagnosis. Normal, stable levels allow the body to heal from the hyperthyroidism. Typically, they find that the antibodies retreat somewhat during pregnancy, because the entire immune system slows down in order to protect the fetus, so you may find you need even less medication than you think to maintain normal thyroid hormone levels throughout. Frequent monitoring of your levels is a really good idea, and can also help you feel confident that everything’s okay.

You may want to consider having your antibody levels tested along the way as well ~ we’ve had some recent posts by mothers who have seen their antibodies affect their newborns. Higher antibody levels during pregnancy seem to correlate with a higher risk of this particular event, so the doctor would know to check the baby ASAP at birth and treat immediately if that has happened. If it does, it’s a transitory effect and is resolved in six weeks’ time.

I know you weren’t expecting this little blessing, but congratulations! I was a surprise to my Mom too. ” title=”Very Happy” />

[Ski]

in reply to: New and had my RAI this morning #1070599

The things you need to be concerned with right now are these: first, for the first 2 days or so, your body is excreting any RAI that was not taken up in your thyroid. You needed it. Your pets don’t. Protect them from your saliva, sweat and urine (pretty easy, I’m guessing), because that’s how it is being excreted. Mostly in the urine. Secondly, you do want to limit radiation exposure to the animals. Radiation’s effects are as a result of a lifetime of accumulation, not a sudden event, but the animals are very small, and even a little exposure could be a very high level for them. Try to keep them away from your neck, specifically, for a few weeks at least, and about six feet away from you in general during these first few days. The half-life of the treatment form of RAI is 8 days, so every 8 days, the amount that’s left in your body is half what it was to start with. Calculate your dosage through these 8-day cycles, and you’ll be able to figure out when the remainder is so tiny that it’s really immeasurable. At that point you can stop worrying about keeping them away from your neck. You won’t "zap" them if you bring them close to your neck though ~ my doctor told me to think of time and distance. If it was going to be for some length of time, keep my distance. If it wouldn’t be for long, I could get close. You’ll need to manage that carefully, I know. Animals are not so easy to explain things to. ” title=”Very Happy” />

[Ski]

in reply to: Hypo 10 years after RAI? #1070603

He should definitely be checked, that’s a lot of change. Perhaps it’ll help him to know that thyroid hormone replacement is not a "drug" in the same way he’s probably thinking. It’s chemically identical to what our thyroid would put out, if it could. It is not processed in the liver, like traditional medications ~ it’s absorbed in the intestine and used in the bloodstream. Without it, the body can undergo a similar level of harm as remaining hyperthyroid long term. It’s certainly possible for his thyroid to have failed completely at this point, if not due to the RAI he had (which is certainly possible, even now), then just because Graves’ patients tend to experience thyroid failure more often than the general population. It produces slow changes, which leads to a sort of denial that something’s going on. There are so many symptoms that go along with being hypothyroid ~ find a list and show it to him. When he recognizes that he’s regularly experiencing several or more of these symptoms, he may open his eyes. Ironically, one of the symptoms of hypothyroidism is "not caring about things." I remember that one vividly. I am someone who cares deeply, about just about everything, and it was really startling to find myself completely apathetic. So you may need to fight that as well, in order to get him treatment.

[Ski]

in reply to: 6 weeks post RAI and normal T4 #1070610

Oh my, Rhonda! Thanks for the update! I’m glad you’ve got normal levels now, that’s a milestone! You may still have some fluctuation ahead though, so brace yourself. The RAI can continue to work for up to six months, though definitely at a lesser level than the first six weeks. Keep an eye on your symptoms so you can get tested as soon as you suspect you may have gone hypo. The fact that your endo is leaving town is not great, but if you have a relationship with either (or both) of the other too, you should be able to get them to respond to your blood test results without having appointments. Have your doctor leave a standing order for blood tests in place, and ask for either (or both) of the other doctors to receive copies of your results. Also ask for a copy to be mailed to your house. It’s your body, your results, and they have to send them to you if you ask. That way you are all informed ASAP, and prescriptions can be called in for you. At first, it’s probably a good idea to get your thyroid hormone replacement in 30 or 60-day supplies, because you may find that you’re changing doses pretty quickly. After you’ve hit some stable dose, one that keeps you normal for at least 4-6 weeks, then you’ll have to start waiting for about 6 weeks after each time you change a dose, because your body will need that long to metabolize it properly and for the TSH to test accurately. So, depending on how long your doctor is away, it may not make a really big difference. Still ~ just make sure the information is easy to get for everyone, and you’ll be well taken care of.

[Ski]

in reply to: confusing? recently diagnosed..anyone?? #1071399

Typically, if you’re going to achieve remission on ATDs (either PTU or methimazole), you need to continue on some dose of the medication for up to two years. Those who stay with it longer have higher success rates for long term remission.

The recent FDA bulletin about PTU was mostly a caution for children taking PTU. Both have the potential for the same side effects, but PTU has led to liver failure in a small percentage of children, while methimazole has no history of liver failure. Liver enzyme imbalances can happen with methimazole, but failure has not been recorded, so in an abundance of caution, considering even the smallest chance of liver failure, PTU is now not suggested for use by children.

Discuss this with your doctor and see what they think about each of the medications. PTU has the most downsides ~ you must take it several times a day, it tastes foul ~ but those are OUR troubles, the doctor typically has "suggestions" to deal with that successfully. ” title=”Very Happy” /> Again, which medication you use CAN be up to you, so discuss with your doctor, and if you feel more comfortable trying one than the other, make your wishes known, and ask for a prescription for the one you want.

[Ski]

in reply to: Newly Diagnosed #1070751

The weight you’ve lost has not been good weight to lose, and skipping your meds would only make the situation worse, so please don’t take that step.

We lose muscle mass when we are hyper, and that’s terrible. Our body needs strong muscle mass because that burns calories, even at rest. When we lose muscle mass, we can gain fat, even eating the way we always have, because our body doesn’t have the ability to metabolize all those calories as it did before.

First, when the weight comes back on, do not panic. Some of those pounds consist of the muscle mass returning, but it is not strong yet, which is what you need. Just make sure that you have authorization to exercise, and start strengthening the new muscle mass. You’ll see, over time, that you may have gained the pounds back, but your figure can remain much the same.

If you need one more reason not to panic over the weight gain, remember that your heart is a muscle, and while hyper, you lose mass there as well. That can result in lifelong issues.

First priority: get well. Second priority: work on your weight. It has to be that way.

[Ski]

in reply to: New to Methimazole #1070617

Hi, and welcome!

I’m not well versed on supplements that may help you avoid liver problems while taking methimazole, but if you find anything conclusive on the subject, please do share. The only advice we can give you is to say that all of your practitioners should know ALL of the medications and supplements you are taking. Pharmacists are generally a very good source of information as to interreactions between drugs and supplements.

The percentage of patients who have trouble with liver enzymes is pretty low, and the lower the dose you take, the less likely the problems are ~ plus, if a problem begins, you can reverse it just by stopping the med, which is comforting. Once you’ve gone through the period of getting your levels WAY down, your dose will probably drop considerably, so if you don’t have trouble at first, that’s a good sign. I’m sure your doctor will be testing the liver enzymes at each blood draw, so you’ll certainly know if something crops up.

[Author]

Posts