[Ski]

in reply to: Recently diagnosed with Graves #1071776

Hi Tonya,

Let’s see ~ as far as side effects, methimazole rarely causes a reduction in white blood cell count, and in some people can cause liver damage. These are usually tested for regularly as you take the medication, and from what I understand, while the side effects can crop up any time, if they do not occur quickly after starting to take the med, there may be a better chance that you will not experience them. In addition, you typically end up taking a rather small, "maintenance" dose after you are under control, and the lower the dose, the less likely the side effects are as well. Oh, and if you do get a bad side effect on methimazole, you can try PTU and see if that works better for you.

You DO need to take the medication consistently, or you’re asking for trouble. It needs to build up in a well-managed way in order to do the best job it can for you.

The percentage of uptake is not equated directly to "how sick you are." It really only gives the doctors an idea of what dose of RAI they would give you, if you want to go with that, and the pattern of uptake helps to confirm Graves’. The true test of what’s going on with you is your thyroid hormone levels, measured with blood tests.

Weight gain at regulation is not necessarily a given. You may need to rebuild muscle mass lost while hyperthyroid, so that’d be good weight gain anyway. Talk with a physical therapist once your doctor okays you for exercise.

As far as your eye ~ first, see an ophthalmologist for that, if you haven’t already. The methimazole is not fully proven to help with that, but there is some evidence that it may help reduce the antibody activity overall that brings on the bulging. What we do know is that methimazole is not proven to make it any WORSE, which RAI might do. It’s a small risk, with RAI, but the possibility exists.

Keep asking questions, we’re happy to help!

[Ski]

in reply to: What’s next #1071796

Welcome Kimmer,

We’re glad you found us! Let us know if you have questions that aren’t answered by browsing around ” title=”Very Happy” />

[Ski]

in reply to: Help-Exercise, still tired, brain fog and loss of sex drive #1071857

When you first start taking replacement thyroid hormone, it can definitely take a while before levels build up enough to feel normal. Remember our watchword, as Graves’ patients: PATIENCE. Everything relating to this disease takes time (except, of course, the beta blockers, which actually do nothing to help our disease, just mask our symptoms. Figures. ” title=”Very Happy” />). Thyroid hormone levels should not be moving rapidly, ever, because that can throw your body into a real tailspin. For that reason, when you go hypo after RAI, it’s a little bit of a dance. You’ll be getting closer to normal all the time, may even dance around it a little bit, but it takes some time.

When you first start taking the replacement hormone, chances are that the RAI is also still doing further damage to your thyroid (unless it was completely destroyed in the first six weeks ~ which can happen, but dosing is typically imperfect, and some doctors "low dose" on purpose as well). This means that your replacement hormone dose is an educated guess, based on your latest blood test (really, the only thing they can use), and yet, as you begin taking it, your thyroid function may still ebb further, meaning you’ll need a higher dose. I was told that RAI does the bulk of its work in the first six weeks after dosage, but continues making SOME changes in the thyroid for up to six months. After the first six weeks, the changes are far more subtle, but they can generate a need for more thyroid hormone.

After you start taking replacement hormone, you should wait six weeks before having your blood tested. Yes, it actually takes that long for the body to fully metabolize the dose, and for the TSH to give a truly valuable, useful reading that the doctor can work from. When the blood is tested again, if you are found to be slightly hypo or slightly hyper on the dose you’re taking, then your doctor will typically only change your dose by ONE dosage level. Again, we don’t want to make radical, rapid changes. Then you need to wait another six weeks, and change by one dose level again (if needed). You can see that just taking this a few doses out, you’re already at 18 weeks from the first dose. Remember, please, that at every point along the way, you are feeling better and better. You are approaching YOUR normal, departing from imbalance and fluctuations. It doesn’t mean you feel AWFUL all the time, but you do need to take the time to get to your normal. Once you’re very VERY close, you can actually change by half a dose, by taking two doses next to each other, swapping days. In other words, you could take a .125 Monday, a .112 Tuesday, back to .125 Wednesday, etc. etc. It doesn’t make your body feel up one day, down the next. Our body metabolizes and "averages" our blood levels between the doses. At first, after a dose change, I DO typically feel that way ~ up one day, down the next ~ and that lasts for a week or two. Then I kind of "settle" into feeling the same each day. Let me warn you, it is ALWAYS blood tests that will show where you stand. Our feelings can be radically off base, proven by many many patients I’ve known. I swore I was hypo, a thousand times, and kept getting tested. Nope, nope, nope. I just felt that I was slowing down, and after a long period of time hyper, I just KNEW that was too slow. It wasn’t. I’ve known people who felt fine, and blood tests showed they were extremely hypo. Always rely on the blood tests. After you’ve been level for a while, you can probably always rely only on TSH, but while you’re dialing in the right dose, ask your doctor to check T4 as well, so you can see the relationship between the two. Even at that six-week-change schedule, it’s rather rapid for TSH, and knowing your T4 levels can really help.

And finally, remember that the hyperthyroidism has done a real number on your body. When your levels arrive at normal, and stay there a while, that’s when your body can finally use some of its resources to start getting well, repairing the damage that’s been caused. So give yourself time. PATIENCE. ” title=”Wink” />

[Ski]

in reply to: Artificial tears and eye makeup #1071903

I use artificial tears with my makeup on during the day ~ I use Cover Girl Remarkable mascara, because it’s waterproof but it also washes off well with good, creamy/soapy facial soap. It doesn’t run or sting. I use a crayon-type eyeliner, which also minimizes those things.

I no longer do the whole base/blush/eyeshadow stuff, if that makes any difference for you. I just use eyeliner & mascara around my eyes.

Oh, one more thing ~ use them just one drop at a time, then let that settle completely, then put in a second. It keeps the running to a minimum. You can do three or four total, if you want, but just give your eyes some time to absorb it in between.

[Ski]

in reply to: 13 years later and now eye problems????? #1072011

I would echo both pieces of advice ~ go and see that second ophthalmologist, your sight is worth it. In addition, there’s no need to stop the artificial tears if you find they are helping. Without the artificial tears, you can suffer chronic dryness, which can cause corneal damage or corneal ulcers. If these conditions get bad enough, they can cause sight loss all by themselves. Just the fact that you have Graves’ thyroid disease (even though it’s under control) means that your tears are probably thinner, less helpful to your eyes, and the artificial tears can be very valuable. As long as you use the drops without preservatives, there’s no need to stop using them ~ they cause no harm and can keep you much more comfortable.

It IS possible that what you’re experiencing right now is not TED, so keep that in mind. It sounds like the ophthalmologist was rather dismissive, which puts us off right away. The question is, If it’s not TED, then what IS it? It IS their job to find out. The tests that the ophthalmologist recommended sound as if they have to do with testing for the particular antibodies associated with TED, so definitely follow up with the GP and have those done. Just remember, if the tests do not prove up TED, go back to the ophthalmologist, point out that you are still having problems (take pictures when the symptoms are at their worst, and perhaps even keep a symptom diary just for your eyes), and ask for further evaluation to determine how you will get relief.

[Ski]

in reply to: Weight Gain #1071918

The responses you get may be interesting, but I can tell you that there are people who used ATDs who have gained no weight, people who used RAI who have gained no weight, and people who have used either of the two and have gained weight, in varying amounts. What I’m trying to say is that there is no direct relationship between what other people have experienced and what YOU will experience under the same circumstances. We all have different habits, different reactions to both the condition and treatment for the condition ~ everyone is very unique, with Graves’.

Personally, I tried methimazole and seemed to gain weight every time I walked through a room. I finally had a successful RAI treatment, and I think I may have gained a total of 20 pounds afterward, but it wasn’t very quickly, and overall it didn’t really change much as far as the clothes I wore ~ I think it was the lost muscle mass returning to my body, which is a GOOD weight gain, and it happens to everyone after our levels return to normal. You need that muscle mass, because it burns calories even at rest. After it’s strengthened, you have a better chance of feeling like you did prior to treatment.

[Ski]

in reply to: Insurance Issues and I need Help #1071963

I’ve sent a private message with a link that may help ~ I hope you can find some resources!

[Ski]

in reply to: Being Euthyroid #1071968

I’m not sure how common, but there are definitely cases of TED and hypo, rather than hyper. It’s part of the reason behind the "renaming" from Graves’ Eye Disease to Thyroid Eye Disease. TED is connected to thyroid conditions in general, not always Graves’.

[Ski]

in reply to: hair loss #1071939

The hair loss has to do with the imbalance in her thyroid levels ~ the body removes resources from the hair and nails while the body is undergoing this "emergency condition," in order to preserve resources for the rest of her body. It’s true, once her levels get into the normal range and stay there, the hair loss should stop. The body will react this way when the levels are imbalanced AND when the levels are rapidly changing up or down, whether they’re heading toward or away from a healthy level. It doesn’t indicate that she is sicker, by any means.

For now, figure out a way to give her a haircut that does not require lots of brushing. A short, layered cut can be good, if she’s got some natural curl/wave. The more you have to work with her hair, the more you’ll notice the hair loss. The longer the hair is, the more you’ll notice the hair loss. It will come back, and since she’s in the process of getting the levels right, she’s headed in the right direction. Still, under normal circumstances, thyroid hormone levels would never change so rapidly, so that’s why the body goes into something of a panic.

[Ski]

in reply to: Feel lucky despite having Graves #1071949

Shirlee,

Thanks SO much for this post! Your story is so uplifting ~ interesting, too, that you say the pain you felt with cancer didn’t even compare to your mental anguish with Graves’. That does seem to be our biggest complaint ~ the hardest thing to deal with, and the last thing that other people understand.

Keep smiling, I’m glad you’re feeling better!

[Ski]

in reply to: This is all new to me #1071960

It’s great you can see it that way ~ as a good experience. Knowledge is definitely power! Glad we could help.

[Ski]

in reply to: I wonder if Bro has it, also…:( #1071977

You’re definitely right to have his levels tested ~ all things considered! If it IS Graves’, then he’s ten steps ahead by all the work you’ve done learning about it, truly. You also will have saved him some certain misery as the symptoms increased to the point where he WOULD see a doctor. When is that with a man, anyway? I hope it’s not Graves’, but you’re wise to mention it to him.

[Ski]

in reply to: RAI and cancer risk #1071971

The testing form of RAI, the one used in a scan/uptake, is a non-damaging isotope of RAI. It causes no damage and also is given in such tiny amounts that it requires no precautions like an RAI ablation.

There have been studies done on RAI patients for the last 60 years, and no increased risk of cancer (except a TINY TINY rise in bladder cancer occurrences) has been found. Drinking lots of water and urinating often during the first 48 hours after treatment minimizes even that tiny risk.

[Ski]

in reply to: Weigth Gain & Radioactive Iodine #1071980

This is probably the single most common question we get, so you can get a LOT of information from a search, if you like.

The bottom line is that a lot of weight gain is not a given, by any means. Taking good care of yourself, watching what you eat, and exercising when you are allowed to, is all important. Knowing it’s a possibility is extremely valuable.

However, I must make a comment about the language you use ~ "I have been told that RAI is the best treatment for me." There are many doctors who have that opinion. There are many patients who would disagree. There are three potential treatments for Graves’ Disease: First, ATDs (anti-thyroid drugs), which you must take for a period of up to two years in order to see if they successfully put you in remission of the disease ~ they WORK for that two years, but they have the potential to put you into remission, meaning that you can have normal thyroid hormone levels for a period of time WITHOUT taking them, after you’ve taken them for two years; second, RAI; third, surgery. The choice, barring any obvious restrictions against any of them due to your medical history, is YOURS to make. It can be difficult to figure out, while you’re hyperthyroid, which is why our typical recommendation is to try ATDs first. Get your thyroid hormone levels down, get your thinking capacity back, and do some research to decide what YOU prefer. The doctor’s preference is fine to know, it’s good to have a really in-depth discussion about the reasons behind the doctor’s preference, but if, after you’ve heard everything the doctor has to say, you still feel as if you’d prefer a different treatment, that is for you to decide. The only thing you simply cannot decide is to have NO treatment, because hyperthyroidism is very dangerous, and needs to be corrected as soon as possible.

Now, back to the weight issue ~ ALL of us have the potential for weight gain, and here’s why. When we are hyperthyroid, we suffer loss of muscle mass. This isn’t just weight loss, it’s BAD weight loss, it removes tissue that helped us metabolize calories, even at rest. That means our balance is off afterward ~ eating the same amount and type of foods we ate before will produce weight gain, until that muscle mass returns AND we strengthen it. So at first, the weight gain (after we return to normal thyroid hormone levels) is a GOOD THING. We need that muscle mass. But we must strengthen it, or again, we do not have the calorie-burning element in place. We are advised against exercise while we are hyperthyroid (partially because it accelerates loss of muscle mass, but also because our heart rhythms can be irregular), so that makes it difficult and sometimes brings a little weight gain as well. Make sure you get clear instructions on what type of exercise is okay for you right now, and at each step along the way.

Just be careful, and realize that while you are undergoing treatment, you MAY have to go shopping at Goodwill for clothes that feel big enough for you. Buy them bigger than you need, so you aren’t fighting against a waistband all the time (nothing can depress a person quicker), and buy them at Goodwill so you don’t CARE that you are having to buy bigger clothes. Another reason for buying them bigger is so you have freedom of movement for the times you might be feeling good and wanting to exercise a little bit. Once your levels are normalized, you’ll be able to tackle the weight issue and win. ” title=”Very Happy” />

[Ski]

in reply to: RAUI?? #1071983

Typically, anything over 35% at 24 hours is considered elevated, but the pattern of uptake is also an important element of the test. The raw percentage doesn’t always translate to thyroid hormone levels (in other words, your percentage may be slightly elevated, but your thyroid hormone levels may be WAY out of range, or vice versa). The uptake is generally used to confirm a Graves’ diagnosis (using both elements of the results, percentage and uptake pattern), and also to give the doctor some idea of the dose of RAI that would be required (if that’s what you want to do). In your case, your thyroid has taken up 45% of the iodine you ingested 24 hours ago, so let’s say the doctor wants your thyroid to take up 5 millicuries for RAI treatment (randomly chosen number, I know NOTHING about the reasons behind numbers for dosing) ~ they’d need to give you about 11 millicuries, because 65% of the dose would NOT be taken up.

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