[Ski]

in reply to: Anyone that tried natural methods/diet? #1073666

Actually, there is a lot of research being done right now. As soon as results are published that give us clear evidence, we’ll see them here. The goal is to provide information that is [i:3bd124it]proven [/i:3bd124it]to help. Interesting theories are great, but if they aren’t proven, we can’t promote them as treatment.

We would agree that RAI is pushed far too often, without giving patients the choice. One of this foundation’s main goals is to get information to patients before they are treated. Unfortunately, many patients just do what the doctor says, because they believe the doctor knows best, which we know is NOT true in this particular case. The patients who take an interest in their own care are usually found here, because they are looking for help. Those who take the doctor’s advice as gospel and allow themselves to be led down the garden path are not looking for help from us, because they think they’ve found it at their doctor’s office. THOSE are the people we need to be reaching, and we’re working very hard on achieving that goal right now.

[Ski]

in reply to: Anyone that tried natural methods/diet? #1073664

There is no question that we can be active in our own care. You can choose to pursue any course of healing/therapy you’d like. If your thyroid hormone levels are out of range, however, you must address that imbalance along with whatever else you’re interested in pursuing, and you must get those levels back into the normal range as soon as you can.

There is a great deal of research going on in this regard, and we will ultimately benefit from it. As soon as something has been peer-reviewed and proven to work, our doctors will know about it, and so will we. Just make sure your hormone levels are normal, and stable. You can’t really, truly heal your body until then.

[Ski]

in reply to: after RAI, going off meds, healing myself #1072869

It is synthetic hormone, but it is chemically identical to the hormone your thyroid would produce. In addition to that, we take T4, which is not the active form of thyroid hormone. The body converts T4 to T3 when we need it, so indeed, we do have access to "more" as our needs change. The goal is to achieve a steady blood level of T4 for the body to access as necessary.

It is not likely that your thyroid is making enough thyroid hormone to sustain you, or else you would not have gone hypo and needed hormone replacement.

I’m sorry to sound so negative about this, and I’m sorry you were rushed into RAI. It’s one of the things we constantly battle here, because patients are routinely deprived of their right to choose. The fact is that you are past that point. There is no more possibility to "heal" the thyroid. It’s gone. It’s the same thing as if you had removed it surgically. There’s no going back to heal it any longer.

[Ski]

in reply to: after RAI, going off meds, healing myself #1072866

If you have already destroyed your thyroid, that ship has sailed. Discontinuing thyroid hormone replacement will be fatal. Thyroid hormone replacement is not being "on medication" the rest of your life, it’s giving your body the thyroid hormone that your healthy thyroid would have produced. Without it, your body will have nothing with which to function, and body systems will shut down.

[Ski]

in reply to: GD but instead of wt loss – have wt gain #1072899

I have known a few people who gained while hyperthyroid ~ for one of them, it delayed her diagnosis for years, because the doctors took one look (even with her eyes) and said "couldn’t be Graves’, you’re gaining." Terrible stuff. It’s unfortunate that Graves’ isn’t the same for all of us, because it’d be FAR easier to diagnose, treat and recover from. The symptoms we can experience vary WIDELY, and just adds to the difficulty in getting help.

I need to ask one thing ~ beta blockers really just mask the symptoms, the drugs we usually take to reduce thyroid hormone levels are methimazole or PTU, and those are the ATDs (anti-thyroid drugs) we refer to. Beta blockers are atenolol, propranolol (lots of –olols), and we usually only take those until our levels are normal, then wean off them. Did you really take only beta blockers as treatment? Have you had your thyroid hormone levels checked lately?

Not sure what to say about your skin condition ~ it hasn’t happened to me, and I haven’t heard it mentioned here before, but there’s a chance that someone else has had a similar experience and they’ll enlighten us all. ” title=”Very Happy” />

[Ski]

in reply to: Bad two days with Graves #1072892

Oh, we understand, believe me! GD is a special kind of torture, we’ve all been through it, and I don’t think there’s anyone who will tell you they liked it. I didn’t mind SOME of the hyper symptoms, because as a working mother with two small children, I found that everything in the house was getting done (for a change). ” title=”Very Happy” />

You will probably have to wait a while before your symptoms get a whole lot better ~ taking the meds IS helping, but you won’t be able to feel that until the initial excess thyroid is flushed out of your bloodstream, which can easily take up to six weeks to happen. I wish I had better news for you, but there it is. A lot of recovering is a waiting game ~ look for TINY improvements as the days go by, nothing dramatic. You won’t go to sleep feeling rotten and wake up like Snow White with birds chirping. Does not happen. Baby steps, little changes ~ look VERY hard for the improvements. It can really help our attitude to find what’s GOOD about today.

[Ski]

in reply to: My history and a question #1072895

Hi Melissa,

It’s extremely rare, but we have had people post here before who have had thyroid tissue regenerate to some degree following surgery. Odd that you have "random" thyroid tissue traveling in your body, you are special, aren’t you? ” title=”Wink” /> Again, it’s heard of, but extremely rare. Any uptake is unusual for someone who thought they had no thyroid tissue left, so the GD antibodies could be affecting you again. Any tissue is susceptible to antibody attack. Have you done labs to see where your blood levels are?

[Ski]

in reply to: HELP IM AFRAID MY 17 YEAR OLD SON WONT TAKE MEDS #1072908

Please let us know how it’s going. I know how scary it is, and how helpless you must feel being far away.

[Ski]

in reply to: HELP IM AFRAID MY 17 YEAR OLD SON WONT TAKE MEDS #1072906

If your son truly has both Graves’ and Hashimoto’s, these are two autoimmune diseases that do the opposite thing. It means there are two sets of antibodies in his bloodstream ~ one that forces his body to be hyperthyroid, the other that forces his body to be hypothyroid. There are several people here who have both. In this case, what happens is that the antibodies kind of "take turns" being dominant. Typical advice, under these conditions, is to destroy the thyroid and stop the rollercoaster ride, then use replacement thyroid hormone, which the antibodies can’t affect. What meds has he been taking? The behaviors you mention are typically associated with the hyperthyroidism associated with Graves’, so my guess is that he was on methimazole or PTU. If he is going hyperthyroid, it’s very dangerous (which you know), and his father would be justified in taking him to the ER for a blood test to determine how hyperthyroid he is. It might scare him into compliance with the meds, and it would also bring his condition to the attention of the medical professionals. Your husband should bring up both names, Graves’ and Hashimoto’s, to prompt a test for both antibodies while they’re there as well.

I understand you’re in a panic, and this is a really difficult time. If your son makes it really difficult for your husband, he could call in the authorities to help get your son to the doctor. The tremors will probably be enough to convince them that he needs medical attention.

[Ski]

in reply to: PTU vs Tapazole? #1072933

Hyperthyroidism steals muscle mass mostly in our large muscles ~ upper arms, upper legs, chest & back.

[Ski]

in reply to: PTU vs Tapazole? #1072931

I know it seems extremely illogical to end up so sick when you’ve spent so much energy and time being healthy, but it really has nothing to do with that, unfortunately.

My mother-in-law felt the same way, she’s lived her life with the goal of only eating what’s right, doing what’s right ~ and was diagnosed a couple of months ago with breast cancer. Same situation ~ it has nothing to do with the way she’s lived her life. It’s another issue entirely.

Exercising while you’re hyper can actually accelerate the muscle loss, so I would be VERY careful if I were you. I’m shocked that all of your doctors have had the same advice, to keep working out as you’ve been doing. I would recommend seeing a physical therapist and being evaluated for muscle strength and mass. You could be putting yourself into a deeper hole by exercising, as weird as that sounds.

[Ski]

in reply to: I feel so helpless #1072911

I will be thinking of you and praying for you both. You’re right, it just doesn’t seem fair! Is there no simple anti-nausea medicine they can put him on?? Even if nothing’s wrong (according to them ~ but I must question their judgment), at least he could rest….

[Ski]

in reply to: Pretibial Myxedema #1072919

A dermatologist should be able to help you be more comfortable ~ I’m not sure there is anything you can do to resolve it completely, but you can relieve the discomfort with steroid creams and occasionally with steroid shots. There are some messages on the old BB you can hunt up with more specific directions (I believe using the steroid cream, then covering with saran wrap overnight, was one of the most popular/successful suggestions), but a dermatologist is your best bet for treating this. I haven’t experienced it, but I know some people who have, and my understanding is that it can come & go, so you’ll want an ongoing relationship with the doctor.

[Ski]

in reply to: Having Surgery in two weeks, and am nervous!! #1073422

Thanks for the update! It’s great to hear that the tremors have stopped, I hated that part! What does the doctor say about the bruising? I didn’t have the surgery, and I don’t remember hearing about that from others, so I’d be interested to hear how that progresses for you.

[Ski]

in reply to: PTU vs Tapazole? #1072929

Neither drug is more likely to give side effects than the other, but at first, finding the best dose for you can be a challenge. I had to take Tapazole for a short period of time, and I felt like I was gaining weight just walking through a room. It was different than any other time in my treatment, so I do understand.

Are you sure your doctor is okay with all the exercise you are doing? When you are actively hyperthyroid, that can be extremely dangerous, and counterproductive.

The most important thing to be paying attention to are your thyroid hormone levels. When you go hypothyroid, weight gain is a possibility. When your levels are normal, things should start to even out. This isn’t something that will resolve in a day, a week, a month, or sometimes even a year. Brace yourself for a LONG period of treatment, adjustment, etc. Getting your thyroid hormone levels down is the first goal, then finding the right dose to maintain a normal level is the next goal. Step by step, we get there, but patience is essential. None of us had the time to be sick. But we were. And you are. And you need to take the time to learn everything you can about what’s going on in your body right now, to protect yourself.

Taking nothing, or pursuing no treatment at all, when you are hyperthyroid, can be deadly.

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