[Ski]

in reply to: Help with numbers – my doctor is no help #1071384

They’re headed in the right direction, and that’s good. Symptoms can persist even after levels hit normal, so that’s not unusual. As your levels remain stable, your body will BEGIN to heal from the onslaught that is hyperthyroidism. Look for small improvements. Something that’s better today than it was yesterday. After a while, you’ll find that you’ve stopped looking because overall you feel pretty good. And one magical day, you might notice that you never even thought about Graves’ that day. It can happen! ” title=”Very Happy” />

[Ski]

in reply to: Synthroid -questions…. #1072454

We don’t have antibodies that suppress TSH (our antibodies actually mimic TSH), but TSH does take a while to respond to changes in T4 levels, so at first we should definitely be adjusting meds on the basis of both TSH and T4 tests to make sure the doctor can see the entire picture. With some Graves’ patients, the TSH stays low even after it ought to have risen, and it was once believed that the pituitary was somehow "asleep" due to the extended period of hyperthyroidism, taking longer to "wake up" than the treatment allowed. So again, dosing based on T4 levels was far more accurate in the first six months or so. After that, TSH is the right level to use, as it is more sensitive and allows the doctor to identify small adjustments that need to be made. If your doctor does not see both levels in your blood tests, and you’ve just had RAI or surgery, ask the doctor to add T4 to the lab order next time. It’s easily done for the lab, and a cheap test to run. It’s worth it to be more accurate with your levels.

[Ski]

in reply to: Will it end? #1071594

Remember that your dose of replacement hormone needs to be "dialed in" to find YOUR normal point inside the normal range ~ whatever dose the doctor decided upon at first was just a guess, and after that it’s up to you and your doctor to consult and find the point at which you feel best within the normal range. The range is enormous, simply because people all around the world feel normal at varying points within the range. If you don’t have thyroid hormone tests from before you were sick, then keep a symptom diary and talk with your doctor after keeping it for a month or two to discuss the possibility of adjusting your dose slightly to find out if it helps with your symptoms. Many of the symptoms we experience while hyper also occur while we’re hypo (sleeplessness and anxiety being two of those), so blood tests have to be at the core of your decision-making. We can’t rely on our feelings when they could be pointing us in the wrong direction.

Once you find YOUR normal point, and your levels stabilize, I think you’ll see why you fought to get there. Being off by even a tiny bit can have a big effect on you over time. It’s kind of like pointing a ship just one degree off. You will not end up in the right place.

[Ski]

in reply to: EYE ISSUE, OSTEOPENIA, FALLING HAIR and DIET QUERIES #1071419

Diet changes have never been proven to change thyroid hormone levels, so your improved results would be more likely due to the ATDs successfully treating your condition. TSH doesn’t move much until T4 levels have been changing for a few weeks, so it’s chemically impossible that what you ate one day would be the reason for a different TSH lab result the following day. That said, however, a better diet is ALWAYS a good idea for your body and your own healing. If it makes you feel better, no one’s going to tell you to stop. We just can’t say it has any effect on your thyroid hormone levels based on any reliable scientific studies.

Your hair is another issue entirely ~ when our thyroid hormone levels shift for any reason (even from unhealthy levels to healthy levels), the body interprets this as an emergency event, because in the course of a normal lifetime, our thyroid hormone levels would not be jumping all over the place as they do while we are ill. Under these "SOS" conditions, our body removes resources from the areas it deems non-essential. The first to go are our hair and nails. For that reason, your hair may fall out a bit whenever you change doses of any med intended to deal with your thyroid hormone levels. The hair loss will stop as your levels stabilize again at the new levels. At this point, you’re talking about moving in very small increments, so the hair loss should not continue for very long. Maybe a few weeks, then it will stop, and it will just be a little hair loss, nothing major. In the meantime, be gentle with your hair. Less brushing, more "tousle," if you get my meaning.

I hope that helps!

[Ski]

in reply to: genetic? Could i be… #1071427

Just keep an eye on them ~ since this is one you definitely know about, you can look for all the symptoms and hopefully catch it early if it comes on. Thyroid hormone tests are the only way to know for sure (as well as the uptake/scan to confirm GD patterns), but frequently changing thyroid hormone levels are something to consider as well, since it seems that we can have symptoms that come and go for years beforehand. A thin build doesn’t necessarily point to hyper, and a heavy build doesn’t necessarily point to hypo ~ look at other symptoms of hyper or hypo to add up before you worry too much. Heat intolerance, tremors, loose bowels, those would be pretty convincing for hyper. Lethargy, depression, lack of interest in things, those would be pretty convincing for hypo. Make sure you get copies of their test results and keep a file, because the levels could be staying in the normal range, but if they are moving much, it should be looked into further. The best advice we can give you is to recommend testing when you are really suspicious, and at other times, just ask the doctor to tick the box for TSH anytime they’re drawing blood for another reason. It’s easy to add on, and it’s an inexpensive test to run, for your own peace of mind.

[Ski]

in reply to: genetic? Could i be… #1071425

Your sister’s story was certainly frightening ~ there’s no way we can guess what happened with her though. I’ve never heard of such a thing before ~ it’d be a great question for her pediatric endocrinologist, if you still have contact, or for any pediatric endocrinologist. It may be completely unrelated to everyone else’s conditions.

The only concern I can address is that no, you didn’t do anything specifically to be one who got Graves’, at least that we are aware of right now. The most recent research has found a genetic defect that is present in every person who has an autoimmune disease. It is present in people who do not have autoimmune diseases, but it is never missing in people who DO have autoimmune diseases. You could argue that those who have this genetic defect and do not have an autoimmune disease are simply those who are yet to acquire one. Within families, what passes through the generations has been proven only to be this particular likelihood to get ANY autoimmune disease. There was one on both sides of my family trees ~ one with Graves’, one with rheumatoid arthritis. There’s every chance I could have acquired either, or yet a third autoimmune disease. Right now, it isn’t clear to researchers why each patient ends up with their specific autoimmune condition. Theories abound ~ perhaps one area of your body was weakened by something else, perhaps the body part includes its own "trigger," perhaps stress plays into it, etc. etc. etc. None have been absolutely proven. One of our members’ doctors told her it was most likely a genetic predisposition, with one (or several) external triggers. That’s probably the best way we can describe it right now.

[Ski]

in reply to: Synthroid -questions…. #1072452

If you truly have an issue within your body related to the conversion of T4 to T3, then yes, Cytomel can help. If you do NOT, Cytomel can create all kinds of problems for you. Your doctor will likely want to confirm any difficulties your body may have in conversion before using Cytomel. A friend here took Cytomel, felt fine for about six months, and then experienced a recurrence of all the troublesome hyper symptoms. Once she stopped taking the Cytomel, all of those symptoms disappeared. So even if you feel well at first, you may not continue to be helped by Cytomel unless you really need assistance with T3 specifically.

[Ski]

in reply to: Orbital Decompression DONE! #1071429

Thanks for the update, Tracy! I’m so glad this eye is healing quickly, and I’ll be hoping for the best with the second eye! It’s probably a very good thing that they focused on the situation in hand and postponed the second eye, I’d much rather have that kind of doctors myself. ” title=”Very Happy” />

[Ski]

in reply to: New guy saying hello and then some. #1071473

First, I wouldn’t say it’s a given that you have Graves’ because you are experiencing many of the symptoms ~ really, the only definitive way to know is through blood tests for your thyroid hormone levels. One of the reasons we have a hard time being diagnosed is that our symptoms mimic many other conditions. So it’s possible that you are not dealing with Graves’ yourself right now.

If your son was given the medication that was supposed to destroy his thyroid, he wasn’t given "too much," it was meant to destroy his thyroid so that he could control his levels with thyroid hormone replacement pills. Many of us take these. They are not medication in the classic sense that you may be thinking ~ they are chemically identical to the T4 thyroid hormone our thyroid released when it was functioning ~ so they do not create a risk of toxicity (except when our dose is too high, which will re-create the hyperthyroidism we’re correcting. If that happens, a lower dose is prescribed to address the imbalance). We recently discussed the prices of replacement hormone and found that buying them in bulk (100 pills at a time) and not even asking for insurance coverage ends up being very cheap. I think right now those 100 pills will cost less than $40, no matter what brand he is taking. There are many ~ if he has achieved some kind of stable, normal levels on one, he should stick with that brand. It makes it easier to stay balanced, over time. He should only need one pill per day, so that’s more than 3 months’ worth of replacement hormone for a very reasonable price.

It’s possible that’s not the medication he is taking, but if it is (the generic name is levothyroxine), I hope that info helps.

The "bots" visit our site so they know where to send people who search for Graves’ Disease at their sites (yahoo, google, ask.com, etc. etc.). It just helps people find us.

[Ski]

in reply to: And so it begins… #1071553

Just a quick lesson about TSH and T3/T4 levels. T4 is the thyroid hormone that is released by the thyroid. It is inactive in the bloodstream and is converted into T3 when the body needs it. T4 levels are usually pretty constant, given normal conditions. In GD patients that are actively hyperthyroid, T4 levels will be elevated. T3 levels can rise and fall during the day, depending on your needs, but sometimes a chronically low level or chronically high level can indicate a problem.

TSH is Thyroid Stimulating Hormone, which is released by the pituitary gland in response to the T4 levels it "reads" in your bloodstream. When things are fine, both are in their respective normal ranges. When we start to have higher levels of T4 in our bloodstream, the TSH value will go down, to "instruct" the thyroid not to release so much hormone. Unfortunately, our GD antibodies mimic TSH, so the thyroid still thinks it’s being told to release more, more, more. So the TSH continues to go down in an effort to adjust the thyroid hormone levels, and the T4 levels continue to rise as the thyroid releases more and more hormone based on the antibody attack. The pituitary reads an average of the T4 levels (think over a few weeks’ time), so the TSH level can be slow to respond as T4 levels change dramatically after treatment or during the effort to stabilize your levels.

Does that help, Leah?

[Ski]

in reply to: Newly Diagnosed #1071489

Hi Zelda,

Lashing out is another troublesome symptom ~ as you say though, nice to know this is why, if that helps much. Try talking with your family members when you are feeling relatively calm to explain, and figure out some kind of "safe word" they can say to you to lighten the moment. You must promise to lighten up when it is said. ” title=”Very Happy” />

[Ski]

in reply to: Cardiac CT #1071479

Hi Cathy,

Unfortunately, for this I know nothing. My cholesterol levels have always very good, despite the fact that I do not exercise enough. I just wanted to respond and let you know I’m thinking of you. Go ahead and be overwhelmed for a bit. Nothing wrong with feeling it all right now when it comes up. Just know in your heart that you’ll do what is necessary and you’ll get through this because (forgive the plagiarism) "you’re good enough, you’re smart enough, and doggone it, people like you!" Quoting Stuart Smalley, of course. ” title=”Wink” /> I wish I had a magic wand for you….

[Ski]

in reply to: Newly Diagnosed #1071485

It does get better, promise. It takes a while though ~ and during treatment you may go hypo briefly, which does the same thing but in a different way. Make a notepad your best friend. I’m a legal secretary and I had some similar concerns, but found that religiously writing everything down really helped me to keep up.

[Ski]

in reply to: sed rate? #1071510

Emily,

Please let us know what your doctor says about this test ~ what he’s looking for, and what either result would mean to him (inside or outside normal range, I mean). I’m interested to find out.

[Ski]

in reply to: Will it end? #1071589

Beautifully put. Thanks, M. ” title=”Very Happy” />

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