[Ski]

in reply to: GD and Emotions..we are new to GD #1070288

TSH responds slowly ~ it can take a few weeks to "catch up" and correctly balance the T4/T3 levels ~ so it’s not surprising that it’s still suppressed.

All the emotional issues are VERY common for all of us ~ that’s why I say buckle in, this is definitely a tough ride. Some people get help from antidepressants, but that can be tricky too. It can be very personal (which antidepressant works well for someone), and it can also take a few weeks to fully take effect in the patient, so again, something to talk over carefully with all of her physicians. If it helps, it’ll be a godsend for all of you. If it doesn’t, it’s just one more complication. It’s worth trying, I feel for you COMPLETELY ~ having a teenage Graves’ patient earns you a very large medal.

Please do not treat her as though the emotional outbursts are something she should be able to control all by herself. She can’t. It’s chemical, it is largely out of her control for now. Things ought to ease up as her levels improve, but again, no magic moment when she will go from ill to well. In the meantime, try and find things that she enjoys, that she is able to do, and focus on those things. Perhaps she’s been meaning to read something, or would like to paint, or play an instrument. Things that will get her out of herself and yet don’t overstress her body right now. I think of them as things that "feed our soul."

Give her some breathing room, and let her set her own pace for a little while. Every little piece of relaxing she can do is golden, and will help her body get through this. If she can’t play sports with her friends, invite those friends over for some movie-watching after the sports are done. Keep her connected, that’s important too.

When I was hyperthyroid, I was amazed at how angry I could get, over nothing. In hindsight, after the rage left me, I would wonder what the big deal was. It’s literally like a freight train taking over our body, and it can be scary for us too.

Just take it easy, take it slow. Nothing will happen quickly, but you’re well on the way, so look for small improvements in each day. If she yelled at a volume level one decibel lower today, celebrate. ” title=”Wink” />

[Ski]

in reply to: Curious about treatment options… #1070223

The beta blocker is truly just to make you more comfortable ~ it does nothing at all to treat the thyroid ~ so you may not want to hold off taking it. It can keep away the tremors and it also protects your heart from the arrhythmias that can come along with being hyperthyroid. You’ve likely been given a very low dose, compared to people who take them for heart problems or high blood pressure. Just keep in mind that going off them needs to be a "weaning" process ~ at a very low dose, that takes about a week ~ but quitting cold turkey can make the symptoms recur again, more powerfully, so just do it gradually & all’s well. The doctor will be able to give you instructions on the best way to lower your intake when it’s time.

I just realized there was an old comment on this thread about smoking and Thyroid Eye Disease (TED) ~ the answer is that smokers are more likely to have the more severe TED symptoms, and the course of their TED symptoms is likely to be longer. But don’t sweat the TED stuff unless it starts happening to you. You may want to find an ophthalmologist and have a baseline appointment so you know who to see in the event changes begin. It’s nice to have someone who knew the "before."

[Ski]

in reply to: GD and Emotions..we are new to GD #1070286

The RAI may not show signs of obviously working for six weeks or more ~ not sure if you want to jump into a second dose this quickly. It can take six weeks just for the excess thyroid hormone to leave her bloodstream ~ the excess that was in her body on the day of RAI ~ so it’s extremely rare to see a hypo result this soon anyway. I realize that we want everything to be fixed yesterday, but speak frankly with ALL of your daughter’s doctors (GP, endo, radiologist) to make sure you’re giving the first RAI a chance to work. My dosing doctor told me that it does the bulk of its work in the first six weeks, but still continues to work on the thyroid for up to six months. You are in a spot, not being able to use ATDs, but this second dose of RAI would also need time to work, so you may want to just buckle in and wait a little longer to see if her levels begin to drop.

The symptoms will not magically disappear once her levels hit normal ranges, by the way. Once her levels are normal, and stable, then her body will begin to heal. Each day is a tiny, tiny bit better than the last. It’s not a radical shift from one day illness to the next day wellness.

Her situation is doubly complicated because of her age ~ reproductive hormones are wacky, and they affect thyroid hormones, though I don’t think we have a clear picture of how. Most of us women notice an increase in symptoms around our cycle, and in puberty/adolescence there’s just no telling what may happen next.

Please let us know how you are all doing through the process!

[Ski]

in reply to: Curious about treatment options… #1070219

If you want to be done with it and move on, surgery is the quickest, but of course there are definitely risks to surgery ~ in addition to the usual, there is a small possibility of nicking or paralyzing the vocal cords, and it’s possible to injure the parathyroids, which regulate calcium levels in the body. Finding a surgeon who does a lot of these specific surgical procedures with very low complication rates is the best possible scenario going in.

As far as a swollen thyroid, that’s usually from an imbalance ~ the thyroid swells when we’re hyper OR hypo ~ so normalizing your levels ought to bring the thyroid back to a normal size, no matter which treatment you choose. Well but of course, surgery to remove it would remove all the swelling immediately. ” title=”Very Happy” />

The eye disease takes a completely separate course, but RAI has the potential to "temporarily worsen" symptoms of thyroid eye disease, so if you have bad symptoms of TED, you would either choose a different treatment or take prednisone for a few weeks around the RAI ~ prednisone carries its own risks though, so one more thing to consider. These are things to discuss with your endo and ophthalmologist before treatment.

TED, in its worst form, is extremely rare, so try not to stress over that. It typically presents within a year (before or after) of Graves’, but can be separated by many years in some people. Sorry I can’t be more reassuring.

ATDs can be effective, and quick, and in about 40% of patients they can trigger a remission that may last for years. Remission is, by definition, temporary, but it can help for a while and give you an opportunity for more time with your "real" thyroid functioning. Some people have a hard time adjusting their levels reliably with ATDs, which would lead to another decision-making process.

It’s an extremely complicated decision, and I would only urge you not to make the final decision too quickly. When we’re hyperthyroid, we can lose perspective in many ways, and it’s good to wait until your body is calmed somewhat, as well as waiting for time to go by to help you adjust to the idea that you now have Graves’ and will always have Graves’, no matter what you choose for treating your thyroid.

[Ski]

in reply to: family member newly diagnosed #1070229

Everybody is so right! Try to remember this is chemical ~ there is no such thing as "keeping a lid on it," believe me, I know. I am THE most easy-going person on the planet (well, maybe runner up), and I found myself completely apoplectic over the most idiotic things when I was hyperthyroid. The thing is that you are probably right, this has likely been "brewing" in him for some time, so he may have decided that he’s fundamentally changed as a person, and it’ll take a while before he begins to realize that it was NOT just him, it is his condition.

Excess thyroid hormone can take up to six weeks to flush out of the bloodstream, even while the patient is taking ATDs (anti-thyroid drugs), so that’s just the first "waiting game" you both will need to play.

You’re smart just to get out of the area when your husband loses his temper and it’s frightening your toddler.

You’ll come out the other side of this, I know you will. Patience. It’s a long road. Learn all YOU can, and you’ll be able to help him more, even if he is in denial.

[Ski]

in reply to: Graves vs Hashimoto’s how do they know? #1070204

The antibodies for Hashimoto’s and Graves’ act differently, but they actually can exist in the same person. Hashimoto’s is another autoimmune thyroid disease, and those who have both Hashimoto’s and Graves’ are VERY special. ” title=”Very Happy” /> The antibodies "take turns" being dominant, so you can find yourself hypo during one period of time, then spiking to hyperthyroid during other periods of time. For that reason, typically the advice for people who carry both sets of antibodies is just to destroy the thyroid and go on replacement hormone, so you avoid the constant fluctuations into the extremes. That can be just as dangerous for your body as long term imbalances in either direction.

Justin is right as far as Graves’ and the uptake ~ if your entire gland is taking up thyroid hormone, and taking up a high percentage, that’s a conclusive result for Graves’.

[Ski]

in reply to: Very stressed out, but there’s hope… #1070235

I’m glad you found us! We’ll be here to listen, always. My kids were pretty small when I was first diagnosed (5 and 6), and we got through it ~ you will too. As with everything, give them information that is age-appropriate, and you’ll do just fine. My worst days were before I got the right diagnosis, that was scary for all of us. Once I knew what it was and how I planned to deal with it, it was much simpler. Kids are resilient. They can deal with a LOT. Just make sure you keep them in the loop. Keeping secrets from them is even more frightening than the truth, I guarantee it. Tell them you’re not well, you’re sick right now, but you’ll be treated and eventually you’ll feel much better. Make sure you let them know it’ll be a while. Funny, I still have their drawings on my wall "Get Better Soon Mom." Those papers are over 10 years old. Amazing. You’ll get here too, I promise. ” title=”Wink” />

[Ski]

in reply to: running with untreated hyperthyroidism #1074052

I’m sorry it looks like you’ll be joining our group (sorry that you must go through this, I mean), but I’m sure glad you found us before you did something that could’ve hurt you! Wishing you a speedy recovery ~ with Graves’, that is never soon enough, but I hope you’re feeling better soon, at least. ” title=”Very Happy” />

[Ski]

in reply to: Weight gain during Graves disease #1071004

I think it’s particularly telling that they use the words "may" and "unclear." No matter what they suppose, no one knows for sure, unfortunately. It also appears that they’re talking about people who gain while hyperthyroid, which is far rarer than patients regaining pounds they lost while hyperthyroid.

[Ski]

in reply to: Question about blood tests #1070309

This is a common question, because of the way the levels work in the body and how they are tested. Here’s the basic info: your thyroid hormones are T4 and T3. T4 is released from the thyroid and then it is converted to T3 when your body needs to use it. T4 is what you are taking in your replacement hormone. TSH is released by the pituitary gland in response to the T4 and T3 levels that the pituitary gland senses, and sent to the thyroid as "instructions" for releasing thyroid hormone. For that reason, TSH levels are actually opposite to the thyroid hormone levels. If your thyroid hormone levels are too high, the TSH levels will drop, which is the pituitary gland trying to communicate with the thyroid to tell it to release LESS thyroid hormone. When your TSH levels are high, that’s a communication from the pituitary gland that the body needs MORE thyroid hormone please. When we have Graves’, the antibodies mimic TSH and make the thyroid think it’s being asked to release more, more, more T4, no matter what the actual level of TSH is in the bloodstream. Once we have no working thyroid any more, the thyroid cannot react to the changing TSH levels, so we need to check them ourselves and our doctors need to adjust our replacement hormone accordingly.

So yes, lowering your dose of T4 should raise your level of TSH, and lower your levels of T4. The reason TSH is tested most often is that it is a more stable level. When our levels are fluctuating rapidly, we should test both T4 and TSH to make sure we’re getting a full picture, but when we’re down to testing annually, TSH is a better level to be testing because it works as kind of a "running average" of weeks and weeks’ worth of T4 levels, and gives a more precise level to work against.

I hope that helps! I mean it when I say this is a common question ~ I actually had a nurse practitioner mess up the relationship and nearly adjust my replacement in the wrong direction!

[Ski]

in reply to: neding some answers #1070250

Having had RAI, it’s not surprising that your uptake percentage is much lower now. Unfortunately, that is not the measure of how sick you are. Your thyroid hormone levels are the measure of how sick you are, and an extremely high T3 level is something to be concerned about. T3 is very volatile ~ it’s the active form of hormone that our body actually uses, so it can fluctuate rapidly, changing several times a day, but there is still an upper limit. Beyond that limit, you are definitely hyperthyroid. T4 is the inactive form of hormone that the body converts into T3 when needed, and more often that is the level that is tested (along with TSH) to find out where you stand. Did you get those results as well?

It’s not very common to have continuing issues with hyperthyroidism this long after RAI (unless you’re just taking too much replacement hormone), but if you were not given enough RAI to fully destroy the thyroid, then the small amount of tissue remaining has the potential to react to the antibodies and make you hyper yet again.

The doctor would have to tell you exactly what "lumpy" means to them. I can’t really say. I could guess, but no one wants that. ” title=”Wink” /> The newest scan should help the doctor explain that.

[Ski]

in reply to: What are normal t3 and t4 levels #1070270

The CAT scan and MRI results are likely more difficult for you to get, and they probably won’t help you, personally, figure out where you stand.

Headaches can be a symptom of Graves’, or they can be associated with Thyroid Eye Disease, which is another autoimmune disease that commonly comes along with Graves’ (it’s the "eye-bulging" disease).

Not sure whether your facial swelling might be related to GD ~ it depends on a lot of different factors.

You can research meds several places online ~ you may want to start with Wikipedia and then follow the related links.

[Ski]

in reply to: GD and Emotions..we are new to GD #1070282

” title=”Very Happy” /> Oh, it does my heart good to see all this support!!

I just wanted to add that the emotional problems DO subside over time, there IS a light at the end of the tunnel. The problem is that it’s not as easy as regaining normal thyroid hormone levels and then BAM, all better.

Hyperthyroidism affects literally every cell in the body, and left unchecked it can potentially cause damage in every cell in the body. So, once the thyroid hormone levels are normal, and stable for a period of time, THEN the body can BEGIN healing. It’s like a hurricane passing through ~ after the wind dies down and the rain stops, is everything okay? Why NO, the car is still in the palm tree and the house windows are all broken. Roughly put, if you were hyperthyroid for, say, six months before your diagnosis, it could easily take six months AFTER your levels are normal and stable for you to feel "normal." That doesn’t mean you’re miserable all that time ~ you’re always heading in the right direction, better all the time, closer every minute ~ but people around you should be prepared for that kind of time before you can go back to life "as usual."

The emotional changes are the toughest to manage, I think. I’ve always liked Jake’s favorite method for dealing with what we call "Graves’ Rage." He would find himself in the midst of a rage (literally, it comes on like a freight train), and he would change what he was yelling, to "I LOVE YOU! I DON’T WANT TO YELL AT YOU! PLEASE UNDERSTAND I CAN’T HELP THIS!" In addition to putting the focus in the right place, sometimes it just broke everyone up to see that apoplectic face saying "I LOVE YOU." Have talks about these episodes (when they’re not happening that moment), and see if you can decide upon some "safe word" to say so that everyone knows the difference between times when the person is actually upset about something, and when the Graves’ Rage has begun. I think that’s another complication ~ once people understand we have this "Rage," they sometimes believe they can dismiss ANY emotional comment.

It’s all very complicated. Anyone who gets to the other side right alongside us deserves a medal. ” title=”Very Happy” />

[Ski]

in reply to: Thank God for GDF (new to GD and GDF) #1070255

Make it a snickerdoodle. ” title=”Wink” />

I really, truly wish you luck. You sound like someone who is devoted to her, and I hope she recognizes that. I know it’s what she wants, because it’s what every woman wants.

You tell the story so well ~ maybe you need to show her your post. Have you said this to her, this clearly? You may be surprised at her reaction. Naturally, she’s got to be willing to really see it (it’s so easy to THINK we’re looking, when we’ve been in a longterm relationship), but if she IS willing, I think you might just see a light go on over her head.

[Ski]

in reply to: What are normal t3 and t4 levels #1070268

Each lab has slightly different methods of testing and that results in slightly different ranges of normal ~ you should be getting copies of your test results so that you can keep track of them. You care more about you than the doctor does (obviously!). Given your doctor’s seeming hesitation to actually fill you in on what’s going on with you, I would say that it’s time for you to go on a research mission and find out everything you can about Graves’ and the treatment you’re on. Make sure you are visiting sites (like ours) that subscribe to medical standards of accuracy, because there are a LOT of sites out there pushing bad information. Look for the professionals, the American Thyroid Association, for instance. We have a couple of links on the NGDF.org website, they can help you get started.

The range of normal T3 and T4 levels is really quite large, because different people feel normal at different points along the range. It’s not as simple as saying "oh look, they’re in the normal range, I’m fine!" We need to find OUR normal, not just get into the normal range.

This all takes some time, and then it takes time to heal from the hyperthyroism ~ AFTER our levels are normal and stable. So brace yourself. But definitely educate yourself. Do a search on this board for topics you’re interested in ~ I know there’s a lot of good information here.

Ask us any questions you have as you go through the process, we’re here to help!

[Author]

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