[Ski]

in reply to: Question About Eye Problems #1073731

TED is a separate but related autoimmune condition where the antibodies attack the tissues behind the eyes and it results in swelling. Since the eyes are in a cone-shaped bone cavity, when the tissues behind swell (either the fatty tissue or the muscle tissue), there’s nowhere for the eyes to go except outward, so that’s the bulging. In some people, the swelling behind the eyes results in the fat & fluids being pushed out around the eye instead, so that’s another way it can manifest.

TED has a "hot phase" initially that lasts anywhere from one to three years (smokers typically experience the longest ranges), where changes are frequent. Afterwards there is usually a period of stability, followed by an improvement, followed by the final, stable state. It’s in that final state that we typically look to surgical correction, because surgery in the hot phase can exacerbate and accelerate symptoms. Still, surgery must be looked at as an option if the optic nerve is in danger of being compressed, because there’s no healing that. Once it’s compressed, the vision in that eye is gone forever, so surgery is worth the risk.

[Ski]

in reply to: LAB TESTS #1073941

Hi Kathy,

We can’t evaluate your test results, that’s for you and your doctor to discuss. Make sure you write down any questions you have (what happens next, what happens if…, etc. etc.), so you come away with everything you need.

[Ski]

in reply to: Newly Diagnosed Today #1073759

Typically ATDs are given at a very high dose, at first, to stop the attack of hyperthyroidism, then the dose is lowered until you find the right "maintenance dose" that will work to keep your levels within the normal range. You may have extended the period of time in which you felt badly, just because you didn’t want to take "so much" medication at the time. It is always best, once you’ve arrived at a decision to take ATDs, to follow the doctor’s instructions. The dose would have been lowered in time, per the regular course of things.

[Ski]

in reply to: Anti-Thyroid Drugs #1073896

I’m so sorry you had to fight for coverage from your insurance ~ their first response to everyone is "NO," to save their bottom line, but this is absolutely a necessity for patients who need it. Unfortunately, by their terms it can look like it’s cosmetic, when it is clearly not. You shouldn’t have even been stuck with half of it, but I can understand being grateful for a "yes," even if it’s only partial payment. The doctor should have the final say, insurance companies just infuriate me.

[Ski]

in reply to: Does anyone have only part of thyroid removed? #1073739

If you leave any active thyroid tissue, it is capable of reacting to the antibodies and making you hyperthyroid again. Conventional wisdom right now is that it’s total removal (but for the "wingtips" with the parathyroids) for regaining health.

[Ski]

in reply to: Planning a tubal reversal and pregnancy… #1073746

Hi Jamie,

I can’t help with the surgery questions, so I hope someone else will jump in if they’ve had a separate surgery while being treated with PTU.

As for the pregnancy, from what I understand, our immune system typically "rests" during pregnancy, in part I guess to protect the fetus (keep the body from thinking the fetus is a foreign object to fight), so you may find your symptoms/levels actually getting better on their own as you progress through a pregnancy. I have not heard of any particular risk of thyroid storm during labor/delivery, but we do hear about a lot of women whose GD symptoms accelerate after delivery (days or weeks after delivery, I mean). Presumably that is linked to the immune system "waking up" again after the pregnancy is over.

This is bound to be a tough road for you in all respects, so do all of your research and make sure you’re in the best possible position to handle ALL of the steps you need to take in order to accomplish your goal. You may want to assemble a team of doctors who are all in touch with each other ~ surgeon, endocrinologist, pediatric endocrinologist ~ so they can come up with the best possible solutions for you.

[Ski]

in reply to: Waited almost 2 hrs for the Endo! #1073752

There is such a thing as transient hyperthyroidism, but a "lit up" scan would typically lead to a suspicion of Graves’. At this point, if your levels are in the normal range, just be grateful for that ~ whatever the reason. Now that you’ve connected with the doctor, you may have an easier time "squeezing in" an appointment in the event you begin to feel really crummy again.

IF what you’re dealing with is Graves’, it is an autoimmune condition, which means that stress may bring on symptoms. Stress stimulates the immune system to protect us, but unfortunately, with Graves’ our immune system partially attacks us as well, so both things happen. It is impossible to remove stress from your life, but if there is ANYTHING you can do to keep yourself from reacting so severely, it will help to minimize your symptoms. I’m not saying you don’t have a reason to "freak out," I’m just saying that if you can short circuit that instinctive extreme reaction, you will be doing yourself a favor. I’m also not saying you should "stuff" your feelings, rather than expressing them, because in MY opinion, that’s part of the behavior that probably got us here. It’s truly a "Zen master" thing, where you learn how to TRULY not be upset, or at least less upset. It is what it is, run some damage control and move on to the next step.

I hope that helps! Sorry things are so frustrating right now. Do something for yourself today. It will help. ” title=”Very Happy” />

[Ski]

in reply to: 2 more subjects on the mind #1073755

Sorry, these would be completely outside the expertise of this group. If anyone has info, please send it by private message.

[Ski]

in reply to: Newly Diagnosed Today #1073757

Hi Kathy,

We try to be even-handed about all the possible treatments, because each of them work and bring us successfully back to health. There really is no "best" way, otherwise two of the choices would have been abandoned long ago. It’s a very personal decision ~ we each have our own biases, and that comes into play. Learning all you can about the treatments is the best possible way to make up your mind.

There is a certain degree of sense in starting with the meds so you can bring your levels back into the normal range, then you get some of your concentration abilities back and it’s easier to decide which of the three treatments you prefer for the long term.

You usually see results pretty quickly with ATDs, but as far as feeling WELL, that can take a little bit longer. At first, it can take our body up to six weeks just to flush out the excess thyroid hormone in our bloodstream, so while the ATD might be working, you may not notice an enormous difference right away. After your levels begin to change, there are adjustments made so you find a maintenance dose that keeps you where you want to be. At that point your body can begin to heal itself from the onslaught of hyperthyroidism.

We have a list of recommended books on the main web page, which you can either order up from Amazon or check out from your local library. My favorite is "Graves’ Disease: In Our Own Words," which is basically a compilation of some of the more common questions and answers from this very BB, as well as some of the GDF bulletins and extra info. It is a comprehensive read on every aspect of having Graves’.

We are glad you found us! And we’re also glad you’ve been successfully diagnosed. That can be the first, very high hurdle for some patients. Once you know what you’re dealing with, it may take time, but at least you’re on the right road.

[Ski]

in reply to: 3rd time diagnosis #1073774

The only organ in the body that takes up iodine is the thyroid, so RAI targets only the thyroid. The part of the RAI that is "flushed out" (not taken up in the thyroid) is a secondary, minor issue.

At our most recent conference, we were told that the bulk of research is being done on diseases that have NO treatments available to patients, so since we have three choices, we are generally relegated to the "back seat," as it were.

There is research being done into the process of autoimmunity and how to short-circuit it, but we were told that the information they get from those studies will only help people who have NOT yet gotten an autoimmune disease. Once we have it, it’s a part of us. The doctor did not hold out hope for going back in time and "un-getting" Graves’. The fibroblasts invade the thyroid and they stay there.

[Ski]

in reply to: Graves vs hyperthyroidism #1073794

Hi lizzycat,

Graves’ Disease is an autoimmune condition that causes hyperthyroidism. Once we have been diagnosed and treated, we are no longer hyperthyroid. The damage is caused in the period of time between becoming hyperthyroid and being successfully treated, and it takes a longer time to heal than most patients are prepared for. I remember when I was first diagnosed, my father’s first comment was "I hear you’re in for a long road with this one." He was VERY right, and I wasn’t prepared for that. Once you know what you’re dealing with, the idea is to learn a lot, do the best you can to become a team member in your own care, and appreciate small improvements.

I’m not sure about asthma-type symptoms ~ the fact that our heart is racing can cause a bit of breathlessness, but if you’re truly feeling as if you cannot breathe, you might want to investigate another cause.

You’re early on in the process, but you’re on the road, which puts you ahead of a lot of other Graves’ patients. You WILL get there! Patience. Hang out here. Ask us all the weird questions that come up. We’ll be here.

[Ski]

in reply to: Hi My levels have changed #1073806

Yes, as your T4/T3 levels come down, your TSH level should rise ~ but it may not be an exact match at first, since the TSH is released (as I mentioned) in response to a running average of your levels, and also because sometimes it is slow to respond after having been so low for a long time.

Lack of sleep will not change your thyroid hormone levels ~ it’s not the best circumstance for your body, but it has no effect on your thyroid hormone levels at all. The sleeplessness should get better as your levels improve. In the meantime, just get whatever rest you can and try not to stress over it (just makes it worse). Remember that laying in your bed and relaxing is nearly as good for your body as real sleep.

[Ski]

in reply to: t4 3.59, TSH 0.006 3 weeks on PTU #1073825

Nuclear plants by themselves wouldn’t be a hazard. The Three-Mile Island accident was one event where nuclear material was released into the air and spread by the lovely spring breeze for at least an hour before the release was stopped. As locals, we were told that there was nothing to worry about, but warned that we might want to avoid drinking milk from local cows for a while (since they would be eating the grass that was potentially affected).

I should point out that I don’t think any potential exposure may have caused my Graves’ Disease. It was a theory my endo mentioned when I was first diagnosed. I think there are at least several elements involved in finally getting Graves’, and the very first thing is a predisposition to autoimmune disease. After that, there are probably several triggers that need to be pulled before the disease shows up. I suppose that may have been one of them, but I didn’t exhibit symptoms that triggered diagnosis for nearly 20 years, so maybe not.

[Ski]

in reply to: Life Situations, Emotions, and Graves’ Disease #1073884

Oh, I feel for you! If there’s any way you can short circuit her "typical" responses, that’d be helpful I’m sure, but I know what you’re saying. If there’s a hint of the idea that you think you’re going to "fix" her, OH NO.

Okay, so don’t start by saying "I’ve been doing some reading" ~ just start the discussion about what you can do to help, in general. Ask if she has any specific frustrations, and do make good on your promise NOT to take things personally. Look dispassionately at what she tells you/asks you, and deal with each thing on its own ~ see what you can and cannot do, what you are and are not willing to do. Sometimes it’s truly as easy as "leave me alone one night a week and let me choose what I do, either alone or with other friends." Sometimes it’s just "please keep things out of my way." You will never know the exact specifics until you ask, and it may be tempting to "fight back" at the suggestions, but keep that at a minimum.

The proof is in the pudding, I suppose, so if you are truly beginning to understand what she’s going through, you may be less likely to take the outbursts personally, and that can keep things from escalating. The two things feed each other ~ she is angry, you get resentful, she gets more angry, and on and on. I know I’m not telling you anything new here, I’m kind of typing as I’m thinking, because I really want to help, and I think setting the context helps.

As far as her doctor saying her levels are fine, that’s GREAT, but if they haven’t been stable for a good, long period of time, she’s still healing. In addition to that, normal is one thing, HER normal is another. You say that she is disinterested in finding out about her own disease, and that’s one more block in your way. You can’t even demonstrate that you know what’s going on, because it might appear that you’re trying to "one-up" her about her own condition. You are in a very tough spot.

I wish I had a magic wand for you to use. I don’t know what I can say to help, because it’s ALL easier said than done, and you’re walking a mine field. Walk carefully. Keep us updated, we’ll TRY to help out! We may have some spouses lurking who’ve come through this okay, so I hope they weigh in with some ideas.

[Ski]

in reply to: Life Situations, Emotions, and Graves’ Disease #1073882

Maybe you can ~ let her know that you’ve been reading up on Graves’, you’re beginning to understand part of what she might be going through, and you’d like to know what SHE needs/wants, if she can quantify that. Keep it open ended, and I’ll bet she fills in the blanks. Just asking will be an enormous step forward, I’m sure.

And by the way, bless you. ” title=”Very Happy” />

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