[Ski]

in reply to: Does this sound like Graves to you? #1063653

” title=”Very Happy” /> I smile because I met someone rather similar along my journey ~ a new co-worker who told me she had Graves’, shortly after I was diagnosed, and it turned out I already knew more about it than she ever had or would. I was also somewhat perturbed that this complicated process was going on within her, and she knew very little about it. After a few conversations I figured out her course of treatment, but it was pretty incredible to hear what her impression was about the whole process. I gave up trying to help, because as far as she was concerned it was no longer an issue. She thought she had come to the best point possible, and that’s fine. I can’t say for sure what’s happening with your friend, but I can tell you that there are many, many thyroid disease patients who have an incredibly fuzzy idea of what’s gone on with their bodies. I think for some people it goes "too far" for them to truly absorb, and when they’re not well, it just make it harder to be interested in anything other than their desire to feel better.

[Ski]

in reply to: Questions about Ted #1063673

Oh, and I have definitely not heard anything to suggest that overmedication of T3 can have any affect on when or how (or if) we get TED. One of the major research points for TED is trying to figure out its genesis. That’s simply not known yet. It has not shown any relationship to thyroid hormone levels being out of whack, in any case. Patients sometimes present with TED more than 20 years after they’ve been successfully regulated in terms of thyroid hormone. It’s a pretty capricious disease, very difficult to pinpoint a specific cause in any case, because it appears to happen differently for just about everyone.

[Ski]

in reply to: Questions about Ted #1063672

Just one point ~ the antibodies associated with TED may or may not be the same as the antibodies we have that create Graves’ hyperthyroidism. That’s still under investigation. The logic would suggest that the antibodies must be different in some way, as antibodies are *supposed* to operate as a key to a specific lock. In other words, antibodies that help us fight off chicken pox can’t "morph" and begin curing a flu virus in our body, so it would make sense that autoantibodies would operate in the same way, and be very specific to a certain tissue. It is true that the antibodies for Graves’ and TED seem to appear together in many people, so maybe they’re the same, or maybe they’re just related, or maybe they’re somehow co-dependent on each other. Right now we just can’t say.

[Ski]

in reply to: I waswhen does actual healing process begin #1063694

Just one point to add ~ when our levels are controlled, it means we have found our correct spot within the normal range, and we’ve been stable at that spot for a while (at least a few weeks, better as time goes on). It’s only then that the true healing begins. Keep in mind that the attack lessens as the levels come within the normal range, but it’s still important to find your best possible spot. If you have prior thyroid level tests (before you were sick), that may give you some idea of what to aim for.

[Ski]

in reply to: Diet Support #1063702

You sound like a very smart, very rational lady who has done her homework and is on the right track. ” title=”Very Happy” />

I wish you luck in your efforts ~ the only caveat I’ve heard regarding food is that if your thyroid remains functioning, you should avoid seaweed/kelp products, because they contain enough iodine to increase thyroid hormone levels and increase your discomfort. The body creates thyroid hormone from iodine. Other foods have iodine in them, but nothing else that I’ve heard of has a proven and dramatic effect on thyroid hormone levels. Eating healthy is your best course of action. You may want to experiment to see if you have sensitivities to specific foods or food groups, just to keep your body calm and balanced. That has more to do with your own personal chemical makeup, not really the Graves’ antibodies, but paying attention to keeping your body comfortable overall can certainly help.

Glad you found us!

[Ski]

in reply to: 2 RAI rounds…now TT…Help… #1063737

If your doctor believes that your inability to find a stable level of thyroid hormone is due to remaining thyroid tissue that is fully functioning, I would just hope that you’d have another uptake scan to make sure that’s true before having surgery. If it’s true and you do have remaining thyroid tissue, then any antibodies in your bloodstream could mess with your thyroid hormone levels, and removing the thyroid would take that possibility away. If it’s not, then there may be something else going on, and that should be investigated. An uptake/scan should give you confirmation at least, which would be comforting prior to having surgery.

As far as the antibody levels, now that is probably the holy grail of Graves’ research ~ why, why why do they rise and fall, and how can we control that? As far as I know, we haven’t got that information yet. We do know that when the antibodies are present, we can sometimes keep them "quieter" if our system is kept in a quiet state overall. In other words, when we have violent reactions to things in our life, we stimulate the immune system, which usually jumps into action by activating the antibodies we’ve developed against disease during our lives. In a normal person, that’s like rallying all the troops to figure out what’s going on and fix it. When we’ve developed antibodies that attack our own healthy tissues, those are also activated, and that increases our worst autoimmune symptoms. Unfortunately, we can’t always control what’s going on around us, and violent reactions are unavoidable, at least to certain situations. To the extent we can, we need to hold ourselves steady, but also allow ourselves to be human, and just understand the consequences. So when we’ve had a very tough day, or really bad news, we might want to be extra gentle on ourselves that night ~ limit other activities and things that will take more resources. But as far as the levels of antibodies and controlling their rise and fall, the science is still lacking. They’re working on it, I can tell you that, but in the meantime, we just need to manage what we can. I do hope you find some success in your treatment soon, and I’m so glad you found us. We’re having a conference in San Diego in a couple of weeks ~ it’d be great if you are able to join us!

[Ski]

in reply to: HELP!! I feel like I’m losing my mind!! #1064847

Just wanted to send a quick note about sleep ~ it’s important to do whatever you can to get rest, but try not to get too anxious about it, because that can begin an emotional insomnia that is much harder to solve than the physical "revving up" from Graves’. Keep in mind that laying in bed and being still is *nearly* as good for your body as actual sleep. Do what you can to take advantage of all the natural sleep suggestions ~ you know, no caffeine or alcohol in the evening, develop a sleep routine with a hot bath or shower, make sure your room is dark and quiet (no TV to "help you relax," it’s actually a stimulant as well, what with the frequently changing images and brightness), and, if you find yourself getting anxious, just go ahead and get up and do something quiet (reading, for instance) until you feel drowsy again. If there are parts of the day when you are able to nap and you have a good place to do that, take advantage.

Above all, keep in mind that this is chemical, it will improve once the imbalance is corrected, and you’ll get through it. Everything Graves’ is helped by a Zen-like attitude, so do what you can to cultivate that.

Wishing you luck! Glad you found us.

[Ski]

in reply to: Is this true? #1063760

James touched on this, but I just wanted to further clarify ~ there is a genetic component to autoimmune conditions that must exist before anything can trigger the beginning of the disease process in us. There is a "defect" that doctors have found to be common in all patients with autoimmune diseases, and it is hereditary. Not every patient with the defect has an autoimmune disease, but every patient with an autoimmune disease has the defect. This means we have the predisposition within us, and then stress and/or other triggers can conspire to begin the disease process. That’s where the research is right now, to see if they can short circuit the beginning of the disease process, and if they can identify specific triggers. All very early on in the research process. Bottom line though, once the disease process has begun, we are ill, and there’s no going back. In addition, we are slightly more likely to present with a second autoimmune condition, so it’s a good idea to talk with your doctor about that. Sometimes we attribute all "illness" symptoms to Graves’, when it could actually be another condition that we need to address in a different way.

[Ski]

in reply to: MORE INFO ON TED #1063803

I didn’t have many of the TED symptoms, but I did have the swelling of the eyelids ~ it was the first symptom that sent me to a doctor to start figuring things out, as a matter of fact. It largely subsided once my thyroid hormone levels got better. I did end up having some slight proptosis, nothing spectacular, but my eyes looked different for a while. My eyes HAVE gone back to the way they originally were, for the most part. MANY patients have that experience. We might not see many of them here, since they don’t perceive any lingering problem.

[Ski]

in reply to: hyper to hypo #1063780

Make sure you tell your doctor about every supplement and vitamin you are taking ~ they have the potential to interact with your medication (or each other), and some can accumulate to toxic levels if taken in high doses. Just make sure you’re as safe as you can be with everything you’re using.

[Ski]

in reply to: A few more questions on graves #1063768

Your memory will definitely come back once you are regulated, and stabilized. There are so many chemicals running around in the brain in order to keep us functional, it’s truly staggering. Thyroid hormone is literally the fuel for EVERY cell in the body, so having too much can create all sorts of symptoms. I noticed that when I was hyper, thoughts would come into my head and disappear again before I was even conscious of having a thought. When I was hypo, I couldn’t come up with ideas to save my life. An imbalance of thyroid hormone is damaging for many reasons, and finding your correct level and stabilizing at that level will be a MIRACLE, I promise, but it takes a while. Everything Graves’ takes a while. In the meantime, do everything you can to help yourself remember things, since you know you’re having issues. Write notes, keep a detailed calendar, make lists of what you need to do, everything will help. Do not feel "less than" because you need to use these devices. The day will come when your memory returns. I hope you’re feeling better soon! Try to look for small improvements each day, instead of measuring yourself now against your best self of before. You have been ill, and you are undergoing treatment to get well. You WILL get there. We’ve all come to the other side of that bridge, and you will too. Consider yourself lucky to have an accurate diagnosis and options for treatment. Many other patients are still struggling to find out what they’re even dealing with.

[Ski]

in reply to: MORE INFO ON TED #1063799

The doctors I’ve heard speak on this have said that judging the end of the "hot phase" is typically done in retrospect ~ it is a good idea to schedule regular appointments (monthly, or every other month) so they can evaluate the extent of any changes that are going on. After there have been a few appointments with no changes in proptosis or double vision, the doctor may feel comfortable declaring the patient is out of the hot phase. There is no objective test they can use, it’s basically observation and their prior experience with other patients.

[Ski]

in reply to: Asymptomatic and newly diagnosed #1063811

Just adding one comment ~ you may not have noticed that in your post, you’ve dismissed classic symptoms (being tired and forgetful) using other excuses than the disease, which is very common and also tempting for someone who doesn’t want to believe they are not well. The fact that you go to bed late at night could be because you ARE hyper and it is difficult to fall asleep earlier in the day. The forgetfulness still could be due to hyperthyroidism vs. "just getting older." MANY of us have gone too long before getting tested simply because it’s so easy to say "oh it’s just because xxxx" when in fact it’s because we’re not well. Even doctors can dismiss slight symptoms, I can’t tell you how many of us have been told "you’re just working too hard" or "you drink too much caffeine," instead of running a test and finding out for SURE if something’s wrong. Pay close attention to your blood test results, they are the gold standard. If your levels reflect hyperthyroidism, it’s conclusive. If you truly don’t feel badly, consider yourself lucky that this was caught before you were severely symptomatic. The longer it’s left untreated, the worse you’d feel, and the worse those symptoms would get ~ which of course means damage has been done. If you can get successful treatment before too much damage has been done, you’ll have a FAR easier recovery.

[Ski]

in reply to: How long does this take? #1063813

As you’ve noticed, there’s no easy fix, and all of us are different. That said, here are a couple of things to think about. Most doctors recommend a year or two on ATDs before attempting remission (meaning, stopping the ATD), but most patients achieve stability long before that period is up. The fact that you were so sick, began the medication, then completely STOPPED the medication, is likely the more obvious cause of the volatility in your levels, vs. simply using ATDs. Perhaps beginning again at a lower dose than you started with the first time can help you maintain something that is more even.

Perhaps more frequent blood tests, at first, can help (and pay particular attention to T4/T3 vs. TSH at that point).

Remember, as long as the thyroid is intact, there is a potential for the antibodies to create volatile thyroid hormone levels, which doesn’t exist once you’ve been treated with a more permanent choice, such as RAI or surgery. Finding a good dose/good level can be easier, in some respects, when you’re starting from "zero," and you don’t have the complication of the antibodies being stimulated and mucking things up (this is why many U.S. doctors go straight to RAI).

Take note of the fact that when you see people here who are having trouble finding their perfect dose/level, those who are NOT having trouble do not visit. Those who have a hard time are definitely in the minority, and there can be many factors as work. Again, we are all very different.

It is a VERY personal decision, your treatment choice, and people make their choices based on very different criteria. The most important thing is getting treated, somehow, so do all of your research and find the treatment choice that seems to appeal to you most. It’s certainly okay to use ATDs in the meantime to bring your levels into the normal range so you can get some peace of mind while you make the decision. You may want to have a discussion with your doctor about the best possible way to find the right dose without going up/down so much. They may have some good suggestions. It may be fine to bring your levels down *some* rather than *all* in order to tweak your perfect ATD dose.

[Ski]

in reply to: Something I Never Expected #1063840

I have heard at several conferences that hormonal status (puberty, pregnancy, menopause) can change our need for thyroid hormone replacement, precisely for the reason you state ~ thyroid hormone binds to estrogen and the chemical reactions change, so the dose needs to be adjusted.

If we still had our thyroid, the feedback loop with the pituitary would automatically solve these issues, but since we no longer have a thyroid to react, we need to be tested and adjust our replacement dose. I do hope you’re feeling much better soon! Try not to worry, at least. ” title=”Very Happy” />

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