[Ski]

in reply to: RAI Twice #1065549

Yep, I needed to have RAI twice ~ the first time I just wasn’t given enough, and I never went properly hypothyroid (my TSH remained suppressed for more than a year ~ can’t say I didn’t try!!). I tried to convince myself that I wasn’t really sick any more, but once I had the second treatment and went truly hypo, I could see I’d still been ill before it was done. There’s a good reason to have a goal of being within the normal range in both measurements (T4 and TSH).

The only odd thing about the second RAI is that you usually need a higher dose in order to get enough of it remaining in the thyroid to finally do the job. It’s really just mathematical at that point ~ say that your initial uptake percentage (before any treatment) was 80%. Say that you were given 10 millicuries as an initial treatment dose. 80% of that dose would have ended up in your thyroid (8 millicuries) after the first 48 hours. Once you’ve had one dose of RAI, it should have destroyed some of your thyroid, so your uptake percentage prior to the second dose will be far lower. I think mine was somewhere around 45% before the second dose. Since the uptake percentage tells you exactly what percentage of your initial dose will stay in the thyroid, you need to take more the second time to end up with the same "active" dose inside your thyroid, to make sure the job gets done this time. The only difference then is the amount of RAI that is being flushed out of your system in the first 48 hours.

I wish you luck!

[Ski]

in reply to: Eye-lid "blisters" #1065553

Truthfully, I have not heard anyone speak about this here, and I’ve been around a long time! I do know that weird things happen to Graves’ patients, so no one could rule out GD as some sort of trigger for it, but it’s not anything classic that many of us have gone through. Have you checked with a dermatologist? Do let us know if you find anything out, I’d be interested to know.

[Ski]

in reply to: Thyroid Hair #1065724

The hair and nails are considered, by the "manager" of the body, to be "extra" functions that are nice to support when we’re healthy, but when certain types of illnesses occur (like thyroid imbalance), the body removes resources from the hair and nails in order to preserve resources to keep the rest of the body functioning properly. Once your thyroid hormone levels are normalized, and have been stable for some period of time, then your body can *begin* to heal, and it will return resources to those parts of your body. While we’re being treated, any changes (even a change in the right direction) is perceived by the body as an emergency state, and resources are removed, so it’s common for us to have our hair/nails return to something that seems close to normal, then a medication or replacement hormone dose change can throw things into a little bit of chaos again, even if you’re heading in the right direction. It’ll come back, but in the meantime, go easy on your hair especially. If you’re able to do it, a short cut that you can style easily (without all the tugging and pulling of brushes and heat damage of the blow dryer) will perhaps help. I think color can be damaging too. Dry skin can also be a result of imbalance, so reaching (and staying at) healthy thyroid hormone levels should resolve it, if that’s what’s causing it.

[Ski]

in reply to: review TSH, T3, Free thyroxine #1065558

Are you saying you were hyperthyroid for more than 12 years?

It’s true that TSH can take a long time to catch up to T4 levels, since it is more of a running average snapshot than a moment-to-moment change in the body. If you’ve changed doses every two months, you may need to wait a bit longer before the TSH reads correctly. For now, your doctor may want to adjust doses based on T4 levels.

Still, if your TSH ran so low for so long, it’s also possible your pituitary gland is just having a hard time "waking up" again (since that’s where the TSH comes from). I have heard of that in patients who have been hyperthyroid for very long periods of time.

And just one WIDE reaching thought ~ it is also possible that the pituitary is malfunctioning. All options should be considered, when things seem to be so out of balance.

[Ski]

in reply to: strabismus surgery anesthesia-general or local with sedation #1065566

Not all of Jake’s surgeries were strabismus surgeries ~ just a point of clarification. Hopefully he’ll have some time to jump in on this one!

I understood the same as Bobbi did, that the patient had to be able to assist the surgeon in aligning the eyes properly, so they had to be under some kind of "forget-about-it" sedation rather than a general. I didn’t have the surgery though, so can’t speak from personal experience.

Make SURE you are dealing with a surgeon who has a lot of experience doing this specific surgery for GD patients. Hopefully one who is affiliated with ASOPRS (http://www.asoprs.org). The issues are much different than in any other type of surgery, since the muscles can be affected differently from eye to eye.

[Ski]

in reply to: PTU and Liver failure #1065627

It’s so individual ~ one of the best presentations we had last October laid out all three of our options, and reasons why a person would choose one over another. Part of it has to do with medical conditions (allergies to the ATDs, for instance, or severity of symptoms), and part of it is emotional ~ as we’ve mentioned before, we’re so fortunate to HAVE options. Not everyone does.

[Ski]

in reply to: PTU and Liver failure #1065625

You’re not alone there ~ my anger and tremors were the least favorite symptoms. By the time things got really bad, my handwriting changed. That was scary. The anger is really tough, while there’s still a chemical imbalance, but do what you can to bring everyone around you the knowledge of what’s going on with you. You don’t have to give them chapter and verse, but you can tell them you have a thyroid imbalance that shortens your temper considerably, and you "apologize in advance" if it happens with them. It can help. Jake used to do something I adore ~ when he was "going off" with anger, he’d start to yell "I love you! I don’t want to do this! I don’t know how to stop!" It can diffuse the tension a LOT, and especially so when they are already informed.

Once your levels start to normalize, that stuff will begin to ease, and relatively quickly. Still, it won’t get back to "normal" as soon as you want, but try to celebrate small improvements.

The trick with RAI is to make sure you are aiming for ablation (destruction), and start looking at your symptoms for signs of hypothyroidism starting around the six week mark. It can take that long to flush out the excess thyroid hormone that was in your bloodstream before you take the RAI, so you wait until at least that period has passed, then pay close attention to your symptoms. You can keep a list of classic hypothyroid symptoms, and hopefully have access to a lab when you see that you’re experiencing more than 4 or 5 of them on a regular basis. It’s good to have a standing order at the lab for blood tests, but make sure you don’t abuse the privilege, because even though it’s a relatively inexpensive blood test, it adds up. Once you’ve officially gone hypo, you’ll start taking replacement hormone ~ which, again, takes about six weeks to fully build up in your system so that you can get accurate lab results when you have your blood tested. Again, keeping a symptom diary will be extremely helpful as you go through this process with your doctor. They LOVE data, and if they see empirical data, taken down as things happened, that point to one thing or another (either you’re getting too much or too little replacement hormone), then they’ll work with you to adjust your dose to find the exact right dose for you. It is NOT one-size-fits-all by any means. They can’t look at your height and weight and figure out exactly what thyroid hormone replacement dose will be perfect for you. In addition to that, at the beginning, you may be having more failure of the thyroid even as you begin to take replacement, so things can be tough to estimate.

At first, you probably won’t feel a whole lot different, but know that things are slowing down, at least. I wish you luck!

[Ski]

in reply to: Treatment options if want I to become pregnant #1065573

Not really, since you’ve had trouble with PTU, methimazole is not recommended for pregnant women, and the RAI precautions for pregnancy are at least six months out from the procedure. TT is what’s left! Make sure you are talking with a surgeon who does MANY of these procedures with very low complication rates. If your surgeon will not give you that type of information, find another. That area can be tricky, but a surgeon who "knows their way around" will give you the best possible outcome.

[Ski]

in reply to: Confirming that posts have been restored #1065583

That was when the board was down, so there were only a handful ~ we removed the one saying "we lost a lot of posts," since, of course, we got them back. Any discussion related to the crash would’ve been deleted too, since it’s not helpful going forward.

[Ski]

in reply to: PTU and Liver failure #1065622

The incidence of TED seems to be almost completely unrelated to the course of our thyroid disease or which treatment we choose, according to what we’ve learned at our conferences ~ it can even begin more than ten years after we’re successfully treated and regulated for our thyroid disease, though that’s rare. I’m sure you’ve heard of the one study that came out with a 16% incidence of "temporary worsening" of TED symptoms in patients in the first few months after RAI ~ we heard at the most recent conference that this study has not been replicated, so we’re not exactly sure of the incidence rate overall, but it’s still something to consider. These results in no way suggest that RAI either causes or permanently worsens TED symptoms. Theories are that the worsening is in some way related to a certain level of antibody action, or to a dramatic drop in hormone levels, but nothing’s been conclusively proven on that score. The only reason we worry about this particular element of what we know is because, if a patient already has extremely severe TED symptoms, they probably wouldn’t want to risk even a small chance of temporary worsening, so they may not want to choose RAI to treat their thyroid disease (or they can take steroids for a few weeks on either side of the treatment, which dropped the levels of worsening to zero in that study). Other than that, the two conditions appear to be related in that they occur together in patients, but they have completely unrelated disease paths, in that you can’t predict what will happen with one condition by virtue of knowing what’s happened with the other.

[Ski]

in reply to: PTU and Liver failure #1065620

RAI and thyroidectomy, these days, aim for total ablation of the gland, which of course would be followed by thyroid hormone replacement for the rest of your life. The reason is that experience has shown that ANY remaining thyroid tissue has the potential to overproduce as a response to antibody activity, so you may have periods of thyroid hormone spikes, and those are dangerous too.

Thyroid hormone replacement does not require constant monitoring by an endocrinologist ~ your general practitioner can manage that after you’ve arrived at a stable level, if you prefer. Typically it’s much easier that way, since you see your GP often, and endocrinologists are so busy. In addition to that, once you’ve arrived at a good dose for you, you really only need to check levels annually, or if you suspect a problem.

It’s true that thyroid hormone replacement is less toxic than ATDs, simply because it is, chemically, the thyroid hormone our body would produce if it could, so it doesn’t rate as a "medication" or introduce toxins the same way the ATD does. HOWEVER, a very small dose of ATD, which is typically what you end up on as a maintenance dose, also carries extremely small risk.

I know, not much help. ” title=”Very Happy” /> This is why it’s such a tough decision for all of us!

[Ski]

in reply to: First Endo appt #1065593

Thanks for the kind words! It definitely feeds MY soul to help. This is SO difficult to get your head around, especially when you’re sick, and it affects so many parts of your life that it seems overwhelming. I’m so glad we’re able to give you a hand.

As for the 20-30% figure, that refers ONLY to the percentage of people who achieve a true remission using ATDs. A true remission means that, after you’ve taken the medication for some period of time (typically 1-2 years), you are able to stop taking the medication and remain at normal thyroid hormone levels for at least one year. That is a TALL order. The medication definitely works to lower thyroid hormone levels and maintain them, and the most recent news indicates that longterm maintenance at a very low dose has very few risks, so even if you try for remission and fail, you are still able to go back on ATDs, typically, and use them for maintenance instead. It IS your choice, and if you go for RAI, that’ll get you healthy too. Just wanted to point out that the low percentage of success is a little misleading.

[Ski]

in reply to: Just had OD all fine very happy :) #1065598

Jo,

I am SO glad to see your news! Congratulations on everything, I’m happy you figured out a way to get what you needed, and it worked out so beautifully! Excellent news for those in the "before" state as well, thanks so much for sharing. ” title=”Very Happy” />

[Ski]

in reply to: TAPING EYE @ NIGHT #1065603

At our last conference, the doctor recommended "Tranquileyes" goggles ~ they are deep goggles so they don’t interfere with either your bulging eyes or your eyelashes, and you can even buy moisture pads to put inside them for extra help. If you aren’t interested in that, he suggested saran wrap held in place with petroleum jelly, and a sleep mask over that, since taping the eyes shut with ONLY tape can be risky. If the tape comes off in the night, it becomes a further hazard to the vulnerable cornea and, as you’ve found, if the tape is sufficiently sticky to stay on all night, it becomes a problem with your skin, using it night after night.

[Ski]

in reply to: Graves and Stomach Issues #1065661

I have never heard anything official regarding stomach issues, but I can tell you that I had an episode after my first RAI that was just the most horrible abdominal pain I’ve ever had ~ I ended up having all kinds of tests, they all came up negative, and my doctor just put me on a liquid diet for a few days. Everything resolved rather quickly, but I always figured it related to the sudden drop in thyroid hormone.

[Author]

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