[Ski]

in reply to: First day on thyroid medication…any advice? #1062298

Thyroid meds (not sure whether you were referring to ATDs or replacement hormone when you said this, but this applies to both) may need to be "regularly adjusted" at first, but most people find a comfortable spot over time. It can take a while, but the goal is to find one dose that keeps your levels normal, and you feeling well. After that, some life changes can affect our need for meds, but those are slow changes and we recommend annual testing for that reason. Many patients pass many annual blood tests without any change in dose.

The range of normal is VERY large, so it helps to have a doctor who will support adjustments *within* the normal range, in order to find the spot at which YOU feel best, but it doesn’t mean you need to "constantly" adjust your dose.

[Ski]

in reply to: Oh the insanity….. #1062324

Hi Sheila, and welcome! We’re glad you found us too, I certainly hope you’re feeling better soon!

Just a quick comment for you ~ it would seem that you are one of the "lucky" patients who have antibodies from BOTH autoimmune thyroid diseases, Hashimoto’s and Graves’. This can be a very tough road, because the antibodies from one or the other may be "dominant" at any given time (as you’ve seen). For that reason, many doctors will recommend removing the thyroid through either RAI or surgery in order to keep you from constantly moving between one extreme or the other, which can be just as debilitating as continuous imbalance in either direction. If you don’t have a thyroid, the antibodies have nothing to affect, so you reduce the complications of maintaining normal and stable thyroid hormone levels.

You’re still free to choose your course, I just wanted to point that out so you’re not surprised if one of your doctors brings it up.

Do let us know how it’s going for you!

[Ski]

in reply to: RAI Fears – need some possitive feedback! #1062341

There really is no "natural" way to treat this ~ believe me, we understand, we have all gone through it (it’s the "negotiation" part of the grief process, as we grieve for our former, healthy selves…). If there were a proven method for taking care of this naturally, believe me, we’d shout it from the rooftops. No one wants it more than we do, but we are in close touch with the medical professionals in this field, and to date, nothing meets our needs that can be classified as a "natural" treatment.

Hyperthyroidism is debilitating, and while it’s possible she’s got something else going on that needs to be dealt with, she MUST get the hyperthyroidism under control as soon as humanly possible. Untreated (or undertreated) hyperthyroidism can lead to thyroid storm, which is an ER event and very frightening. Thyroid storm can be fatal, can lead to lifelong issues from the damage it creates, and can come on suddenly. It’s rare, but there’s no sense in tempting fate.

ATDs (PTU or methimazole), RAI or surgery are the ONLY methods that can successfully bring down thyroid hormone levels. That’s just the way it is.

[Ski]

in reply to: Question about post RAI #1062351

We aren’t qualified to evaluate your lab results, but as long as you can see whether you are above or below the normal range, you can see what the results point to. (Short primer on thyroid hormone levels: T4 and TSH operate as something of a counterbalance to each other. When T4 is high and TSH is low, that indicates hyPERthyroidism, and when T4 is low and TSH is high, that indicates hyPOthyroidism.) At this stage of treatment, as I mentioned, look at the T4 and see whether it indicates those values are in the hyper or hypo range. A recent blood test indicating high levels of T4 is pretty good evidence that you have NOT gone hypo yet, though you may feel hypo symptoms ~ that would be due to the rapid change in thyroid hormone levels, which would be an extremely rare occurrence "in the wild," if you will. Since our thyroid hormone levels typically move very slowly, our body views a radical, rapid shift in thyroid hormone levels as a life threatening event, and so LOTS of weird things start happening in our bodies, and each of us can react in different ways. For that reason, it’s hard to say "yes, this is related," or "no, this is not," but if symptoms continue PAST the point of normal, stable levels, then we typically suggest looking for other sources of the discomfort. Anything that is particularly frightening or could point to other issues (chest pains, for instance) should be investigated with a physician ASAP anyway, because it’s always better to be safe than sorry. If your headaches are debilitating and extremely severe, check in with a doctor to make sure there’s not something else going on.

Remember that thyroid hormone is literally the fuel for every cell to function ~ as a result, imbalance can affect us in just about any area of our body. At this stage of your treatment, it may be best to just EXPECT weird things to happen. ” title=”Very Happy” />

[Ski]

in reply to: Anyone had the surgery out there? #1062334

Lots of our members have had the surgery, and lots have talked about it at length ~ just put "surgery" or "TT" in the search engine, you’ll come up with MOUNTAINS of info. We find that some doctors minimize it as an option for their patients (so much more invasive than either of the other two choices we have), but it is the PATIENT’S choice what treatment to pursue, so keep that in mind. Many people choose it right off the bat, and if it is something you’d like to do, just make sure you have a surgeon who does a lot of these specific surgeries (maybe at least 50 a year, something like that), because the thyroid is very near to some sensitive tissue (vocal cords, for instance), and you want a surgeon with a lot of experience to make sure your risk for complications is very low.

[Ski]

in reply to: RAI Fears – need some possitive feedback! #1062339

The actual scientific studies on RAI abound with success stories ~ it’s typically the sites that are trying to sell other (non-proven) treatments that will loudly tell stories about failures (not all of which can be believed, if I’m being honest).

I am an RAI success story. I’ve been on this site since 1998, and I can tell you that I’ve seen COUNTLESS success stories here. Just do a search on the term "RAI" and I know you’ll find a lot of good information. I had RAI and am now successfully managed on replacement thyroid hormone. It takes a while, even under the best of circumstances, but it’s a situation of getting "closer every minute" and feeling better all the time.

The truth is that RAI is one of the three, proven-successful treatments for Graves’ Disease. It’s good to have information, certainly, but make sure you are looking at CREDIBLE information. Remember that anyone can pay for an internet domain and paste anything they want in those pages ~ there is no rule that what they post must be truthful. Look for sites that are affiliated with respected medical organizations (as ours is).

Bottom line ~ RAI is effective and safe for Graves’ patients. Remember that thyroid cancer patients receive RAI doses up to 20 TIMES what we get, and even that is considered a safe dose for the patient’s future health. Even so, if your wife remains uncomfortable with the idea of RAI, and isn’t interested in trying meds, then surgery is still one more viable option. Each of our treatment options carries pros and cons, which makes it somewhat harder to choose (especially as we are in the throes of anxiety from hyperthyroidism), but we are SO LUCKY to have three potential treatments that are all proven and can return us to health. No "negative" for any of the treatments is worse than remaining hyperthyroid, which can be fatal if left untreated.

Please let us know how she’s doing! Send her over, let her read some of the conversations we’ve got going on, I hope it’ll help. We’ve all been through it, so we understand.

[Ski]

in reply to: Question about post RAI #1062347

Hi there,

You are asking the right questions, and you seem to have already read a lot ~ that’s great!

As you mention, the time varies from patient to patient, so it’s hard to know for a certainty. The most important thing to know right now in your blood tests is your T4 level, the actual "main" thyroid hormone that’s running through your bloodstream, because your TSH levels will lag behind. It’s really usually ONLY at this level of treatment that T4 is an absolutely critical number to follow, because of the rapid changes that can happen. For some people it’s gradual, for others it’s sudden, and it’s hard to know who will follow either path, so it’s good to be thinking about this now.

The weight gain is something else that varies among patients, but typically we have lost muscle mass, and the tissue does return, which looks like weight gain but isn’t an emergency. Certainly, a slip into hypothyroidism can also create some weight gain, so a vigilant eye on your levels IS a good idea, especially now. Once levels normalize and stabilize, weight issues typically improve.

Most often we advise patients to keep a list of ALL potential hypo symptoms, and keep track of how often and how severely you are feeling any of them. Different patients experience different symptoms ~ we don’t see every potential symptom in every patient. If you discover that you are routinely feeling 4 or 5 or more classic hypo symptoms very severely, that can be a benchmark to use to go get your blood tested. Do speak with your doctor to see if they recommend any particular time lapsing between blood draws right now, because they have a handle on what your insurance coverage will "tolerate," for instance, so you can work together to get what you need and end up in the best possible position. Knowing sooner is always better, you need time to build back UP the thyroid hormone before you truly feel better from taking replacement hormone.

Once you’ve been confirmed hypothyroid and begun replacement hormone, THAT is when you need to wait at least 6 weeks between blood draws, otherwise it can be hard to zero in on that perfect spot for you. It seems like a long time, and just after you begin a new dose you usually feel up one day, down the next, for a couple of weeks, but then it levels out and you "skate through" to the six-week mark for tests. It is TRULY the best way to handle the process at that point. Remember that you’ll be feeling better all the time throughout, but it may be a while before you can say you have NO symptoms at all.

Let us know how it’s going!

[Ski]

in reply to: 4 weeks post RAI and still hyper #1062373

It’s definitely capricious ~ for the most part, it takes at least six weeks just to flush out the excess thyroid hormone that existed on the date of RAI. Hang in, don’t give up!

[Ski]

in reply to: New DX Many Questions and Fears #1062432

The timing can be pretty capricious, but for each type of treatment, if you end up hypo, you must by definition travel through a period of "normal." As you move into the other side of imbalance, you can have some of the same symptoms as well as some different ones ~ you should keep a list of typical symptoms for each at hand, because it’s helpful just to see how many symptoms occur on both sides, and look for the unique symptoms of hypo so you can make sure to get tested early on in the process and begin taking replacement hormone. You can shortcut the process of getting back to normal by being vigilant about symptoms and knowing your levels, but it STILL takes time, since you need to wait at least six weeks after changing doses in order to get accurate results from your blood tests. That’s just the way our body’s feedback loop works for thyroid hormone regulation, so you need to know that up front. Still, you should be (as I used to tell my kids on long road trips) "closer every minute," so it’s not a constant period of illness, it’s a constant progression closer and closer to normal.

Also ~ you need to find a normal point that works for you, and THEN your body begins to heal. So on the day your blood tests read normal, and you don’t notice any dramatic symptoms of hyper or hypo, some of the other damage caused by hyperthyroidism can START to heal. Don’t worry if you don’t feel completely perfect on that day, in other words. There’s more improvement to come, even after you find your normal point.

[Ski]

in reply to: Surgical Ablation after RAI? #1062401

If you are continuing to experience hypothyroid symptoms, then it would stand to reason that the thyroid tissue remaining in your body (if any) is not functioning at all. It’s not as if the dead tissue could "suck up" circulating thyroid hormone, things just don’t work that way. The fact that you say you are only okay if you "overmedicate" and go hyper is a bit misleading, because as soon as you go hyper, you’re not okay any more. If you’re feeling well on Armour, you may be one of the people who need a bit of T3 mixed in with their T4 in order to feel just right, and that may have been what you were chasing as you adjusted doses with other meds. T3 is potent, though, and has a very short life in the bloodstream, so typically a doctor will ask you to take two smaller doses over the course of a day than just one in the morning ~ if that’s not the way you’re getting your dose, you may want to talk with the doctor about that. It can level out your days. Only T3 works that rapidly and dissipates that quickly ~ anyone that is on T4 is fine taking one pill per day, splitting it wouldn’t change it ~ but splitting up a dose of Armour may help you feel consistently better.

As far as the geiger counter readings vs. what doctors tell you ~ my guess is that you were holding the geiger counter right up to your neck. It’s true that the levels are high right there, at first, after RAI. After the first few days, it is still recommended that we stay some distance from people (and not cuddle them up to our neck) if we plan to be with them for a long period of time. Readings that were gathered three to six feet away from you would have been helpful in order to understand what exposure someone in the same room with you would experience. As time passes, it all dissipates and the risks get lower each day.

Please remember that radiation exposure is a lifelong thing ~ we have some radiation in our bodies naturally, and we are exposed to some form of radiation every day (the sun is a good example), so the overwhelming majority of restrictions related to radiation come from the hope that we can ensure the minimum possible exposure over a lifetime. A high geiger counter reading doesn’t mean that you are "poisonous," it’s simply a gauge of the level present in your immediate vicinity.

And one final comment ~ the restrictions for the first few days after RAI have more to do with the fact that our body is literally flushing out RAI from our pores. The RAI that is NOT taken up into the thyroid leaves the body through our fluid waste channels (saliva, sweat, urine), and that poses an immediate risk of ingestion or absorption to our housemates, so we get the recommendations to be completely separate from everyone for those first 48-72 hours. After that period of time, it is "only" the radiation in our thyroid we need to worry about. That’s why the restrictions lift, not because there’s some rapid loss of radiation in the thyroid after those first few days.

[Ski]

in reply to: Surgical Ablation after RAI? #1062399

If your replacement hormone is not given in the right amount, you can continue to have "thyroid symptoms" due to an imbalance, without any thyroid tissue. My understanding is that when the thyroid cells are destroyed, they are completely destroyed and absorbed into the body at the cellular level, so there would literally be no tissue there. If there’s anything left, it’s an extremely small piece of nonfunctioning tissue. In addition to that, the thyroid hormone it was there to produce is now provided by the thyroid hormone that you take in your pill, so there’s no need for it to be "connected" to anything. The thyroid takes in iodine, makes thyroid hormone from that, stores it, and releases it as "requested" by the pituitary (through the "messenger" of TSH). Once it’s released into the bloodstream, the body converts it to T3 and uses it as needed. So if you are experiencing issues with thyroid hormone imbalance after RAI has destroyed your thyroid, the likelihood is that the solution has to do with adjusting the amount of thyroid hormone circulating in your bloodstream, which is managed through thyroid hormone replacement pills. Removing whatever is left of your thyroid tissue wouldn’t help in any way.

[Ski]

in reply to: Armour vrs. Syntrhoid #1062412

If you do a search for Armour on this bulletin board, you’ll find a lot of comprehensive conversation on this topic ~ bottom line is that Armour helps some, but not all, and can actually be harmful for a certain percentage of patients, so it’s something to research carefully and discuss frankly with your doctor, usually after you’ve attempted to find a comfortable level with Synthroid or other T4 replacement hormone alone. (Armour is different because it includes both T4 and T3.)

As far as brand name vs. generic, the only thing we know is that, if you begin taking one or another (brand name or generic), you should do everything you can to continue on the same one (whichever it is), because we find that the same "number" dose of one doesn’t always create the same ultimate thyroid hormone level in patients. That means if you switch from brand to generic (or vice versa), you may find yourself beginning a new cycle of honing in on the right dose for you. Fluctuations and continual imbalance of thyroid hormone can cause symptoms even in small variations, so once you’ve begun replacement and found the right dose for you, it helps to stick with that type of replacement, whichever it is, if that’s possible. Each replacement hormone should have the same chemical makeup of T4, so the key is just knowing what dose of which pill to take in order to feel right.

Not that that can’t change ~ due to age, activity level, weight, hormonal status (menopause, for instance), thyroid hormone needs can change, so even after a successful dose is found, we suggest testing at least once a year to make sure it’s still working well for you. Just had to point that out…

[Ski]

in reply to: Newbie – Side effects of methimazole? #1062577

Just a note ~ since hyperthyroidism can be so dangerous, the typical course of action with ATDs is to start with a high dose to ensure that levels drop into the normal range as soon as possible. Once that happens, the dose is adjusted in order to attempt to maintain a level that feels right and is within the normal range. It can take a little while to hone in on it, but nothing thyroid moves quickly, I promise you…

[Ski]

in reply to: Graves and Acne #1062423

As far as I know, Graves’ doesn’t cause acne, but odd things can happen from any hormonal imbalance ~ I don’t really know much about acne specifically, and I don’t recall it being mentioned during the conferences. I also didn’t have much of a problem with acne, but it did return when I was approaching perimenopause, so maybe that’s something else to look at. Have you spoken with a dermatologist?

[Ski]

in reply to: Effect on your Menstrual Cycle – Sorry guys…. #1065142

It’s a very common phenomenon with wacky thyroid hormone levels – hyperthyroid produces shorter, lighter, less frequent periods, and hypothyroid produces longer, heavier, more frequent periods. Once thyroid hormone normalizes, periods will too (of course, until peri-menopause begins). I hope that helps! I know it’s unnerving, on top of everything else!

[Author]

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