[Ski]

in reply to: THINNING HAIR and HAIR LOSS #1062825

Sorry to jump in here so late ~ I just wanted to make one more point. Resources are removed from the hair even when we are going through a dosage change. So, your levels may be "okay," but if you’re in the process of fine-tuning your dose, you can experience a brief period of hair loss after you change a dose. I don’t hear many people complaining of hair loss like yours (bald spots, etc.), and I wouldn’t guess loss that severe would occur just by changing a dose a little bit, but I wanted to point it out for those who may be visiting and reading for their own info. ” title=”Very Happy” />

[Ski]

in reply to: Celiac disease common with graves? #1062841

You know, as I was reading your post, I was reminded that someone did suggest that there are certain autoimmune diseases that are slightly more likely for GD patients to have, but (do NOT quote me on this) I don’t think celiac was one of them. The fact is that autoimmune diseases are so numerous that it’s almost impossible to make correlations, other than the basic statement that once you have one autoimmune disease, it is slightly more likely that you’ll have another. Not even Graves’ Disease moves directly in families, it’s just autoimmunity, and then it appears that we are very individual in the way that we contract autoimmunity.

[Ski]

in reply to: Post RAI – tentatively optimistic #1062857

Hi there,

I’m so glad you’re feeling better! It’s most likely the result of a drop in your overall thyroid hormone levels, and oh doesn’t it feel good to feel good a little? ” title=”Very Happy” />

Now, the questions!

"Crashing" into hypo typically requires at least six weeks’ time, because that’s how long it takes for all of the excess thyroid hormone to leave your system before you can feel the effect of no longer creating thyroid hormone. It’s usually at least six weeks before the first labs are done, so that’s pretty normal. If you feel AWFUL prior to that, feel free to ask your doctor to have your labs done. It’s not unheard of that it happens earlier, just very rare.

One thing you should know is that somewhere around two weeks, some patients experience a short period of EXTRA hyper symptoms, due to the thyroid cells releasing the hormone they’ve been storing. IF it happens, it’s usually a couple of days, and can be alleviated by beta blockers, with the doctor’s permission.

As far as where you stand with Graves’, you’ve got that just about right ~ once the thyroid condition is "handled" and your thyroid hormone levels are regulated through replacement hormone, the other conditions we can be faced with are TED and pretibial myxedema (nasty rash on the shins). Some of us continue to feel some type of mental effects, but that’s not been quantified as definitely "Graves’" ~ it may be the aftermath of hyperthyroidism, or some other effect that just hasn’t been scientifically measured yet, but I know many GD patients who say they continue to have some issues with memory, and other emotional issues. FAR less pronounced than while they were hyperthyroid, but seemingly lingering.

It has been discovered that autoimmune disease requires a specific genetic defect, before the autoimmune disease can develop in a patient. So, once you have an autoimmune disease, it’s proven that you have that genetic defect, and you may end up with another autoimmune disease. It’s slightly more likely, once you have one, to get another.

I hope this helps! Do let us know how you’re progressing!

[Ski]

in reply to: RAI dosage #1062887

I know it’s hard not to panic about this ~ remember a couple of things.

First, there will be progressively less exposure as the weeks pass ~ no one is saying you must be totally apart for 80 days. The first few days’ separation is for one specific reason, the potential for ingestion of the RAI from your sweat or saliva into their bodies. So it makes absolute perfect sense to just stay all the way apart. After that, the issue is the remaining radiation as it works on your thyroid. It is already reduced from the initial dose, even after the first couple of days. The first week after that, you can make contact brief, but you can still cuddle a few times a day (just not for hours as they sleep in your arms). The next week, you can reduce the restrictions some more (since more of the initial dose will have dissipated), and so on.

In addition, nothing indicates that you are harming your children at that point. These precautions go WAY overboard in terms of what doctors feel may be prudent, they are recommending far more caution than they even believe is necessary, because it’s always better safe than sorry. If you are feeling that way as well, then go ahead and restrict yourself even further than the recommendations would indicate ~ but really, don’t torture yourself over this. I understand about a 1-year-old and having to hold them all the time, so I would suggest that your practice becomes picking them up to move them to a new place, snuggle a moment and then put them right back down in the "new place." Even if it’s just at your feet, that’s a good distance from your neck. It’s just the pocket of your neck that you need to be most concerned with.

[Ski]

in reply to: RAI dosage #1062884

They calculate the dosage based on quite a few factors, so there isn’t really a "standard" dose. We heard at October’s conference that the conventional wisdom has changed in the recent past so that doses are now routinely higher than they used to be, as patients receiving higher doses have better outcomes overall (quicker recovery, etc.). 20mci may be higher than some patient’s doses, lower than others ~ keep in mind that thyroid cancer patients routinely receive 10 times that, so it’s still a pretty low dose in the grand scheme of things. If your goal is to remove the thyroid, then you’ve done the right thing by alerting the dosing doctor, and it would appear they are following your lead.

Those restrictions are fairly routine ~ in the first 2-3 days, your body is flushing out the RAI that is not taken up into the thyroid (that’s the remaining 24.1% of the 20 millicuries, after taking into consideration your uptake results), which is done through the body’s fluid waste channels (primarily urine, but also sweat and saliva), and during that time, it’s best just to be completely separate from others. You will likely be encouraged to drink a lot of water and urinate often, that’s meant to dilute the RAI that’s being flushed out and also to flush it out ASAP.

After those first 2-3 days, the restrictions have to do with the radiation emanating from your thyroid ~ obviously it is not something that injures a person (otherwise it’d be bad for US), but radiation exposure is cumulative over a lifetime, and the idea is to limit that cumulative figure for those who have no need of a radiation treatment. The half-life of RAI is 8 days, so every 8 days, the amount that is in your thyroid will reduce by half, until there is such a negligible portion that it’s the same as any other day (we have some radiation in our body naturally). In the meantime, I was told to consider distance and time together ~ if I needed to be very near someone, I should make sure it is for a short period of time, and if I needed to be with someone for a long time, keep them some distance from my throat. With 20 millicuries, you should be down to a negligible point in less than a month (that takes into consideration the 5 that will be flushed out, so if you begin with 20, 15 remain after that happens, then 7.5 would remain after 8 days, 3.75 after 16 days, ~1.9 after 24 days, <1 after 32 days). Restrictions are far more lenient now than when I took my dose (in 1998), FYI.

[Ski]

in reply to: If you had RAI #1062896

Don’t be nervous, please ~ our body takes up to six weeks just to flush out the excess thyroid hormone that existed in our bloodstream before RAI, so you still have LOTS of room to see results.

The RAI does the bulk of its work to the thyroid in the first six weeks, but continues to affect thyroid function (if it doesn’t "knock it out" immediately) for six months. For me, my first RAI dose was not big enough to do everything we wanted, but it did put my T4 into the normal range within a few months. Just didn’t get to MY normal, ever (TSH remained suppressed), so I did it again a couple of years later. That is VERY UNUSUAL and you should not take it as evidence that it may happen to you. My point was to let you know that it may be a while before you know exactly how you’ve been affected by the RAI, but you should begin to notice changes relatively soon. No matter what, the RAI did *something* ~ I guarantee that. Just try to relax ~ everything thyroid takes more time than we’d like, I say this from experience. ” title=”Very Happy” />

[Ski]

in reply to: Want to have baby #1063009

Just jumping in to say that it really ought to be an ophthalmologist ~ they’re the only doctors trained to handle TED. A really good tool for your first appointment is a picture of how you looked before TED, so they can evaluate for themselves the changes that have occurred. Sometimes even [u:ukwp79rs]we[/u:ukwp79rs] don’t realize what exactly has changed.

[Ski]

in reply to: Going without meds #1063116

You can get more than 3 months’ worth of replacement hormone (100 pills) for about $30, and that’s the name brand, so a generic could be less than $10 per month in order to return you to health. I realize that must be partnered with some blood tests, in order to make it the best possible dose for you, but you simply must get SOMETHING. There are programs in some places for free meds ~ thyroid replacement hormone is not something you can go without and do well, so it falls into the category of "must have" for any patient who has a prescription. It is ESSENTIAL that you get it. It’s like saying, "I wish I could breathe today, but it’s too expensive." You simply must find a way. Try this site, Patient Advocate http://www.patientadvocate.org ~ this is exactly their specialty, and they may be able to point you toward resources you may not have known existed.

Your question was, how long can you go without meds? Well, the problem is that you could potentially go a long time before you felt truly debilitated, but by then you may have done permanent harm to yourself. Your body systems need thyroid hormone, or things start to shut down. This is an urgent need, not a luxury.

You may think you’re alone, but you’re not. There are people out there who can help you. Ask everyone in the medical profession, ask everyone you come into contact with. You’ll find some way.

[Ski]

in reply to: Want to have baby #1062988

I think you may have it right ~ the people you see who regret having RAI are just more prevalent on the online boards. We had a fabulous presentation at a conference last year (2009, I mean) where the doctor outlined certain factors that may point a patient toward one treatment or another. Bottom line, treated is treated, and whatever you feel more comfortable with is what you should do.

I had RAI, it was (finally) successful (should have made sure my initial dose was high enough for full ablation), and I am now healthy and happy. ” title=”Very Happy” /> There are MANY others like me, I know it’s true.

[Ski]

in reply to: Seizure Activity with Synthroid?? #1062973

This isn’t something I’ve heard of before ~ not sure what to say about this. If it continues, you might want to ask your doctor to switch you back and see if the phenomenon goes away. If NOT, then it wouldn’t have been caused by that, but you’d know that you need to look elsewhere, anyway. If SO, then yay. ” title=”Very Happy” />

[Ski]

in reply to: New to this. #1063021

Hi there,

I’m glad you found us, and I’m sure glad you wrote ~ we can help you navigate the process, for sure. I’m actually not very clear on what your treatment status is ~ you had RAI, but no follow up? Or do you take thyroid hormone replacement at this point? It’s true that normal thyroid hormone levels usually signal good news, but we understand that being at YOUR normal point is even more important, since the range of thyroid hormone that’s considered "normal" is so large. The fact that you’ve been largely untreated, or at least haven’t paid a great deal of attention to your thyroid hormone status, may make this immediate process a little more complicated, because it’s hard to know exactly where you stand and where to go next. It’s also important to follow your doctor’s advice about the other things, because we do tend to begin every medical conversation after diagnosis by saying "how is Graves’ causing THIS thing?" when in fact it is nearly as likely that something else is going on, so don’t stop talking when your doctor suggests it may be something else, because they could be very right.

Some interim steps may include anti-depressants, and I would urge you to consider that as a real possibility for help. If your thyroid hormone levels have been out-of-whack in either direction for a long period of time, it can affect nearly every body system, and our brain chemical balance is very delicate. If you find that you can stop the rage in this way, it’ll be worth it to you and to your relationship. There’s no harm in spending some time with a therapist, just to talk these things out, even if you don’t really think it’s rooted in a longterm psychological issue. Anything you can do to ease up on your other responsibilities at this time will probably be good for your overall mental state ~ do things that you love, try to minimize things you absolutely hate (within reason, of course ~ if you have a job you hate, best to try and get through a day in order to keep financial issues from becoming yet another issue).

I hope this helps ~ let us know how it’s going, and keep asking questions! Knowledge is definitely power! ” title=”Very Happy” />

[Ski]

in reply to: weight gain #1063044

One of the things that can play into the weight gain is the "muscle wasting" we suffer while hyperthyroid. As I’m sure you know, strong, healthy muscle tissue burns calories even at rest, and helps us manage our weight. When we are hyperthyroid, the large muscles (upper thighs, chest, upper back) are the most affected by the muscle wasting caused by hyperthyroidism (speeds up the "destroy" process, suppresses the "rebuild" process), but all of our muscles can suffer, and that results in a lower "burn rate," which is something a person doesn’t expect, so eating the same calorie content can end up in weight gain. After we return to normal hormone levels, we regain muscle tissue, but that also "appears" as though it’s fat weight gain, when in fact it is good that our muscle tissue is returning. At that point you can begin to rebuild the new muscle tissue, but it is soft and mushy muscle, and needs to be VERY carefully strengthened to make sure you avoid injury.

If you are still hyperthyroid to any degree, the exercise you are doing actually may be working counter to what you’d like ~ it would further destroy muscle, and your body wouldn’t be able to replace it while you’re still hyperthyroid ~ so talk frankly with your doctor about the current state of your body before you continue along that path for long. Also, if you’re still hyper, that can lead to dangerous arrhythmias (irregular heartbeats) when you’re exercising, so again, another reason to talk with the doctor to make sure you’re at a point where this is a good idea.

Once you have reached a normal, stable level of thyroid hormone, your best starting point will be visiting a physical therapist. They can tell you exactly what level of strength and endurance you currently have, and they can put you on a safe path of exercise to strengthen the muscle in as short a period of time as is possible.

I know it’s hard, weight gain is SO debilitating. I’ve been overweight my whole life (though, looking at pictures from my early 20s, I sure wish I was THAT kind of "fat" again!!!), and it’s a constant emotional and physical battle. Your determination will get you through it, I can tell, and you WILL return to your normal, healthy body. Just make sure you’re doing this safely.

[Ski]

in reply to: Questions about care process #1063192

This is definitely a tough time for you, I know ~ the first thing you need to know is that recovery is a very slow process. Each step along the way is a step closer to health, and you really need to see it that way in order to get through it with the least possible frustration. It’ll be tough anyway, I won’t lie.

Wow, that weight gain is really substantial ~ and it happened before you had RAI treatment, while you were still hyper? I would ask your doctor specifically about that part of it, because that’s alarming and extremely unusual for GD patients.

RAI takes about six weeks to have the majority of its effect on the thyroid, but can continue to lessen thyroid function for up to six months, if it doesn’t destroy the thyroid outright at the beginning. In addition to that, your body still has within it the excess thyroid hormone that existed at the time of RAI, and that takes about six weeks to be flushed completely out of the bloodstream, so for a while, even without new thyroid hormone being made by the thyroid, you may still feel a bit hyper, and you are definitely not "well."

If your general practitioner is confident and capable of checking/managing your thyroid hormone levels, it’s possible to use them to manage your condition from here on out. If you feel that they are inadequate for that, you should be able to go back and consult with the endo. I would recommend getting blood tests done prior to any appointments with either doctor (in time to have the results in hand at the appointment), so you make the best use of both of your time. It’d be great to have a standing order at your lab, but be very clear with your doctor about how often they allow you to go in, or what threshold they feel you should pass before you go in ~ it’s a blessing, if you can get it, but if you abuse the privilege, they can revoke the order, so it just makes things harder. You should be looking for symptoms of hypothyroidism ~ add up 4 or 5 of the classic symptoms and be feeling them frequently ~ at least, before you get your blood tested. It doesn’t ALWAYS reflect how you’re feeling, because the TSH can lag behind the T4 readings ~ so at first, you should ask your doctor to please ask for both test results. It’ll help you and your doctor figure things out more quickly. The wait to hypothyroidism may take a while, so you should discuss with your doctor any pattern of appointments. You may want to make one a fair distance off (maybe even 3 months away), but leave the door open to call for an urgent blood test and consultation if you feel you’ve dropped off a cliff into hypo. It’s not extremely common for that to happen, but it does happen to some, and you want to make sure you’re prepared to get tested and evaluated if you need it, because it’ll have a direct relationship to how quickly you can come back to normal with replacement hormone.

You are on the way to recovery, be glad for that. Remember that your body has been the object of a great assault, and once you reach normal thyroid hormone levels, all that means is that your newly healthy body can now BEGIN to heal from the attack. Even after you reach a normal point, there is more improvement to be had. I know this isn’t what you want to hear ~ it’s true, we’ve all been where you are, and we felt JUST the way you do, so please hear me when I say that we know of what we speak. Find a way to enjoy the small improvements, and someday in the future you’ll look around and say "hey, I’ve hardly had a thing to complain about that related to Graves’, all day!" I am sorry to say that it won’t be tomorrow, but it WILL come, I know it. I really wish there were some magic potion to accomplish a truly rapid recovery, but there isn’t. So grab a blanket of patience, rally the forces within, drop encumbrances to your time that suck everything out of you, bulk up on the activities that feed your soul, and you’ll be able to ride this out okay. I promise.

[Ski]

in reply to: Levothyroxine sodium Questions (Generic Synthyroid) #1063037

This is actually really common when we either begin taking replacement hormone, or when we change doses of replacement hormone ~ for a little while, we feel kind of like a teeter/totter, up & down (maybe a week or two), and then our body accumulates enough thyroid hormone and starts to acclimate to the dose, and we start to feel much more stable. Usually it doesn’t spike out of control, it’s just a momentary inconvenience.

Talk to your doctor, certainly, since it’s alarming you ~ you should get medical advice straight from the prescribing physician ~ but it’s likely just an artifact from beginning to take replacement hormone.

Until you find the perfect dose for you (oh, holy grail of thyroid disease!), you may continue to have lingering issues on one side or the other, but you’re closer every minute, as I like to say. ” title=”Wink” /> Once you’ve been on your replacement hormone for about 6 weeks, your body is fully acclimated, and will give an accurate reading on your TSH lab test, so then you can consult with the doctor to see how to proceed with the process. At that point, you may want to begin a symptom diary, because once you’re CLOSE to normal, the tiny tiny shifts can be managed by using a symptom diary in consultation with the doctor. They LOVE data. ” title=”Smile” />

Check back in, let us know what your doctor said, and let us know how you feel! You’ll be back to normal eventually ~ it’s just never as quickly as we’d like, I guarantee it. ” title=”Very Happy” />

[Ski]

in reply to: Susceptible to other things?? #1072076

Abnormal thyroid hormone levels can easily weaken the body overall, and make you more susceptible to the normal virus and bacteria activity at this time of year. That’s the hyperthyroidism though, not exactly "Graves’," if you see the distinction. If your thyroid hormone levels had been well managed and remained normal during this period, even though you’d still have Graves’, you might not be seeing the same increase in illness.

You could do yourself a favor by being ultra-obsessive about keeping germ activity around you to a minimum right now ~ wash hands, wash hands, wash hands, etc. etc. etc.

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