[Ski]

in reply to: Suppressed TSH on ATDs #1065242

Some patients do experience a real lag in TSH response, especially early on in treatment (believe it or not, you still qualify somewhat as a patient that is early on in the treatment process), and for that reason we usually suggest that you always have a full thyroid panel done until your levels stabilize (sounds like you’re doing that), so you and your doctor can compare your T4, T3, symptoms, and TSH, to help determine what your next course of action may be.

There are theories as to why the TSH takes longer to respond, but nothing conclusive has been proven. We DO know that TSH represents more of a "running average" of levels, in other words, it takes into account thyroid hormone levels over several WEEKS, rather than moment to moment, but there is something "special" about travelling from extreme hyperthyroidism back to normal levels that can result in what you’re experiencing, which is a longer lag in rising levels than one would expect based on the normal T4/TSH feedback loop. Some suggest the pituitary kind of "went to sleep" when it comes to thyroid hormone levels while it was producing so little TSH for so long, and it takes a while to "wake up" again, but that’s not a scientific statement. The doctor may want to test your pituitary to make sure it’s functioning properly.

[Ski]

in reply to: So tired #1065388

Thanks so much for letting us know it’s getting better!! I’m SO glad to hear it. ” title=”Very Happy” /> Keep on keeping on, closer every minute, better all the time!

[Ski]

in reply to: Post-surgery update #1065285

Thanks so much for the update, and so soon!! Your post will help people for years to come, I know. ” title=”Very Happy” /> I’m glad you’re feeling relatively well now, and looking forward to improvements moment to moment. Keep on with that great attitude!!

[Ski]

in reply to: Mother with Graves #1065329

It does seem a little odd to have taken such a dramatic step up in replacement hormone, though of course we don’t know what drove that decision, so it’s impossible for anyone but her doctor to say for sure.

Usually, after a patient has been managed on replacement for a long time, the doctors go by TSH, because it’s a more precise measurement if levels have remained relatively stable. If things have been changing with her thyroid hormone levels, there may be value in getting the full panel of thyroid hormones. Definitely something to discuss with the doctor, especially considering her shortness of breath and high heart rate. I know there were some weird things going on with my Mother’s medications when she was in her early 80s ~ she had high blood pressure issues for many years, and suddenly had issues with low blood pressure, and instead of reducing the dose of medication meant to manage the high blood pressure, they put her on a SECOND med to lower the blood pressure. Seemed pretty nuts to me, and this sounds a bit similar ~ change one thing, then she needs another to manage what comes out of that. As I said, though, we aren’t qualified to say "that’s wrong," we can only recommend that you investigate. No harm in asking for an endocrinologist to consult, that’s their specialty.

[Ski]

in reply to: 6 MONTHS RAI AND STILL A ROLLER COASTER RIDE #1065333

Hi there,

I know it’s tough ~ the fact is, though, that the doctor has a point, unfortunately. Believe it or not, six months after RAI is still kind of early in the process. Sounds like you’ve measured hypo and begun replacement hormone, and that CAN be a long adjustment/healing process, because there are several things going on in your body. First, you’ve been under constant assault of hyperthyroidism (prior to the RAI, and probably even for a time after RAI). Second, you’ve had a RADICAL drop in thyroid hormone levels (from above normal to below normal), and the thyroid MAY not actually be finished working to some degree. Third, you’re beginning to take replacement hormone. All of these things have had different effects on your body, and in addition to ALL of that, as your thyroid hormone levels shift (even if they’re moving in the right direction), your body goes into a kind of "shock" and removes resources from the parts of the body it deems "unimportant," like the hair and nails ~ things your body does not need in order to stay alive. So the fact that your hair is coming out a lot is a sign that your thyroid hormone levels are MOVING, but doesn’t indicate that they are not healthy. The fact that you’re feeling a little more hyper after beginning to take an increased dose of hormone replacements is EXTREMELY normal. I know that when I change doses ~ whether it’s an increase or decrease ~ I usually feel like a teeter/totter for a couple of weeks. One day I’ll feel hyper, the next hypo, and after about three weeks I settle into the "true" feeling that seems to ultimately reflect how my body is reacting to the new dose. Unfortunately, it is not a good idea to have blood tests done until you’ve been on a new dose for at least six weeks, because that’s how long it takes your body to fully acclimate and for blood test results to be accurate. For that reason, you may be doing yourself a disservice by adjusting your dose on your own. Now when you have tests run, you don’t really have the correct information on how your body is reacting to the dose you’re taking ~ because it’s been changed during that six week period. That can actually LENGTHEN the time it takes to find the right dose for you.

I KNOW it is hard and it seems as if you’ll just crumble if you have to wait one more minute to feel well, but wanting it isn’t going to make it come any faster, I’m sorry to have to break it to you. Do everything you can to conserve your resources and keep your activities limited to things that FEED your soul and fill your heart ~ drop anything that’s only a drain on you, and do not apologize for that. YOU NEED TO HEAL.

One more thing you should know. Until your levels are normal, and have stabilized, your body will not even begin to heal from the damage caused during your hyperthyroid state. So, reaching normal levels is great, stabilizing them is wonderful, but only then can the healing begin, which is yet another state of "less-than-normal," though it gets better every day. I can promise you there’s an end to this road. I know it’s further away than you’d like. Hang in.

[Ski]

in reply to: Treating the underlying autoimmunity #1065375

If your thyroid does not function, then no, you don’t need to worry about intake of iodine. If you are still pretty early on in the process and are not certain that your thyroid has been completely destroyed, then you might want to keep a lid on things like seaweed. I don’t know how much iodine may be in your supplements, but you could talk with your doctor or pharmacist to find out if it seems like enough to affect you badly. If your levels are managed at present, and you are feeling well and labs are stable within the normal lab ranges, then you shouldn’t worry about it at all, really ~ even if it’s having some effect, whatever you’re doing is accounting for it, if everything else is well.

[Ski]

in reply to: Follow your instincts with treatment #1065343

I’m really glad you have come to a normal point ~ while it’s true that too many doctors push patients into RAI quickly, I can tell you for a certainty that this is not a "self-limiting event" that you have now "beaten." You have Graves’ Disease, there is no question. You are in remission, and that is WONDERFUL. Keep a vigilant eye on symptoms, because stressful events are likely to bring about a jump in symptoms for both your thyroid and your eyes. Remember also that the thyroid disease and the eye disease follow separate courses, so you may have changes in your eye symptoms but none in your thyroid hormone levels, or vice versa.

They know a LOT about the mechanisms that occur after Graves’ Disease comes on, but NO ONE knows why the antibodies rise and fall. We know stress CAN cause an elevation in antibody levels, and thus symptoms, but some people experience *no* particularly large stress event, and yet their thyroid hormone levels skyrocket, or their eye symptoms suddenly become severe.

Keep your body as healthy as you can, that will ALWAYS help, but please remember that this is something you carry with you, that may strike again. That’s one of the bigger reasons that doctors recommend RAI right out of the gate (in my humble opinion), because they see people go in and out of remission, to their mind it’s "easier" just to go to nothing and get replacement hormone. Of course, it’s not their thyroid, is it? ” title=”Very Happy” />

[Ski]

in reply to: Rai restrictions #1065347

It depends on your dose, your children’s age, their typical needs from you, and your doctor’s view of restrictions. If your doctor gave you this amount of time away from them, I can only presume they had good reason to do so ~ there are a couple of different considerations when you’re talking about keeping your distance from other people, children and pets after RAI, and I’m sure the doctor took all of those details into consideration when they made the decision. You could talk with the doctor who gave you those restrictions to see if they have any ability to adjust it for you. Still, it’s only a few days away, closer every minute!

[Ski]

in reply to: New to this. I am Really Confused. #1065358

There’s not much in diet that is necessary to change at this point ~ you may want to skip seaweed for a while, while your thyroid is still working, because it’s the only food with enough iodine in it to be worrisome.

A word of caution ~ the waiting can be a VERY long process, not just a week or two, not even a month or two. You need at least six weeks just to flush out the excess thyroid hormone that existed in your system on the day you took the RAI, and the RAI can continue to affect your thyroid function for up to six months (though it does the bulk of its work in the first six weeks), so your levels can be fluctuating throughout, and that’s pretty hard on your body too (even if they’re moving in the right direction).

At first, some patients experience a short period (a few days) where they feel even more hyper than before ~ it happens because the thyroid cells that are dying have also been storing thyroid hormone, so when they are destroyed, that hormone gets pumped into your system. It can happen any time in the first few weeks, but it is transient. If you feel particularly anxious, call your doctor and see what they say. Sometimes the doctor will give a few days’ worth of blood pressure meds to relieve those symptoms. Sometimes it’s not a concern. Sometimes it doesn’t even happen.

Keep close at hand a list of classic hypothyroid symptoms, so that you can evaluate the way you feel and get your blood tested if you believe you’ve slipped into hypothyroidism. Look for at least four or five of the classic symptoms, happening to you regularly, before you ask to be tested. I went to the lab WAY more often than I needed to, but I didn’t really have an idea of what to look for either. I felt "slower," so I got tested, but I wasn’t truly hypo for quite some time. A standing order at the lab can help because you can get tested whenever you believe you’ve hit that point, but the doctor may rescind it if you use it too often.

Beginning the replacement thyroid hormone as soon as you DO read hypo is important to shortening the recovery curve. Your lab results can lag behind your symptoms, and then it takes a while for the replacement to build UP, so as I mentioned before ~ all a great big waiting game. But the advantage you have is this: you got a diagnosis and have begun treatment. There are those who are ill and don’t even know what they’ve got, because their doctor never bothers to do a simple blood test. So, as lousy as you may feel in the coming weeks, remember, at least you’re on the road to healing and health. You WILL GET THERE. I promise. ” title=”Very Happy” />

[Ski]

in reply to: New to this. I am Really Confused. #1065354

Hi Allison,

Just based on the fact that you have mild eye symptoms, I would say you may not want to choose RAI treatment. You can take a little time to examine all three treatment options and decide for yourself which you prefer. The RAI has a slight potential of "temporarily worsening" your eye symptoms, and depending on the level of your symptoms now, you may want to AT LEAST explore the option of taking prednisone (oral steroids) a little bit before and after the RAI (a few weeks in total), to minimize the possibility of worsening symptoms. Prednisone certainly carries its own side effects, so typically that option is reserved for those who have severe eye symptoms and have no other choice for treatment, but in any event, I wouldn’t rush to the RAI before you REALLY understand what’s going on, where you stand, and what your options are.

Nothing happens quickly while we recover from the hyperthyroidism associated with Graves’ Disease, so jumping on this and having treatment tomorrow isn’t likely to result in a "really quick" process of healing. You have the option to choose ATDs ("anti-thyroid drugs," either methimazole or PTU), which are medications that can keep your thyroid hormone levels in check. In about 40% of patients, they can take these medications for one to two years and achieve a "remission," meaning they have at least one year with normal thyroid hormone levels after they STOP taking them. Even if you do not achieve remission, these can be used longterm to control your thyroid hormone levels. The final option for treatment is thyroidectomy, surgical removal of the thyroid, which is perfectly valid and many have chosen it.

No need to rush, though treatment of some kind is essential. Unchecked, this can be very dangerous. ATDs can bring your thyroid hormone levels back into the normal range without permanently destroying your thyroid, so you can get your "mind" back, as it were (hyperthyroidism makes it VERY difficult to think rationally), and put your thoughts together to find out what you’d LIKE to do.

[Ski]

in reply to: Treating the underlying autoimmunity #1065369

Remember, "boosting" the immune system is "boosting" the autoantibodies, so that specific action can be a problem. For instance, I like to use echinacea when I feel a bad cold coming on, but I have to take it about half "regular" strength because it tends to increase the slight eye symptoms I have.

[Ski]

in reply to: Treating the underlying autoimmunity #1065366

Well, the underlying autoimmunity is truly our holy grail ~ as it is for all autoimmune conditions. They’ve tracked back some of the mechanisms that occur before autoimmunity results, but the fact is that the science to get us there will not help those of us that have already contracted an autoimmune condition. Once the real answers are achieved, they MAY be able to address patients with a high likelihood of having some autoimmune condition so that the last piece of the puzzle never falls into place and they do not manufacture the damaging autoantibodies. Those of us who have begun to manufacture the autoantibodies and have become ill as a result have a different problem entirely, and the only way to get rid of those is to compromise the entire immune system, so we’re kind of stuck with the situation of dealing with damage control, symptom control. There is some evidence that the antibodies CAN lessen over time, for some. There is also increase/decrease of antibodies that happens for no specific reason scientists have been able to identify to date, so we have a lack of control over that, to some degree. Stress can activate the immune system, so that elevates antibody levels overall, and of course that includes the autoantibodies, so stress levels (or, more accurately, our response to stress) can affect the severity of our symptoms. Certainly, keeping your body healthy overall cannot hurt as you are going through any disease state, so that is a wonderful course to pursue, but don’t fool yourself into thinking it can reverse your condition or control your thyroid hormone levels overall. It may make the path easier, so feel free to explore, but do let your doctors know about anything else you are pursuing in the course of your treatment. There can be a change in your body’s reaction to meds or interactions with supplements you take, so it’s always best to keep everyone informed, all around. Talk with your pharmacist if you have questions about supplements, they have a great deal of information on that.

[Ski]

in reply to: FEEL BETTER ONLY FEW DAYS AFTER SYNTHROID INCREASED? #1065377

Sure, it’s actually pretty common to feel a little more up, then a little more down, alternately in the first couple of weeks, so don’t be surprised if it seems to drop a little soon too ~ take heart. ” title=”Very Happy” /> Give it those six weeks and then you’ll know for sure, you’ll notice that some kind of feeling has settled in. Keep up the symptom diary, especially now.

[Ski]

in reply to: So tired #1065379

Hi Maria,

Cytomel is a T3 supplement, which helps some people, but only a really small group. Some people take it and feel better at first, but find hyperthyroid symptoms returning over time (after a few months). T4 is the inactive thyroid hormone in our bloodstream, and that’s what most thyroid hormone replacement consists of. When our body needs the active form of thyroid hormone, it makes T3 out of the T4. In a small group of people, their body has trouble converting T4 to T3, so they benefit from supplementation, but most of us successfully convert our replacement to T3 for use. If you’re going to suggest T3 replacement to your doctor, you should first have your blood tests done, including T3 values.

The most common reason we can continue to feel badly is that our thyroid hormone levels are not normal *for us*. The range of normal is HUGE, and what worked at one time in your life may not be the right level for you now. Age, activity level, hormonal changes (pregnancy, menopause), weight, and other elements can play a part in changing your "normal" thyroid hormone level for optimum health. Try keeping a symptom diary for about a month, then take it in to your doctor, and ask if they are willing to adjust your replacement hormone dose based on the symptom diary. It is possible to adjust replacement dose and stay within the normal "range," and you may find a great deal of improvement this way, if that’s what’s causing your issues. You need to wait at least six weeks after adjusting the dose in order to make sure you’re seeing accurate lab values about the way your body is reacting to the change, and in the meantime you may feel a little bit up/down, but after the six weeks are up, maybe you’ll have some improvement.

IF NOT, remember that not everything we feel is related to our thyroid. We can often ascribe all our body’s ills to thyroid hormone levels, when in fact it’s something else. Our doctors can also be fooled into thinking that if our lab values read in the "normal" range, we should just go home because we’re being a crybaby. We need to remember that our doctor is meant to solve our problems, and mention that if our doctor does not believe our complaints are caused by a thyroid imbalance, then the doctor should continue looking for a cause, because we are not feeling well, or normal, and we deserve to know what’s wrong.

[Ski]

in reply to: Wondering? #1065400

These are all very good questions ~ the answers aren’t necessarily simple, but I can tell you right now that this is very treatable, and you should be able to reach your goal of parenthood, as long as you pay close attention to what’s going on. You have several choices of treatment ~ meds, RAI, or thyroidectomy ~ and each have their own set of pros and cons. The medication you’re on right now will help to normalize your levels so you can get your sense of reasoning back, but give that some time. Hyperthyroidism messes with us BADLY, including our ability to think clearly, so take in what you can, and just know you’re on your way to health. IT TAKES A WHILE, no matter what choice you make for treatment, so don’t get "tricked" into any one particular thing because you think it’ll be the fastest way back. Just take some time to go over your options and see how you feel about them. This site is great, there’s a lot of information, and lots of people who have been where you are, and they can each help you in their own unique way.

I’m going to sign off now so you can have SOME peace of mind, but we’ll be back with more details for you. Promise. ” title=”Very Happy” />

[Author]

Posts