[Ski]

in reply to: Lost Post – Question About Causal Link #1075223

I have truly never heard a story like this ~ horrifying that a doctor could mix up the meaning of thyroid hormone tests, but my nurse practitioner did just that! Luckily, I knew better and coaxed him into remembering which level meant what… I think the likelihood of your specific circumstances having ben studied is pretty low. I would suggest that you discuss an uptake/scan to confirm your Graves’ diagnosis. In the meantime, if your levels are still testing hyperthyroid, you should at least take ATDs to see if they will bring the level down. This extended period of hyperthyroidism has to have done a real number on your body, and you need to stop that from continuing.

[Ski]

in reply to: do you ever get your energy back? #1075185

I’m not sure about a "new" normal, but I can say that it takes a while to undo the damage from being hyper, and only then can we begin on the road back to any kind of normal. Believe it or not, March was not that long ago, in "thyroid" time.

For the most part, we get back to something that feels very VERY close to our old normal, over time.

Remember that your body was under assault, and assaults have effects that you may not recognize right away, that may not be completely fixable. That doesn’t mean your treatment wasn’t effective, it means the disease took a toll on you.

If you continue to feel sub-par after a certain period of time at one specific normal thyroid hormone level (months, at least), then speak with your doctor and talk about adjusting your dose, in small small increments, so that your levels remain in the normal range but move a little toward what you feel you need. Keep a symptom diary throughout the process (even now), so you and your doctor can correlate certain symptoms with certain lab results, and ultimately hone in on what is probably YOUR normal thyroid hormone level. Your "normal" state is a different thing, and it will take some time at the right level before you really feel that returning. I think everything is a little more difficult after thyroid disease, but I also think everything is still possible after thyroid disease.

[Ski]

in reply to: What Now? #1075156

Just a quick comment ~ if your TSH is "too high" as you say (higher than normal) that usually means that your thyroid hormone levels (T4) are too LOW, which would mean that you are now hyPOthyroid and need more thyroid hormone replacement. TSH and T4 have an inverse relationship, because thyroid stimulating hormone actually comes from the pituitary gland in response to thyroid hormone levels it "senses." It is a very accurate read on your status, typically, as it comes from something of a "running average" it has sensed in your blood over a period of some weeks.

Please take a look at your latest blood tests to clarify which "camp" you fall in. It’s typical to go hypo after RAI, until replacement thyroid hormone builds up enough to make your levels normal. You would still feel badly, and you would still be "under treatment" by doctors, but it wouldn’t mean that you are still hyper. Please talk with your doctor and clarify where you stand before you panic.

Either way, you need to get to normal levels. It’s time consuming either way, but it’s SO worth it.

[Ski]

in reply to: graves/RAI/pregnancy #1075329

Bobbi and Dianne have given you the best possible information to consider ~ I just wanted to point out that since you have been in a remission for nearly a year, you may find the process to "normal" a little easier, no matter which treatment you choose, because hopefully at this point you have not been hyperthyroid for very long. You also probably have a good idea of what your own personal "normal" thyroid hormone level IS, which makes it easier to dial in. Do remember that you will need at least six weeks between thyroid hormone replacement dose changes (when you get to that point), so even though you know where you’re headed, it may take a little while to get there.

[Ski]

in reply to: 23 and just diagnosed with Graves Disease #1075167

Hi again,

I’m glad we’re able to help, but you REALLY need to be consistent on PTU or you won’t get the benefits it can give you. It needs to build up in order to be most effective (it’s not like pain pills, take it and it works until the next dose), and you NEED SOMETHING. Hyperthyroidism IS dangerous ~ I don’t want to feed into your fears, but if it helps you be consistent about taking the PTU, it’ll be worth it. You need to get those levels down just to stop the attack. As long as you are hyperthyroid, your every cell is being assaulted. Thyroid hormone is the "fuel" for each cell. Think of your body right now as a car with a brick on the gas pedal. That has to stop.

It’s a good thing you left work when you were feeling so badly. You may be one of the rare Graves’ patients who can make an argument for short term disability benefits until your thyroid hormone levels drop enough to allow your body to begin to heal. Check into that. I’m sure the anxiety of having to get to work and perform there is a large part of the worst of your fears. Staying home might be just what you need right now.

[Ski]

in reply to: 23 and just diagnosed with Graves Disease #1075163

Hi hopeful,

Well, I can say that you will get better ~ it will take time, but you WILL heal, now that you know what’s going on. The most frustrating time for all of us is when we don’t know what’s going on, and the second most frustrating time is when we’ve just discovered what’s going on. ” title=”Very Happy” />

Your body has literally been under constant assault. If the PTU works for you, it will still take a while for you to really feel the difference, so in the meantime, do everything you possibly can to keep your stress level down. I don’t think you have to lose your job over this, but you will need to figure out some way to keep your cool. We all understand the feeling that we’re constantly overreacting, so I know your mind can get away from you sometimes ~ it’s chemical, not emotional, believe me, and we all wish that we could just "get over it," but it’s a little more complicated than that. Still, if you feel as if you are taking care of yourself emotionally, I think it’s easier to keep your cool when things get stressful. We cannot remove stress from our lives. It’s only how we react that hurts us.

When we are hyperthyroid, it can take up to six weeks just for the excess thyroid hormone to get out of our bloodstream ~ no matter what treatment you choose ~ so you need to give yourself at least six weeks on the meds to figure out how you really feel. (If you have a severe reaction, of course, you’ll need to talk with the doctor before that time.)

Just please know that things will begin to improve, beginning NOW. They will improve in small bits and pieces. You must be patient. Try and look at each day and find one thing that was better than the day before. It helps to have a positive outlook.

Find out all you can about Graves’ and its treatments ~ knowing that you’ve followed your own personal CHOICE in treatment is important too.

FOR NOW, please please please be kind to yourself. Don’t overcommit. Figure out your limits and do what you most want to do with your free time. Hot baths, funny movies, painting a picture, visiting the beach ~ it’s different for everyone, but the things that feed your soul will be the best way to spend your time.

PTU can be tapered off, as your thyroid hormone levels drop, so don’t worry that you’ll have to be taking that med "forever." Also, beta blockers can keep some of the worst symptoms at bay (tremors, anxiety) and they protect your heart while you are hyperthyroid, so don’t worry about taking them either. You can wean off of them when your levels are better (there’s no stopping all at once with beta blockers, but typically we don’t need a very large dose, so weaning off consists of a couple weeks’ time).

When the day comes that you need to take thyroid hormone replacement, it’ll make you feel better to know that the replacement hormone is chemically identical to the thyroid hormone released by our thyroid, so it is not processed in the body as a "drug," meaning it does not tax the liver or kidneys. Some people experience allergic reactions to the fillers in the pill that make it into a certain color, or shape, so sometimes you need to try more than one to find yours, but again, options are out there, there are even pills that have NO additives, so it is an easy thing to fix if it happens to you.

Let us know how things are progressing for you. We know this can be tough, and we’re living testaments to the fact that you can and WILL get better.

Glad you found us. ” title=”Very Happy” />

[Ski]

in reply to: do you ever get your energy back? #1075182

It’s time to have a frank discussion with your doctor and look over all of your lab results ~ it may help to have a symptom diary to show the doctor as well. Start it today ~ I think there’s one available as a bulletin from the GDF. For the most part, make a daily diary to outline your symptoms and judge their severity (scale of 1-10, perhaps). Doctors love data ~ it’s harder for them to respond to "I have no energy."

If your thyroid hormone levels are normal FOR YOU (not just "in the normal range") your energy should have returned by now. It’s possible to adjust your replacement hormone and not leave the normal range. That’s why you need to discuss it with your doctor. Some symptoms come with both imbalances (little high or a little low), so the symptom diary may help you both to put it in perspective and try to figure out which side of "your normal" you may be on. Each dose change will make you feel a little weird for the first couple of weeks. It doesn’t indicate that the dose is incorrect. Give your body about six weeks to adjust to a new dose before you get it checked again. It’s a long process, but if you FIND your normal and get your energy back, it’s worth every minute.

If you have trouble with this ~ if you find there’s nowhere on the normal scale where you feel as if your energy begins to return ~ then you may have to discuss other things that may be causing your symptoms.

I wish you luck ~ please come back and let us know how things are going!

[Ski]

in reply to: New to this #1075194

Hi Diane,

I will respond more fully later, but I’m getting very little "solid" time with our home network right now, and I want to make sure I get at least one comment in to you. ” title=”Very Happy” />

As far as your weight, that is a challenge, but it does not have to be as bad as you think. If you take precautions, eat right, do what you can to exercise, you can keep yourself as fit as possible for the time when real, strenuous exercise will be an option. For right now, you need to NOT work your body too hard. It’s harmful in many ways, and can actually contribute to making it harder to lose weight later.

I know it’s hard to contemplate gaining weight. I’ve had weight issues all my life, I thought I’d finally figured it all out, then Graves’ hit. I’m finally able to work out and lose some of the weight, and in retrospect, I really didn’t gain all that much. I have to factor in ten years’ worth of aging as well, so all in all I’m not doing so badly. Just take care of your body and you’ll have an easier time.

More later! Take heart! We’ve all been there. It’s NOT easy. Forgive yourself for anything you may do that seems out of character. Just learn all you can and focus on getting well.

[Ski]

in reply to: My Story and My questions…PLEASE HELP! #1075203

Your hair may be changing because of the change in your thyroid hormone levels ~ it may not have been triggered by stopping the methimazole, it could be just because your levels are fluctuating so dramatically right now. Imbalances OR radical shifts in thyroid hormone levels (even if they are going from unhealthy levels to healthy ones) trigger the body’s response of removing support from the hair and nails (in order to preserve it for life sustaining functions). It is frustrating, and taking care of your hair CAREFULLY right now will help. Don’t worry, it won’t be permanent.

[Ski]

in reply to: About the holidays… #1075235

I don’t believe alcohol (in moderation, as you say) is "against the rules" for a Graves’ patient. Relax and have a nice glass of wine. ” title=”Very Happy” />

[Ski]

in reply to: I am in remission but… #1075243

Hi jlolsen40,

First, technically (I know, I’m being rather ridiculous) a remission is defined as a period of one year or more in which you do not take any medication, and still retain normal thyroid hormone levels. If you are still taking ATDs, you are not in remission. If you have not been off them for more than a year, you cannot define your status as in remission (yet).

You say your thyroid hormone levels are "within the normal range," but that range is truly enormous. People have their own normal "point" along that range, and finding it is one of our tallest challenges. If you have thyroid tests that were done prior to your illness, that’s a great way to find your own personal normal. If not, it can take some trial and error.

In addition, you are early on in this process. It’s quite possible that some symptoms will linger as your body continues to heal (I am sure it’s not finished healing yet). It can only begin to heal when you arrive at normal thyroid hormone levels, and the process can a long time. Every cell in your body was under assault when you were hyperthyroid.

One thing we have found that can help as you go through this process is to keep a symptom journal. You can note episodes of certain bothersome symptoms, rate them perhaps on a 1-10 scale, and note your thyroid hormone levels when you get them tested. Doctors love data, and this gives them a much better window on your progress than saying "I’m tired all the time," or "I got mad at my xxx yesterday without provocation."

It is possible, if you are on meds, to slightly adjust them and still remain in the normal range. Drilling down to YOUR normal will be well worth the time spent.

[Ski]

in reply to: New Graves & Hashimotos and other stuff #1075248

Hi Kristen,

Well, you are certainly being pulled through the wringer with all of this, I am so sorry!

Where to start? First, mamabear is right about the autoimmune stuff ~ the tendency to acquire an autoimmune disease is what we start with, then add to that a particular vulnerability in the body, and some kind of external trigger, and there we go. Science is only just beginning to learn the details, but that appears to be the sequence of events. Given that, some people have many vulnerabilities, other have few. Some people will experience external triggers that throw their body into a disease state, others will not. So, what the doctors will say is that once you have one autoimmune disease, you have a slightly higher chance of developing another. That’s all they really know for sure.

As for your shortness of breath, I think that’s one of the symptoms that can occur in either extreme (hypo or hyper). In addition, changing your thyroid hormone dose (even if you’re already hypo) can trigger a kind of "seesaw" period, where we have periods of feeling hypo and then hyper in the first few weeks. It should even out.

Another thing that may contribute to shortness of breath is just the fact that your body is fatigued, and that you may have lost quite a bit of muscle mass. This may be a good time to hook up with a physical therapist and take some measurements on your strength and endurance levels, then put together a sensible exercise plan. You may be surprised to find out how much damage has been done, and without professional help it’s easy to overdo.

[Ski]

in reply to: GD treatments / to seekingclarity #1075281

Hi Tammy,

As far as I know, no conflict with using ATDs when osteoporosis is present, meaning I don’t think the medication would specifically make it worse or prevent treatment, but check with the doctor and the pharmacist, since it’s a particular concern of yours.

[Ski]

in reply to: Post Surg – still have Graves? #1075299

Hi Eileen,

First, the thyroid disease and the eye disease are separate, with separate courses of disease and completely different treatments. Treating the thyroid does nothing for the eye symptoms. Doctors are beginning to speak of Graves’ as a "syndrome" rather than a "disease," so we have multiple issues to concern ourselves with. You’ve had your thyroid treated, so that part is mostly "done" except for monitoring and re-adjusting occasionally to allow for various things that bring on a need for different levels of thyroid hormone (age, weight, activity level, other hormonal "thresholds" like menopause).

Now, an RAI is supposed to kill your thyroid completely, so it renders you hypothyroid. HOWEVER, once you are taking thyroid hormone replacement and your blood levels of thyroid hormone and TSH are normal, you are no longer hypothyroid. You would be, if you stopped taking your thyroid hormone replacement, but as long as you are taking it and your levels are normal, you are NOT actively hypothyroid.

Are you under the care of an opthalmologist for your eye symptoms? That’s the right doctor for the job. It’s typical for Graves’ patients to have eyes that are very different (one sticks out more than the other, for example). If your eyes are actively changing right now (bulging more or less, giving you double vision, etc.), then usually a doctor will just wait and see, unless your vision is threatened (which is very rare). Still, it’s best to be under the care of a physician so you can more clearly define your transition into the "cold phase" when changes stop, because that is the time that you can start to talk about surgical solutions to the bulging.

I completely understand about the self esteem issues ~ some patients choose to use lightly tinted sunglasses all the time, which helps them "hide" their eyes a little. Anything you can do to help yourself feel better will help. I have heard that raising the head of your bed can help a little bit ~ I had a bit of "fat displacement" around my eyes because of Graves’, and sleeping with the head of the bed raised did help me. We put pieces of 4x4s under the bedframe. It’s better than using a stack of pillows because it keeps your head elevated no matter what (you can "come down" off the pillows while you’re sleeping) ~ plus with pillows you have a stress point at your hips that makes you uncomfortable over time.

In any event ~ there are things the opthalmologist can discuss with you for keeping the inflammation down as much as possible. The doctor could also give you some idea of the severity of your condition.

[Ski]

in reply to: GD treatments / to seekingclarity #1075277

There are thousands of reasons to go with thousands of patients. I chose RAI for myself, for many personal reasons. The real issue is that there is no one perfect treatment, they all have pros and cons. The most important thing is feeling comfortable with your choice. The numbers may be skewed because many doctors feel that, given the options, they would choose RAI. They may have an overall impression of the three treatments, but they do not have the disease, so the fact that they would choose it doesn’t necessarily mean you would. OFTEN, they put forth their opinion as the "only" choice, and the patient is so desperate for help that they do it without looking into it any further.

[Author]

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