[Ski]

in reply to: Treatments for Eyes #1073496

I’ve found that raising the head of my bed minimizes the amount of swelling I get around my eyes. It uses gravity to keep the fluids from settling there. My husband put 4×4 blocks under the frame at the head. It’s better than using a mountain of pillows because you can still sleep flat on the bed and get the benefit. Big pillow mountains create a stress point wherever we begin to bend, plus it’s easy to roll off or move the pillows in your sleep, so if your bed is raised, that can’t get undone before morning. The difference, for me, was pretty remarkable.

[Ski]

in reply to: Anyone that tried natural methods/diet? #1073656

Hi again KMB,

The process of "removing" your thyroid through RAI can take varying amounts of time, depending on a few factors. I was initially given what is referred to as a "low dose," which was NOT my wish, but I was not aware that I needed to discuss this with the dosing doctor. My endocrinologist and I agreed that I wanted an ablative dose, and the radiologist/oncologist made up his OWN mind before choosing my dose. This led to a prolonged period without going hypo, and actually continuing to be hyperthyroid at a subclinical level, which can still be dangerous over time. I ended up having to do the RAI a second time. Had I been given a large enough dose to achieve ablation on the first try, the time period before I felt normal would have been shortened a great deal. I was told at the time that RAI does most of its damage in the first six weeks, then it is capable of continuing the process for up to six months, at a very low level. If you are given enough to destroy the gland completely, it should be "gone" after six weeks.

Still, it can take that long just to flush the excess thyroid hormone out of your bloodstream, so it’s possible that at or near the six-week mark, you could find yourself ready to begin replacement hormone. It doesn’t happen to everyone that quickly. If you do not go hypo that quickly, you may find yourself with steadily lowering hormone levels, through a period of relative "normal" and ultimately into the hypothyroid range.

After you go hypothyroid and you need replacement hormone, the process of bringing the levels back into the normal range can also take a little while. You need to give your body a full six weeks to adjust to any hormone replacement dose before you can effectively evaluate the blood levels it provides to you, and then adjust. You also do not want to raise your replacement hormone dose too quickly, as that can trigger symptoms of rapidly fluctuating levels. Each time you change doses, you’ll probably have a couple of weeks where you feel a little up, and a little down, then the symptoms even out a little. It might feel as if you are suddenly going "more hypo" or "more hyper," but you need to wait until your body adjusts, then take blood levels, to truly know the result it’s having on you.

Remember that at all times, you are closer to health. It’s time consuming. It can be frustrating. But each day you’ll be closer to the right point.

You usually need to keep away from people (at least six feet) for the first couple of days. Sometimes they give a capsule that takes time to "release" so that you can have someone drive you home "safely." Precautions for small children and animals can be a little more strict, because it’s hard to make them understand a six-foot rule. Also, doctors have VERY different opinions on the restrictions following RAI. You’d be wise to talk with the doctor ahead of time ~ I am constantly surprised by the lack of information given to patients in this regard. Many find out ON THE MORNING OF THE DOSE what the restrictions will be. How can you possibly plan to be away from everyone for at least two days when you are only discovering this on the day of your dose? Okay, off the soapbox. At any rate, after the first two days, you don’t need to be isolated quite so much. You don’t want to take any long road trips or plane rides for a little while. The need for restrictions goes away rather quickly.

About the RAI and bulging eyes: In one study, about 16% of the patients experienced a "temporary worsening" of their eye symptoms after RAI. Neither term was well defined. I had a few months of gritty eyes, and a tiny bit more bulging and irritation, after the first RAI. After the second, I had no such changes. None of it made my eyes much worse, but my eyes weren’t very bad at all to begin with. People who are experiencing worse eye symptoms may want to take a concurrent course of steroids, because in this study, those patients who took steroids had NO temporary worsening of eye symptoms. Steroids carry their own risks, so you need to weigh the risks and benefits before making the decision for RAI, and then before making the decision whether to take steroids.

[Ski]

in reply to: Graves Diagnosis before low idoine uptake results… #1073376

You may indeed be one of the lucky ones who has transient thyroiditis. An uptake/scan is pretty good evidence, if you don’t follow the GD pattern. If it’s thyroiditis, your symptoms should resolve within six weeks, I believe, so if they continue past 8 or 10 weeks, you may have to look again. The antibody test isn’t always conclusive (in other words, we can have a low level of antibodies and still really have GD). Doctors usually use the hormone levels and the scan primarily, then use the antibody test as a final piece to the puzzle if necessary. You have two out of three that do not match GD’s typical pattern, so as I say, you may be looking at a very temporary condition. Let us know, would you? ” title=”Very Happy” />

[Ski]

in reply to: Running and Graves #1073378

The usual rule is that once your levels have returned to normal, and you’ve had some time to heal, exercise should be okay as long as you build back up slowly and take it easy, so I’m not sure where the "horror" comes from in your doctor’s eyes. I’d be interested to hear some clarification on why that is his opinion.

One other thing that’s a little odd is that you continue to take beta blockers, which are typically given only until your levels come into the normal range, to protect the heart and relieve the anxiety and tremors, but once levels are normal we are usually encouraged to wean off of them (it takes about a week, we don’t take much, but a "cold turkey" withdrawal can cause a "bounceback" of the symptoms you’ve been correcting). Again, I’d be curious to hear the rationale for continuing on beta blockers, months after you’ve achieved normal hormone levels.

Back to the exercise issue ~ you may want to ask your doctor for a referral to a physical therapist so you can get a concrete evaluation of your fitness right now, and also develop a plan for getting back to the exercise level you enjoy. LOTS of GD patients get back to their favorite forms of exercise. We had a speaker at a conference who climbed Everest after his successful treatment. It can certainly be done. It’s not the easiest thing you’ll ever undertake, but it sounds as if you are truly motivated, and I’m sure you’ll get there.

One more thing ~ if you continue to have pushback on this, there’s no harm in talking with another doctor for their opinion. You don’t want to hurt yourself, but that cuts both ways (in other words, you wouldn’t want to be "hurting" yourself by not getting back to the fitness level you had).

[Ski]

in reply to: Anyone that tried natural methods/diet? #1073654

As long as you are able to keep your thyroid hormone levels within the normal range, bravo. If your thyroid hormone levels are outside the normal range, you need to do something to address that imbalance first, then move on to heal the rest of your body by whatever method you choose.

[Ski]

in reply to: Graves Disease Options #1073475

The beta blocker only masks your symptoms, but the onslaught of hyperthyroidism continues within your body. Bone mass is lost, muscle mass is lost, and your entire body is running on "overdrive" if your thyroid hormone levels are elevated. Remember, your heart is a muscle. Losing muscle mass within the heart can be extremely damaging, over time it can prove fatal.

Whatever you think of the options, at least we do have choices. The risk of dying from hyperthyroidism is real.

[Ski]

in reply to: hi #1073383

Dianne gave you great information ~ I just wanted to add that the beta blocker might make you feel better, but it is not addressing the underlying problem (hyperthyroidism), so your body is still under attack until you get some sort of treatment to bring your thyroid hormone levels down. Hyperthyroidism is stealthy, it can destroy all KINDS of body tissues, ruin your muscles, your bones and your heart, but slowly enough that you may not notice until it’s too late and the damage is irreparable. It is CRITICAL that you find the right amount of thyroid hormone, not too much, not too little.

[Ski]

in reply to: Newly Diagnosed w/GD glad to find this board #1073403

We’re glad you found us! Sounds like you’re in good hands all around. Just learn all you can about both conditions ~ Graves’ (the thyroid disease) and TED (Thyroid Eye Disease). For now you have gotten good advice and are proceeding with your treatment, but you will want to know what’s ahead. Breathe deep, you’re on the road to recovery. ” title=”Very Happy” />

[Ski]

in reply to: Update #1073389

Congratulations! I’m glad your symptoms are starting to improve, it makes all the difference when things start to look a little better each day instead of worse.

By the way, if you are interested in continuing to take Tapazole to manage your levels for a longer period of time, you should be free to make that choice. Usually I hear figures of at least a year before patients stop taking it to see if remission has occurred ~ give the body some time to get back to normal, to heal, and then check for remission. Your levels are near normal now (and TSH does usually lag behind, it’s actually more of a "running average"), but that only means that your body is finally getting the chance to heal from the onslaught of hyperthyroidism. A very low level of ATD is usually all that’s needed, once your levels are back in the normal range, to keep them there. If your doctor pushes to take you off the meds earlier, and you are not comfortable with that, speak up! Our doctors need to be team members, not "the boss of us." ” title=”Very Happy” />

Oh yes, one more thing ~ when you DO eventually stop taking the meds to see if you’ve attained a remission, you can still choose to go back on them if there is no remission. It’s not a given that the next step is RAI. Many people worldwide have used longterm ATDs to manage GD. It’s ALL up to you, barring any other reason to avoid one or another treatment.

[Ski]

in reply to: How important is TSI level for decompression? #1073396

I have not heard of a connection between antibody levels and the decompression surgery ~ antibody levels wax and wane for reasons that are not really well understood, and they do not always translate to "how sick we are," so the presence of antibodies is what is typically being investigated when the test is run, though rising and falling levels may be relevant as well (not necessarily the precise numbers, but the fact that they are rising or falling).

Ordinarily, with the results of an uptake/scan and blood tests, the doctor can conclusively say it’s Graves’ without having to do an antibody test. Sometimes it’s not so clear, and the antibody tests can provide the conclusive evidence, but that has to do with the thyroid disease, not TED.

In theory, perhaps a TSI reading could give an idea of the level of antibody activity prior to surgery, as some kind of predictor of triggering antibody response and further reaction in the tissues by performing surgery, but you shouldn’t be doing surgery when the eye disease is active anyway, so the antibody activity wouldn’t be relevant at that point. Maybe this comes into play when decompression MUST be done to protect the optic nerve during the hot phase.

I haven’t experienced the worst of TED, so some of what you’re asking may be familiar ground to those who have. I will defer to their expertise. ” title=”Very Happy” />

[Ski]

in reply to: Anyone that tried natural methods/diet? #1073646

Hi KMB,

I’m going to make this brief for now ~ kind of general ~ but you can find more info in other posts here.

First, about RAI: the amount of radiation we ingest is very small, and our exposure is about equal to a LONG day of sunshine. Thyroid cancer patients receive 10 to 20 times what we receive, and even then it is considered more beneficial than harmful. Long term effects have not been proven, and RAI has been given for more than 50 years, so there is a great deal of evidence. Iodine is only used in the thyroid, so it is taken up in the thyroid only. The rest (the balance of the 100%, after your uptake figures) is expelled from the body via the liquid waste channels, primarily urine, but a teeny tiny bit in the sweat and saliva. For this reason, we are urged to drink a lot of water, urinate frequently, and protect others from our sweat and spit, which is simply to avoid their ingestion of ANY of the RAI. We need treatment to our thyroid, they do not. Within 48 hours, the excess has been expelled and what remains is concentrated in our thyroid. At that point, precautions have more to do with the slight bit of radiation exposure a person could have by being close to our thyroid. RAI has a half-life of 8 days, meaning that every 8 days, half of the isotope will go away. If you were given 10 millicuries, with an uptake of 80%, then 2 millicuries would be expelled in the first two days, and 8 millicuries would remain in your thyroid. After 8 days, 4 millicuries remain. After 16 days, 2 millicuries. After 24 days, 1 millicurie, and so on. During the period when ANY would remain, precautions have to do with distance and time. If we are to be very close to someone, we should limit the time period. If we need to be with them for a long time, distance is better for them, to limit the amount of exposure they can have. Radiation is a lifetime accumulated thing ~ we all get occasional x-rays and scans that expose us to some type of radiation. Limiting the lifetime exposure is the point behind lead aprons at the dentist. It’s not as if we’d melt in the moment, being exposed. It’s just a good idea to limit exposure when you can.

About thyroid hormone replacement following removal of the thyroid (through RAI or surgery): Yes, there is a period of adjustment, just like with ATDs. The difference is that, once the thyroid is completely destroyed, you are working from a blank slate, instead of what can be a moving target, with antibody activity taken into account. At first, following RAI, there is a similar effect due to the slower destruction of the thyroid for a period of time, when you are chasing a moving target. The difference is that you KNOW levels will be dropping, so you can accommodate the likelihood and perhaps minimize the amount of time it takes to find YOUR normal. In addition, thyroid hormone replacement pills are made from the exact chemical replica of our thyroid hormone, so it is not necessary that it be "processed" through the liver like a pharmaceutical, and there is no long term risk associated with accumulating "by products" of the thyroid hormone replacement in our bodies. The only "side effects" we can suffer are symptoms of hypothyroidism when we’re not getting enough, or hyperthyroidism when we’re getting too much. Rarely, people find themselves to be allergic to the fillers in the pill, and for them there is a brand with no filler and no dyes.

Surgery is absolutely a rational choice, if that’s what you want to do. Many doctors will advise against it because they have a knee-jerk reaction against anything invasive. It is YOUR choice. If you want to pursue surgery, you should be free to do that. There are some risks, of course. The area is rather complicated, and the vocal cords pass right through. In addition, at the corner tips of the thyroid are the parathyroids, which help to manage our calcium levels. Typically the surgery leaves those "wingtips" behind in order to preserve the function of the parathyroids, but odd things can happen and some people suffer continuing difficulty with calcium.

The MOST important thing is that you understand everything about what’s going on, so you’ve made a really good start by coming here.

Let us know how it works out for you!

[Ski]

in reply to: Post-RAI Gastroparesis, Anyone? #1073548

We do become hypothyroid after RAI, but once we are regulated on replacement thyroid hormone, we are again euthyroid.

[Ski]

in reply to: Having Surgery in two weeks, and am nervous!! #1073413

Ask your surgeon for their complication percentage (in other words, the percentage of their patients who have experienced complications following surgery), and also for their fatality percentage. My guess is that the fatality percentage will be ZERO. It’s one of those things that they must warn you about, thanks to this litigation-happy society, but in fact happens EXTREMELY rarely. I understand your concerns, it’s always scary, but if you have an experienced surgeon with a low complication rate, you’ve done the best you can do for yourself.

[Ski]

in reply to: Edema anyone? – not PM #1073430

My understanding is that, in rare cases, PM can present as "regular" edema (rather than the classic "orange-rind" rash). I’m not sure how PM is confirmed ~ whether there’s a test for it other than visual cues. I seem to remember some kind of "punchout" biopsy that can be done, but I don’t recall the purpose. I’ve never experienced PM ~ I do get edema in one ankle but, for me, it has to do with a former sprain. With this affecting both legs, that’s unlikely in your case.

I’m not sure whether it could have to do with coming off steroids ~ maybe someone else can weigh in on that. I don’t think it would be related to your thyroid function.

[Ski]

in reply to: Anyone that tried natural methods/diet? #1073641

We will always applaud efforts to get our bodies more in tune, less frenetic, and it’s true, attaining a "Zen" state will always help autoimmune diseases, because in times of less stress, the immune system is less active, so the damaging antibodies do less damage. We’re not disagreeing with those particular methods, and in the end, I don’t think we’re disagreeing with you at all.

One thing I need to point out is that Graves’ Disease, the thyroid disease, is recognized as a separate disease from Thyroid Eye Disease (TED), even though the two happen concurrently in many patients. They take a separate course, the antibodies are different, and one is not affected by treatment for the other. Nearly all TED patients end their disease curve and resolve symptoms in a time period between 12 and 36 months. The ones who need surgical repair afterwards are those who had the worst possible symptoms at first. The scar tissue either needs to be removed, or space needs to be made in the orbit for the scar tissue. Those individuals are in a very small percentage of the overall GD population.

And just one more thing ~ "treating" Graves’ Disease with beta blockers only is NOT treating Graves’ Disease, and the patient runs the risk of suffering a great deal of bodily harm due to the hyperthyroidism. Thyroid hormone is literally the fuel for every cell in the body, and if you’re taking beta blockers, you are allowing the hyperthyroidism to continue, which damages literally every cell in the body when left unchecked. I see that you found this to be true in your case, and ultimately did take PTU to bring your thyroid hormone levels back into the normal range. Thyroid hormone levels are the golden value to seek during treatment. It’s true that doctors around the world have differing opinions on which of our three possible treatments is "better" than another. There’s truly no way of knowing who is "right," since with 100 doctors, you could come up with 100 different reasons for their opinion. All three treatments bring us to health, and it is our own personal choice which we take advantage of. We recommend the patient being fully informed and not doing what the doctor says, just because he said it.

We all agree that we would prefer to solve the disease than treat the symptoms. We are in touch with the medical professionals who are working on this, and at this point they are studying some very interesting information that may give them a chance to interrupt the disease process in those who are likely to end up with Graves’. The research is in VERY early stages, and results may not be seen for years. In the end, though, they admit they will only be able to help people who have not contracted the disease yet, but who are likely to (due to a genetic defect they have found in all patients with autoimmune diseases).

For those of us who have Graves’, each has an individual path, an individual story. I hope you understand we are all different, and I also hope that you acknowledge we have a right to choose for ourselves what treatment we pursue.

I’m GLAD you are well, I support your efforts at better overall health, and I too wish for a way to keep people from getting Graves’. For now, GD will always take a back seat in research dollars to diseases that are fatal and/or without any form of satisfactory treatment choices. In the meantime, we do the best we can for ourselves and our families.

[Author]

Posts