[Ski]

in reply to: Mea culpa … I didn’t introduce myself. #1072596

Wow, that sounds so troubling! The itching, in particular, doesn’t seem like it would come with Graves’, or more properly (due to the area that’s affected) Thyroid Eye Disease, but of course that doesn’t mean it CAN’T be associated. Please do let us know when you find out, this is interesting.

In the meantime, since you say that the swelling is more pronounced in the morning, you may find some relief just by raising the head of your bed while you sleep. Using a ton of pillows creates stress points at the body’s "bend point," and it’s also easy to fall off the pile in the night, but if your bed is actually raised, gravity can work in your favor to keep the fluid from collecting, even if you are laying flat on the mattress. I have had my bed like that for many MANY years, because puffiness around the eyes was one of my first symptoms, and still recurs (just a little) if I sleep on a flat flat bed. In other news, it relieved my husband’s nighttime heartburn. ” title=”Very Happy” /> Bonus. We put chunks of 4x4s under the frame legs at the head.

Do keep us updated!

[Ski]

in reply to: GD Recurrence #1072579

Yep, remission is, by definition, temporary. Get those levels tested. If all it means is you go back on the med, you’ll be back to health quickly.

[Ski]

in reply to: Mea culpa … I didn’t introduce myself. #1072594

Thanks for the intro, Melissa!

I must admit, today I’m getting far more giggles from reading posts than I have in a LONG time, thanks for that, everyone! ” title=”Very Happy” />

One quick note on the puffiness around your eyes ~ sometimes puffiness can result from hyPOthyroid levels, so that’s something to consider and check for. In other cases, the fluids from behind the eyes can be pushed forward, rather than the eyes pushing forward, so checking for pressure behind the eye can be just as important as looking for swollen tissues.

We’re SO glad you’re here! Funny how something like Graves’ can push us into doing for ourselves what we SHOULD (like giving the heave-ho to an unsupportive partner). So glad you did. We all know you’re better off for it.

[Ski]

in reply to: Desperately need advice #1072704

Agranulocytosis can also be referred to as "bone marrow suppression," so I think the two of you might be talking about the same thing. There was one doctor at a conference a few years ago who said that once he had seen this particular side effect manifested, it spooked him into completely rejecting long term use of ATDs. My understanding, though, is that if the symptoms are identified quickly, stopping the medication immediately reverses the effect. I believe that, in this particular case, the patient went on taking the medication for too long before being successfully diagnosed, and so it became life-threatening.

It’s nothing to play with, that’s true, but his opinion, and his feelings, and his fear, are not necessarily reasons for you to change your own opinion, your own feelings. It’s something to consider ~ ATDs are not completely harmless, and we should understand that going in. But I don’t like hearing that a doctor has refused any sort of treatment to a patient who is willing to accept the risk for themselves.

[Ski]

in reply to: Bad Thoughts #1073179

Good for you! A very empowering message. ” title=”Smile” />

[Ski]

in reply to: Some Random Questions about GD (can’t find answers anywhere) #1072602

Great answers, everyone! ” title=”Very Happy” />

First just a quick clarification on beta blockers ~ they actually do nothing to treat Graves’, they just make us feel more comfortable until our thyroid hormone levels drop, and they also protect the heart from irregular rhythms during that time. Once the hormone levels are back inside normal range (not necessarily our own "perfect" point), we can wean off the beta blockers. Weaning is important, since a quick, cold-turkey withdrawal can cause a recurrence of the symptoms we’ve been suppressing. Typically we don’t take a very high dose anyway, so weaning is a pretty short process (a week or two).

What’s left? Oh, question 2! Fluctuating symptoms are a complicated issue. While we are sick, the antibody levels rise and fall for rather mysterious reasons, and we can also respond to stress with worsening symptoms, since stress causes an adrenaline rush and a "pumped up" immune system (which, in our case, does us no favors). I do not believe that an instantaneous change in med levels is necessarily indicated when symptoms flare, but that’s really something you should discuss with your doctor as you proceed with ATD treatment. You will likely find that flare-ups are not as pronounced, once you have begun ATDs. Remember that improvements you make in other parts of your life (diet, relaxation, coping) will likely help as you pursue treatment. They won’t affect your thyroid hormone levels, but they may minimize flareups due to stress, and they will definitely help you to feel better, heal better, as you go through the process.

James has it completely right as to ATDs ~ as far as I know, MOST (or all) patients respond to ATDs. They do lower thyroid hormone levels. Not all will achieve remission, which is defined as a period of time with normal thyroid hormone levels while taking NO medication. Remission is usually attempted after at least 12 months on ATDs (more likely 18-24 months). Another thing you should know is that ATD treatment typically involves several dose changes ~ at first, the dose will be rather high, so that levels drop rapidly back into the normal range. After that, there’s a bit of a "dance" to find the right dose to keep normal levels maintained. Once you begin the process, remember that it’s a pretty steady improvement curve (there shouldn’t be wild fluctuations, in other words). You may go back & forth for a while, but vigilance with your blood levels should minimize your discomfort during the process. Ask the doctor for a standing order at the lab, so you can have levels drawn any time you feel unwell and evaluate those with the doctor. Do not self-prescribe or change your medication levels ~ the doctor has been through this before, so they’ll help you through. Monkeying with the doses yourself can create confusion and delay your ultimate relief. Remember, we are all "statistics" for the doctor to draw upon when they treat the next patient, so give the doctor a chance to figure out what’s going on, right along with you. Have a VERY frank discussion with the doctor up front, indicating that you need a team member, and you need them to be responsive, even if they’re busy (endocrinologists are, I think, the busiest doctors there are). Figure out the best method ~ phone, e-mail, text message ~ whatever works for both of you, so you can be in touch during the most complicated part of your treatment, and you get RAPID attention when necessary.

Finally, I’d like to point out, just for the record, that achieving normal thyroid hormone levels does not mean that you will, that moment, feel WELL. Hyperthyroidism affects literally every cell in the human body. Sometimes we compare the process to a hurricane coming through ~ after the storm passes, is everything normal because the wind and rain have stopped? Not by a long shot. The roof is still going to need repair. When you hit normal thyroid hormone levels, that’s when the rebuilding can START. Allow time after hitting normal levels for your body to return to normal, and don’t push yourself too hard. Look for small improvements as time goes by, and don’t feel as though you’ve failed in your treatment because "my levels are normal, why don’t I feel good?" Patience, grasshopper. ” title=”Cool” />

[Ski]

in reply to: Question for 12 month post RAI/ Surgery people #1072645

Sorry you are upset, genuine ruby,

I would have responded the same way ~ people who have recovered and feel well do not come to bulletin boards for support. I’m sure no one meant to be flippant. While our goal IS to provide information and assistance, we do not have access to all Graves’ patients ~ only those who look for us and visit. In addition to that, not all members check in daily. You may find more posts appearing as time passes.

All three treatment options can bring you to health.

[Ski]

in reply to: Should I stop this never-ending cycle with ATDs and do RAI? #1072979

I don’t know that there is empirical evidence to say that it’s more difficult to find normal levels of thyroid hormone after RAI. Perhaps in some cases, where RAI does not completely ablate the thyroid, it could be difficult because the thyroid still has some functioning tissue, which can react to antibody action, and also will continue to fail, so you’re more likely chasing a moving target. I had a relatively easy time finding normal after my ablative RAI. I have not gained weight, have not experienced lethargy, have not had continuing difficulty.

[Ski]

in reply to: Question for 12 month post RAI/ Surgery people #1072638

I am 7 years post-RAI, and I definitely feel better now than I did before treatment. BMI is kind of irrelevant in my case, because I have been overweight since I was 8 (30 years before Graves’). Something I constantly battle, but my BMI has not changed significantly from before treatment.

[Ski]

in reply to: Desperately need advice #1072695

Well, just to inject a quick note ~ RAI has proven successful for many thousands of patients. Some people have a really hard time managing their levels on ATDs, choose either RAI or surgery, and go on to live a healthy life (I am one of them).

Not to say that I don’t support long-term ATD use ~ many here have used it, and swear by it ~ but I don’t want you to think that RAI and surgery are "failures" as treatment. They are not. If anything, we suffer from doctors who think that any thyroid hormone level in the normal range is "normal," and we should just shut up because we are well. Finding OUR normal point is extremely important, when using hormone replacement following removal of the thyroid.

As for reactions to a particular thyroid hormone replacement, some patients are allergic to the fillers in the pill that bind it together, so changing brands helps. There is also a brand with NO fillers or dyes, for patients who have an extremely hard time finding something.

[Ski]

in reply to: Graves Opthalmopathy #1072649

Unfortunately, Graves’ Opthalmopathy (more commonly known lately as Thyroid Eye Disease, or TED) has its own course, and there’s really not a whole lot we can do to interrupt it. The one thing that may help as you go through this is to incorporate any kind of relaxation techniques that are helpful to you ~ I know it’s the hardest possible time to think of relaxing, because TED makes everyone anxious. There is so much wrapped up in our image of ourselves, in how we see, in how the world sees US, that it’s incredibly frustrating, and I understand that. Still, it’s an autoimmune disease (related to Graves’ thyroid disease, but not the same disease), and when we are stressed, it prompts responses from the immune system, which (in this particular case) "amps up" the autoantibodies that are attacking the tissues behind your eyes. Anything you can do to keep the stress level down will help to minimize the effects of the antibodies.

For the most part, TED takes 2-3 years to "finish." What happens is that we have a period of 12-18 months where the eyes fluctuate often. People who smoke experience the longer period, typically. After the period of frequent fluctuations (what we call the "hot phase"), there is a period of time where things just stay the same. After that, there is typically a short period of time where some improvements occur, and finally the patient enters the "cold phase" where no further changes occur.

During the hot phase, surgery is not a good idea, for several reasons. First, it can stimulate the antibodies and begin another phase of fluctuating. Secondly, you can overcorrect ~ the improvement phase will come later on, and that creates an entirely new set of issues. Finally, it can take away options you may have for correcting everything after the process has finished.

If your swelling is particularly severe, or the optic nerve is in danger of being compressed (once that happens, it’s irreversible and you lose sight), steroids and/or directed radiation (a beam of radiation to the orbit of the eye) are possible treatments to keep the damage at a minimum. Steroids can be used several ways ~ oral ingestion, "pulse" IVs, or injections to the tissues behind the eyes. Steroids and radiation are only effective during the hot phase. You can explore using steroids AND radiation, in order to minimize the use and risks of either. If these things are not successful in keeping the pressure off of your optic nerve, then surgery may be indicated, even during the hot phase, because it will save your sight, but that is only in the most rare of cases.

For the most part, though, patients do not have the very worst symptoms of TED, and they are able to use the "wait and see" method of treatment. I know it’d be nicer to be done with it quickly, but it’s just another lesson in patience for Graves’ patients.

There are several things you can do to be more comfortable. You can raise the head of your bed in order to keep fluids from settling around your eyes as you sleep. You can use "wraparound" sunglasses to minimize the discomfort of wind/sun exposure. Use preservative-free artificial tears often to keep the eyes moist. You may want to explore punctal plugs (these were talked about in a recent post), which help keep tears on the eyes and minimize dryness. Buy a pair of lightly tinted glasses to wear around the office ~ it helps keep down irritation from flourescent lights and forced air, and it also helps to hide your eyes from view. If your eyes do not close all the way while you sleep, you should use either night-time gel products or a mask (or both) because corneal damage is also irreversible and can threaten sight.

Once you’re confirmed to be in the "cold phase," you and your doctor can evaluate the state of your eyes and decide whether you want to pursue surgical correction. The thing that you’re correcting, at that point, is the scar tissue that remains. Most people are very happy with the results of surgery, if they need it. Some don’t need surgery after all ~ for some, the changes revert almost to normal.

It’s no fun, we’re sorry you’re going through this. But you’ll make it! Hot baths, yoga, whatever you LOVE, whatever nourishes your soul, that’s important for you to do.

[Ski]

in reply to: Thyroid Scan/Uptake – pregnancy #1072664

I have never heard of this ~ even RAI is not out of the question for people who are thinking of getting pregnant. I would call your endocrinologist and ask them to speak with the radiology/oncology department you visited. The uptake/scan is done with a non-damaging isotope of radioiodine, so there should be NO risk to you or a future pregnancy.

[Ski]

in reply to: Graves disease in Males #1073300

Hi Aravindh,

There should be no problem for you taking Gas-X or other meds for your digestion problems. I would suggest that you try not to take anything else at exactly the same time as you take your thyroid meds, unless you’ve spoken with a pharmacist or doctor to determine whether one could possibly affect the other. I think there are fewer possible interactions with ATDs than with replacement hormone, so it may not be an issue at all, but until you know for sure, just separate the two by an hour or more.

The gym is a trickier question, and one you should ask your doctor. Until your levels have tested normal at least once, I’d say hold off except for very light walks and stretching.

[Ski]

in reply to: Desperately need advice #1072688

I can’t stay long, but YOU ARE RIGHT. If your doctor drops you, FINE. Remember, you (or your insurance company) pay his salary. You can stop paying that salary if you disagree. Don’t be bullied.

[Ski]

in reply to: RAI Ablation #1072711

Hi April,

Well, the first and most important thing you should know is that RAI has no effect on fertility. It is usually recommended that a patient wait at least six months to try and get pregnant, which is an overly cautious rule, on purpose. People have actually become pregnant sooner than six months after RAI and delivered healthy babies.

Just as a quick overview of the reasons ~ RAI is taken up only by the thyroid, but depending on your uptake percentage, some of the RAI you ingest is excreted through your body’s liquid waste channels (urine mostly, a little bit in the sweat and saliva). While the urine is in your bladder, it is near your ovaries. The only eggs that are capable of being affected are those approaching maturity, so waiting for six cycles to pass removes all the eggs that could have been affected by the transient presence of RAI nearby. If you drink a lot of water and urinate often, you can also minimize that exposure.

Historical data shows that RAI patients have no more trouble getting pregnant than patients who have not had RAI, and the children of RAI patients are, oddly, a tiny weeny bit LESS likely to have certain diseases than other children.

There are many people here who have had beautiful, healthy children after RAI. I’m sure they’ll post to reassure you.

The other issue I should bring up is that, while it’s true that your chances of achieving a second remission are smaller than the odds of a first remission, maintenance on ATDs (Tapazole or PTU) can usually be achieved with a very small dose, if you’re interested in that. There are some issues with ATDs in pregnancy ~ PTU is the recommended medication for use in a pregnant woman, but even PTU is listed as a drug that passes through the placental barrier, so it’s not perfect either. The small doses required for maintenance are usually okay for pregnancy.

If you are debating between the two treatments (and let’s not forget surgery as an option!), you may want to consult with a pediatric endocrinologist to see what they think about each.

RAI is equivalent to the amount of radiation you’d get in a very long day in the sun ~ in addition to that, remember that thyroid cancer patients are routinely given RAI doses between 10 and 20 times what we are given to treat Graves’ Disease, and even that is considered a therapeutic dose, also not expected to affect fertility.

If you decide to go with RAI, I would suggest that you talk with your doctor about the pros and cons of an ablative dose. There are some doctors (less all the time) who think that it’s possible to give "just enough" RAI to leave your thyroid in place. The radiology doctor who gave me my first dose had that opinion, and even though I didn’t share that opinion, he gave me a low dose. I never went hypo, and I had at least two extra years of illness as a result, before I chose to have a second, ablative dose, which led me to health.

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