[Ski]

in reply to: Problems with keeping food inside me #1071612

Very common, when you’re hyper. DEFINITELY speak with your doctor. You need nutrition, and you can be more comfortable.

[Ski]

in reply to: What’s next #1071801

Take it easy right now ~ I hope you’ve heard from the endocrinologist by now? If not, this is one of those times I’d make myself a pest. If the office staff tries to tell you that "there’s no need to talk with the doctor," remind them that within that statement, they just started practicing medicine without a license.

It sounds like the "dumping" I was talking about, and right on time (two-week mark), but it’s best to check with the doctor. If you’ve been weaning off the beta blockers too fast, you can also suffer a "rubber band" effect where the symptoms you’ve been holding off come back with a vengeance. In either case, best to check with the medical professionals.

[Ski]

in reply to: hyperthyroid linked to ibs #1071646

You are welcome! We’re glad you found us.

You cannot adjust your methimazole dose by yourself, it MUST be done using blood tests, and you MUST wait a while between blood tests to determine exactly what’s going on. We feel all kinds of weird with Graves’ Disease, and our feelings are completely unreliable when it comes to finding out what our thyroid hormone levels are, unfortunately.

Talk with your doctor about typical time periods between testing, as well as symptoms you would want to look for that may signal severe hypothyroidism or side effects of methimazole, and discuss the ways you can reach the doctor in the event that you think any of these things are happening to you. It may be something you just have to wait through, or it may be something that signals a change of medication or at least a blood test, but it’s always best to consult with the doctor (or one of his designated staff members) when you wonder.

Also ~ fatigue can go with both hypo and hyper (one of the many reasons we can’t judge for ourselves where we stand). With hypo it’s because our body just has very little energy in it, literally. With hyper it’s because our body is worn out ~ being hyperthyroid is like being a car with a brick on the gas pedal, it’s EXTREMELY tiring.

[Ski]

in reply to: Will my eyes return to normal on their own? #1071618

Hi kyagos,

You say you were diagnosed fairly recently, which would suggest that you haven’t had symptoms very long. TED (the "newest" name for Graves’ Ophthalmopathy) has several distinct phases. The first phase is called the "hot phase," and during this period of time, your eyes may change rapidly. They can bulge and go back often, your double vision can change. After the hot phase, there is typically a period of stability, and following that, a period of improvement. After ALL that is done, they say you’re in the "cold phase." Cold phase is diagnosed in retrospect, after the doctor has seen no changes at all for at least six months. The whole process can take anywhere from 1-3 years. Smokers typically have the longer durations.

I mention this because until the cold phase finally happens, surgery can be premature, and you MAY find that the eyes go back to a nearly normal state. If you do surgery to change things, then the eye goes back, you will again be at a disadvantage.

I completely understand the frustration of your type of double vision ~ our most recent conference was focused largely on TED and the possible treatments, and just one slide showing us what "up/down" double vision looks like was enough to make us all gasp. It is FAR worse than side by side double vision. So I understand the desire to take care of it, and SOON. I’m not sure if you can use prisms to correct this type of double vision (I can check my notes to be sure), but if you can, that’d be a way to avoid surgery right now, so you could wait and see if your vision corrects by itself.

If you are going to have surgery, we are told that it is best to do the surgeries in the order you mention ~ decompression, then strabismus, then lids. Doing them out of order can sometimes result in difficulties down the road, but if you and your doctor feel that decompression will never be necessary for you, of course you could skip that step.

There is no reliable treatment that shortens the phases of TED. Symptoms could potentially resolve in one year without ANY intervention. Keep in mind that this is an autoimmune condition, so keeping your stress level down can keep the antibodies from attacking so much. Stress causes an adrenaline rush and stimulates the immune system, and since we have antibodies that attack us in a bad way, keeping stress at bay will help keep those symptoms to a minimum.

A second opinion might be a good idea for you. Look for an ophthalmologist, and if possible, look for one that is affiliated with the American Society of Ophthalmic Plastic and Reconstructive Surgery ~ these are ophthalmologists who have had additional training in the precise surgical procedures you’re contemplating.

[Ski]

in reply to: enlarged lymph nodes during remission? #1071628

During remission it is possible to have periods of time when symptoms recur a bit ~ blood tests are the "gold standard" at that point, so if your levels are good (I’ll knock wood for you too), then it’s possible you’re just experiencing a little "spike" due to other things, and it is not enough to get you out of remission. I had not heard that lymph node swelling was a GD symptom, though. The thyroid itself can swell (a goiter) when our levels are imbalanced on either side, hypo or hyper, but lymph nodes would probably be something separate.

[Ski]

in reply to: First Timer Here #1071682

To be fair, allergic reactions to ATDs can be very dangerous, and can lead to anaphylactic shock if the med is continued ~ Benadryl would not be strong enough to handle that. This may be what the doctor was afraid of, since the reaction was rather severe. Give the doctor a chance to explain before condemning.

[Ski]

in reply to: Graves and Cannabis #1071634

No facts on this ~ we had an eye doctor at October’s conference who mis-interpreted a question someone was asking and he said there are no studies to say one way or the other about cannabis and its effect on TED.

As far as cigarette smoke, secondhand smoke could definitely be an irritant (well, either kind of smoke could obviously be an irritant), but people who smoke cigarettes have a higher likelihood of having TED last longer, and of their symptoms being worse, if they get it. That would not be true for someone who was only exposed to secondhand smoke.

[Ski]

in reply to: Recently Diagnosed #1071638

Hi Simon,

Let me echo the hearty welcome you’ve received so far! ” title=”Very Happy” />

The most common attributes of TED are pressure behind the eye and pain upon moving the eye ~ those symptoms would be very likely for someone who is starting to show TED. Since all you’re dealing with is a slight irritation, it’s possible that this is not TED. Only a tiny percentage of patients end up with the very worst symptoms of TED anyway, so keep that in mind as you go through the process.

One thing that happens with us is that our tears get less viscous, less able to provide essential moisture to our eyes. For some people it’s a slight difference, for some it’s more pronounced. This effect continues even past successful treatment of the thyroid. The best and easiest fix for it is to liberally use artificial tears (NOT get-the-red-out drops). Use the kind in single-use tubes without preservatives ~ sometimes we need to use them quite often (when working on the computer, or standing in a breeze), and the preservatives can be an irritant when we do. Try them and see if they provide some relief. You may not need much, but the drops you use today will help you feel better tomorrow, so if they work for you, go ahead and plan to use them rather regularly. For some people, a few times a day is fine. For others, they keep a tube at their side at all times. The bottom line is that chronically dry eyes can cause other problems ~ corneal abrasions or ulcers ~ and those other problems can lead to loss of sight, so a little moisture can save you a lot of frustration.

It’s a good idea to find an ophthalmologist (these are the doctors that treat TED) ~ first, you can get confirmation that you are (or are not) dealing with TED itself, and second, then your doctor will have a baseline of you "before," in case there’s an "after." NOT LIKELY, so please don’t spend a lot of time worrying about it. I know, much easier said than done. ” title=”Wink” />

[Ski]

in reply to: hyperthyroid linked to ibs #1071644

The short answer is yes, digestive difficulties can start with a thyroid imbalance. It doesn’t mean that all of your digestive troubles are due to Graves’, but test results that show you are hyperthyroid are clear evidence, and you must address that imbalance no matter what else may be going on.

A large majority of hyperthyroid patients are hyperthyroid due to Graves’ Disease. The other major cause of hyperthyroidism is a virus causing thyroiditis, in which case your thyroid hormone levels would resolve on their own in about six weeks.

A positive test for Graves’ antibodies or an iodine uptake/scan can confirm the diagnosis of Graves’, though a negative antibody test may not be conclusive (in other words, the antibodies rise and fall while we have Graves’, and if we test during a period when the antibodies are low, it would not mean that we do not have Graves’). Talk with your doctor about their findings so far, and whether they feel it’s possible you do NOT have Graves’. Keep on asking questions if you do not feel satisfied with the answers you have received ~ it’s important to understand.

[Ski]

in reply to: 25 mili on Wed…excited and scared all at the same time #1071648

Good luck! As I recall, those first couple of days were really boring. ” title=”Very Happy” /> Nothing dramatic should happen to you physically, so rent yourself some movies, get some good tunes to listen to, plan to sit around playing on the computer ~ it’s HARD to keep yourself entertained when you feel like such a shut-in!!

Each doctor’s office is different with their precautions, but when I did my RAI, I was told to eat from disposable plates and use plastic utensils. If your doctor has recommended this particular precaution, remember to get disposable BOWLS if you like soup & such. ” title=”Very Happy” /> I almost forgot, it would have been a tragic circumstance! Also, my doctor gave me a wonderful piece of advice. Since even touching things can mean you need to wash them off afterward, he recommended that I get gardening gloves, the kind with the rubber knobby-grabber things on the fingers, and use them so I didn’t have to rinse every single thing I laid a finger on. I had a fresh pair for each of the first three days, and I just threw them away afterward. You don’t excrete much of the RAI in the sweat on your fingers, but it helps to keep every little bit of worry away.

Let us know if other questions come up!

[Ski]

in reply to: First Timer Here #1071679

On finding a new doctor in your area: Check the main GDF website for a link to the American Thyroid Association ~ they have a search engine where you can look in your immediate vicinity. They don’t technically "recommend" doctors (and neither can we, publicly, though folks can send you private messages with their own input if you let us know where you are), but you can at least look up someone who specializes in thyroid conditions. Many endos have diabetes as their main practice area, so thyroid is secondary to them. I would recommend calling the offices of the doctors who pop up on the list ~ talk with the people who answer the phone and ask them about the doctor’s general demeanor, attitude toward keeping appointments in a timely fashion (but don’t ignore those who say the doctor will sit with you for as long as you have questions ~ it may make them later for an appointment, but well worth the wait), and then ask to speak with one of the senior nurses in the area so you can determine the doctor’s willingness to work WITH a patient, rather than just telling the patient what to do.

[Ski]

in reply to: Newly Diagnosed #1071656

Hi Heather,

We understand, believe me! We aren’t all in exactly your situation, but this definitely puts a crimp in the things we must do to get through a day. To be Pollyanna, I would say that as soon as you have the correct diagnosis, you start feeling a little better, and it improves from there. To be realistic, I would say that you will begin seeing some improvement as your thyroid hormone levels drop (however you achieve that), but you need to know that you will not get back to what you remember as "normal" quickly. It’s hard to hear, it’s harder to live, but you WILL get there. We are all evidence of that. In the meantime, while you begin and proceed with treatment, you MUST get yourself some help. We suffer because we don’t look sick, but we feel horrible, and so we even push ourselves to do more than we are capable of doing because we don’t see a sick person in the mirror. (Never mind the tremors, heat intolerance, and the mood swings ” title=”Very Happy” />)

Pretty much every person I’ve met through this Board was a "super-person" ~ always pitching in, doing everything, unwilling to pass along tasks because WE do it best. I’m not making any judgments, because I was that way too. It’s a habit you definitely need to break, somehow. You’ll recover better for it.

Learn all you can, hang out here, read our recommended books (Graves’ Disease: In Our Own Words is drawn from posts on this very bulletin board in its earlier days, as well as comprehensive information on every angle of GD imaginable), and ask all the questions that come up for you. We’re here for you!

[Ski]

in reply to: Low TSH Levels #1071667

Hi Lisa,

Welcome! I know you didn’t particularly want to join the club, but we’re glad you found us anyway. ” title=”Very Happy” />

Very low TSH levels are pretty typical with a Graves’ diagnosis ~ just as a quick overview, when we have Graves’ Disease, our bodies have produced antibodies against our thyroid gland (why? no one knows for certain…). The usual mechanism for regulating thyroid hormone in our body is that our pituitary gland measures the thyroid hormone in our bloodstream, and then sends out a corresponding level of Thyroid Stimulating Hormone (TSH) to tell the thyroid how much thyroid hormone to release. As a result, TSH and thyroid hormone itself (T4) have an inverse relationship. When there isn’t enough T4 in the bloodstream, TSH will be high. When there’s too much T4 in the bloodstream, TSH will be low. The Graves’ antibodies actually mimic the action of TSH, so they attack and trick the thyroid into overproducing thyroid hormone, which makes us hyperthyroid. The pituitary will correctly read that there is too much T4 in the bloodstream, and will send out progressively less and less TSH, telling the thyroid not to release any more T4. The thyroid is under the impression that the antibodies are TSH, so it keeps on pumping out hormone and doesn’t notice the low TSH coming directly from the pituitary. So the TSH levels will drop further and further as the hyperthyroidism continues, but it doesn’t necessarily mean you are "sicker" than someone with a slightly more normal TSH level. It may mean that you’ve been hyperthyroid longer, but that’s about it. The T4 level is a better indicator of just how hyperthyroid you are right this minute.

Tapazole will help your thyroid start acting normally again ~ I’m not sure of the precise chemical process (Tapazole and PTU work slightly differently), but the result is that your thyroid hormone levels should start to correct. At first it may take a while before you really feel a lot better (the excess can take up to six weeks just to get out of your bloodstream), but after that period has passed, you should notice a marked improvement. The process for finding the perfect maintenance dose to keep you at normal levels can take a little while, and you may find that you go a little hypo, change the dose, go a little hyper ~ but overall you are finding THE spot for you, and you will be feeling better each step along the way.

In the meantime, remember please that your body has been going through a true assault. Thyroid hormone is the "fuel" for every single cell in the body, so having too much can literally affect you everywhere. In addition to that, until your levels are normal AND stable, your body won’t have a chance to truly heal. All of this takes time. You will get to health, I promise ~ diagnosis is more than half the battle, with Graves’ ~ but make sure you understand you will need PATIENCE to get there.

You shouldn’t have to wait a year to go back to exercise, but make sure you’re in touch with your doctor about the best time to start. You may want to see a physical therapist when exercise is okayed. You’ll find that your body has gone through some changes and it may need some real TLC before you can get back to the exercise level you are used to.

Finally, there are many typical things that happen to us along the way, and emotional upset is definitely one of them. Try to keep yourself calm, if you can. Knowing that you may have trouble with that, speak with your family members BEFORE you have a meltdown and let them know you are fragile right now. You don’t look sick, but you are. You need support and understanding from everyone around you right now. Most importantly, from yourself. Take a good look at your calendar and make sure you are not wasting valuable energy on things that do not reward you with some kind of satisfaction or other payout. It seems that we have all been the people who "do everything" and are "always there," and that’s admirable. Now is the time for other people to take on that role, and for you to have some downtime while you heal.

Stick around, read the board, ask all of your questions, we’ll be here for you!

[Ski]

in reply to: First Timer Here #1071674

Graves’ is so complicated, I wish doctors took more time to explain things to their patients….. Bottom line is that we do not have a way to remove the antibodies from our bloodstream that are tricking our thyroid into producing too much thyroid hormone, and since hyperthyroidism left uncontrolled can be very dangerous, our options are limited once we have finally gotten the right diagnosis. Without being able to use the ATD meds (methimazole or PTU), the only other options are RAI or surgery to remove the thyroid completely, because there has not been any success demonstrated in lowering thyroid hormone levels by any other method than ATDs, RAI or surgery.

It is relevant to find out which symptoms you had using ATDs, because sometimes those effects can be alleviated just by taking a lower dose of the ATD. Others are life threatening and cannot be "worked around." Speak frankly with your doctor about the details, do not allow the doctor to wave you off with some glib remark. Also, if you don’t feel that your doctor is giving you complete information, or proper consideration, it is definitely worth your while to go looking for a doctor who will. This is going to be a lifelong issue ~ not that it will always be a problem, necessarily, but you’re going to need a team member to help you through this, and you’ll have lifelong contact with that doctor, so it’s worth it to find the right one for you.

At this point, if you are truly precluded from using the meds, you do need to make a decision rather quickly, which is tough. Some people have a visceral reaction to RAI itself, but it sounds as if your hesitation has more to do with removing the thyroid completely, so surgery is just as distasteful when that’s your issue. I always recommend learning as much as you can about Graves’, about what it’s doing to your body and how.

You are correct when you say that hypothyroidism is not a good condition either ~ the difference is that when you go hypo because you no longer have a thyroid, you take replacement thyroid hormone to give your body the T4 the thyroid would have produced. You don’t stay hypo. When we are hyperthyroid from Graves’, our levels can climb and fall (mostly climb), and without ATD meds, there’s no reliable way to find and hold a stable, normal point in the thyroid hormone normal range. When you’ve had RAI or surgery, you know that you are going to be hypo, so there is usually not much time between going hypo and beginning to take thyroid hormone, which minimizes the time you spend being hypothyroid, thus limits the risk of being hypothyroid.

[Ski]

in reply to: TED Upper Lid retraction surgery / lower swelling removal #1071685

Dianne is the best one to answer this question for you, but right now she’s in LA having some eye exams and consultations for a future lid surgery for herself, so she’s not likely to be on the board regularly. Everything comes down to the likelihood that your condition could resolve on its own, because if it can, then the surgery you have now could leave you in a bad position later and necessitate surgery to remove the tissue that was added. There’s never a downside to seeking a second opinion, which may give you some perspective at least.

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