[Ski]

in reply to: What am I in for? #1074331

You’re not "wrong" for thinking this way, but your body suffers while hyperthyroid, and the effects can take a very long time to heal, so prompt treatment is critical. Right now you’d be wise to educate yourself ~ read some of the recommended books, for instance ~ so you can be a more effective advocate for yourself and you can more quickly begin whatever treatment you choose.

You are not doomed to a life of substandard quality. Please remember that the majority of people we see here are either new patients, or they are struggling with their treatment. For the most part, patients are treated and feel fine, go on with their lives and never look for support or assistance.

The most important thing is that you begin some form of treatment, so find out about your three options, pick one and then speak with either your regular doctor or endo to get started.

It’s worth it.

[Ski]

in reply to: Choosing Thyroidectomy on Purpose #1075742

Our body processes out excess thyroid hormone very slowly ~ so slowly that it can actually take up to six weeks for it to be completely gone. You are in the VERY early phases of your treatment at this point, but it is wise to be vigilant about your levels.

All of your symptoms will start to resolve once your levels drop. I’m a little surprised that you’re taking any replacement at this point, but it may well serve you to go more quickly from hyper to normal, so just be patient.

[Ski]

in reply to: What took me so long? #1074497

That’s interesting Russell, thank you! My former endo used to make a point of asking me to have my levels tested at the same time of day each time, under the same circumstances (meaning either not having eaten for a period of time OR right after eating), just so we could be sure we were comparing apples to apples. I had completely forgotten about that, since now I do it by habit.

I haven’t heard of any widespread issues with thyroidectomy patients having difficulties managing their levels, but again, everyone with Graves’ is a unique case, so it’s hard to predict.

[Ski]

in reply to: Antibodies after RAI? #1074370

More important to test the baby’s blood for antibodies soon after birth to make sure that the baby does not need to go through the "filtering" process. Your levels are not the determinant as to whether the baby is affected.

[Ski]

in reply to: Antibodies after RAI? #1074367

My understanding is that antibodies do not affect a growing fetus, they are not passed on. The thing that is passed on to your child is the genetic predisposition to autoimmune diseases in general.

[Ski]

in reply to: Surgery to Remove Thyroid, Can it Reverse Eye Bulge? #1074382

Hi lmatthews,

If your eyes have stopped bulging, then there should be no need for you to discuss treatment at this time. The only exception would be if the pressure behind your eyes persists ~ for some people, the pressure does not produce bulging eyes, but it produces dangerous pressure levels. Your ophthalmologist would be the one to confirm that, but typically if there is an issue, the patient can feel it.

For the most part, we follow the path Bobbi described ~ we have some symptoms, they increase & decrease randomly for a while (that’s the "hot" phase), then they stop fluctuating, then we experience some improvement, then all changes stop. After there have been no changes for at least six months, the doctor will typically proclaim that you are in the "cold phase," and you can evaluate your eyes and decide whether you want to pursue surgical correction. Typically the answer will be no, but those with severe eye changes may want to either correct bulging that did not resolve itself or reduce some pressure so that the eyes move more comfortably. This entire curve usually lasts between 1 year and 3 years (smokers are more likely to experience longer periods of disease).

When we are in the hot phase, surgery is not recommended unless the optic nerve is in danger of being compressed by the pressure. If the pressure is very severe, you can use steroids (in various forms ~ oral doses, intravenous high "pulsed" doses, or injections into the fluid behind the eyes), directed radiation (this is a radiation beam aimed at your eye socket), or a combination of the two. These are used to try and avoid surgery during the hot phase, since surgery can bring on further changes and negate the positive effect of surgery. Neither steroids nor radiation work well for patients in the cold phase, they are solely for patients in the hot phase.

I hope this helps!

[Ski]

in reply to: Surgery to Remove Thyroid, Can it Reverse Eye Bulge? #1074379

Conventional wisdom is that the eye disease is completely separate from the thyroid disease. It is very common for both to occur in close proximity to each other, but for some people the two are separated, sometimes by years. There are a few symptoms (lid retraction, for example) that can come from excess thyroid hormone, but the pressure behind the eyes is not due to that. The eye disease has its own unique antibodies that attack either the muscle tissue or the fat tissue behind the eyes (apparently people who are younger at onset have more fat tissue affected, while patients who were older at onset have more muscle tissue involved). At our most recent conference, they actually said that there may be evidence emerging that a hyPO condition is more likely to create an eye symptom flare-up, but that hasn’t been concluded quite yet.

There was one study that suggested RAI may temporarily aggravate eye symptoms, so you would want to discuss that with your ophthalmologist if you were considering RAI to treat your thyroid.

Most of our conference in October was devoted to Thyroid Eye Disease, so we got a lot of good information about the available treatments. For the most part, if you have just begun your symptoms, "wait and see" will be the treatment unless you experience severe pain, difficulty moving your eyes, double vision or compression of the optic nerve. If you DO have any of these symptoms, there are several treatments and practices you can use to help. Once you’ve gone into the "cold phase" you may see some improvement, then when you’re sure you’re stable, the surgical treatments can be explored. Please let us know if you need any of that information.

[Ski]

in reply to: What took me so long? #1074494

Hi russell,

This is a good topic of discussion for you & your endo to take some time with. You aren’t taking much tapazole, as you say, and you’ve pretty much dialed in to the normal range. Still, the anxiety and physical symptoms that you continue to experience are a consideration. I suppose I’m not saying anything new here ~ it’s not my decision, so I am hesitant to say "I would ______," whatever that is. I would probably do what I already did, just because I already did it, and it worked for me. And probably, so will everyone here.

Unfortunately, there’s no crystal ball and you can’t see your comparable futures based on whatever choice you make today.

I will say this. It is possible that antibody levels in your body are not truly well managed with tapazole ~ you are always in the normal range, but for your body to truly rest, it should be at ONE normal point that is steady and works for you. That may be easier to find without the complication of antibody action.

Naturally, your hesitation is that now you have choices, and if you make one of the other two choices, all your choices are gone. I understand that. Perhaps you should do a pro/con list (my sister swears by them!), so then you can see clearly, right in front of you, if your feelings are clearly falling on one side or the other.

Let us know how it’s going with you!

[Ski]

in reply to: I’m new to NGDF Board…with old thyroid problems #1074453

You are SO welcome. In truth, participating on this Board is one of MY favorite ways to reduce stress and feel as if I’m contributing. It warms my heart. ” title=”Very Happy” />

Since you’ve changed thyroid hormone replacement, you may have a period of adjustment. There IS no "equivalent dose" chart, because we each react differently to the fillers that make it into a pill, so the best you can do is start a dose, wait six weeks, get your bloodwork done, and adjust as necessary (six weeks between each dose change is recommended in order to allow your body to fully metabolize the new dose). In the interim, I usually have up/down feelings, but after the six weeks is up, things level out.

Just a quick note ~ if the dose your doctor wants you to be on is not available with the medication the pharmacy is using, there is still a way to get that dose. You can take pills one dose up and one dose down on alternating days. Since T4 is the "static" form of thyroid hormone (not the active, T3 form ~ we make the T4 into T3 before our body uses it), you don’t end up feeling up one day and down the next, your bloodstream actually averages the two doses so that your effective dose is in between the two you are taking. Does that make sense? If you are interested in pursuing that, ask your doctor for TWO prescriptions ~ one for each dose. Still, unfortunately, the doses are not equivalent across different forms of replacement, so probably you don’t want to pursue that right this minute. Give this dose a chance to work first, see how you feel after six weeks have gone by.

Now, NEXT time the pharmacy tries to tell you that they’re changing your brand, fight back. Actually, if you haven’t switched for long, you may want to fight back right now so that you can just use the higher dose of the replacement you were using before. This is a long process, and you do NOT have to suffer it. If your prescription coverage is lacking and it will mean you have to kick in a little bit to get the pills, so be it. They are typically very inexpensive. As a matter of fact, you MAY be better off just buying the pills yourself ~ that’s what happened to me initially. At first I was on a different form of insurance than I am now, and they would only let me have a prescription for 30 days at a time (even though we KNOW I’m going to need this forever), and they made me contribute a co-pay of $10 each time. My doctor took a look at the retail prices and let me know that 100 pills, rack rate, was only $22. So I could get more than a three-month supply for about the same price I was paying in two months, and I didn’t have the ridiculous restrictions of "what is covered and what is not" through my insurance plan. It’s worth checking out, if that becomes an issue for you.

And finally, yes YES YES, people have trouble explaining things to their spouses. I think we have a bulletin for spouses available ~ if your spouse is willing to read it, it may help. Some people have found posts from other people that speak to the issues we go through, printed them out and left them around the house. That may help as well. The most important thing for your spouse to know is that you are dealing with a lot, and you’re doing the best you can. It’s the old "you don’t look sick" kind of thing, they expect that unless they can see it, you must be just fine, and all this "drama" is of your own making. NOT SO. Whatever you can do to educate your spouse will be helpful.

Look around the Board for similar posts to yours ~ you might even be able to just search by "spouse" and find some things. Look in the old Board too, it’s a treasure trove. ” title=”Very Happy” />

[Ski]

in reply to: I’m new to NGDF Board…with old thyroid problems #1074451

Hi lmatthews,

I am SO glad you found us!

First, a TSH level that is HIGH actually means your thyroid hormone levels are low. TSH and T4 have an inverse relationship in the body. TSH is the Thyroid Stimulating Hormone, released by the pituitary gland in response to the level of thyroid hormone it senses in your bloodstream, so a high level means it is literally screaming at the thyroid to "send more hormone please!" The doctor’s response should be to adjust your thyroid hormone replacement dose to try and level you out. An increase in thyroid hormone replacement is appropriate when your TSH level is above the normal range.

Now, your question about shellfish is interesting, because by all popular logic, once your thyroid tissue is completely gone, you should have no way to feel hyper as a result of iodine-rich foods. Yet I still get a little hyper after I eat a lot of shrimp. Nothing else, just shrimp. And my thyroid is definitely gone. For all I know it’s a completely separate reaction, but I didn’t remember that happening to me before. I was never a big shrimp eater, so it’s hard to make a judgment. It literally CANNOT change your thyroid hormone levels after you have no thyroid left, because there’s nothing in your body that is producing hormone, so it cannot be stimulated to release excess hormone by anything, neither iodine nor antibodies.

The eye disease you have experienced is likely all that you WILL experience. The typical course is a 1-3 year cycle (comes on all at once, changes up/down for a while, then begins to improve, then stabilizes). Once that cycle is over, the biggest changes are in your past. I do still have episodes as you describe ~ when my life is particularly stressful, I feel pressure behind my eyes, and they do start to bulge out a little, but like you, when things return to normal, so do my eyes. My symptoms began sometime in 1998, so I’m definitely past the 3 year curve, as you likely are. MOST patients never have the worst of the eye disease, so keep that in mind. Just do what you can to manage your stress (we will never be rid of stress in our lives, it’s actually important to have some!), that’s really all you can do. For some people it’s yoga, for others it’s good workouts, for others it’s a funny movie or a hot bath. Whatever it is that helps you keep balanced, do that.

And keep asking questions! ” title=”Very Happy” /> That’s what we’re here for. ” title=”Wink” />

[Ski]

in reply to: I’m new #1074445

The short answer to this is YES, YES, a thousand times YES!

Eye pain is very common among Graves’ patients ~ for some, the eyes don’t bulge, but the pressure behind them increases, and that definitely causes pain. For other patients whose eyes are bulging, there is usually some kind of discomfort or pain.

Depression is EXTREMELY common in Graves’ patients ~ even more so in patients with Thyroid Eye Disease, because it is such a blow to experience changes in the way we look. It can be chemical, from the thyroid imbalance, AND emotional, from the effects of the eye disease as well as the realization that we have acquired a chronic disease. Some people benefit from anti-depressants, and we should not feel as if we are "weak" if we need them. It is important to keep our spirits up as best we can, because that ripples into so many other parts of our lives ~ it can even postpone healing, because a person who is feeling rotten may not take the best possible care of themselves.

The eye pain is best treated by an ophthalmologist who can evaluate the state of your eyes as well as prescribe things to assist in reducing the swelling or manage the pain.

Depression is complicated, so I would start with your endo. If they don’t feel comfortable figuring that out with you, go back to your primary care physician and see if they can prescribe something or refer you to another doctor. FORGIVE yourself for being depressed. That’s a big one. Pretty much everyone I’ve met through this foundation has "always been the one who does everything," so we can feel especially worthless when we cannot fulfill that role, and we also tend to blame ourselves for being in this condition. It’s NOT your fault, and you have avenues that can help.

If it’s solely chemical, due to thyroid imbalance, you won’t need the antidepressants for long, but they can get you over the hump and help you cope in the meantime.

[Ski]

in reply to: Allergic to PTU…Headed for RAI…What to Expect? #1074455

Hi Cath,

Well, your attitude is great! ” title=”Very Happy” /> I had RAI and didn’t feel markedly different in the first week ~ plus, it’s too early to have bloodwork done, so there should be no need for a checkup during that time. There is a phenomenon where the dying thyroid cells release the thyroid hormone they’ve been storing, and we can feel very hyper for a few days, but again, that typically occurs after a couple of weeks, not in the first week. Knowing it’s possible, you may want to discuss that with your doctor, because most of the time the treatment for this is just extra beta blockers for a few days. They could make sure you have that with you in case you need it, but it doesn’t usually happen within the first week anyway.

You should know that in the first couple of days you will be restricted even from being near your husband, and they recommend using separate bathrooms as well. I believe I was told six feet from anyone for the first couple of days. Just ask your endo or the radiologist for their list of restrictions so you are not surprised at the last minute. It is still possible for the two of you to vacation ~ you could have a hotel room with two beds, which would satisfy the six-foot rule, and I believe the restrictions for using the same bathroom are only if that’s possible (some houses do not have more than one bathroom, so there must be some way to manage this).

There are two parts to the RAI that require restrictions, by the way. At first, your body is taking up the RAI into your thyroid, but is also releasing the RAI that is NOT taken up into the thyroid. For instance, whatever percentage of uptake you see in your scan/uptake (you may or may not have gone through this yet, but it’s a tool for the doctors to calculate the correct dose), that’s the percentage of RAI dose that will be taken up into your thyroid. If you have an 80% uptake and take 10 millicuries of RAI, 8 millicuries will go to your thyroid and 2 millicuries will be excreted through the normal fluid waste channels ~ mostly in the urine, but also some in the saliva and sweat. That is finished after two days, and then the second part of the restriction comes into play, as there is still RAI in your thyroid. For that period of time (which goes on a little longer, but still allows you to be at home with your kids), the dose that is in your thyroid decreases by half every 8 days, I believe. Until it has lessened to almost nothing, you will need to just be aware that this exists, and I was told to consider time and distance. If I was going to be with someone for a long period of time, I should keep my distance. If someone were to be very close to me, it should only be for a short period of time.

In the first part of the restrictions, as the RAI is being excreted, the point is to keep anyone else from coming into contact with the fluids that may contain some of it. You need the RAI to treat your Graves’ Disease, but others don’t need it, and you don’t want them to ingest any, since it would cause damage ~ slight damage, true, but the point is to be completely protective of others.

In the second part of the restrictions, the amount of radiation is limited solely because our radiation exposures accumulate over time. It’s not that an excessive time of exposure will harm someone today, but the accumulation is something we just try to avoid, where we can. Again, we need it, it’s our treatment ~ we don’t need to share.

SO ~ just be careful those first couple of days, AND I wouldn’t recommend making plans where you need to take an airline flight to get there. The close quarters would not be good for those around you, and you will also likely set off the radiation detectors at the airport.

Make sure to get that list of restrictions and suggestions from the doctor ~ I almost didn’t get a copy, and would not have discovered until my dose was in front of me that they recommended I use paper plates & plastic tableware!! (I think that restriction may not be recommended any more, but imagine ~ unable to go near people, and yet I must go shopping in order to eat safely!!??)

I wish you luck with your treatment, and I hope you have a WONDERFUL, relaxing week with your husband! What a win-win. ” title=”Very Happy” />

[Ski]

in reply to: GD and stomach issues #1074463

If his thyroid hormone levels are off, the nausea may be from that (not everyone experiences the same symptoms, but it would appear that stomach problems are part of his GD experience). Are you getting copies of his lab results so you know where his levels are? Reducing the medication may or may not change his levels ~ the levels are the most important part. The antibodies can increase and decrease for reasons that are not well understood, so sometimes GD patients on ATDs can experience "flare ups" of symptoms when the antibodies increase. Keeping an eye on his thyroid hormone levels yourself will be helpful as you go through this with him.

[Ski]

in reply to: incurable but entirely treatable #1074517

Actually, it is believed that the antibodies for the thyroid are different from (but related to) the antibodies that attack the eyes, and also from the antibodies that attack the skin. As Bobbi said, they are a key to a specific lock. It’s not that there are one set of antibodies that can choose to attack where they like.

[Ski]

in reply to: What took me so long? #1074488

Typically patients complain that the endo pushes them into RAI, so I’m not sure your friend’s logic holds up, nrssully ~ still, as Nancy mentioned at our conference, surgeons tend to recommend surgery, and radiologists tend to recommend RAI. We have to be responsible for sifting the facts and figuring out what works for us.

If you were just diagnosed in July, believe it or not, you are extremely early on in your treatment. If the Tapazole is working for you (maintaining a normal thyroid hormone level) at this low dose, you may want to just stick with that for now. It’s a perfectly valid option.

A Graves’ Disease diagnosis means the endo will be treating you lifelong, whether you choose surgery, RAI or ATDs. Surgery can lead to a quicker resolution, but sometimes doesn’t. Finding and maintaining normal levels can take a while no matter what treatment you choose, and thyroid hormone needs change throughout our lives, for many reasons. We’ll still need our endo no matter what. And just one more comment ~ I have never met an endocrinologist who had to "fight" to keep patients coming. They are coming in droves, overwhelming every endocrinologist’s office I have ever been associated with. Job security is already in the bag. Autoimmune diseases are more common every day.

One thing that I wonder about ~ has your nodule been evaluated? Bobbi’s right about a cold nodule, but if you have a "hot" nodule, it could be causing all of your hyperthyroid symptoms, and RAI ablation would actually do the reverse of what you say ~ a "hot" nodule sucks up ALL the iodine and pumps out TONS of thyroid hormone, so RAI can destroy the nodule and leave the rest of the thyroid tissue alone, since when a nodule is responsible for the hyperthyroidism, typically the rest of the thyroid "goes to sleep" because the nodule makes the patient hyperthyroid, and the TSH feedback tells the thyroid to stop producing. Nodules are not typical in a Graves’ patient, though they are a possible cause of hyperthyroidism. You may want to clarify that point with your doctor.

[Author]

Posts