[Ski]

in reply to: Yet Another Request for Help with Numbers #1073438

There are so many variables to answering this question that really, the only one qualified to answer is your doctor, sorry.

[Ski]

in reply to: Iodine in Vitamins? #1073444

I’ve heard of patients being advised to avoid supplements with iodine, but it can be different from doctor to doctor. I can’t tell by your post exactly where you are in your thyroid treatment ~ did you have surgery to remove the thyroid, or is the reference to surgery just about your weight loss procedure?

If you no longer have a thyroid, ingesting iodine shouldn’t affect you like it would someone who still has a thyroid. The thyroid uses iodine to make thyroid hormone, so limiting the intake of iodine can limit the overproduction, but only if the thyroid is still working.

[Ski]

in reply to: Allergy Effects #1073448

I had not heard of that connection before, so I can’t speak to this specifically. Perhaps others here have?

I can imagine allergy symptoms in the eyes making TED symptoms worse, but it’s not so easy to offhand make a connection between allergies and thyroid symptoms. My first symptom was puffy eyes, which my doctor interpreted as allergic reaction and prescribed me Zyrtec, which worsened my symptoms LIKE CRAZY (soon the tremors were so bad that I couldn’t even recognize my own writing), so it would seem that you’d be better off avoiding the allergy symptoms than having to treat them with medications that made your thyroid symptoms worse, but all these are better questions asked of the doctors. ALL of them ~ your allergist, your GP, and your endo ~ may have information to contribute on this front.

[Ski]

in reply to: Books and other education material #1073514

Oops, sorry about that, you’re right! If you sign up for the newsletter, that’s a good start, but I can recommend at least one of the books that’s usually listed on the main site ~ it’s called Graves’ Disease: In Our Own Words, and it’s a compilation of posts from earlier years on this BB, bulletins on various topics that come up a lot here, and other independent sections put together by some of our medical advisers. It’s likely the most comprehensive book JUST on Graves’ and TED. The site listed several good basic books on thyroid disease in general, but I don’t recall the titles or authors. You can probably do a search in the old posts for "recommended reading" and some of those titles will pop up.

I’m not sure how the bulletins are being handled ~ there used to be a certain number available upon paying to become a member, then small fees for more, but I’m not sure how that information is being handled at this point. There’s a certain amount of updating and standardizing going on right now, so stay tuned. I believe Nancy Patterson has access to a great deal of the old material, so you could send her a private message and end up with what you’re looking for.

The new site will be fantastic, I’ve secretly peeked at one of the more recent versions. ” title=”Wink” /> Coming soon, I’m looking forward to it!

[Ski]

in reply to: Hereditary? #1073462

The thing that is hereditary is the likelihood of getting autoimmune diseases, not Graves’ specifically. If you have family members with diabetes, rheumatoid arthritis, Sjogren’s, or any other autoimmune disease, that’s the connection. If several family members happened to react with autoimmune thyroid diseases, that’s simply chance. The theory is that we have this proclivity for getting an autoimmune disease, then we have some (probably several) triggers that need to be pulled, and the autoimmune disease affects some part of your body that is weak. For instance, people with a previous history of chronic sinus infections are more likely to end up with the worst TED symptoms (TED being yet another autoimmune disease).

Still, the likelihood does NOT always translate into disease. That’s the thing they’re trying to sort out right now ~ what the triggers are, and where they can be interrupted.

[Ski]

in reply to: HOW BAD IS IT BASED ON TESTS? #1073598

You should only need beta blockers until your levels get into the normal range, which would be MUCH sooner than the 2 years required to see if you’re in remission.

I just posted about long term use of ATDs ~ not a preference in the U.S., it has been the preference in Europe and Japan. The numbers are beginning to equalize across the two regions (meaning there is more long-term ATD use now in the U.S., and higher numbers of RAI and surgery in Europe & Japan), but the fact is that long term use of ATDs is not generally, for every patient, a dangerous thing. Check the last post I responded to as well, I put in some more information there.

In addition to that, neither of you are looking at "long term" yet, you’re just aiming to reduce your thyroid hormone levels and manage them for a period of time. That’s the best possible vantage point to decide upon treatment, because you will know exactly how you feel on ATDs, you’ll have some idea of the reactions your body is having to them, and you can also see how easy your levels are to manage. On top of THAT, your levels will be normal, which will bring you back to yourself and give you the opportunity to evaluate everything with less emotion. The fact that your levels are 4x normal should not define your treatment (except I’ve heard that surgery can be dangerous while your levels are that high). Odd that the doctor sees ATDs as a good way to bring your levels down prior to RAI, but no longer than that. Hmm.

[Ski]

in reply to: New here – ?? on how long can I take PTU? #1073452

U.S. doctors have typically had a preference for using ATDs (either PTU and methimazole) to attempt remission, which means the patient takes them for 1-2 years and then stops, to see if remission has been attained. If no remission is attained, U.S. doctors usually recommend RAI.

In Europe and Japan, the preference has been to manage, long-term, with ATDs. So there is data for both possibilities.

The fact that U.S. doctors have a preference does not mean you must go along with it. This is YOUR body, and you do have the power of choice, barring any physical infirmity that would make you unable to choose one or another (as an extreme example, hemophiliacs cannot choose surgery).

It is always wise to ask your doctor for their opinion, and ask for some backup to that opinion. Some doctors prefer not to use ATDs because they’ve seen patients with one or another of the more serious possible side effects, so they would rather not expose another patient to the risk. Nice thought, but we are all different. Not everyone will end up with those side effects, and both (liver damage and lowered white blood cell count) can be reversed by discontinuing use of the drug quickly after determining what’s going on. One doctor who spoke with us said he had a couple of patients who disregarded the symptoms and ended up very ill from side effects, so for that reason the doctor hesitated even to prescribe ATDs in the first place. Again, these are things to consider, but it doesn’t mean you must change YOUR personal choice. With proper monitoring and knowledge, long-term management on ATDs is possible.

The only additional risk, long term, is that the drug is processed in the liver (unlike thyroid replacement hormone), and the liver gets, well, "full" as we get older, so checking liver function as you go along is important. Typically though, it’s low maintenance doses as you get further into the treatment cycle, so lower doses means less risk.

[Ski]

in reply to: Methimazole after RAI?? #1073528

If the dumping occurs for him, it shouldn’t make him more hypo at the other end, but it’s hard to say. We are all so completely different ~ you’re right though, the guess would be at least 4-6 weeks until you could start to even test him for being hypo. If it happens at that point, it’d be relatively early for it, but the process should be ongoing from the very start after RAI, so things should be easing daily. Remember, as levels drop, he will go through a period where he actually would measure at normal levels, and then the hypo symptoms would start. Keep a list handy of classic hypo symptoms, and when you can add up four or five that he’s feeling regularly, it’s probably a good idea to test. I ended up having two RAIs (which will NOT happen to him, I am confident), but after the first one, I was rushing to the lab constantly, absolutely sure I’d dropped into hypo, and it actually never happened until I had had the second RAI, so perception is one thing, but lab results are golden. As he goes through the process, after the six-week mark, you may want to keep a symptom diary (if you don’t have one already), and keep the lab results as one factor in the symptom diary. You may find it easier to hone in on HIS normal "point" if you have a full set of data to work with.

[Ski]

in reply to: Graves Disease Options #1073473

If you can’t take the ATDs, the only options you have left are RAI or surgery. Remember that no matter what you think of those two options, remaining hyperthyroid is far more dangerous. Before there were treatments available for GD, fully 50% of patients found it a fatal condition. The odds are FAR FAR better for both RAI and surgery. Surgery is a perfectly valid option if you are averse to RAI ~ this is a very personal, very emotional decision, and it’s better to choose the option you prefer than to have something forced upon you because "everyone else" thinks it’s a better idea. Just make sure you are fully informed about the process and the risks ahead of time, and if you do pursue the surgery, find a doctor who performs many of exactly these surgeries, with very low complication rates. It’s putting your best possible "spin" on the outcome.

RAI sounds scary, I know. Remember that thyroid cancer patients receive RAI in doses up to 10 or 20 TIMES what we receive for Graves’, and that is still considered a therapeutic dose that risks no future complications.

So, those ARE your two options at this point. It’s unfortunate that you were unable to take the ATDs at all, because now it puts you in the position of having to arrive at your final decision rather quickly, and proceed to treatment soon. Try to find all the information you can ~ you may want to consult a surgeon right away, just so you can make the connection and get the information you need.

[Ski]

in reply to: Had Thyroidectomy Feb 5th-still not well #1073522

If you were actively hyperthyroid before your surgery, you’re probably in the very earliest stages of healing, which is not surprising. Try to look for small improvements each day. Remember, it can take up to six weeks for excess thyroid hormone to be flushed out of our bloodstream, and then we can begin to evaluate thyroid hormone levels, begin to hone in on the replacement hormone dose, etc. etc. Treatment for Graves’, no matter which one you choose, will involve some very long steps and a certain period of time before true health returns. We need a LOT of patience to get through it, but take heart in knowing it is coming. Once you have begun, things should get ONLY better. Remember, your body’s been through a terrible assault. It is now coming back to some kind of rational rhythm, and then can BEGIN to put some energy toward healing itself.

[Ski]

in reply to: Treatments for Eyes #1073484

It’s true that typically the eye disease runs its course in 1-3 years (smokers typically endure the longest period of disease). It doesn’t exactly just "go away," because any severe damage may result in scar tissue, which can keep the eyes from returning completely to normal.

In the meantime, your tears are also typically less viscous, less thick, which can affect the comfort of your eyes, and can endanger the cornea. The first thing to do is ensure that you use artificial tears liberally, in every circumstance when your eyes are exposed to irritants (sun, wind, flourescent lighting, computer screens). Every 15 minutes is NOT too often to ensure your comfort. Use artificial tears without preservatives, NOT "get-the-red-out" drops. When you’re using the drops that often, you can’t have preservatives, they are irritants when used that much.

The plugs do help some people, because they keep the tears you DO have from draining out of the eyes so rapidly, which can keep the moisture level more constant and increase your comfort. You can try dissolving plugs at first, that way if you don’t like them, they eventually dissolve and you don’t have to deal with them again. If you LOVE them, you can go on to insert permanent plugs, or cauterize the ducts to close them permanently.

The issue here really has more to do with keeping your cornea healthy during the process of disease. Corneal damage cannot be corrected, and can result in permanent vision loss, so you need to protect yourself at all times. Chronic dryness can result in corneal scratches, ulcers and cuts, so moisture is your best defense.

[Ski]

in reply to: Dexamethasone withdrawal #1073507

Dexamethasone is a steroid, and I do think some of these things might be a result of coming off the drug. I’m not sure how you can prove it, except for diminishing symptoms as you get further from the last dose you took.

Some of the symptoms you describe are classic hyperthyroid symptoms. I realize you say that your TSH levels have been normal, but has anyone checked your T4? TSH actually changes rather slowly, and T4 may be a better measure if things are currently changing with your thyroid hormone levels. I’m glad you’re seeing another doctor soon. Write down ALL the questions you have, and get this clearly diagnosed. That rapid heart rate is scary, I remember.

[Ski]

in reply to: Books and other education material #1073512

We have some recommended books on our main website, take a look. We also have an extensive library of bulletins that address many of the basics about both GD and TED. In addition to that, you may want to consider running a search here on the BB for various terms that relate to your experience with the eye disease.

Finally, make plans to come to the conference this October on the east coast! We have dates scheduled (beginning October 16th, continuing through noontime on October 18th), but have not set the location. If you can make plans to attend, I know you’ll be glad you did. It is always the most current information, and as a bonus you get to meet THE most fabulous group of people you’ve ever met, bar none.

[Ski]

in reply to: Post-RAI Gastroparesis, Anyone? #1073545

It is slightly more likely for us to end up with a second autoimmune disease, once we’ve already got one, so perhaps that’s the connection with those two.

[Ski]

in reply to: Orbital Decompression Surgery #1074416

Hi Shelby,

That wasn’t a downer post at all, we understand!! It sounds as if you are going into this completely informed, so that’s wonderful. It’s true, you might not ADORE the new look immediately, but something tells me there’s going to be a lot more relief than sadness. I’m sure you know that further steps can be taken afterward, to "tweak" the look back into what you remember. Does your doctor have a good "before" picture of you? That really can help. You’ll get there, and you’re right, the relief from the constant pressure [i:3073o8w2]will[/i:3073o8w2] be worth it. Let us know how it goes!

[Author]

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