[Ski]

in reply to: eye problem and headache #1075525

Good point! We actually elevate the head of our bed, so my head is elevated even if I fall off the mountain of pillows. It really does help ~ it uses gravity to keep fluids from collecting overnight.

[Ski]

in reply to: Newly Diagnosed #1070749

Oh my! Yes, sadly, this lack of information is very common ~ especially under emergency circumstances. I’m so sorry you went through this! We call it Thyroid Storm (same as thyroid crisis, actually I like crisis better, personally), and it is a result of unmanaged hyperthyroidism. Some people go into crisis earlier than others, which is probably why the doctor thought you would be okay until June 9th.

Let me just cover some VERY simple ground for you.

Graves’ Disease is an autoimmune disease (well, to be fair, we’re starting to understand it’s more of a syndrome than one disease, but I’ll get to that later), in which antibodies are formed in the body against the thyroid. These antibodies attack the thyroid, "pretending" to be thyroid stimulating hormone, which is usually released by the pituitary gland as a "modulator" of the thyroid. The thyroid, under the impression it’s being told to produce and release massive amounts of thyroid hormone, does just that, and we end up hyperthyroid. Hyperthyroidism comes with all kinds of trouble ~ heat intolerance, tremors, weakness in the large muscle groups, forgetfulness, anxiety and wild emotional swings, just as an example. While we are hyperthyroid, we lose muscle mass, bone mass, and any weak areas of the body are at extra risk. Thyroid hormone is kind of like the gasoline our body uses within each cell, and having too much is a little bit like leaving your car in park with a brick on the gas pedal. You feel anxious and revved up, and exhausted, all at the same time.

Typically the first line of defense is what we call ATDs (anti-thyroid drugs). The U.S. brands are Tapazole and PTU (long long name I will not reproduce here, shortened to PTU), which operate a little differently chemically, but result in the same thing ~ the keep the antibodies from forcing the thyroid to overproduce. I believe the UK version of Tapazole is Carbimazole (the generic here is methimazole). Not sure I’ve heard of a comparable PTU drug in the UK. These drugs work for most people to lower their thyroid hormone. The goal is usually to attempt a period of remission, in which the patient can return to normal, stable thyroid hormone levels without meds. Typically you must remain on the medication for up to 2 years before you can stop taking it and see if you’ve attained remission. In the beginning, the dose is usually very high, and it is dropped as your levels drop and stabilize. Remission numbers are around 40% for the first try, but success with the med bringing your levels down has a much higher success rate.

The meds can bring with them some serious side effects, but the effects can usually be reversed by discontinuing the med. There is a chance of liver damage, but it usually shows up rather quickly if you are susceptible, so usually the first few blood draws you have will include tests for liver function. In addition, there is a possibility of lowering your white blood cell count to dangerous levels. For that reason, the doctor should tell you to call immediately if you experience a sore throat and high fever. They test white blood cell count, and take you off the med if those levels are low enough. Not a lot of patients experience these side effects, but it’s best that you know about them.

Since you’ve gone through a thyroid storm, you are DEFINITELY not a person who will be feeling "all better" very quickly. It’s not a hopeful thing to say, but it’s a fact that you should be aware of as you go through this. It’s important that you realize your body has been through a terrible assault, and you will need much tender loving care to come out the other side of all of this. When your levels get into the normal range, and have remained there a while, THAT is when your body can safely begin to heal from the onslaught. Usually, that’s when we’re looking around and saying what, I’m normal, been that way for weeks, still feeling rotten. It’ll be that way for some time. Look for SMALL improvements, and rejoice in them. For now, keep your activities to a level you can manage. It is important that, no matter what, you keep things within limits.

I must dash now, but please stick around, and let us know how you’re doing!!

[Ski]

in reply to: RAI or NO…What is Your Opinion!!…HELP! #1070815

Remember too ~ if you have difficulty finding stable, normal levels with meds, thyroid surgery is another option for you. It’s perfectly valid, I know many happy thyroidectomy patients. While you continue on Tapazole, I would say that it’s still a good idea to continue your research, even after you’ve begun on the med path. It’s possible you may never have to make another choice, but it’s always good to have the information behind you.

Also ~ there are many sites that will pass along false information about RAI. I’m not sure why this particular treatment has drawn so very much bad press, but make sure you are getting information that has been proven successfully in peer-reviewed scientific studies. Thyroid cancer patients receive RAI doses up to 20 times what we receive, and even then it is not considered a significant risk in terms of the radiation exposure. It’s been used as a treatment for more than 60 years, without any significant increases in other conditions.

RAI has been shown, in one study, to potentially aggravate eye symptoms, so that’s something to consider carefully. Once again ~ thyroidectomy would be the way to get the same result as RAI, without that potential effect, just in case destruction is what you’d like to pursue at any point.

Check the ATA site (link on the main page) for an endo near you ~ and remember, sometimes there are internal med doctors who know just as much about thyroid disorders. Once you’ve found potential doctors, give the offices a call and "feel them out" before spending your time to go down there and visit. The office staff and nursing staff can give you a LOT of good information before you decide whether or not to see the doctor.

[Ski]

in reply to: Tremors after RAI #1070771

It probably is too early, at 3 or 4 weeks, to see much difference, though you may start to notice small improvements. I was on a low dose of beta blocker to fight the tremors, so I really can’t say how long it was before mine went away.

Remember, this is a long road you’ve started on ~ even when your levels reach the normal range, they’ll be headed to the hypo range (most RAI doses intend destruction), so the point at which your levels will be "settled" is rather far ahead of you. Once you’ve hit the normal range, you’ll notice less and less of the hyper symptoms. Then you need to start watching for hypo symptoms so that you get started on replacement hormone as soon as possible. It takes a while for the replacement hormone to build up in your system enough to relieve hypo symptoms, and your levels may be dropping even further all the time, so the sooner you start taking the replacement, the less time you’ll end up being hypo and the sooner you’ll feel well.

We’re here for you! Remember too ~ from now on, you’re closer to normal every minute, and you’re being carefully monitored. It won’t get out of control like it was, not ever again.

[Ski]

in reply to: Methimazole and illness #1070780

Sore throat and fever can be an indication of a very severe side effect of Methimazole, so you should call your doctor. They may want to test your white blood cell count. It’s possible that it’s just a regular sore throat that comes with a cold, but if not, you and your doctor should know ASAP.

[Ski]

in reply to: Who Has Had RAI Once With Great Long Lasting Results #1070793

I would’ve had it just once, had the dosing doctor listened to me. Had a second dose that was large enough to be ablative, and I feel great. That was eight years ago.

[Ski]

in reply to: Newly Diagnosed W/Graves & Endo. Visit #1070891

to bodidiang: Just echoing all your other advice ~ RUN from that doctor as quickly as possible, and find one that knows how to help you. Yours is a horrifying story.

[Ski]

in reply to: Newly Diagnosed W/Graves & Endo. Visit #1070890

for jojoransom: Your treatment IS your choice ~ you need to look carefully at your options, the way you feel, and your insurance coverage, and figure out what you think is best overall.

It’s possible to limit office visits with an open lab order ~ you can get your blood tested anytime, then check in with your doctor by e-mail or phone after the results come in, to adjust med levels.

Just as a quick aside ~ it is NOT a given that you will gain a lot of weight after RAI. The weight issue is extremely complicated, and with the proper attention to detail, you can keep from gaining a lot.

In addition to that, please be careful exercising while you’re hyperthyroid. You can really do harm, and you can make it more difficult to keep weight off afterward, because you can lose muscle mass that you will need to help you get back to "normal" when things stabilize.

[Ski]

in reply to: RAI or NO…What is Your Opinion!!…HELP! #1070813

This is the single hardest decision we face, I believe ~ which treatment is right for us? We would presume it’s always better to keep our organs intact, but when we have trouble making it "behave," well, then we start to consider other options.

Let me just say that I know many, many Graves’ patients. I know patients who have chosen all of the three options (not all of them for themselves, of course! ” title=”Very Happy” />), and I know people from each camp who are happy, and people from each camp who have had issues. It is literally impossible for someone else to make the decision for you.

All the treatments work. All of them have their own pros and cons. The meds can cause liver failure. The RAI comes with radiation exposure. The surgery can result in parathyroid damage, vocal cord paralysis or destruction. The meds do not cause liver failure very often. The RAI has extremely limited radiation exposure. The surgery, in the hands of an experienced surgeon, is usually very safe.

I completely understand your yo-yo feelings here ~ YES, NO, MAYBE ~ OH, just make me well!!! ” title=”Very Happy” />

The most important thing is that you feel comfortable with your decision, so just do as you are doing, learn all you can about all the treatments, and balance that with the way you feel.

My choice was RAI. I ended up needing two treatments, because the dosing doctor did NOT talk with my endo ahead of time, and tried to "low-dose" me, which has since been pretty much discredited as a valid choice. Had he spoken with my endo (or me, for that matter) prior to choosing the dose, it would have been a one-time thing, because we would have told him that we were aiming for complete ablation. Still, I am now feeling good, have my energy back, and sometimes I even forget I have Graves’. Wow, right? ” title=”Very Happy” />

You can get to this point by any of the three means of treatment. I understand we all have some visceral responses to one or another (for me it was the meds), and that should definitely be taken into consideration! If we don’t like it on some level, there ARE other choices we can make.

[Ski]

in reply to: radioactive iodine treatment #1070976

It’s pretty common to have pain with a large goiter, but check with the doctor anyway. I think that unless she cannot swallow, they probably won’t be too concerned, but it’s always nice to have that reassurance that everything’s okay. They may suggest ibuprofen or some other anti-inflammatory to help her out.

[Ski]

in reply to: Hi my name is Jorgie Ana and i’m thirteen.. #1070870

Hi Jorgie Ana,

I’m so glad you’re visiting here ~ it’s all so complicated, it’s nice to have people who’ve been through the same thing. I’m not sure if what you’re doing is your scan/uptake or your RAI treatment ~ sounds like RAI treatment, but I can’t be completely sure ~ but you can most CERTAINLY eat afterwards! Gosh, I’m sorry you were under the impression you’d be starving! It sounds as if your doctor has recommended a low-iodine diet ahead of time, which just leaves more room in your thyroid for the RAI itself, so leads to a better likelihood of success with your treatment.

By the way, low-iodine doesn’t have to mean NO iodine. You may want to ask your Mom to revisit this subject with the doctor. I would think that those two days of isolation will be little enough fun as it is ~ if you could at least eat foods you like (finally), it’d take a little bit of the edge off. Once you’ve taken the RAI, it’s taken up as much as it can in the first 24 hours, and the low iodine diet should not be necessary. Hopefully you can at least get a reprieve for day 2…..

[Ski]

in reply to: Endo says NO to RAI???Confused? #1070836

A list of your questions is a GREAT idea ~ I’m not sure if it’s shyness, or a weird kind of stage fright, but I think it’s pretty common with all of us. We could go on and on in front of friends, question after question, but put me in that room, looking at all their little pamphlets and junk (and waiting and waiting and waiting) and when we see the doctor, we forget everything except what THEY lead us to ask or say.

As said many times before here, the ultimate choice is YOURS. You are living this, and you have come to a decision about what you want to do next. Your doctor needs to respect that. Discussion is fine, your doctor’s opinions are something to be considered, but that’s all, unless the doctor believes that your choice will lead to harm. This is all tough enough, without having to battle your own doctor to follow up with your choice.

[Ski]

in reply to: Need assistance #1070849

I actually have heard of thyroid tissue re-growing elsewhere in the body ~ obviously it’s VERY rare, but it can occur. I think there’s a way you can do an uptake/scan, but I suppose you’d need to target the scan somehow toward the area where the tissue is suspected, and I’m not sure how they’d go about finding the tissue if it’s somewhere other than what they expect. The fact that your doctor is contacting others for help is a good sign ~ more information is ALWAYS better, and I love seeing a doctor that understands they do not necessarily know all there is to know about everything.

PLEASE let us know how this ends up for you, I know it’s no fun to go through, but the information we all get from it is so important!

[Ski]

in reply to: Thyroid Surgery #1070842

It’s true that finding an experienced surgeon is important ~ one of our speakers once said that surgeons can be under the impression that this surgery is "simple," but in fact the structures are very delicate, and small mistakes can make a big difference to the patient afterward. I don’t have specific knowledge of a good surgeon in your area, but the critical questions to ask are 1) how many of these surgeries does the doctor perform in a year? and 2) what is the percentage of complications his patients experience? If the surgeon is unwilling to pass along this info, CHECK PLEASE, move on to the next possible surgeon on your list. You may be able to find a good surgeon through referrals from either your endocrinologist or your ophthalmologist, they may already know of someone they trust.

[Ski]

in reply to: eye problem and headache #1075523

Your treatment options really depend on the phase of the disease you are in, which the ophthalmologist will have to evaluate. If you are in the "hot phase" (frequent fluctuations, bulging and receding), then Prednisone or directed radiation may work, but it’s not time for any surgical corrections unless your optic nerve is in danger of compression. If you are in the "cold phase" (all changes are over, it’s just the remaining scar tissue and/or bulging that never receded), then Prednisone and directed radiation would not be effective, and you are pretty much left with only surgical options. Whatever the choices in your case, RELIEF is at the end of them, so try to remember that as you experience your distaste for the options you are given…..

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