[Ski]

in reply to: Just dx with Graves and have a few ?? #1075469

Hi Tracey,

It is definitely possible to have Graves’ and get a normal TSH reading on a blood test. First, that blood test was two months ago, so it could be different now (TSH changes rather slowly, it serves as sort of a "running average," so six weeks later you could find a different result). Second, the normal range is rather large, so the possibility exists that your TSH should be much higher to be normal.

An uptake/scan is pretty good evidence. If you are concerned that the results may not be accurate, first have a talk with the doctor (while looking at the scan results), and second, ask for a blood test for the Graves’ antibodies. It’s not useful in terms of figuring out "how sick" we are, and sometimes can even test negative when we’re positive (the antibodies wax and wane for reasons no one understands, and they do not correlate with our level of symptoms), but if you get a positive result for the antibodies, at least you’ll be sure in your own heart that this is what you’re dealing with. I can understand completely wanting to be certain before proceeding with treatment.

[Ski]

in reply to: eye prescription #1075579

Oh, I sure wish there were. With my contact lenses, my doctor could give me a sample of the new prescription when I complained, so it’s a little different than glasses, but I would have to buy the rest of the year’s worth to replace the old one. I ended up going month by month, because it was changing almost that rapidly, back and forth. Since that first year, I haven’t experienced the same kind of vision changes, so I haven’t had to worry about it. About the only thing I can think of is to sign up for a medical expenses savings plan, if you have access to one, where you can have money set aside pre-tax for these types of expenses. With medical expense accounts, they allow access to all the money before you have put in your share, so at least you could give an educated guess at the beginning of the year about how many replacements you may need, and set that amount for your account. At least hopefully you can have replacement lenses done, instead of also using new frames.

[Ski]

in reply to: eye problem and headache #1075520

The eye disease follows its own course ~ and, as a matter of fact, the only doctor I have ever heard to express an opinion on a connection indicated that hyPOthyroidism was more of a risk for triggering symptoms of the eye disease, so an increase in your Synthroid obviously would not cause that. Following that logic, the fact that you’ve been feeling tired may indicate that, for you, you have been hypothyroid, and perhaps that has triggered the eye symptoms.

For the most part, the thyroid and the eye symptoms do not correlate. It’s a different condition within the Graves’ "syndrome."

It’s a good time to go see an ophthalmologist and get their opinion.

[Ski]

in reply to: Thank You for the Validation #1075527

Dear Cathy,

You’re already helping people, just by being here ~ your posts are so clear and insightful, I know plenty of people are getting the kind of support they need just from reading. And thanks for the kind words.

At our conference, we had a session on "alternative therapies," and one of the therapists noted that a book on alternative therapies actually had an entire chapter on Support Groups, since just getting together with people who understand what you’re going through can be so calming and helpful. The psychologist who spoke in a separate session also highlighted the importance of social support systems to help "keep us together" during the hard times. It is such a relief, isn’t it?

Sending virtual hugs…

[Ski]

in reply to: Unanswered questions #1075545

You’re welcome beana,

Unfortunately there are far too many doctors who are very comfortable in dismissing our symptoms, patting us on the head and telling us to go home and snap out of it. Graves’ has taught me not to tolerate that. You’ll be on a better path soon, I’m sure of it. Here’s to health! (Count it in baby steps, a little better each day.)

(And by the way, I’m a she. I often forget that you can’t tell by the name…) ” title=”Very Happy” />

[Ski]

in reply to: Post-RAI – when do I start feeling better? #1075556

Sorry, I don’t have information on all it could be ~ there was a doctor at one of our conferences who said that when he had a Graves’ patient with symptoms that he couldn’t quite "place" in terms of a condition, that he would do an "overall screen" for other autoimmune conditions. I’m not sure what that consists of, but that would seem a good place to start. One good, comprehensive physical examination may be a wise beginning also.

I truly wish you luck, I think the worst time of any condition is before we know what’s really happening. Be VERY good to yourself now, it will help keep your frustration down.

Let us know what you find out!

[Ski]

in reply to: Post-RAI – when do I start feeling better? #1075554

One more comment for Kallikat,

BRAVO that your GP is willing to help you through this. We find that many doctors can be our primary support through Graves’ ~ it doesn’t always have to be an endocrinologist. Any relationship that works for you can be effective.

And as far as a physical therapist goes ~ it’s helpful to know exactly WHERE you are weak and where you are strong, because then you can focus your exercise to support the areas that are okay, and build up the areas that are not. Without that support, it can be very difficult. Be VERY easy on yourself. One of our facilitators here had to start working out her arms by using paperback books, 10 reps at a time, because it was determined that she only had 5% of her strength there. Anything more than that would have caused strain and damage. So be VERY forgiving of your body right now, take it easy and build it up slowly.

[Ski]

in reply to: Unanswered questions #1075543

If you’ve been taking meds for four years, and your TSH is still unmeasurable (<0.01), then even with normal T4 levels, you are considered subclinical hyperthyroid. Your doctor should NOT be satisfied, after all this time, with this TSH level and your symptoms. If I were you, I would search up a different physician. Sometimes, depending on the circumstances, a general practitioner who knows you and is willing to do some research on Graves’ can be your best possible resource. What you need is someone who understands just how complex this is for the patient to deal with and for the doctor to treat EFFECTIVELY.

Just for the record, holistic approaches may help with your symptoms, but nothing except ATDs, RAI, surgery, or thyroid failure can bring down your thyroid hormone levels. Nothing. In the days before there were any treatments for Graves’, it had a 50% fatality rate, because half the patients would die before their thyroid did.

The ONLY danger with hypothyroidism is if it goes on too long, and we have thyroid hormone replacement to counteract that. Thyroid hormone replacement is chemically identical to what our body already produces, so it’s not a strain on our liver and kidneys the same way that other medications can be. Weight gain is not an absolute given, and a good diet and reasonable stretching (within your personal limits) can minimize that.

Keep asking questions, we’re here to get you through this!!

[Ski]

in reply to: Post-RAI – when do I start feeling better? #1075553

I just want to make a quick clarification ~ our immune system is not "compromised" in the classic way you would imagine, where it doesn’t work. Our immune system is actually working overtime attacking our own healthy tissue, and that’s a different defect entirely. I had RAI (twice) and have had no increase in allergies, infections, or any other illnesses since. It may be that you are suffering from some other condition (or many conditions) that has brought on all these reactions, but I don’t think it’s fair to blame RAI.

The fact is that our body goes through an awful lot through Graves’ and even through the healing, and there’s no telling which of our body systems were more "attacked" when we were hyperthyroid. We are all different, and it appears that the hyperthyroidism attacks us where we were weakest to begin with, or perhaps the effect is amplified because that part of us was already compromised, so hyperthyroidism brought on a total failure.

I’m not saying you’re not miserable, and I’m not saying that these things are not related ~ but we need to be careful about how we characterize what’s going on. If we believe we have a "weak" immune system and we take any kind of "immune system boosting" supplement, we can actually increase our symptoms, because boosting OUR immune system means accelerating the activity of our harmful antibodies (the ones attacking our thyroid, eyes and skin), which are inside our immune system just like the things that really do fight off disease. That can be a delicate dance, and we need to be very careful.

[Ski]

in reply to: Choosing Thyroidectomy on Purpose #1075730

Hi crjszb,

Sometimes doctors have a natural aversion to surgery just because it IS surgery, and there are inherent risks with that. Sometimes doctors have a good reason for you to avoid surgery. A frank discussion with the endo is in order, and after that, the decision belongs TO YOU. Whatever makes you the most comfortable is what should happen, barring any medical reasons you cannot choose any particular treatment.

PTU is the ATD "of choice" for pregnant women, because methimazole is completely contraindicated. I hadn’t heard that PTU "caused" birth defects ~ you should check the source on that to be sure.

Still, if you don’t have any other risk factors for surgery (diabetes, for instance), that option should be open to you.

It’s a good thing you’ve already met a surgeon you trust. Let us know how you’re doing.

[Ski]

in reply to: Eye Disease after years of Euthyroid #1075534

There are patients like you, who start having eye symptoms long after their thyroid issues are resolved. You’re in a small percentage, but it is known to happen. From what we heard at the conference a few weeks ago, the intraocular steroids you mention are in the forefront of the treatment of TED, and the doctor who spoke said very good things about the results they’ve experienced. They also spoke of radiating the orbit (directed radiation from outside, not the same kind of thing as RAI), also meant to supplement the reduction in swelling and help minimize the need for oral steroids.

The main idea is to keep the radical changes at a minimum while the disease is in its "active phase," because hopefully that will reduce the need for intervention after you reach the stable phase.

[Ski]

in reply to: Post-RAI – when do I start feeling better? #1075549

Hello to both of you,

You may each benefit from a referral to a physical therapist. The fact is that while we are hyperthyroid, we lose muscle mass. You may have a general idea of where you think your body is, but I think some strength tests with a physical therapist might surprise you. You’re both, believe it or not, in the early phase of getting better. It appears that you’ve both found a thyroid hormone level that is within the normal range, but you may not have had a lot of support in finding YOUR perfect point. If you look at your blood test results, you will see where you fall within the (quite enormous) normal range. A dose change might move you slightly one way or another, without taking you outside the normal range, and you might find that you feel a little better. Remember that thyroid hormone levels are fragile ~ changes generally happen slowly, and your body takes a while to adjust. We are told to wait at least six weeks before testing blood levels after a dose change ~ and I’ve noticed too that when my dose is changed, I have a short period (a week or so) when I feel "up" one day, "down" the next, but it eventually levels out. So give each dose change a chance, and a full evaluation. You (and your doctor) would probably benefit from using a "symptom diary," because that can give you a hint about which side of "your normal" (above or below) you are on. Some symptoms occur in both hypo and hyperthyroidism (anxiety and sleeplessness, for example), so seeing the entire constellation of your symptoms, and the severity of each (rate them on a 1-10 scale), can give you a much better idea of where to go next.

So, from here, you still have a ways to go. Take things easy, know that it’s going to take a while, but know that you will get there.

A physical therapist can be invaluable in getting your body and exercise patterns back. You could easily be overworking, if you believe there is "baseline muscle" that just doesn’t exist right now. Do only what you are capable of doing without discomfort. Just try to do a little more each day. And forgive yourself ~ I don’t believe (as the doctor said) that you should "rejoice, you have an excuse," but you need to remember that you were critically ill, and this is one of the temporary prices you must pay as your body heals. Try going out and getting some clothes (cheap ones, maybe even thrift shop stuff) that is your current size OR BIGGER, because the more comfortable you are in your clothes, the more you are able to move when the spirit moves you and then, ironically, the easier it will be to take the pounds off. It’s tough to know when you will feel like exercising, because at this point your body is doing all it can to heal, and to support you in all you’re asking it to do, and sometimes it just shuts down. Do the best you can, and truly, know you will get there.

[Ski]

in reply to: Unanswered questions #1075541

Hi everybody,

There’s no question this takes its toll on us ~ now, in answer to beana, if you were diagnosed four years ago, have you been taking PTU and beta blockers all this time? Or did you attain remission at some point and stop the meds? You don’t mention your current thyroid hormone levels ~ have they been tested lately? If you are still taking PTU, it’s possible that your dose needs to be changed ~ I never took PTU, but my understanding is that your dose requirements change over time, so you need continuous monitoring to keep your thyroid hormone levels where they ought to be. [Well, no matter what, we should always have our thyroid hormone levels tested occasionally (annually would be best) even after we’ve had treatment and are on thyroid hormone replacement.]

If your thyroid is still functioning at any level, the antibodies will act on the tissue at varying rates and symptoms will fluctuate. The most important contributing factor to our feeling normal is to get to, and stay at, a good thyroid hormone level. I mean stay at for months, not days. When you’re hyperthyroid, your body, every cell, is under attack. Once your body gets back to normal levels, we compare it to the situation after a hurricane. The wind is no longer blowing, the rain has stopped, but the roof is in the tree. So, you need to find your normal thyroid hormone level (however you do that, through meds, RAI, or surgery), and then you can begin to heal from the onslaught. I know it’s frustrating, but that won’t change the facts. It doesn’t sound as if you’re at a good level right now, or perhaps you’ve fluctuated a lot and your body is tired (fluctuating is almost as stressful to the body as hyperthyroidism or hypothyroidism).

I can probably be of more help once you’ve given us a little more information about where you stand right now. We do understand, we’ve all gone through it, and it’s frustrating. I think we’ve all found that knowing more about what’s going on has helped us get through it. Above all, be kind to yourself right now. You might not think you’re very ill, but thyroid imbalance is very debilitating. Take it easy. Also, nothing happens quickly, so get to know your patient side.

I look forward to hearing more from you…

[Ski]

in reply to: eye prescription #1075577

It’s good you have a doctor you can trust. I know I had small changes (back & forth) for a while, I can’t really say how long because they started before I was diagnosed, so no one knew why. My optometrist said he was "surprised" I noticed such small changes. Interesting.

In any event, the changes stopped. Keep in mind also that your eyes can change one full prescription point just by being chronically dry. That messed me up with my contacts for quite a while ~ I kept accusing them of giving me faulty lenses, and it was just that I wasn’t keeping my eyes moist enough.

The eye thing is THE worst part of this whole syndrome, no question.

[Ski]

in reply to: eye prescription #1075575

It’s possible that the vision changes could come from symptoms of the eye disease ~ when our eyes change position, the focal point can change. The very definition of active eye disease is frequent changes (for the worse and for the better), but as Cathy says, the typical "run" of the active phase is about a year. I would advise that you see an opthalmologist, because this certainly isn’t the only condition that could be causing radical shifts in your prescription. Best examined by a professional ~ your sight is valuable and should be protected by all possible means, and you should know with certainty what is behind these shifts.

[Author]

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