[DianneW]

in reply to: Decompression Surgery in 5 days #1072132

Tracy,

This isn’t the answer you’re looking for because I’ve already had the surgery, but if you want to talk about it or have questions, send me a private message and we’ll figure out a way to do that. In any case, I wish you the best of luck with your surgery. I think you’ll be glad you did it.

Dianne

[DianneW]

in reply to: High T3 Levels #1072201

Another comment on block and replace: what it doesn’t work well for that Jake was referring to is increasing the rate of remission. Some Japanese studies had indicated that people who used that method were more likely to have a remission, but no one was ever able to reproduce that study, not even the Japanese, so doctors gave up using it for that purpose. Since it requires a slightly higher amount of antithyroid drug, the thought for some time was that it shouldn’t be used since it might increase the risks of side effects.

But some doctors use it for other valid reasons: not because it increases the rate of remission, but because some people are difficult to stabilize on ATD treatment without becoming hypothyroid. When that’s the case, it can make sense to use Block and Replace.

[DianneW]

in reply to: GD Recurrence #1072584

Gladney5,

It’s not at all unusual for a person to be in remission for 4 years. I know of quite a few people who have been in remission way longer than that. About 20-30% of patients who have a remission will never have a return of hyperthyroidism.

I was reading some information in the Thyroid Disease Manager, which is an online textbook geared toward doctors. I ran across a paragraph that said autopsies had been done on seven patients who had recovered from Graves’ Disease and died later of other causes and their thyroids were studied very carefully. These patients were found to have thyroids that showed complete regression of hyperplastic changes. So apparently it is possible for the thyroid to become fully healthy again, at least in some people.

[DianneW]

in reply to: What are the signs & phases of Thyroid Eye Disease? #1072224

Just for the record, only one study has been done in the U.S. using exactly those methods, but this doesn’t imply that similar studies were done and failed to reproduce the results (that RAI makes ophthalmopathy worse in a percentage of patients). Similar studies in Europe have supported those results. Most experts now recommend that patients with significant TED either use Prednisone when having RAI or use some other treatment for hyperthyroidism.

[DianneW]

in reply to: GDF Conference Info #1072226

Hi Kimberly, I’m glad to hear you’re going to the conference again!

I’ll try to find out if there will be a more user-friendly way to make reservations from the web page, and if so, how soon that will be operational. I agree that it’s nice to get the details nailed down early. I’ve been looking at plane reservations; just can’t decide how much I want to pay or whether to wait to see if the prices improve.

[DianneW]

in reply to: What are ‘Normal’ levels? #1072406

Catsmum,

Wonderful training–similar to mine, which I needed to get in to med school (unfortunately, didn’t go due to an unplanned pregnancy). If you’re like me, you know you went to school with some of those doctors and probably did better in class. We had a speaker at one of the GDF Conferences who said she was trying to put her talk into layman’s terms because she wasn’t speaking to a roomful of rocket scientists. But actually, there was a rocket scientist in the group, and many more people who were just about as intellectually capable.

In your case it probably would be a good idea to let the doctors know about your education. I think you’ll find it changes the way they communicate with you and you won’t need to be as pushy to get the level of information you need (maybe just a little). ” title=”Very Happy” />

Any chance you and your daughter can make it to the Conference in Charlotte this year?

[DianneW]

in reply to: RAI #1072238

Mickey65 wrote:I had RAI in Dec of 2008, and it made me feel SO much better. No side effects.

I just don’t "get" the negative stuff people are thinking and saying about it? Your other two choices: getting your throat slit open and the doctor cutting out your thyroid, or taking a handful of pills for a few years and maybe they work or not and then MAYBE having liver problems – and then you will be down to two choices – RAI or surgery.

I’m on Synthroid right now, and I’m having NO ill effects from it at all.

Stating bad comments about things here that you haven’t experienced, doesn’t seem right for those looking for ways to cure themselves of this disease. And then makes those who have done RAI look insane – when it worked out for us?

The good apparently outweigh the bad. Cut us some slack here!

Hi Mickey,

I’m really glad your RAI went well. You’re one of the fortunate ones. I would never try to invalidate your experience, and I’m happy for you.

The other two choices are just as valid, so one might ask the same question of you (why you’d put them in a negative light). To others, they may seem ideal.

I don’t think at all that you look insane for doing RAI when it worked out for you. The only reason I would mention my negative experience with RAI is because I wish when I was making my choice, someone had let me know it was possible the outcome wouldn’t be 100% wonderful. It’s not that doctors aren’t aware that a percentage of patients have that outcome.

Again though, I agree that most patients will probably have a good outcome with RAI, especially with a dose large enough to do the job quickly. The good didn’t outweigh the bad for me, though.

[DianneW]

in reply to: RAI #1072236

KMB, what is the reason that you are switching from antithyroid drugs to RAI? Do you mind sharing why this is necessary for you at this point?

I’m one for whom RAI was a difficult path. I didn’t feel well for a full 4-5 years because my levels kept changing constantly for that long. (A higher, ablative dose most likely would have avoided this.) On top of that, T4 replacement alone left me feeling completely unwell. The conventional view on that right now is that this isn’t thyroid related; yet testing my Free T3 showed it to be below normal, and putting me on a combination (T4/T3) replacement hormone made me feel much better.

My concern for people undergoing RAI has nothing to do with the effects of radiation. Many studies have shown this treatment to be safe. But every doctor who treats Graves’ Disease patients has a portion of these patients who never feel entirely well once they are on thyroid replacement hormone. Until the reasons for this are discovered and eliminated, isn’t it reasonable for patients to at least be warned of this possibility when being presented with their treatment options? If I had known of this, I certainly would have tried for a remission with antithyroid drugs before destroying my thyroid.

Many patients do really well following. I’ve met them in real life, as well as encountering the ones like Ski and others who post here. But I encounter scores of patients whose experiences match mine, so it can go either way. I wish I had some idea what the ratio is, but I don’t. My best guess is that the patients doing well probably outnumber the ones having trouble by quite a bit, but we don’t see them here because they’re not having trouble.

You said you needed encouragement, and if so, that’s the most realistic encouragement I can honestly give you. I suggest you talk with your doctor about what proportion of his patients don’t feel well on thyroid replacement following RAI. If he gives you any kind of honest answer, I’d like to hear what it is.

Best wishes,

[DianneW]

in reply to: What are ‘Normal’ levels? #1072404

Catsmum,

I always find that really annoying when I’m given information on that level (just that something is "normal" or "abnormal"). In essence that tells me they believe I am not capable of participating in my own care, when in truth I’m never sure the providers are capable of providing the quality of care I would like.

Don’t hesitate to be pushy when it comes to getting your daughter’s records. It will help you and her correlate the numbers with how she’s feeling and you’ll have the records if you decide you want to change doctors, or if you need care on an emergency basis. I’m not sure what the differences are in the U.K. or if there is a universal database, but still I wouldn’t think it can hurt.

Best wishes to you both.

[DianneW]

in reply to: TSH Reflex #1072281

The way I understand the term "TSH Reflex" is that the lab will test the TSH and if it’s abnormal, the Free T4 will be taken as well. However, if the TSH is normal, only the TSH will be done.

Was your TSH below the normal range? If so, was your Free T4 also tested?

[DianneW]

in reply to: Almost 7 weeks post RAI #1072271

Hi Amy,

I’ve missed you and have been keeping you and your son in my thoughts and prayers. I’m so sorry to hear there’s been no improvement in the nausea yet, but I hope that’s in his future still.

Just a heads-up: In my case at least, it wasn’t long after I started feeling a little better following RAI that I suddenly went very hypo, and my dose of RAI was much smaller than your son’s. So you might be expecting that to occur at any time now.

Hugs and best wishes,

Dianne

[DianneW]

in reply to: Newly diagnosed with GD #1072798

dmh,

The antibody situation can be complex. Thyroid Stimulating antibodies (TSI) can take several forms, and some of them actually block production of thyroid hormone during some phases of Graves’ Disease, so the overall picture isn’t as simple as measuring the levels and deciding that you have this disease and have to be treated. It might be important to know where your actual Free T3 and Free T4 levels are, since the TSH reading itself can be affected by the antibody levels and the TSH itself isn’t always a completely reliable indicator of whether your thyroid levels are where they should be.

Discuss this issue with your doctor at the next visit, and be sure he’s aware of your symptoms. If he’s only testing your TSH, ask if he will test your actual thyroid hormone levels (Free T4 and Free T3). If you aren’t feeling well it may be related to your thyroid levels, but if not, it’s important this is ruled out so that you can be tested for other conditions that might be causing your symptoms.

[DianneW]

in reply to: What are ‘Normal’ levels? #1072402

Catsmum,

When you get your daughter’s results, do you get them over the phone, or do you get a printed copy?

What I do is when my blood is taken, request that a copy of the report be mailed to my home. I often get a report this way before I’ve even talked to the doctor about it (at least, in some facilities). Regardless, the printed lab sheet always lists the normals for the lab along with the patient’s result.

Try doing this with your daughter’s thyroid tests, and with all her tests (and yours) for that matter. I think you’ll find it to be most helpful.

Best wishes,

[DianneW]

in reply to: PREGNANCY, HELP!!! #1072330

All should go well as long as your thyroid levels are closely monitored, and I’m sure they will be. So, another sincere congratulations from me!

Dianne W

[DianneW]

in reply to: POSTS #1072310

I’m not sure exactly what you mean. Did you make your reply to a post to someone on the board in general, or was that in a Private Message to you?

Dianne W

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