[Ski]

in reply to: Complete Thyroidectomy #1063357

Hi Steve,

This is actually something that’s not unusual after thyroidectomy ~ the parathyroids are located on the "wingtips" of the thyroid, and they control calcium levels in the body. They are NOT removed during the surgery, but it’s not unusual for them to have a kind of "reaction" to the trauma of surgery, and calcium levels may fluctuate briefly. It’s proper that the hospital keep her admitted until they level out. In VERY RARE cases, parathyroid function can be affected longterm, but the likelihood is that this is transient and will correct itself. There are 4 parathyroids, but we only need one to correctly regulate the body’s calcium levels, and the surgeon can take one or more of them (they are easy to see) and "stick" them elsewhere in the neck if they want to remove ALL thyroid tissue, then the parathyroids will function correctly in that location, rather than on the thyroid. Have a talk with the doctor to see what they think, I’m sure that will ease your mind.

[Ski]

in reply to: Can your thyriod burn out #1063368

We have heard that, over time, the Graves’ antibodies appear to end up destroying the thyroid, but not for everyone. Some patients who keep their thyroids long term (either through longterm remission or longterm use of ATDs) do find that, after years go by, their thyroid stops functioning at some point during their lives. Not 100% of these patients experience this phenomenon, as far as I know.

There are several problems with presuming you can avoid treatment and just wait for that to happen. First, it happens in an unpredictable manner, so you are consistently imbalanced. Second, you remain hyperthyroid, which continues to waste your bone and muscle tissue, and can end up creating permanent issues in several ways ~ first and most importantly, your heart is a muscle, so you don’t want any of that muscle tissue weakening or wasting away. Third, you risk thyroid storm, which is an ER event, can be fatal, and can also create another host of lifelong problems, if you survive it.

There are so many risks to remaining hyperthyroid that I truly cannot list them all here. Thyroid hormone is the "fuel" that makes all of our cells function correctly, so if there’s too much, there’s too much everywhere, and it’s impossible to know how exactly your body will respond to this imbalance, but severe damage could occur that would not be correctable, and it could happen in any organ, in any tissue.

While none of our options are perfect, they all return us to health, and all are FAR preferable to remaining hyperthyroid. In the days before we had treatment options, before surgery was safe, before RAI was known, before ATDs had been developed, fully 50% of Graves’ patients found the disease to be fatal. Those are horrible odds.

Remember that for the most part, we see patients here who are either newly diagnosed, or having trouble being regulated. The vast majority of patients go on to be successfully regulated and don’t even consider Graves’ to be an issue in their lives, and for that reason, they don’t visit here. You do see some people who are newly treated (or longterm regulated) who drop in and announce their well being, and you may want to look for those, they are very uplifting and I’m glad they take the time. They usually just check in once, and then go back to their lives, so those posts will not see a great deal of activity, but they’re worth finding, for your peace of mind.

RAI and thyroidectomy are the next best choices for a patient who cannot take ATDs, and you can get lots of advice here to make sure you have the best possible outcome with either. Bottom line: remaining hyperthyroid is not an option.

[Ski]

in reply to: I Choose RAI I-131 #1063423

Not very likely that you’d be hypo within a week, but the body does react to dramatic changes in odd ways ~ lots of us have had extremely odd symptoms (I had such severe abdominal pain about a week later that I had to use a liquid diet for three days before I felt better, but the doctor could never find a true cause for the pain, despite all kinds of screenings and tests). Typically we recommend waiting until you’re experiencing 4 or 5 classic hypothyroid symptoms, and experiencing them often, before going in for new labs. Always good to check in with the doctor’s office though, if you’re very concerned.

Good luck with your appointment at the eye center! There is a chance that RAI can cause some eye symptoms, but typically they resolve pretty quickly. I had a few months of dry, gritty eyes after my first RAI, which resolved completely. I had no changes at all after my second (more than a year later).

[Ski]

in reply to: New Member #1063376

Hi Moxley,

I just replied to your other post, check that for more details. I wanted to let you know that if you are still clinically hyperthyroid, you should not be exercising beyond simple stretches and short walks ~ hyperthyroidism causes "muscle wasting," which is only accelerated and worsened by exercise (in most cases exercise would probably be a good suggestion, but definitely not in this case). Remember also that your heart is a muscle, so you REALLY want to protect yourself!

I’m so sorry to hear that your marriage has been affected ~ I would urge you to PLEASE make no permanent decisions on that right now, while you’re still ill. Our reactions are definitely heightened, and we can easily make a decision that looks like a BIG mistake after we’ve "come back to ourselves." The rage is VERY common, it is chemical, it is not you. Please try to forgive yourself.

Properly managed, all the treatment choices we have can successfully correct/stabilize our thyroid hormone levels and return us to health. NO "natural substance" is able to accomplish this, and thyroid hormone level imbalance is extremely dangerous to your body, so please do everything you can to get GOOD treatment now. It might not be simple to find, but it’s worth everything it takes.

[Ski]

in reply to: New Member #1063378

Hi Moxley,

ATDs (methimazole or PTU) need to be managed, they aren’t simply given and then "they work perfectly," it requires someone who is paying attention to your levels throughout the process. That COULD be you, by the way. Get copies of all your lab results (those belong to YOU) ~ you may have to sign a HIPAA waiver in order to get them, but it’s worth it. Then get yourself educated on what’s going on exactly, and you can serve as a far better advocate for yourself. That way, even if you see a different doctor each visit, you can quickly brief them on your status and hopefully get better care.

A teaching hospital may not require you to have insurance. A state program may be available that will help you with the cost of meds, lab tests and appointments. I’m not an expert on what exists in each state, but you may well have access to some programs that could help. I think there are some who will be able to jump in on that part of your question.

You WILL get better, after you successfully navigate ATD treatment (or if you feel comfortable with it, one of the other treatment choices, either RAI or thyroidectomy) and get to normal, STABLE levels of thyroid hormone. Keep in mind that when your levels are normal, it signals only the BEGINNING of the healing process, which continues for a while after levels are stable. Small improvements, not large ones, are the norm.

It takes time, but please don’t give up on your nursing dream, it’s not necessary! Postponing for now is wise, and I’m glad you were able to find something else in the meantime, but you WILL heal and you will be able to return to normal activities. Once again, IT TAKES TIME, so while you’re going through the process, go easy on yourself, and make others go easy on you too.

I know it’s tough with kids (mine were 5 and 6 when I was diagnosed), but it CAN be done, they’re far more resilient than you think, and you’ll all get through this. Try to explain things to them in age appropriate ways, they can handle it far better than "keeping secrets." Secrets are scary for kids ~ what are you hiding? What could be so bad? They’re able to handle it much better if they have some information they KNOW is true, and you’ll be completely floored by their capacity for compassion, I promise you.

Stick around, you’ll get a lot of good information here, glad you found us!! ” title=”Very Happy” />

[Ski]

in reply to: lab results #1063387

Tough to answer that ~ in your particular phase of treatment, you can’t always rely on the TSH, so it’s a good idea to talk with your doctor and see what THEY say.

If it becomes a chronic state (normal T4/T3, suppressed TSH), they usually call it "subclinical hyperthyroidism," and move for adjustments that will stimulate the TSH to return, but again, that’s only if it continues for a VERY long time.

I experienced subclinical hyperthyroidism after my first RAI (I did not receive a large enough dose to finish the job), and I pushed to "wait and see," but after a year went by and nothing changed, I did my second RAI. I did not feel as though I was sick prior to that second RAI, but after I was treated and levels became truly normal and fully balanced, I knew I had NOT been well prior to treatment. Still, that was a FAR different circumstance than the one you are going through right now.

Best to continue with tests every few weeks and "stay tuned" at this point, make decisions with your doctor as the process goes on.

[Ski]

in reply to: Dose of I 131? #1063389

We can’t evaluate anything medically, but I can tell you that the dose you had was about one and a half times the dose I was initially given in 1999, and it didn’t do the job, but I think my endo mentioned a dose closer to yours, as one he would have recommended (unfortunately, he did not discuss it with my radiologist ahead of time). An evaluation of your thyroid status (the way it "feels" and "looks") might well have taken into consideration your past treatment, so "normal" would have a bit of a flexible definition at that point.

[Ski]

in reply to: Eye Disease #1063400

Just to add one thing ~ we can experience dry eyes simply because our tears are less thick and moisturize our eyes less efficiently, which (as I understand it) is another typical symptom of Graves’ Disease overall (not confined just to Thyroid Eye Disease). Artificial tears (the ones without preservatives are best) can protect your eyes from potential damage caused by chronic dryness.

[Ski]

in reply to: 2011 Patient & Family Conference will be in Boston #1063409

The information given at this year’s San Diego conference indicated that they’re looking closely at Boston for next year’s conference. I’m not sure whether the final decision has yet been made.

[Ski]

in reply to: Pediatric graves diseas #1063414

Hi Lori,

Welcome to the forum ~ glad you found us! As I’m sure you already realize, this decision is a tough one, especially for a child so young. Much the same as the decision for adults, it ends up being very personal, and the reasons for choosing one thing over another can become clearer as you go through the process and see how your child is doing.

When you choose anti-thyroid drugs for a child, the newest data indicates that you should NOT be using PTU, it should only be methimazole (generic for Tapazole) for children. The upside to ATDs is that they are able to reduce the thyroid hormone levels pretty efficiently, and your child can then begin to heal and stabilize, at which point you have a little breathing room to consider whether your child needs a "permanent" solution during childhood. I’m sure you’ve been told that ATDs can create particularly nasty side effects, which would cause any parent to hesitate. The "good thing" about those awful side effects is that they are very, very rare, they usually occur within the first 90 days of treatment with ATDs, and they are reversible if they do happen, given quick intervention and cessation of the medication. Make sure you know what to look for in terms of symptoms, and make sure your doctors are pulling labs on liver function and complete blood count, especially early on in the process.

Probably the hardest thing for you is your daughter’s behavior ~ we are so volatile when we are hyperthyroid! Try to give her some slack right now, do what you can to let her have "her way" sometimes (within limits, of course! I am a Mom too, I know it’s hard to balance those things…), and try to understand that a lot of her behavior is due to the chemical imbalance. She’ll "come back" when she’s normalized, and stabilized. Keep in mind that hyperthyroidism causes a lot of damage across the entire body, and only AFTER we are stabilized do we truly begin to heal.

So those are some things to consider ~ we do have other parents of children with Graves’ here, and I believe we even have some adults who began their Graves’ journey as children, so I’m sure you’ll get some more good information and support. Let us know if you have any questions as you go through this, or just visit to vent, that’s what we’re here for too! ” title=”Very Happy” />

[Ski]

in reply to: 2011 Patient & Family Conference will be in Boston #1063407

I would LOVE that, Jake!! For those who can’t tell by his avatar and posts, Jake is HYSTERICAL ~ he truly knows how to tell a good story, and relate important concepts within the story ~ this would be perfect. My only complaint is that I probably won’t make it to next year’s conference (ooh la la, we’re supposed to be in France), so Jake, you must promise to do it for the next TWO years so I can see you when the conference comes back to the West coast. ” title=”Very Happy” />

[Ski]

in reply to: I Choose RAI I-131 #1063418

Thanks so much for spelling out your process!! I think it really helps those who come afterward to see what leads a patient to one choice or another (and it also helps everyone to see why one choice does not fit all). Best of luck with your treatment, visit often, let us know how you’re doing! (Love the attitude, by the way, best way to approach anything is with a smile!) ” title=”Very Happy” />

[Ski]

in reply to: Low TSH Normal Free T4 #1063446

Oh and one more thing ~ if you’ve been hyperthyroid for a long time, your pituitary can take a little bit of time just to "wake up and smell the thyroid hormone," if you know what I mean. Not sure what time period to allow for that, but we need to be aware that it can happen.

[Ski]

in reply to: Low TSH Normal Free T4 #1063445

TSH lags behind T4 because TSH is released from the pituitary in response to the T4 it "senses" in your bloodstream. It calculates something of a "running average," rather than an immediate level, in order to keep thyroid hormone from fluctuating wildly, so it takes a couple of weeks *after the T4 stabilizes* before it will "read" accurately.

[Ski]

in reply to: Low TSH Normal Free T4 #1063443

We can’t interpret labs here, that’s a job for your doctor, but it’s a good thing you’re getting hard copies of your labs. That way you’ll know what questions to ask when you see or talk with the doctor. (Better yet, I love email contact with doctors, it is very efficient ~ if they’re used to using it, you can take the time to ask the whole question, and it doesn’t take much of their time to answer.)

That said, any levels outside the normal range need to come into the normal range somehow. It’s true, though, that TSH levels lag behind your T4 levels by a couple of weeks at least (depending on your stage of illness/treatment), so do yourself a favor: make note of this date and what you feel are your "optimum" feelings, as kind of a "symptom diary." Now, each day or two, update with how you are feeling that date, what has changed, and be specific. Something like that is EXTREMELY helpful while you zero in on your best dose.

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