[Ski]

in reply to: fatty decompression in 4 days #1169156

Hi there,

I haven’t had this procedure done — actually, I’m hoping your procedure is behind you now, so you can update this post with the actual experience you had! I do understand there are other drugs they can use to keep you "more loopy" than Valium, but in truth I’m not certain how they accomplish this. My husband had what they thought was a dislocated knee about eight years ago (turned out to be FAR worse than that, upon examination of the x-rays), and they told us they’d give him "fuggettaboutit" medicine so he wouldn’t recall the manhandling and unsettling nature of watching a knee go "back in place." Perhaps they will use something along those lines.

Did your doctor not have a thorough consultation with you ahead of the procedure? I would hope that these types of issues were fully addressed so that you felt absolutely comfortable…

[Ski]

in reply to: SURGERY TOMORROW-palatal graft to lower eyelid #1169140

Shirley, I am SO GLAD to hear your good news!!! And I also thank you for your detailed account, you know it’ll help people down the road! Wishing you continued success!

[Ski]

in reply to: 2011 Conference – Earlybird Rates Extended to October 7th! #1169197

Thanks Kimberly!

Hey, if you’re on the fence about this, take it from me, I’ve attended for many years now, and you’ll be glad you came if you can do it — the early bird registration is a great thing, take advantage! It’s absolutely amazing to me how much more I learn each year. Hope to see you there!!

[Ski]

in reply to: should I do surgery? #1169172

It’s especially difficult for us to give advice to someone who isn’t dealing with the disease we’re battling, so I’m not sure how much we can be of assistance here. I think thyroid size is likely not exact from person to person, but again, not a question I’ve needed to answer before. For most of us, you can tell when your thyroid is "enlarged," meaning it bulges out of your neck, but "normal" may not have the same dimensions from one to another.

One of the most difficult aspects of Graves’ is that the symptoms mimic those of so many other conditions, so if you are experiencing Graves’ symptoms, it may well be true that those symptoms ARE from another condition, especially given your other results. That’s something you’re going to have to wait and discuss with your physician. I do hope you have someone you trust — make sure you write down all of your questions before going in, because it’s always tough to remember them, even more when you’ve got symptoms you’re concerned about, and even more when you’ve got symptoms that make it harder to remember…

Please let us know how your tests come out, and I hope you find a way to health soon!

[Ski]

in reply to: cannabis use and graves??? #1169185

No research on this, as far as I know. People have brought up cannabis here before, but not exactly the question you’re asking.

[Ski]

in reply to: 8 weeks post-RAI, need someone to relate to #1169187

Hi Caitlin,

Your experience is common to many of us here, we empathize, believe me! I can give you some hope — you WILL feel better, I know it. The problem with thyroid disease is that it causes harm while your levels are abnormal, and that damage does not even begin to be fixed until your levels are normal, and stable, so we experience symptoms even after our levels are normal. If you’ve had continuing issues with thyroid imbalance since your diagnosis, then you have only now reached a point where your body can BEGIN to heal from the effects of that. You ought to notice some small improvements steadily at this point, so take heart, but remember that you are still healing, your body has been through a lot, and it’s going to take some time until you feel more well than ill.

We’ll be here for you, we’ve all gone through it! I know what you mean about feeling as though you’re pushing people away — it is extremely difficult to be unwell for a long period of time, and other people just don’t always know how it happens or why you can’t just "find the pill" that makes you better in a few weeks, like everything they’ve ever had.

While you’re still healing, please be kind to yourself. Learn your limits and stay within them, and you’ll be able to heal more quickly. Take some care in healing your spirit as well, whatever that means for you. To some people it’s a walk in the woods or at the beach, to others it’s laughing with friends, to others it’s a nice, warm bath. Take advantage of whatever soothes your soul and you’ll feel better too.

Let us know how it’s going!

[Ski]

in reply to: Pregnant and questions! #1169206

We’ve known patients here who have accidentally become pregnant *within* the 6-month recommendation, and they’ve gone on to have beautiful, healthy babies, so please try not to worry. You need to retain your "Zen" during pregnancy, it’s important.

The fact that you’ve had RAI and continued on to take thyroid hormone replacement means that there may be no worries about foods affecting your thyroid function — your thyroid is most likely all gone (RAI does most of its work in the first six weeks, and everything it can do in six months, with a far lower level of activity between the six-week and six-month marks), and the main thing you need to concern yourself with is making sure your levels remain stable during the pregnancy. Some changes CAN occur in the way your body processes the replacement hormone during pregnancy, so just best to keep testing, testing, testing to be sure that you make any adjustments as soon as you can to maintain stability. In a normal body, the changes would be managed through the TSH-feedback-loop, but you are managed just on replacement, so it’s something that needs a person’s eyes on in order to manage it the most efficient way.

As for high-risk ob/gyn or no, well, you may want a consult with one, or perhaps meet a pediatric endocrinologist once to discuss potential risks. See how you feel after that. If your regular ob/gyn understands what’s going on with you, that may well be all you need. Make your ob/gyn and endo a TEAM in your care through the pregnancy, make sure they both know every step you’re taking, and you’ll be glad you did.

Congratulations on your pregnancy, I’m sure all will be fine, please try to relax!

[Ski]

in reply to: Hypo 6 months and counting… #1169475

We all end up having very different experiences with Graves’ Disease — the severity of our symptoms, the form our symptoms take, the path we take to wellness, ALL of these things vary from person to person. The one constant is that everything takes more time than we’d like, when we’re trying to regain our health. The fact is that we do not end up feeling truly well until we have reached, and maintained for some period of time, normal thyroid hormone levels. For each of us, again, this period of time varies, but the truth is that taking any form of thyroid hormone replacement takes time for the body to metabolize fully, and can take several adjustments before you hit the best point for you. Once the body has fully metabolized the dose so that tests are accurate (typically 6 weeks), you can proceed with adjustments. Each adjustment gets you closer to your goal, but there is no absolute formula that says a person at this stage of treatment who weighs this much and is this old should have exactly this dose, so zeroing in on the right dose to return you to health takes time, but try to celebrate this process and the journey as you go forward. Notice how you feel better today than you did last week, last month, last year. Keep a symptom diary for your doctor to assist in the process, and eventually you’ll find your spot.

[Ski]

in reply to: Just Been Diagnosed #1169429

@donita101:
I’m going to re-post your question in its own topic, so you can more easily focus on the answers you get. Look for it in a few minutes. ” title=”Very Happy” />

[Ski]

in reply to: New to boards, not so new to GD #1169216

Hi Ashley,

At this point in your treatment, you could be successfully treated by a general practitioner you trust, which would be less expensive for you, I believe. It is important to have the right levels of thyroid hormone, otherwise you’re not going to feel well, which means you need to have access to blood tests and a doctor to consult with. It is less expensive to get a lab test and a phone consult with a doctor, and you should be able to hone in on your best replacement hormone dose in that way, as long as you keep taking the replacement hormone regularly pursuant to whatever advice the doctor gives you. It takes time, no question, but getting CLOSER to your best level will always be better than being chronically out of balance, and closer all the time means that eventually you are THERE, and feeling well. It takes a little while being normal before your body really, truly heals, but every step into the right direction will provide relief.

Taking too much replacement hormone will be as damaging to you as taking too little, so it’s critical that you figure out a way to get some care. You may be able to check with a former physician, or go to an emergency room at least to find out where your levels are right now — you may be able to get a doctor’s advice on ongoing care, but at least you would get some information and start moving in the right direction.

[Ski]

in reply to: Psychological stress=Graves? #1169273

Hello George,

You don’t mention where you are with treatment, but I presume that you have been treated with anti-thyroid drugs? Please fill us in on that when you have a minute.

The short answer to your question is YES, stress can cause a spike in Graves’ Disease hyperthyroid symptoms.

Here’s the connection. When we are under stress (good or bad, so count getting married, having a baby, or moving to Paradise), our immune system is stimulated, as a protective measure, since the immune system protects us from disease, and stressful circumstances can serve to make us vulnerable.

The difference with Graves’ patients (and anyone with an autoimmune disease) is that we have some antibodies within the immune system that serve to attack us, instead of protect us. Because of that, when we are under stress, and our immune system is stimulated, these damaging antibodies are also stimulated, so the symptoms of our autoimmune disease can "spike" during those times.

The best thing to do is get blood tests to confirm whether you’ve got hyperthyroid levels, and if so, speak with your doctor about your options. If you are currently taking ATDs, a simple dose adjustment may help get you back to normal.

If you have had your thyroid removed, either through RAI or surgery, it shouldn’t be affected by the antibodies (since it’s not there), but in some cases a tiny amount of active tissue remains that can respond to antibodies.

Do you currently have regular blood draws and appointments with your endocrinologist?

[Ski]

in reply to: RAI Treatment #1169287

Thyroid hormone replacement "brands" are all supposed to be chemically identical to each other, so whatever you find that works for you will also work through pregnancy. It’s not the same situation as anti-thyroid drugs, which have different chemical compositions and work in different ways to accomplish the same result, so they have different side effects and different recommendations regarding use during pregnancy.

Thyroid hormone replacement is made to be chemically identical to the thyroid hormone your thyroid would put out if it were working, so there’s no effect that one would cause, different to another, that could cause harm to the baby. The issue during pregnancy, while taking thyroid hormone replacement, would be to make sure your levels are normal, and stable, so you may need to adjust doses while pregnant, but you would not switch brands of medication.

We have found that it is not always dose-equivalent across the brands — in other words, the dose that successfully manages your thyroid hormone levels using one manufacturer’s thyroid hormone replacement will not necessarily be exactly the same dose that successfully manages your thyroid hormone levels using a different manufacturer’s thyroid hormone replacement. For that reason, we recommend that you stick with whichever brand you began with, unless there is some compelling reason to switch. If you need to switch, due to insurance program changes in coverage or some other thing, you should just realize that it is important to get tested every six weeks or so until you have determined how well that dose is working for you, and make adjustments to maintain your normal, stable thyroid hormone levels.

I hope that helps!

[Ski]

in reply to: How do I know if I have TED? #1169299

Our eyes can be affected in other ways than TED — excessive tears can be a common occurrence, due to a change in the quality of our tears that I believe can be attributed either to Graves’ or to autoimmune disease in general. Since the tears don’t serve to keep our eyes sufficiently lubricated, the tear ducts release more tears to try and accomplish the lubrication necessary for your eyes to remain healthy. Artificial tears can help keep the volume of tears to a normal level. It’s also important to note that issues due to dryness alone (no TED at all) can damage the eyes permanently, so it’s critical that lubrication is maintained successfully.

Swelling of the tissues around the eyes can result from hypothyroid levels, or sometimes from TED.

You can really only know whether you’re dealing with TED through examination by an ophthalmologist. It’s best to find one who routinely treats TED patients.

I hope that helps a bit!

[Ski]

in reply to: Grave’s disease and singing #1169316

I didn’t have any issues with my singing voice following RAI, and I would agree with Kimberly that you should speak with your general practitioner and get a referral to a doctor to see what’s going on. I have never heard of voice issues being a specific risk from RAI, but swelling of the thyroid can result from thyroid levels that are out of the normal range (in either direction), and I suppose it’s possible that the RAI action may cause some irritation and swelling as well, which may well be going on at some level for you still. My dosing doctor told me that the RAI would do most of its damage in the first six weeks, but could potentially keep working for six months (if there were still thyroid tissue to act on at that point).

Let us know how this works out for you, it’ll be interesting to know!

[Ski]

in reply to: radiation treatment to eyes #1169376

Hello ladies!

runbarb, I’m so glad you are feeling good about the treatments!

I just wanted to inject a tiny bit of basic info in case it helps — at our last conference, there was some talk of the fact that these two methods of treatment, early on in the process, may serve to keep the worst of the changes at bay during the active phase of TED. (I’m sure you both know of the hot/cold phases?) Once the active phase is over, there is typically some period of stability, followed by a period of improvement. It’s possible that the more you can keep down the swelling now, you can minimize the need for surgery later, or make surgical corrections less complex in the end.

So, while it’s true that both prednisone and orbital radiation are effective only while you’re taking them (in other words, stop treatment and the swelling returns), TED has a fairly well-defined disease curve, so if you can keep the swelling down when it’s likely to be at its worst, you may just "wait out" the hot phase and end up with a milder result overall.

I know it seems drastic to be treated with either of these methods, but we’ve heard that a patient who responds well to one will usually respond well to the other, and that means you can use them both in order to use less of each and minimize the risks.

Wishing you well, please do keep us updated!

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