[Ski]

in reply to: Symptoms back after 2 years in remission :( #1063939

Hi Michabelle,
The most recent science on sugar says it doesn’t really "amp" us up (not that it’s incredibly good for us, but probably not the demon we’ve thought) ~ so perhaps you reacted to the caffeine in the chocolate, rather than the sugar in the cookie. I know that doesn’t help much, I just wanted to point it out….

[Ski]

in reply to: RAI tomorrow #1063864

I know the separation will be tough, but you can keep in touch with phone calls (even Skype!), and you said it ~ it’ll be worth it when you can play with him again. Take it easy, try to just relax and soak up some peace of mind. You deserve it, you’ve been through a lot! The upside is that there isn’t discomfort involved, so you’ll feel okay ~ we’ll be thinking of you, all the best!!

[Ski]

in reply to: Symptoms back after 2 years in remission :( #1063937

Just one comment re salmon ~ we’ve been told that there is no seafood that contains enough iodine to "throw off" your thyroid hormone levels except kelp/seaweed.

If you adore salmon, I know of no reason to avoid it. If you’ve eaten it and felt awful afterwards, that’s one thing, and may be unique just to you, but as far as I understand, there’s no need to remove it from your diet.

[Ski]

in reply to: I Need More Conference Info Please #1063868

The conference is typically two full days of presentations (Friday and Saturday), with an "early arrival" dinner/reception Thursday, and a Q&A with the doctors (very casual) before everyone heads home Sunday. It’s certainly possible to attend just one day ~ any time there will be informative, I guarantee it! I’m not sure there’s a separate price to attend just for one day though. I hope you can join us!

[Ski]

in reply to: joint pain #1064009

One other possibility for the root cause of joint pain can be the muscle wasting from hyperthyroidism ~ weakened muscles can weaken the support for the joints, and that causes pain because of things being misaligned. Best to talk with a myriad of professionals until someone is able to define your issues and help you resolve them, don’t give up!

[Ski]

in reply to: RAI vs Surgery vs Meds #1063976

Just wanted to jump in with a quick note: T3 levels are very volatile ~ they can change hourly, depending on our need for thyroid hormone ~ so they are not typically the most valuable results on the lab sheet. A chronically high or low T3 level while T4/TSH levels are normal is something of concern (and, I should mention, likely not a result of Graves’), but dosing and treatment decisions are not best made by watching T3 levels.

[Ski]

in reply to: RAI vs Surgery vs Meds #1063965

Hello, and welcome!

Sounds like you’ve got quite a bit of info already, and that’s a good thing.

I don’t have a lot of time right now, but I wanted to make sure your post was approved so you can get responses, and I also have a couple of very quick points to make.

If you are allergic to methimazole, it can be a cumulative and ever-worsening thing, which can end (in the most severe cases) in anaphylactic shock, so it is nothing to mess with. Some people do have allergic reactions that lessen over time, and Benadryl taken sparingly along with lowering the dose can resolve it. Others have far worse reactions and simply must not be on the medication. There is a second ATD, I’m sure you’re aware (PTU), which has of late become less attractive for doctors to prescribe because of the higher rates of liver failure. BOTH methimazole and PTU are capable of causing liver failure (that’s why doctors check liver enzymes regularly), but PTU seems to have a higher risk. Even so, if you are interested in pursuing it, you may be able to take PTU in order to get your thyroid hormone levels down and begin to heal.

There is absolutely *no* proof that RAI causes (or can cause) future thyroid cancer, and in fact it doesn’t make much sense ~ consider that the goal of RAI is to destroy all thyroid tissue. How could you end up with thyroid cancer, if you have no thyroid? RAI has been used for more than 60 years to treat Graves’ Disease, and patients have been carefully studied, without any findings of increased rates of cancer, over the general rate in the overall population. That said, there are plenty of sites out there who revel in passing along just such information, without the actual science to back it up. I know there are people who simply, viscerally, do not like the idea of RAI, and they will say anything, even to the extent of lying, to keep people from using it for treatment.

All that said, your treatment decision is YOURS. I chose RAI for myself, it worked, I am healthy and thriving now. I took some real heat from family members who felt, viscerally, that they would not prefer that treatment. It was not their body, it was not their illness, and they didn’t have any right to make my decision for me. (By the way, same goes for your doctor ~ their advice, experience and opinion are definitely appreciated, but they are not the "boss of us.")

I’ve got to run now, but I know you’ll get lots of good input. Strength, my new friend. ” title=”Wink” /> You’ll get healthy, I know it.

[Ski]

in reply to: Graves’ Conference discount extended to 9/29 #1064020

If you’re on the fence about attending, please know that these are informative and helpful for patients at every stage of treatment ~ you will be glad you joined us!

[Ski]

in reply to: Recurring Graves Disease? / Chronic Pain #1064023

Hello John, and welcome,

I echo all that Kimberly has said, and I just wanted to add a comment.

Your chronic pain may well have contributed to the recurrence of GD. Remission is, by definition, a temporary condition, and it is not surprising to see a patient come out of remission. Stress of any kind floods the system with adrenaline, which stimulates antibodies, and in MOST cases that’s no problem, but with autoimmune conditions, patients can see escalating symptoms during this time.

The fact that your sibling and your parent are RAI patients, and unsatisfied, doesn’t necessarily mean the RAI itself is the "problem." It may be that they have never had a physician who was willing to dial into their perfect thyroid hormone POINT on the scale, and that could mean they are "slightly off" of where their levels should be in order for them to feel truly well. We are all different in that regard, and the normal range is so large simply because there are people at each point along the range who report feeling "fine," so we can’t say that any one point is better than another for the entire population, it requires good care by a physician to find that perfect point for us. In addition to that, once we have begun thyroid hormone replacement and found ourselves in the normal range (even found our normal point), life throws curveballs at us by "revising" our need for thyroid hormone replacement for various reasons. Our age, weight, activity level, hormone status, ALL of these things can change our status and we need to revisit our dosage in order to return to full health. We recommend testing at least annually to catch these types of changes.

In the end, the roller coaster effect of finding yourself hyper/hypo/normal/hyper/hypo/normal can be far more damaging than anything else. This is a good time to evaluate your treatment options and decide what’s best for you, in your current condition. It’s fine to take ATDs to get your levels down so you can think (pay careful attention to the side effects Kimberly spoke about ~ even if you’ve taken ATDs once and *not* experienced those side effects, it can happen the second time), but make sure you evaluate carefully all three options. It may be that you’d have an easier time going forward if you were "working from zero" to replace thyroid hormone, rather than trying to slow the flow with ATDs. UP TO YOU, though, remember that. Your doctor has the right to give you input, but the decision is all yours, absent other blocks to using a certain treatment (such as a hemophiliac wanting surgery ~ that wouldn’t fly).

[Ski]

in reply to: Possible remission signs on ATD treatment #1064070

That’s what I’ve heard too ~ antibody levels seem to be capricious and they don’t give us information on how sick we are or how quickly we can get well, either with GD or TED. Their existence has just been the "final say" in terms of our diagnosis, if there were any question. As of last October’s conference, we heard that there was LIMITED information indicating we MAY have a better shot at remission if our antibody levels are low when we stop taking ATDs. Not anything that’s been tested/reported officially, but it’s a good thing to know, just in case.

[Ski]

in reply to: Possible remission signs on ATD treatment #1064068

Remember that the best chance for success occurs after you’ve been taking ATDs for at least one year (up to two years), and after your levels have remained stable for some period of time. In addition, for your BEST possible shot at attaining a real remission (meaning a period of one year or more of normal thyroid hormone levels without taking ATDs or replacement hormone), check your antibody levels before you stop taking the ATDs.

MOST people have success with treatment on ATDs. A smaller percentage actually achieve remission, but keep in mind that remission is, by definition, a temporary state. No one should feel "less than" because they didn’t achieve full remission, or if their body comes out of it and they relapse.

[Ski]

in reply to: STRABISMUS (Eye Muscle) SURGERY, ANYONE HAD IT LATELY? #1065262

I haven’t done this surgery, but I understand that it is helpful to have a patient who can describe what they see, while they are doing these kinds of surgeries, so they like to have the patient conscious, but they give you that "forget-about-it" medication so you don’t remember it afterward.

[Ski]

in reply to: DOWN #1064074

YOU WILL GET THERE!! Hang in, we know how you feel ~ take it easy wherever you can, let others help you, know that this will be behind you in time! It may take more time than you’d like (it always does, we want to feel better yesterday, don’t we?), but you will cross the bridge and return to health, I PROMISE. ” title=”Very Happy” />

[Ski]

in reply to: endo reducing synthroid again #1064081

If you end up on NO synthroid and you are still getting hyperthyroid lab results, then your doctor may want to discuss another RAI. You would also have the option for either of the other treatment choices at that point. You are NOT likely to be in that position, FYI. If you went hypo once without synthroid, it’s not likely that any remaining tissue is functioning so well that you’d end up hyper again without taking replacement. Another consideration is that the antibody action itself destroys thyroid tissue, so even if some remains active, it is being bombarded and destroyed that way, and everything will probably work together to ensure total ablation, eventually.

I’m glad you have seen an ophthalmologist about your eye symptoms, that’s the right source for info!

[Ski]

in reply to: RAI vs. thyroidectomy #1064427

I think the doctor may be referring to the fact that, as long as you retain your thyroid, any illness that requires your immune system to work harder will also have the effect of stimulating the Graves’ antibodies, which would amplify your symptoms for at least a brief period of time. There are some meds you can take to be more comfortable if that should happen, but if you can’t take ATDs, then you can’t correct the thyroid hormone imbalance, and that could be dangerous.

If you have surgery or RAI and no longer have a functioning thyroid, that could not happen. The antibodies may be stimulated, but they’d have nothing to affect.

If there is no way you can take ATDs, then you really only have the choice of RAI or surgery to return yourself to health. Make yourself a pro/con list to help you decide between the two ~ this can be an extremely emotional decision, especially when your levels are already out of whack, so first give yourself a break from thinking about all of this. Go take a walk and soak in some sunshine or look at something beautiful or watch something that makes you laugh. Then sit down and make your list. You may already have some idea, as you make the list, what your preference would be. Then sleep on it. I’ll bet by morning you’ve come to your decision.

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