[Ski]

in reply to: Hypo post RAI #1062584

This long after RAI, the dumping should not be an issue, at least under the strict definition used during the first couple of weeks after RAI.

When you get a TSH level, you’re actually seeing a "running average" figure that spans your blood levels for at least several weeks ~ that’s why it takes so long to get a good reading after adjusting a dose of replacement ~ so a very high TSH is usually a very good indicator of where you stand right now.

Once you find a good level of replacement hormone, it is possible for your needs to change, due to various factors (age, weight, activity level, for instance), so continuing blood tests are always a good idea. Still, once we’ve hit a good level for us, typically then it’s only recommended that we get tested once a year, unless we’re feeling dramatic symptoms. It is not likely that your levels would ever spike out-of-control again, with the limited thyroid tissue (if any) remaining in your body after those two RAI treatments.

One more thing to point out ~ when we change a dose level, we can experience a couple of weeks where we feel something of a teeter-totter, up one minute and down the next, but after the first few weeks on a new dose, TYPICALLY things settle down and it’s easier to tell whether you REALLY feel up or down, in terms of thyroid hormone levels. Even then, blood tests are the gold standard for figuring out what is really going on.

While things are fluctuating, it might be wise to ask for a T4 level as well, because it’s a more immediate figure and may keep you from going too far afield following the TSH level while it’s still "settling in."

[Ski]

in reply to: Newly Diagnosed With Graves Disease #1062593

Hi there,

I’m certainly glad you found us ~ what a road you’ve been on already! The good news is that I am sure you will find a way to stable, normal thyroid hormone levels. The bad news is that it’s pretty normal that you still feel fairly rotten. This can take some real time to resolve, and the fact that you’re not feeling completely better right now doesn’t mean your medication isn’t working. It means that your body is finally under proper care, and you’re heading in the right direction (or at least someone is watching!), but you have been under an onslaught ~ hyperthyroidism is VERY hard on your body, on every cell in every body system, and you need several events to happen before you can start to look to being really "well." First, you need to figure out how to keep your levels stable. Second, you need to find the point at which you feel best. At that point, your body will START to heal, because only then will it be healthy at its core, and only then can it devote resources to healing the damage that the hyperthyroidism has caused.

So at this point it’s more a journey of small improvements ~ but do look for them, and do celebrate them, because anything is better than having remained ill.

Once again, I’m glad you’re here! Find a way to keep your spirits up, whatever it takes, it’s worth it! Take extra long hot baths, or watch funny movies all night long, or spend time reading/painting/baking, whatever YOUR "zen moment" is, take advantage as often as possible, and enjoy it to your very soul. You deserve it! ” title=”Very Happy” />

[Ski]

in reply to: important question #1062591

The replacement gives us back T4, the inactive form of thyroid hormone, and our body converts to T3 (active form) as needed, so the mechanism is the same as before, for the most part, once we are well regulated.

[Ski]

in reply to: Total Thyroidectomy coming soon… #1062618

The decision between RAI and surgery is a tough one, and in the end it really comes down to some level of emotional comfort with one or the other. Post-RAI restrictions are based on two different things that go on after RAI. In the first 48 hours, your body is flushing out the RAI that was NOT taken up into the thyroid. For instance, if your scan/uptake showed that your thyroid took up 80% of that substance, you can say that it will take up 80% of the treatment RAI. That means 20% of the treatment RAI is flushed out of your body. That happens in the first 48 hours, and it requires more strict separation from others, especially your children. It is water-soluble, so it ends up being flushed out in our fluid waste streams (sweat, saliva, urine), and so we need to keep others from any potential contact with those substances for those 48 hours.

After the first 48 hours, then it’s the radiation remaining in the thyroid (at your neck) that you need to keep others from experiencing. Obviously it’s not "deadly" exposure, as we are sitting here with our necks attached the whole time. The issue is that radiation is a cumulative lifetime thing ~ you just want to limit unnecessary exposure during your lifetime ~ so keeping your children from being exposed is a precaution for their lives overall. It’s not that something will happen if you "slip" during your recovery, just an abundance of caution where we can exercise it. The RAI within the thyroid breaks down over time ~ it has a half-life of 8 days, so every 8 days after your initial dose, the radiation remaining in your thyroid is cut in half. You can do your own calculations, based on the dose a doctor recommends, to see how long it’d be until that’s a negligible amount (we actually have SOME radiation in our body naturally, just so you know that). In the interim, it’s a matter of keeping your distance, or keeping close-up contact brief, and as the half-life cycles pass, you can relax those distance/time calculations.

Of course, surgery carries risk as well, but can be equally effective, and has the advantage that you KNOW when your body no longer had a functioning thyroid. The RAI takes about six weeks to do most of the damage to the thyroid, but can take up to six months to have all the effect possible (if the initial dose isn’t large enough to do it early on). The newest conventional wisdom is that every patient should get an ablative dose, to keep that time period short ~ if you are truly interested in pursuing RAI, talk with your doctor and also the doctor they would recommend in the radiology department to find out their recommendation for your dose and their reasoning for it. That’s one step I missed, and I regretted it. Communication is ALWAYS better than no communication.

I hope this didn’t just add to your confusion. ” title=”Very Happy” />

[Ski]

in reply to: Almost remission #1062696

First, I hope you get the results you want! Second, it sounds as if you are well versed in all things Graves’, so the only thing I would think you need to ask your doctor is about their recommendation going forward ~ do they recommend coming in every few months for blood draws, or waiting until you feel "off," or some other timeline? Remission can be longterm, but of course it could end and your hyperthyroid symptoms could return, so it would be important to know what your doctor recommends in the future to make sure you remain as healthy as possible.

I’m so glad you’ve made it this far, congratulations! It would appear that you’re on the right track. ” title=”Very Happy” />

Ah, but having said that (and re-read it just now) ~ please don’t consider it a personal failing if your remission ends. It happens to many, and it doesn’t mean you’ve done anything wrong.

[Ski]

in reply to: DRIVING AND TED #1063052

Once you’ve fully reached the cold phase of TED, surgery can be done safely without risk of further "hot phase" worsening. Cold phase diagnosis is important, and is typically made in hindsight ~ in other words, if six months have passed and your eyes have remained exactly the same, you can say at that point that six months ago, you reached the cold phase.

You’re right, it’s risky to have surgery when you’re in the "hot phase" and experiencing rapid and frequent changes in the conditions of your eyes, it can trigger further activity ~ and yet, if your optic nerve is threatened by the pressure, they will do the surgery in the hot phase in order to save your sight. So as long as you do surgery at the right point, it can be corrective.

During the hot phase only, it’s possible to keep the overall changes to a minimum with oral steroids and directed radiation, but of course you’d want to have a frank conversation with the doctor over the risks of those.

Some of the eye surgeons who have spoken at our conferences recently say that these can provide such an improved experience overall (they limit the worst of the changes, and so preserve your appearance afterward), that using them during the hot phase can be a very good thing. Using both together can mean you have to use less of each in order to gain the same improvement, lessening the risks.

There’s usually a period of improvement after the hot phase ends and before the cold phase begins, and during that time it’s just a "wait and see" approach ~ the oral steroids/directed radiation have not shown themselves to be particularly effective at this point, and surgery would not be recommended ~ so it’s another one of those tough times.

But again, at the right time (full, cold phase confirmed), surgery provides amazing results that last.

[Ski]

in reply to: Physical and Pyschological effects of GD/TED #1062710

If your levels have been stable for that many years and you still find that you are weak and unable to function normally, you should talk with your doctor about adjusting your replacement hormone dose (or ATD dose, where are you with treatment again?). By this time, you ought to have had enough time to heal. If you don’t feel well, go to your doctor and tell them you need to figure this out ~ if they don’t believe it’s thyroid-related, fine, but they should keep looking until they find out what’s wrong, and figure out how to fix it for you. That’s their job. If you keep a symptom diary, you may be able to have a productive consultation with the doctor and figure out which way to tweak your medications in order to relieve the symptoms you’re having.

As far as the eye surgeries, believe me, I know people who have gone through them, and the results are staggering. Your quality of life increases almost immediately. Our conference speakers have mentioned that the emotional aspects of TED are definitely the worst thing about it ~ patients report more trauma over it than cancer patients do over the thought of losing their lives. Correcting your eyes is NOT about being vain, it’s about getting well again, in your whole body.

The truth is that our friends and family may be interested to know every detail when we must cancel plans with them, but most of the time (I’ve found) the details to our specific ailment are not particularly interesting to them. Some of those in your life may be different, and for those, I would give the most basic information at first, and let them lead the complexity of the conversation after that.

I understand completely wanting to go as far as you can go, do everything you can do ~ and you are perfectly welcome to grab life by the tender parts and GO FOR IT. You know, though, that can affect you badly, and can lead to such a bad time that you must cancel other things that you want to participate in. My suggestion is only to craft, very carefully, the things you choose. If you want to take a trip to Europe, just make sure to build in a couple of days where you can do almost nothing, so you enjoy your entire trip. I’m not saying live like a hermit, I’m saying CHOOSE what you want to do. Don’t think you can do everything, because the truth is that you can’t. Try to make some peace with that ~ feel free to push the boundaries, but be realistic, for your own sake.

We have many, many people here who have been where you are. We had a speaker at a conference that told of his journey up Everest, after his successful GD treatment. He acknowledged that it was the hardest thing he’d ever done, the most involved training regimen he ever went through (and he was a regular mountain climber), even more so than it would’ve been, "just" for Everest, before his illness ~ but he did it, it was worth it, and I’m sure you can choose your "Everest" to climb too.

I suppose the answer is, just do it! If you want to do it, do it! If you need to cancel anything along the way or in connection to that, then do that too, and decide within yourself not to feel "less than." We all have limits, for different reasons, and it has to become one of those things you have the wisdom to know that you can’t change. Finding peace is probably the most important thing you can do. Yoga can help with that, and so can lots of other things ~ when you are feeling particularly awful, what do you like to do? Watch a funny movie, take a hot bath? Well, just make sure you build in time for those things regularly, and in the end I think you’ll be successful in having a full life that you enjoy.

[Ski]

in reply to: Just diagnosed with Graves. #1062699

Hi Julie,

I’m so glad you found us! Unfortunately, your path to diagnosis is fairly common ~ Graves’ is relatively rare, and the symptoms mimic so many other common maladies, so our doctors tend to presume it’s the more common thing first, and only later on do they realize this is something else. I’m sorry you had to wait so long, but glad you’ve come to the correct diagnosis at last!

We’ve had some other people here that have gained weight instead of lost it, and I would agree, that completely SUCKS. ” title=”Very Happy” /> Still, the result is the same in the end ~ normalizing and stabilizing your thyroid hormone levels will help you bring your weight back where you feel more normal. For now, you are VERY ILL, please do not minimize what’s going on in your body. You say that you know your limits, but keep in mind that as long as you are not treated in any way, you risk a lot of trouble, especially when you’re very active.

You can take ATDs and see how they work for you at first, it’s a good way to bring your levels down and begin the healing, and also to allow you to get your head back, if you know what I mean. It’s all so disconcerting, and being ill on top of it just doesn’t help us navigate through the process of treatment and healing.

You WILL get there ~ arm yourself with all the information you can get, knowledge is POWER. Keep in mind that it will take time. Longer than you’d like, I’m sure (we all want to be well yesterday), but you WILL reach health again. Promise. ” title=”Very Happy” />

[Ski]

in reply to: Physical and Pyschological effects of GD/TED #1062708

You’ve been through a lot, that’s true, but first let me say that you will ultimately find relief, and you will someday return to something that feels like normal. It takes time, but the healing does come. When thyroid hormone levels normalize and remain stable, our body only then begins to heal, so it takes a LOT longer than anyone wants it to, but there it is. As for the eye issues, once you’ve come into the cold phase, you can explore surgical correction of the condition that remains ~ and it is not out of vanity, it is not cosmetic surgery. It’s treatment.

As for what to tell family and friends while you’re feeling crummy ~ I think we’ve all struggled with this, at some level. It seems as if Graves’ hits only the Type A People Who Try To Do All Things For Everyone. I completely understand!

One thing you can do is consciously schedule less than you used to ~ and here’s the really important part: do more of the things that heal you and bring you joy, and do less of the things that drain you and do not bring you any satisfaction. If you stick with those guidelines, then you can usually conserve your energy and maintain the schedule you’ve made for yourself without having to back out of things at the last minute. It may mean you see people less frequently, it may mean you can’t attend every function that comes up. You must forgive yourself for that, because it is essential for your own health, both physically and emotionally. Think of yourself as someone in recovery from a horrible onslaught (because that’s the truth), and understand that you need a lot of TLC right now to come through intact.

Does that help?

[Ski]

in reply to: After Rai and methimazole #1062744

Hi there,

I am not exactly sure when your doctor will recommend stopping the meds ~ I was never prescribed blood thinners, so that’d be especially interesting to find out, if you don’t mind checking back in to let us know.

Typically it takes at least six weeks for the body to flush out excess thyroid hormone that existed at the time of RAI treatment, so I would presume that you’ll be talking about this with your doctor at your follow up appointment. If you are feeling absolutely horrid at any point between now and then, I would suggest calling the office to let them know how you’re feeling, and to see what can be done before you visit the doctor again.

Glad you’re feeling better, if only just a little so far! ” title=”Very Happy” />

[Ski]

in reply to: Wish me luck #1062751

Good luck!! If you haven’t already committed to discontinuing the meds, you may want to get an antibody level blood test first ~ there is some evidence that patients with low antibody levels have a better chance of achieving remission when ATDs are withdrawn.

We’re pulling for you!!

[Ski]

in reply to: My Journey #1062758

You certainly have come a long way, what a great success story! Thanks for sharing!

Just one clarification I’d like to make ~ being diagnosed with Type 1 Diabetes was NOT a "direct result" of having Graves’. It’s true that those of us with one autoimmune disease have a slightly higher chance of ending up with a second, but it does not mean that one causes the other. All it means is that our body has contracted two different autoimmune diseases due to the same root cause, a small genetic defect. For the reason WHY our body ends up with one or another of the autoimmune diseases, we must all stay tuned, because the science is still out on that one.

[Ski]

in reply to: EYELID SURGERY POST OP #1062809

Shirley,

I’ve been "away" and didn’t see your surgery date had come and gone ~ so glad you seem to be doing well afterward, please send an update! ” title=”Very Happy” />

[Ski]

in reply to: Do you understand me? #1062789

I’m not sure anyone can say you had Graves’ before they diagnosed you ~ it’s far more common to occur in adulthood, so unless you had some tests run that they can point to, or you constantly complained of Graves’-like symptoms, I’m not sure how much credibility I’d put in any statement that you were "undiagnosed" your whole life. Graves’ isn’t something that works that way, you’re not "born" with it. You’re born with a small genetic defect (they’ve found it) that makes you more likely to have an autoimmune disease of some type. Some people with this defect live their entire lives never having one. Others get one. Now THAT is the fun in the research right now. Why do we get an autoimmune disease? And why this one? No good answers for those. Yet.

[Ski]

in reply to: My story, issues and questions. #1062779

I haven’t heard people specifically refer to a difference in how they react to alcohol, especially this long after surgery, so I just don’t know what to say about that. We typically notice the biggest changes when our levels are out of range. Thyroid hormone does affect the way we process things within our body, so I suppose there’s the potential for that to be different now, except that you’re having varying experiences, so that confuses things.

The other issue, as you may guess, doesn’t come up much ~ I’m sure it was a real leap for you to divulge. All I can say is that I don’t recall having seen much on this topic (and I’ve been here a LONG time, more than 10 years now). Again, this long after surgery, things really ought to be settling into some level of constancy, if not completely "normal," whatever that means, but everyone’s different. I kind of understand what you’re talking about, and I do recall some times when I felt similarly, but I never considered it having any particular connection to my thyroid hormone levels. If I were in a particular phase of treatment, I probably would have considered it, so it’s hard to say, but my completely uneducated GUESS is that they’re unrelated. If it continues being an issue, you should definitely go see a specialist. It can be connected to blockages in blood flow, so you’d want to make sure that’s not an issue. I think changes in blood pressure can also create the same effect, so again, you’d want to make sure all is well on that front, if your difficulties continue.

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