[Ski]

in reply to: incurable but entirely treatable #1074513

Exactly right, elf. The point is that we are never cured of Graves’, because the antibodies do not go away after any of the treatments.

Right now we know of three components (thyroid, eye, skin), but the possibility exists that there are even more components we just haven’t quantified yet. The thyroid condition is the only life-threatening component, so once that is under control, the most destructive part of the disease is over with. The eye disease and skin condition can come along at any time, so we need to be aware of those, just in case.

[Ski]

in reply to: Update with questions????? #1075060

One note to kimmie: NO, we do not all have TSH levels in the .001 range any more. Only hyperthyroid patients have TSH levels that low (well, and perhaps with some other conditions there may be a measurement like this, but let’s stick with the Graves’ patients for clarity’s sake right now…).

Once we go hypothyroid, our TSH rises (it has an inverse relationship with our thyroid hormone levels). When we are on replacement hormone (or effectively managed on ATDs), our TSH levels should be inside the normal range, hopefully at OUR normal point.

We’ve all HAD TSH levels in the .001 range, but we are treated specifically to correct that.

[Ski]

in reply to: Swollen Thyroid… #1074519

Your thyroid swells when your thyroid levels are out of balance, in either direction (hypo OR hyper), and the swelling goes down as the thyroid levels come back to the normal range.

The uptake results for Graves’ are exactly as you describe ~ the entire thyroid takes up the iodine, but no nodules or unusual patterns, just across the thyroid AND a high percentage of uptake. A normal thyroid would have far less "lit up," and the uptake would be a much smaller number. Nodules are typically NOT a part of Graves’ Disease.

I hope that helps!

[Ski]

in reply to: How do you to find a great endo? #1074733

Congratulations! How long should the endo spend? Well, a good one would sit down and cover your entire history, which should take 30-45 minutes, but honestly, not many have that kind of time to spare. I’ve had two endos I loved dearly, and one could carve out about 20 minutes on a good day (an hour late, mind you), while the other literally scheduled my first appointment at the end of his business day so he could relax and go over everything at length. As I say, I loved them BOTH, but one devoted much more time to finding out about me. They both treated me effectively, and as long as I was doing my research independently, I didn’t really NEED a great deal of time with either. As a matter of fact, the one who spent a great deal of time was one I met after the bulk of my treatment was finished, and I didn’t tell him how much I already knew. I took a great deal of comfort in hearing him say the things I already knew to be true.

Your job is to bring all the questions you have written down on paper, and bring a pen to make notes while you’re getting the answers. You may even want to enlist a friend to attend the appointment with you, because a second set of eyes and ears is always valuable.

Your appointment is pretty far off, and PTU can act rapidly to bring your levels down, so you should probably coordinate with your primary care physician to have labs done again about a week (or less) before the endo appointment. It’ll be helpful.

Good luck!

[Ski]

in reply to: low body temperature #1074523

I’m not sure whether low body temperature can be related to thyroid function ~ I know some people generally "run low" in body temperature (one of my children does), but is this a new phenomenon with you? I’m not sure how far away from 98.6 you have to be before doctors are concerned.

Now, as far as you thinking you are hypothyroid and your doctor saying you are not ~ the range of normal is wide, and people have their own personal normal points at many places along the continuum. Make sure you are getting copies of all of your test results, so you can see where you fall. TSH is a "reverse" indicator of thyroid hormone, because it is a hormone excreted in response to pituitary readings of your thyroid hormone levels. Thus, when TSH is low, the T4 levels should be high, and vice versa. Not all doctors test T4 (TSH is considered much more reliable), which is why I mention this reverse relationship. If you think you are hypo, and when you look at your TSH test results you see that they are at the higher end of the normal range, the test result may be saying that this level is hypo FOR YOU. Ask your doctor if they’re willing to shift your replacement hormone dose up one measurement to see if you feel better and your levels still stay in the normal range. It’s going to take about six weeks for your body to fully metabolize the change in dose and for your TSH tests to tell you accurately the reaction your body is having to the new dose. In the meantime, you may feel a little hyper one day, a little hypo the next. That’s very normal. Wait the six weeks and see where your levels stand, and how you feel. In the meantime, make yourself a "symptom diary" (we have a sample available as a bulletin, I believe) and show it to your doctor at your next appointment. It is much easier to speak with authority to your doctor if you have data to back you up (they love that stuff!). ” title=”Very Happy” />

If you go through this process and the new dose makes you hyperthyroid (it can happen), then it may be possible to shift your dose by "half" a measurement by taking one dose one day, another dose the next. The effective average dose is between the two, and T4 replacement is also averaged in your bloodstream over time, so it wouldn’t mean that you’d feel hyper on the day you take the higher dose and hypo on the other days. It’d all even out.

If you go through this process and you don’t notice any difference in how you’re feeling, it’s time to ask your doctor where you SHOULD go for help. We tend to get into a trap where we think everything is related to our thyroid, and sometimes it’s just not. The doctors get into a habit of just looking at the test results and saying "it’s not your thyroid," patting the patient on the head and wishing you a good day. They need to remember that what’s going on is NOT normal and needs treatment one way or another to help you feel well. If the answer is for the endo to send you back to your general practitioner, so be it, but an acknowledgement of our issues and need for treatment is important.

[Ski]

in reply to: Emotions- Woman #1074534

You sure have been through the wringer ~ you were wise to let yourself get it out, I’m sure that’ll help you turn a corner. Just being able to let it out, safely, is important. Everything you’ve been going through is so very stressful.

As far as finding counseling, you may have some kind of federal or state program that would allow you at least partial access to a therapist, so see what you can find out. In the meantime, be your own best friend ~ it’s really important that you find some time for YOU in the midst of all this chaos. You’ve already shown that you know what to do and how to make it happen when the chips are down. Honor yourself for that. Give yourself an ENORMOUS pat on the back. As we’ve mentioned recently, think of yourself as a Graves’ Warrior ~ it helps, words make a difference.

The punching bag may help you on MANY levels. ” title=”Very Happy” />

Please stick around ~ we can be one of your cheapest sources of support and advice, and we’ve been there so you can trust us when we say you WILL get through this.

[Ski]

in reply to: finding it hard to cope #1074687

If her hands still shake, it seems likely that her thyroid hormone levels are not correct. Once she arrives at, and maintains, normal thyroid hormone levels, she will BEGIN to heal. It would seem to make sense for you to attend her doctor’s appointments right now, because she needs an advocate, she needs someone who is paying attention (she may not be paying a lot of attention at this moment), and she needs someone who can help her manage through the day. You’re doing a lot already, I realize that, but the way for her health to return is to manage her levels correctly. Doctors seem to have a pretty narrow view ~ if your levels fall within the normal range, you’re normal. The range is ENORMOUS, and what is normal for me is not necessarily normal for anyone within 500 miles of me. A year out, she should be much closer to normal than your description makes her out to be. We take a while to return, but usually once we begin treatment we get at least a little better all the time.

Typically abdominal pain is not associated with GD, and it’s good that the doctor is still evaluating the cause (beyond celiac). I did have one bout with completely unexplained abdominal pain following my RAI, and it was awful. It alleviated within about a week, for me, but again, no one ever could explain where it came from, so I can’t even say it’s related to GD, and I certainly can’t relate it to what your daughter is going through.

I wish you luck in this process. Please do come back and let us know how your daughter’s healing is going.

[Ski]

in reply to: Emotions- Woman #1074531

In a word, YES!! ” title=”Very Happy” />

I know how it feels, and it is NO fun. I used to tell people it felt like a train, and there was nothing I could do to stop the snarling monster I became.

One of our facilitators, Jake, used to tell a story that I loved ~ he would find himself in the middle of one of these tirades, he would be yelling at his family members, and in the middle of the tirade he would begin to yell "I LOVE YOU! I DON’T WANT TO YELL AT YOU!" I used that myself a few times. It really does break the tension and allow people around you to realize what’s going on ~ it is TRULY chemical sometimes.

[Ski]

in reply to: Excellerated Graves Disease? #1074552

A lot of patients have the thyroid disease and eye disease occur near the same time, that’s actually the most common course. The typical period of time for the entire curve of Thyroid Eye Disease is 1-3 years (smokers have a higher risk for longer periods of disease), but not a lot of patients get the very worst of the eye symptoms. There has been one study that showed a small percentage of patients (15-16%) who experienced accelerated TED symptoms for a short period after RAI, but there has also been at least one subsequent study that showed no such relationship, so it’s hard to say whether that had anything to do with it. When I had my RAI, I had a brief period where my eyes felt more gritty and uncomfortable, but it didn’t rise to the level of needing prednisone. It all resolved within about six months, but I still had other eye changes that took more time to resolve.

Make sure you’re in touch with an ophthalmologist as you go through the process ~ they may not have a great deal of treatments immediately (lots of TED is "wait and see"), but they can monitor your changes & help you through the process.

[Ski]

in reply to: Surgery, Change of heart :( #1074558

Sounds like you need a break from deciding, Hopeful. ” title=”Wink” />

Right now I’d say you have a little time to think, and you also have some time to release the need to decide for a little bit. Do something that gets your mind completely off this, go to a special place, read in your favorite chair, whatever it is for you, but get away for a little bit and give your head some time to relax.

The reason you’d still want to have PTU after RAI is that it takes a while for the RAI to do all the damage it needs to do in order to make your levels normal, so in the meantime, you will need to maintain your levels with PTU. Once you no longer need it, you’ll begin to go hypo and your doctor will tell you to stop taking it. After surgery, believe it or not, our body can take up to six weeks to flush out the excess thyroid hormone, so PTU would still be useful for that period. Again, you will be having frequent blood tests to determine your levels (much more frequent than you’ve needed before OR will likely need again), but you will also be keeping careful track of your symptoms, so you may have a hint that you’re going hypo before you confirm that with blood tests.

It’ll be smartest to keep a close eye on your symptoms so that you get a good head start on managing the replacement dose after going hypothyroid, because (as with everything else about Graves’) that process can be time consuming, so if you get a jump on it, you can hopefully shorten the overall period of time it takes.

Look for small improvements as you go through the process. Remember that you’ve been beaten up pretty effectively, and it’s been across all your body systems. It will all recover, but it’s a lot for your body to accomplish, and it will probably go slower than you’d like it to. Hang in. You’ll get there.

[Ski]

in reply to: Update with questions????? #1075055

Many people swear by Armour, for the very reasons you state. The problem is that T3 is a powerful form of thyroid hormone, and for some people, a supplement of T3 is too much for them over time, so it is counterproductive in the end. There used to be a question about its ability to provide a consistent dose, but that has been solved with newer technology. It’s certainly worth a try, but make sure you are looking at your symptoms objectively so you can switch if necessary. (There is also a synthetic T3 replacement that can be taken ~ typically people who have trouble converting T4 to T3, or those with liver damage, benefit from T3, but again, it’s very powerful, and patients should be followed closely.)

There have been quite a few posts discussing this topic ~ at least one on this new board, and I believe there were several on the old board as well. A search using the word "Armour" should lead to a mother lode. ” title=”Very Happy” />

[Ski]

in reply to: Vision testing #1074575

You’re right, your ophthalmologist is the one who should give you the "okay" to go forward with any corrective surgery. That’s also your first resource for a reference to a good surgeon ~ if the ophthalmologist you’re currently seeing is not also an oculoplastic surgeon. Some are.

If you are only now in what you refer to as the "hot" phase, it may be a while before that surgery would be recommended. The surgeons who have spoken to us at conferences pretty routinely say there is a natural order of surgeries, should you need them, and that is bone first, next muscle (eye muscle corrections to resolve double vision) and last would be the skin surrounding the eyes (lids, bags). If you continue to have mild symptoms and never experience any proptosis (bulging) or double vision, I would presume that the doctor would give the okay for surgery on the bags earlier, but I don’t have any experience with that, so I can’t say for sure. The most important thing to consider is that the symptoms may reverse at some point, and so any surgery you undertake too early in the process can cause problems at that point.

It’s the hardest thing to deal with, emotionally ~ the change in our appearance, how we present ourselves to the world. I realize you want to correct it as quickly as possible. Do ask the eye doctor ~ that’s your best resource to know when and if you want to take that step.

[Ski]

in reply to: Nearly 3 yrs Off ADTs & Still in Remission! #1074586

Thanks so much for checking in! ” title=”Very Happy” /> I’m glad you’re feeling well!

[Ski]

in reply to: eye problems, redness and itching #1074578

Hi Torri,

It’s possible that what you’re experiencing is early signs of Thyroid Eye Disease (TED), but there is also another eye condition (I’m not sure of the name) that comes with more of the mucus you mention. I’m not sure if it’s related to TED, but I do know that I’ve met Graves’ patients who have gone through it. You’re probably best served by finding an ophthalmologist and figuring it out with them, but in the meantime I can tell you a few things that may help.

First, if your eyes are not completely closing at night, that can cause redness in the morning, and it can be extremely damaging to your corneas if they aren’t protected in some way. If you have anyone who can check for you, you should ask them to look at you while you are asleep and let you know whether part of your eye is exposed to the air. If not, the way to know for yourself is if the redness shows up in a clearly defined line across your eyes ~ if it does, there’s a good chance your eyes are NOT closing all the way.

Second, when we have Graves’ Disease, our tears become thinner, and it’s harder to maintain the moisture on our eyes. The way to combat this is with regular applications of artificial tears (NOT "get-the-red-out" drops). You should look for single-use applicators without preservatives. We typically need the drops often in order to maintain the comfort of our eyes, so the preservatives can prove irritating over time. Use the drops liberally ~ when working on the computer, every 30 minutes is not too often. Consider breezes, flourescent lights and computer screens as especially drying, and use the drops more frequently when you are exposed to these. We use the drops in something of a preventative way ~ the drops you use today will help you be more comfortable tomorrow. If you don’t use them until you are feeling uncomfortable, you can find yourself behind the curve and it can take longer to get relief.

Since your specific issue seems to be in the morning, you may want to invest in some thicker gel-like product for the eyes that you can put in just before you go to sleep. It can promote healing overnight ~ but you don’t want to use it if you intend to SEE, so make sure it’s immediately before you plan to sleep.

The ophthalmologist will be the best source for information about the specific issue you have right now, but hopefully these ideas will help until you get to that appointment. Let us know how it’s going!

[Ski]

in reply to: My news and question on aspartame? #1074580

Artificial sweetener shouldn’t have any effect on your thyroid hormone levels. The only thing I would caution is that sometimes artificial sweeteners can cause cravings, which pretty much defeat the purpose. If you’re looking to sweeten your tea or coffee, you may want to look into agave nectar. You don’t need much (it’s VERY sweet), so you end up with fewer calories than sugar, and it’s a natural substance.

[Author]

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