[Ski]

in reply to: Hi My levels have changed #1073804

You’re on the way! You want your TSH to rise, by the way. TSH is an inverse relationship to T4/T3, so when T4/T3 is too high, TSH will be too low, and vice versa. At this point, though, and for the next couple of months probably, the T4/T3 numbers are what you want to be looking at. TSH gives you a picture of a sort of "running average," and it can take a while to jumpstart after you’ve been hyper, so for now, look at your T4/T3 to know where you stand.

ALL the symptoms of hyperthyroidism take a while to subside. Take it easy, treat yourself with kid gloves right now.

[Ski]

in reply to: Anti-Thyroid Drugs #1073894

Graves’ thyroid disease and Thyroid Eye Disease are always separate ~ treatment for one does nothing to help or hurt the other (except for that possibility of "temporary worsening" of symptoms for a few months following RAI that I mentioned in my earlier post). Graves’ and TED do tend to happen together, but that relationship is yet another mystery that doctors are trying to unravel. They are absolutely separate diseases, but, as we learned at our conference, part of what is now being termed the "Graves’ Syndrome," which includes the thyroid disease, TED, and pretibial myxedema (nasty, itchy, orange-rind rash on the shins).

By the way, TED also occurs in people with Hashimoto’s Disease (a hyPOthyroid autoimmune condition) and in people with other thyroid conditions.

[Ski]

in reply to: To do RAI or not to do RAI…can I hear from those who have? #1073829

I just wanted to jump in and say I’m another RAI success story ~ the only thing I would change is that I would have a talk with the dosing doctor to make sure that we were on the same page, with complete ablation as the goal. Once I had a dose with that as the desired result, everything went fairly quickly, and one day, after starting the replacement meds (a few months out), I found myself actually skipping into the grocery store (no spring chicken, me!), and I knew I was on the road to real health as I knew it before.

Now I feel pretty much completely well, though I’m 12 years older than when this all began, so SOME amount of "less than" is to be expected.

TOTALLY off topic, I think we actually have an advantage, having a thyroid condition, because many people suffer tiny deficiencies in thyroid hormone levels as they age, but no one makes a big deal about it (or even notices, in many cases), and that can result in long term effects of subtle hyPOthyroidism which again, are taken for "just getting older." At least we’re on the road to finding our perfect level, we’ll notice when and if we leave it, and we’ll also know what to do to fix it.

[Ski]

in reply to: So Many Issues #1073810

We’ll be thinking of you, please do let us know how things are going (when you can!). Having so many people cooperating to find what’s best for your son is a wonderful thing. I’m glad you feel that you’ve made a good, balanced choice, that makes ALL the difference! I hope he’s feeling better, SOON.

[Ski]

in reply to: I’m new to this board and have questions #1073814

The effects on your hair and nails could easily be caused by the thyroid levels, though keep in mind that as your levels move into the normal range, they’re still moving, which is also interpreted by the body as an emergency state. The resources will come back to your hair and nails when the levels are stable, not just normal.

The jelly-like thigh muscles could easily be caused by the hyperthyroidism, and you could be just feeling now the effects of damage done earlier, so you don’t have to think it means you’re "getting worse," just that it’s now reached a point where it’s obvious what you’re feeling.

From what I understand, your antibody levels do not necessarily equate to "how sick you are," that is supposed to be absolutely measured by your thyroid hormone levels. That’s the level to watch. The fact that there are many antibodies may or may not mean that you’ll feel worse.

Even doctors who have had experience with GD patients have some misconceptions about our treatment, so that’s something to consider, but the bottom line is that you will be having a long relationship with this doctor, and if you have any reason to feel less than comfortable, it’s a good enough reason to locate one with whom you WILL feel comfortable. It doesn’t mean they’re not good doctors, they’re just not OUR best doctor.

[Ski]

in reply to: I’m new to this board and have questions #1073812

First, the future for any Graves’ patient who receives treatment is VERY bright. We get there. It happens slowly, but we get there.

Second, nodules are typically not a part of Graves’ Disease, so I can’t help out with that part of your question.

ATDs have about a 40% chance of providing remission, but they are typically effective in a higher percentage of patients. Let me explain. A patient must be able to discontinue the meds and continue with normal thyroid hormone levels for a period of time (months, at least) to say they have attained remission. That’s the 30% to 40% figure, and remission is typically attempted anywhere from 12-24 months after beginning ATD treatment.

Patients typically do respond to ATDs, and with proper monitoring, some can stay on a very tiny maintenance dose that keeps their thyroid hormone levels inside the normal range. That’s not attaining remission, but it’s still an effective way to keep your thyroid hormone levels under control. As long as they don’t experience any of the serious (but rare) side effects of the ATDs, some patients have stayed on them for many years. If you find yourself having trouble with elevated liver enzymes or low white blood cell count, you may need to discontinue the meds and decide upon a different treatment choice. The problems typically go away as soon as the patient stops taking the meds.

If all of your values for thyroid hormone (TSH, T4 and T3) are now falling within the normal range, then it’s quite possible you’ve got a natural remission happening. I believe I went in and out of symptoms for years before I was finally "full blown" and diagnosed. That’s great, it gives you more time to do research and figure out your preferences for the day when you need to make a decision. The antibodies come and go for reasons no one truly understands, so trust that they will be back, but rejoice that they have gone. ” title=”Very Happy” />

Remember though, having your levels fall within the normal range is one thing, being at YOUR normal point is another. If your levels are fluctuating, even if they stay within the normal range, that can still be tough on your body. When our thyroid hormone levels fluctuate, that is a signal to the body that something is not right, and the body removes support from the "non-essential" functions (hair and nails first) in order to preserve energy to fight the problem ~ EVEN if you are within the normal range ~ so if you find that you still do not feel well, even though your blood tests fall in the technically "normal range," you may want to pursue some level of treatment just for the purpose of having thyroid hormone levels that are STABLE.

[Ski]

in reply to: half a thyroid #1073816

I haven’t heard of one side of the thyroid being "dead" before, but the end result is really the same. If your thyroid is producing too much thyroid hormone, you’re going to feel ROTTEN.

You can easily plan on feeling better within a year or two. It’ll start immediately ~ as soon as you are under the care of a doctor and trying to treat your GD, you’re miles ahead of many patients who still have not received an accurate diagnosis. Once your levels start to improve, you’ll feel better in small increments along the way.

Do remember that once your levels are normal, that is the point at which your body can BEGIN to truly heal the damage that’s been caused by hyperthyroidism. It’s not like a virus, where you can determine "it’s gone, I’m fine." The disease causes a lot of damage throughout the body, and stopping the attack doesn’t make us well, but it makes our body strong enough to finally start the difficult work of healing.

Stick around, we’re so glad you found us!

[Ski]

in reply to: new to grave’s disease #1073819

Besides surgery, there is RAI treatment, which is another way to remove the thyroid. We take a small dose of radioiodine, which is taken up in the thyroid and destroys the thyroid tissue. It can take a little longer to "reach zero" and then get our levels normal, but it doesn’t involve the invasiveness of surgery. Either one is a valid choice and will return you to health. It really comes down to what YOU want.

[Ski]

in reply to: t4 3.59, TSH 0.006 3 weeks on PTU #1073822

It’s still a little early (believe it or not) to determine whether the PTU is working for you. It can take up to six weeks for our body just to flush out the excess thyroid hormone that existed before you started taking the PTU.

As far as connections to radioactive events ~ when I first asked my endocrinologist, "how did I get this?" he asked if I lived near Three-Mile Island at the time of the accident, and my answer was YES, which is surprising (both that he asked, and that I could say YES), since now I live in the San Francisco Bay Area! I did a little online research and found suggestions that crystallized radioiodine was released at that accident, and now the incidence of thyroid conditions in the outlying area was extremely high. Within about six months, the "official" site no longer said that. I thought that interesting, since we were already 20 years beyond the event.

Bottom line, though ~ no matter what caused it, we must treat it.

If it is ultimately determined that PTU is not working for you, you still have three options. You can try methimazole (the other ATD) to see if you respond better to that. Or you can proceed to either surgery or RAI treatment.

Talk with your doctor though ~ you may want to wait just a little longer to see about the PTU.

[Ski]

in reply to: I officially have TED #1073849

Having your thyroid removed won’t have any affect on your TED progression, but as Dianne mentioned at first, the fact that your symptoms have existed for some time is a good indicator that you’ve probably seen "the worst" of it. An extremely low percentage of TED patients have the worst possible symptoms, and they usually come on rather quickly.

If it’s any consolation, one of the doctors who spoke at a conference a few years ago indicated that through autopsy records they have determined that ALL Graves’ patients have some indications of TED, but not many have symptoms that show outwardly.

The overall path of the disease usually takes between 1 and 3 years to "finish," and so if you had "tiny" changes a year ago, and "slight" changes now, the likelihood is that you will NOT have the worst symptoms.

TED is an autoimmune disease, just like Graves’ (they’re separate, but connected), so reducing your stress levels can help you feel less symptoms. Whatever works for you is perfect ~ hot baths, funny movies, walks in the woods, yoga, etc. etc. etc. ~ just try to remember that you cannot remove ALL stress from your life (that would be so boring!), but you can choose to react with less…. severity, if you understand my meaning. It’s not always possible, so this is not about halting ALL possible stress reactions, it’s just to say that everything you do to TRY and relieve stress will be a help.

[Ski]

in reply to: New to This #1073843

Hi Estelle,

One of the first and most important things to know about Graves’ Disease is that, while a symptom list exists, it is very broad, and none of us are "one-size-fits-all" patients, so we may not have some symptoms, and we may have DIFFERENT symptoms in some cases. I have a friend who was gaining weight, with her eyes bulging out of her head, and it took the doctors TWO YEARS to check her thyroid levels because "you’re gaining weight, it can’t be hyperthyroidism." SO frustrating. She suffered far too long, simply for the lack of one inexpensive thyroid test.

Doctors will try to back out of the discussion by saying "you must be eating more," and of course that theory goes out the window for you, since you’ve been dieting!! The only other thing I’ve ever heard suggested was to say it could be caused by the muscle wasting that occurs with hyperthyroidism. We lose muscle mass in our large muscle groups (upper arms, legs, and chest muscles), which means our body cannot process as many calories as it did before, since muscle mass actually "eats" calories, even while we’re at rest. When muscle mass goes away, it can’t "eat" the calories, so weight gain can result.

Tylenol and ibuprofen should not have any effect on your thyroid hormone levels, by the way.

It sounds as if you’ve done a LOT of research already, and you’re well ahead of the "average" patient in terms of understanding where you stand, so that is GREAT. You’ll probably have an easier time of treatment, with the understanding you’ve already gained.

We’re here to support you through the process, so please keep visiting, and ask any questions you may have (no matter how weird you think they may sound!!). ” title=”Very Happy” />

[Ski]

in reply to: TED symptoms and temperature #1074093

Thanks for letting us know, Rob! That’s interesting. I’m glad Jake’s advice helped in the meantime.

ALSO very glad your heat wave has subsided, phew! ” title=”Very Happy” />

[Ski]

in reply to: Life Situations, Emotions, and Graves’ Disease #1073875

One of the doctors who spoke at a conference a few years ago went through the history of "scientific knowledge" about the thyroid ~ he pointed out that at one point, the theory was that our thyroid was a BAG OF WORMS in our throat!! ” title=”Very Happy” /> YEP, I’m glad to have been born in this modern age!!

[Ski]

in reply to: Anti-Thyroid Drugs #1073890

You are right to stop & think before blindly going into any treatment. I want to say, however, that RAI is NOT the "evil monster" that some websites would like to claim. We have MANY people here who were given RAI as the first choice of their endocrinologist, and they’re doing just fine. We also have many people here who chose RAI as their treatment, and they’re doing just fine as well.

Still, we do have three perfectly valid options for treatment, and we should be free to choose whichever we are more comfortable with, barring any obvious deterrent (for instance, no surgery for hemophiliacs ~ the most obvious example I can think of).

RAI, in one study, caused "temporary worsening" of TED symptoms in about 15% of the patients in the study. Neither term was well defined, and the study has never been reproduced successfully, so take that for what it’s worth. In that study, patients who were given a concurrent course of oral steroids (prednisone) for a short period of time before & after the RAI (a total period of a few weeks) had 0% "temporary worsening," so in patients with TED who want RAI, it is recommended that they discuss the option of using steroids to minimize or eliminate the possibility of exacerbating eye symptoms. Steroids, even in a brief course of treatment like this, do have the potential to cause severe side effects, so it’s something that needs to be evaluated between you, your endocrinologist, and your ophthalmologist.

As our founder, Nancy Patterson, has pointed out ~ radiation professionals will typically recommend using radiation. Surgeons will typically recommend using surgery. It’s something we need to sort out, as patients.

If it’s your preference, you should be fine taking ATDs, at least to start, in order to bring your levels down and get some perspective on everything. If your doctor has some objection to the use of ATDs, have a long discussion with your doctor to find out why. Some doctors just don’t like to use ATDs, period. If your doctor has a specific reason why ATDs would not be recommended FOR YOU, that’s something to consider.

By the way, this message was posted twice, so I deleted one of them. Hopefully it didn’t startle you to think that your post had been deleted. ” title=”Wink” /> It’s still here!! ” title=”Very Happy” />

[Ski]

in reply to: Surgery to Remove Thyroid, Can it Reverse Eye Bulge? #1074388

We also heard about these at the October conference ~ again, typically used in the hot phase to reduce the damage done at that time. The hope is that by reducing the swelling during the hot phase, there is a better chance that the patient’s eyes will return to normal after the cold phase is over. The bulk of the long term damage is caused by scar tissue so, less scar tissue, less long term damage.

Typically surgery isn’t even considered until the patient has long since entered the cold phase, so orbital injections of steroids would not help at that point.

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