[Anonymous November 1, 2007 at 4:34 am Post count: 93172]

#1076003

Cosievee, I just wanted to add a couple of more comments to your posts. First, when you see your new endo for the second opinion, you might ask why you aren’t feeling better on the antithyroid drugs. Most people do start to feel better when their levels are brought down, if they aren’t brought down too far so that they become hypothyroid instead. It will take some time, however. But 4-5 months that you mentioned should be long enough.

The next thing I wanted to mention is that radioactive iodine is NOT a quick fix for hyperthyroidism. Most people feel better a lot faster with the drugs than they do with RAI.

Everyone is different as for the dose of RAI given and how their body responds to it, and how well the doctor adjusts thyroid replacement hormone when needed. Most people are told to expect it to take six months to a year for the treatment to take effect and thyroid replacement to be minimally adjusted, though this process will go on for years. Some people have a relatively easy time with this whole business and others have a real struggle. You can’t know in advance how your body will react. You may be able to work straight through it all, or you may need to take several months off (or something in between).

I chose RAI because I was the sole support of my family and believed it would be an easy way to get well quickly. It didn’t turn out that way for me, as I ended up needing lots of time off work afterwards. My thyroid continued to rapidly die out for several years and I continued to feel unwell during that time, as my levels were never stable for long.

That doesn’t mean it would be that unpleasant for you. It isn’t for everyone.

Dianne W

[Anonymous November 1, 2007 at 5:01 am Post count: 93172]

#1020101

Ok, hopefully I’m not making everyone crazy with all these posts.

My PCP suggested I try to reschedule my endo appointment for sooner since I was feeling so poorly (that description hardly does it justice) and so I did. I could only get it for a month sooner. That appointment was just yesterday. Endo said (after my asking to confirm it) that it is indeed Graves’ causing all this. He went on to say that he likes to try the Tapazol for 6-12 months to see if the body will shut down the thyroid on its own. I’ve been on it 4-5 months now, and only continue to feel worse and worse. He went on to say that he won’t do the RAI sooner unless it’s absolutely necessary to do it sooner. He said my levels were ok but that my TSH level was still off (don’t remember if he said high or low). I don’t understand how that is, but so be it. The med can’t do anything to help that anyhow. The T3, T4 and TSH bloodwork was drawn again while I was there, but I’m not holding my breath about getting much feedback from him.

My job has been extremely understanding with all of this and has let me work around this as best I can. If it weren’t for that, I would most certainly be forced into medical leave without pay. And believe me, if I could afford to do that, I would. Even with all the help regarding work, it’s still extremely difficult to keep up with even that much. But I guess it’s good that it forces me up and about 5 days a week.

And since I’m not satisfied with just taking a med that’s not even helping me feel like I’m staying the same, let alone better, I’m getting a second opinion. No matter how much I say my fatigue and lack of focus and muscle weakness are a problem, it just doesn’t seem to be a concern to this endo. Unfortunately, I couldn’t get an appointment with the second endo until early January… but what’s another 2 months at this point? And this endo comes highly recommended and has even made a “top doc” list locally. So I have high hopes resting on this appointment. Like I said, I know nothing is going to get better fast, but I want to at least feel like I’m making progress! I don’t know precisely when the hyperthyroid symptoms started, but it’s been at least a few years and quite possibly many years. I’ve felt like I’ve been in a steady, gradual decline for at least the last 7-8 years, but I’m not sure where the depression symptoms end and the Graves’ disease begins when looking that far back. All I know is that I’ve had all I could take of this a long time ago! (Next)

[Anonymous November 1, 2007 at 1:07 pm Post count: 93172]

#1076004

I realize how frustrating it is to feel awful and have to wait — we need to cultivate patience with this disease.

I think it is good that you are seeking asecond opinion from a respected endocrinologist. I hope that it helps.

In the meantime, please do not assume that just because you do not feel well that the medication you are on is “not working.” Perhaps it IS working, and you would feel oh so much worse if you were not on it. If there has been some progress with the actual thyroid hormone levels (as shown on the blood tests) then the medication probably is working. TSH usually takes longer to come into alignment. One way of understanding this is to see TSH as a kind of “working average.” Even though today your levels are OK, the TSH system is still taking into consideration the way the levels were yesterday (or last week/month, etc.) So, it takes a lot of time AT normal for the TSH to show itself as normal, too. This is both good and bad, depending upon your perspective.

Also, there is no pill or treatment for Graves which makes us feel well quickly, unfortunately. That is because the body takes a beating while we are hyperthyroid. Since thyroid hormone works in most cells of the body, while it is out of whack all of those body systems are under stress, and are sometimes damaged. It takes time AT normal levels for those systems to heal. And during this time, we do not feel “well”, even though our levels are back to normal. One endocrinologist at a conference we held a few years ago told us to think of hyperthyroidism in terms of a metabolic hurricane. When the storm is gone, things in an affected community are not instantly “normal” just because the hurricane has passed. It takes time for a community to rebuild. Just so, our bodies need time to rebuild after the “hurricane” of hyperthyroid hormone levels. This is one of the reasons I said, at the beginning, that we need to cultivate patience. We need to feel well again right now — but it doesn’t work that way.

I found it helped to think in terms of “progress” rather than absolutes. (Although sometimes even “progress” can be hard to pinpoint.) I do hope you are feeling better soon.

Bobbi — NGDF Online Facilitator

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