[Bobbi]

#1066667

It is a really bad idea for the patients to tamper with their med dose, without the doctor’s knowledge. You are paying your doctor big bucks for his/her expertise here — you should follow his/her advice. And, yes, if you have doubts about the doctor’s advice, do seek a second opinion.

While some people claim to feel energized while hyperthyroid, many of us — myself included — just felt exhausted, sluggish and weak. I don’t think I’ve ever felt so tired as I was while I was hyperthyroid. And I didn’t lose much, if any, weight. Anyway, there is a list of symptoms, yes, but not every patient feels all of them. Some patients even gain weight while hyperthyroid. What counts is not so much the symptoms, but the blood test results. If the blood tests show elevated levels of thyroid hormone and depressed levels of TSH, you ARE hyperthyroid, whether you feel that you are or not. And even minor levels of hyperthyroid have long term bad health effects if allowed to continue. You need treatment.

Sometimes, we feel bad while on the meds, because the meds are causing side effects. I am not saying that IS what has happened to you, but it certainly happened to me. While on PTU, and supposedly at normal levels of hormone, I could not think, I was sluggish, etc. etc. I decided that it was the medication that was the problem, and got my thyroid removed via RAI. I just knew that I could not spend years on a medication that made me feel so rotten — if it was the medication at work. People online told me that I was making a mistake because I would feel that way when I was hypothyroid. They were wrong, thank goodness. I never felt that badly again, ever. As I said, this may not be what is happening to you. But most people who stay on the medications feel fine while at normal hormone levels, so feeling badly on them is something you need to discuss with your doctor. That’s especially the case if you are going to be tempted to be non-compliant with the dose as a result.

I do hope that you are feeling better soon.

[071781]

#1066668

Thanks so much for your help!

So you said you had your thyroid removed with RAI….have you not had any problems after that? I’ve been reading online about that b/c my dr keeps asking me about doing that and all I see online is people saying not to do it and how bad you’ll feel, how much weight you’ll gain, etc. Also, I’m 28 years old and want to have children probably in the next few years so I’m alittle hesitant doing the radioactive iodine.

[071781]

#1018718

Hi I’m new to this but I thought I’d look here for help. I was diagnosed with Grave’s in September 2008. I had gone for a physical and mentioned that I felt tired, sluggish, and I had a goiter. My doctor thought it sounded like I had hypothyroidism so she sent me to the Endo. After many tests and labwork they said I had Grave’s. I was on Tapazole for almost a year and eventually went hypo, so the dr said it appeared I was in remission and took me off of the Tapazole in August 2009. I continued to be in remission until this month. I just got my lab results and the Free T3 was 4.56, Free T4 was 1.14 and TSH was .010 so the dr told me to start back on 2.5mg of Tapazole a day. I’m just confused b/c I read about the symptoms of Grave’s and don’t seem to have any of them. I’m never hot (actually I’m normally always cold), I have no trouble sleeping, I don’t feel overly anxious, etc. I have lost weight but I’ve been trying to lose weight and it hasn’t been a huge amount of weight. When I was on Tapazole I felt bad. It made me feel sluggish, gain weight, etc. I don’t want to take the medicine and start to feel bad again, especially since I feel fine right now. Should I get a 2nd opinion or maybe take 1.25mg of Tapazole instead of the 2.5? Thanks!

[Bobbi]

#1066669

There are people who can have less than optimal results from any treatment option for any disease. The problem with the internet is that it provides a constant forum for all those cases, without necessarily providing the balance of posts from all the people who were helped by a treatment. People who are ill, who have had bad results, who are opposed to something or other, will come online and post. People who have gotten well again, do not haunt these forums. They are back living their lives. They are not dwelling on "disease" by and large. It actually takes a fair bit of patience to come on when you are well and read all the problems associated with disease. So online forums can be skewed towards problems rather than solutions. This particular forum wants moderators who have gotten well again as a counterbalance. We occasionally see posts here from folks who have gotten well again, but not very often, other than from the moderators. And the moderators have typically done RAI. One of the current moderators, James, is doing well on the meds.

If you want to test my comments, go back in months, go back through the archives, and read the posts. They will sound every bit the same as the current ones. The issues, the fears, the problems remain constant. The names, however, are changed.

Yes, I had RAI 12 years ago. It made me well again. I did not have a completely easy time of things getting to a single dose of replacement hormone. In the midst of a particularly trying time, I nicknamed my thyroid "Arnold" for The Terminator. I figured my thyroid had come out of the "truck fire" of RAI skeletal, but still lethal. (It does help to keep a sense of humor.) Anyway, what I experienced was that my swings of hormone were easily accomodated post RAI, and that I never, ever felt as horrid as I had while on PTU, or while horridly hyperthyroid. I know that RAI can make someone well again. I also know that surgery can do the same. Or the meds, if they work effectively to control hormone levels without side effects. And replacement hormone has remarkably few side effects: it IS T4/thyroxine, so as a result its side effects are hyperthyroidism if you take too much, or hypothyroidism if you take too little. It does — to my mind at least — simply things a lot.

So, I suppose what I am saying is that any of the three treatment options can give someone back their health. I was made well again by RAI. The hard part for you is to work with your doctor to find YOUR optimal treatment path.

[Author]

Posts