[Anonymous January 23, 1997 at 7:42 am Post count: 93172]

#1057226

Hi guys. It’s been a while since I posted a note. I’m in a dilema because I’m feeling really good on 15mg of tapazole probably 10 mg next month. I’m only 30 yrs old and have a real problem with the idea of destroying a gland that is so important to my body. I’m starting to have some mild to moderate eye symptoms but they appear to be under control as long as I elevate my bed and don’t drink beer. My emotions have been up and down alot and I don’t want to go through a six to nine month period after RAI to get regulated again. Tapazole supposedly has an immune suppressing effect on the antibodies that cause Grave’s. I am really worried that Graves will destroy my eye if I get off the tapazole. My endo said that if I take prednisone before RAI that this will control any resulting eye problems. From what I’ve heard on the BB this could be hit or miss. What could it hurt to stay on 10mg or 15 mg of tapazole for as long as I can ? I’m not ready to be totally dependent on a hormone supplement for the rest of my life. My endo wants me to take RAI in April. I know tapazole has potentially bad side effects but can you live on synthroid for 40 years ? Maybe a cure can be discovered in the next five years. My endo also says that the only option is to completely destroy the thyroid. Do they all say this ? Let me know what you think.
Thanks for listening.

Joe

[Anonymous January 23, 1997 at 9:11 am Post count: 93172]

#1165482

Hi, Joe.

Unfortunately, none of us can tell you what to do here. I could suggest some questions for you to think about, but in the long run you have to decide in consultation with your doctor.

For information on the synthetic thyroid hormone pills, you can go to http://www.druginfonet.com The information here is provided by the manufacturer of the drugs, which might suggest a bias, but the information has been approved by the US Food and Drug Administration. There is a statement that it applies only to the US. The two synthetic preparations included on their list are Levoxyl and Synthroid, which are both T4 replacement hormones. According to the research I’ve done, these pills are chemically the same as the T4 hormone produced by the thyroid, WITH THE EXCEPTION of the “fillers” used by the drug manufacturers to make it into pill form. From conversations with my endo, it is these fillers that sometimes can cause a problem with the individual — for example, if they use corn syrup in the pill, or a color dye, and you are allergic to that particular component.

Question: In your post, you mentioned feeling good about the possibility that Tapazole was suppressing the immune response which threatens the eyes. WEll, if that is true, what else in the immune system is being suppressed? I would doubt that this is a truly “positive” aspect of the drug. It might keep your eyes better for a while, but leave you open to infection from other sources. Have you talked with your endo about this?

Yes, a lot of doctors, here in the US at least, recommend RAI. The question we have to ask them is “Why”? We, as patients, have the right to ask this question, and ask it again, until we are certain we understand how they’ve arrived at their conclusion. It doesn’t necessarily mean that we have to agree to go along with it. The hard part is knowing if our reasons for not going along with it, are valid. So, I would recommend that you take your fears (about being on synthetic thyroid hormone for 40 years)and questions and talk to your doctor. He/She has to have some reason for suggesting RAI after all the time you’ve been on Tapazole (however long that is). There is always the second opinion route, too. Find out what some other doctor feels, given all the data.

As someone else here on the board suggested recently, ASK, ASK, ASK and READ, READ, READ. You owe it to yourself to make your decisions based on logic and factual information.

I wish you luck, and hope this helps.

Bobbi

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