[CMoore416]

#1019692

I wrote a whoe LONG post last night and it disappeared.

To make a long story short – have had GD since 97. 2 episodes my thyroid went back to normal on its own (no meds) 3rd time was bad – every symptom imaginable. (Mental and physical) I was put on Tapazole – allergic to that so they switched me to PTU in April of 2006. I started out on 300mg of PTU – and went very Hypo. They then lowered me – and after several months found hte balance and was on 150mg. The last 1 1/2 years I have been on 100 mg (1 50mg pill 2x a day) and have been fine. My levels though have been just in normal. Here are my last results.

TSH – 0.45 (oct 07) 1.10 (Feb 08) 0.83 (july 08) 0.68 0.74 (both Oct 08)
T3 (oct 08) – 120
T$ (Oct 08) – 1.02

My question is – how long can one take this medicine.? I hve been told its temporary by one Doctor. My primary says its working for me and why change it since its a low dose. My NEW endo says its ok to be in it long term – but why not just do RAI and be done with it? My OLD endo as well as another ENDO who was taking email messages both said it was more of a short term solution and not a long term medicine. Will this affect my body in other ways. I have a lot of headavches and stomach issues.

However I have been a hyperchondriac since having so many health issues from my thryoid. Im over it. LOL

Any help you could give me would be appreciated. I have been on PTU now for almost 3 years. Thank you

Christina

[LaurelM]

#1073451

Hi CMoore,

I think I read some recent posts where the board facilitators mentioned a new study out of Europe regarding long term use of ATDs. They concluded that long term treatment 10+ years was safe and effective. I am sure one of the faciltators could give you more information. I am currently in remission but I was kind of happy to read that. I personally like having lots of options.

Take Care,

Laurel

[Ski]

#1073452

U.S. doctors have typically had a preference for using ATDs (either PTU and methimazole) to attempt remission, which means the patient takes them for 1-2 years and then stops, to see if remission has been attained. If no remission is attained, U.S. doctors usually recommend RAI.

In Europe and Japan, the preference has been to manage, long-term, with ATDs. So there is data for both possibilities.

The fact that U.S. doctors have a preference does not mean you must go along with it. This is YOUR body, and you do have the power of choice, barring any physical infirmity that would make you unable to choose one or another (as an extreme example, hemophiliacs cannot choose surgery).

It is always wise to ask your doctor for their opinion, and ask for some backup to that opinion. Some doctors prefer not to use ATDs because they’ve seen patients with one or another of the more serious possible side effects, so they would rather not expose another patient to the risk. Nice thought, but we are all different. Not everyone will end up with those side effects, and both (liver damage and lowered white blood cell count) can be reversed by discontinuing use of the drug quickly after determining what’s going on. One doctor who spoke with us said he had a couple of patients who disregarded the symptoms and ended up very ill from side effects, so for that reason the doctor hesitated even to prescribe ATDs in the first place. Again, these are things to consider, but it doesn’t mean you must change YOUR personal choice. With proper monitoring and knowledge, long-term management on ATDs is possible.

The only additional risk, long term, is that the drug is processed in the liver (unlike thyroid replacement hormone), and the liver gets, well, "full" as we get older, so checking liver function as you go along is important. Typically though, it’s low maintenance doses as you get further into the treatment cycle, so lower doses means less risk.

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