[kshapiro]

#1058675

I’m not sure where my original post went. Probably for the best, I was feeling a little depressed last night when I wrote it. My question however, was if anyone has any suggestions for coping. My doctor has put me on propylthyouracil but I feel like a yoyo. Off the medication I couldn’t sleep. On the medication I get tired randomly. My sleep patterns are all over the place. I was up very late last night and this morning I woke up early and I’m tired. I’ve lost significant weight which has been very hard for me to cope with as I’ve always felt I was skinny. Now I am redefining skinny. That was before the medication but still, I just feel like I have no control over my life. Anyway, I’m going to stop venting. Does anyone have any suggestions for ways I can cope? Physical or psychological?

[Bobbi]

#1169301

Hi, and welcome to the board.

The initial stages of the disease (including diagnosis and starting the meds) can be frustrating. The key thing you must keep in mind is that the medicine (propylthiouricil — or PTU, which is easier to type) is not going to be magic, making you feel normal again all at once. None of the treatments will do that because while we are hyperthyroid, damage is done to various body systems. It takes time AT normal levels of thyroid hormone in order for our bodies to heal.

What the PTU does is act as a chemical block to the production of thyroid hormone. You have to be taking enough of it to prevent you from being hyperthyroid, but if you take too much, you can become hypothyroid. So there is a balancing act that must be continued the whole time you are on it. You must take it consistently, as prescribed, and not tinker with it if you feel too tired, or whatever. The ONLY way your doctor will be able to tell if you are on the correct dose is for you to take it consistently and then check it with blood tests. If, over time, the blood tests show that you have been within normal levels of thyroid hormone for a while, and you still feel significantly "off" you can discuss other treatment options with the doctor. Some of us have problems with the drugs, others of us can take them just fine. But it typically isn’t something you can tell immediately (unless you have an allergic reaction).

So, how to cope while all this is going on? We all have different ways of doing it. I think it helps to keep in mind that you have been hideously ill, and that it is going to take time to heal. So being patient, looking for improvement rather than some absolute "normal" can help. Treat yourself the way you would advise your best friend to treat him/herself if he/she felt the way you do. In other words, be your own best friend. Often we demand too much of ourselves, expecting to do everything we normally would do, without giving ourselves time to heal and get well again, and we get discouraged because we cannot do that without wearing ourselves out. Remember you’re ill right now. It will get better, you will see improvement eventually. We do get well again. Just not all at once, right away.

[kshapiro]

#1169302

Thank you Bobbi. I really needed to hear that. It can be hard to trust you doctor sometimes because I think that I want to be in control so badly as a result of what I’ve been though. But what you’re saying makes perfect sense. I need to trust him to do his job and check the levels of thyroid hormone rather than trying to decide myself. I’ll also work on cutting myself more slack. It’s comforting to hear you say that I will get better. I am thinking of perhaps seeing a therapist too. I’ll keep everyone informed.

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