[Anonymous]

#1077306

It is quite possible that your hyperthyroidism crept up on you, and that you feel “normal” with excessive amounts of thyroid hormone. So, if the amount of hormone is lowered, you feel more “tired” than normal. It is also possible, as with any drug, that you are not tolerating the PTU optimally.

I would recommend that you discuss things with your doctor. I cannot stress enough how important it is for you NOT to be hyperthyroid. Excessive levels of thyroid hormone are horrible on your body, and on your future health. If it goes on long enough, really nasty results occur. So, if you are just “used to” excess levels, and think of that feeling as “normal”, you may have to give yourself some time to adjust to the newer feelings. But if you are not tolerating the drug, you might have other options. Only you and your doctor can determine this.

Bobbi — NGDF Online Facilitator

[Anonymous]

#1020471

Hi, I was diagnosed with Graves Disease about 2 weeks ago (5/9/06). I had basically no symptoms other than not having a period. After rounds of blood tests I was diagnosed. My doctor (Endo) put me on a low does (100/mg/day) of PTU. But ever since I just don’t feel good. I am super tired, and just not 100%. I don’t go back for a review for another week. Has any one else felt this way?

[Anonymous]

#1077307

Yes! I was just getting on to post something like this. I have been on PTU for almost a month and I feel much worse than before! I feel so achy, like I have fever, but I don’t. I am so tired and have no appetite. I don’t have much energy at all to play with my 2 little children. I hope this will subside. I think it is hard for my husband to listen to me complain about it b/c I don’t LOOK like I feel bad. I plan to call my doctor later today. Does anyone know if this is normal?

[Anonymous]

#1077308

I wouldn’t say I feel worse, but I sure don’t feel better. I had a short period when I first started taking it , where the pain was mild and I was able to go for walks and run a little. Not now. I totaly understand what your saying and how your so tried you can’t keep up with your children. I have four and my children don’t understand. Then a guilt comes over me for not being able to do what I once could. My husband, he says he understands. But his actions show otherwise, I mean I am young and to look at me you cant tell anything is wrong with me. (Unless my eyes are swollen that day) This has put major strain on my marriage, I can’t explain it but I am sure those of you know what I mean. It is a daily struggle for me to just get my kids from school or go to the supermarket.

[Anonymous]

#1077309

Don’t want to sound dumb here but what exactly is PTU.

[Anonymous]

#1077310

PTU is one of the anti-thyroid drugs — its full name is propylthiuracil, which is why we call it PTU. The anti-thyroid drugs are meant to keep the thyroid from producing extra thyroid hormone. PTU is one, methimazole is the other (that’s generic for Tapazole or, in the UK, Carbimazole).

ATDs (anti-thyroid drugs) are the third choice of treatment, the other two being RAI and thyroidectomy.

I know Bobbi mentioned this, but as we are recovering from hyperthyroidism, we may feel as if we are completely lethargic when in fact we are just “coming down” from being hyperthyroid and we THINK we’ve become lethargic. The other possibility is that the dose IS too high and we have become hypothyroid. It is a tough balancing act in the beginning with either PTU or Tapazole, and it is important to remain patient.

Hyperthyroidism usually comes on gradually, but we feel as if it was all at once because we only felt ill when we began to seek treatment. (Before that, I like to joke, I didn’t care what was happening because everything I needed to do was getting done.) As it happens, our body systems are affected and things begin to break down. When we begin treatment, those “broken” systems do not repair in the blink of an eye. We need to find a normal spot on the thyroid hormone levels that works for us, and only then can our body *begin* to heal from the onslaught that was hyperthyroidism.

It can take a long time to feel really, truly well again, and in some cases, we don’t even remember what truly normal felt like. Don’t make the mistake of abandoning treatment because it doesn’t seem like you’re getting well quickly. Thyroid hormone levels rise and fall in relatively small degrees, for the most part, when our body is reacting normally. When we begin treatment, the changes are far more pronounced, and our body can easily react as if it is under trauma.

I hope that helps all of you who are feeling discouraged! I realize no one wants to hear that it’s going to take a while, but knowing that can help you through it. Look for small improvements, like being able to get up out of the car without pain in your thigh muscles, or having no tremors. Those things are evidence of healing, however small.

~Ski
NGDF Assistant Online Facilitator

[Anonymous]

#1077311

Thank you everyone for your replies and information. I was starting to feel batter on the PTU then felt worse again. It turns out I’m pregnant (good thing – my husband and I have been trying)! I have my first appt with my Endo since finding out the news. Not sure how my thyroid is going to react to being pregant – but looking forward nonetheless!

[Anonymous]

#1077312

Congradulations on the pregnancy. That is such good news.

Our thyroid hormone needs normally change a lot during pregnancy, and you might find that you need less and less PTU as you go through it. Your doctors will monitor you carefully so that they can adjust the meds accordingly. The hyperthyroidism, though, typically comes back at some point after the birth, so make sure you and your doctors are paying attention to your thyroid levels so that you do not become ill again.

I wish you good luck with your growing family.

Bobbi — NGDF Online Facilitator

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