[flora]

#1059822

Hello, and thanks for this great forum. I’m feeling pretty terrible right now, and it’s good to have this place to turn to. After six stressful months (family illness, etc.), and thinking at the time that the symptoms I was experiencing were all “just stress”, I finally went to my doctor, and got diagnosed as hyperthyroid on March 5th. Since then, I have be taking the prescribed 5 mg of Tapazole once a day, but after 33 days, I still feel at least as awful – maybe even worse – with the mornings especially bad. Along with the insomnia, nervous shakiness, some sweats, the muscle and joint aches are bothersome – mainly lower back, buttocks (?!), legs, hips, knees. And ( real drag), I have much reduced strength and stamina – carrying groceries from the car is a major effort. I seem to have gone from an energizer bunny to weak as a puppy. It’s really hard to push myself through the day, and to try and stay cheerful around family and friends.
On April 2nd , my TSH was re-checked, and although the doctor has received the report, I can’t get in to see him till the 19th, which seems like an eternity, feeling this terrible. So, in the meantime, may I ask a few questions? Has anyone else’s experience has been similar to mine? Is it typical, for some of us any way, to feel as bad/or worse, after a month of medication? How long can it take to feel any better, at 5 mg of Tapazole a day? Any tips on how to hang tough, for such a discouraged newbie as I am? Hope to hear some encouraging words, and again, thanks for this wonderful forum.
Flora

[Kimberly]

#1177985

Hello and welcome! I’m sorry to hear that you are feeling so poorly, but I’m glad that you found us.

As you go through this journey, it’s helpful to get hard copies of your labs so you can see for yourself where your levels are compared to the “normal” range. It’s also important during this stage of treatment for your doctor to base dosing decisions on Free T4 and T3 and *not* just on TSH, which can be an unreliable benchmark early in the treatment process.

It’s important to note that dosing with Methimazole is part art, part science, and it’s common for patients to need tweaks in dosing. Many docs will start at high doses and then bring that down as levels come into range. Other docs will start as low as possible and then work upwards if needed.

You might call the doctor’s office, explain how you poorly you are feeling, and ask if you can be placed on a cancellation list. Sometimes that can get you in the door more quickly.

In the meantime, building some “down time” into your day to focus on activities that bring you joy and give you energy is helpful. Examples include meditation, gentle yoga, reading, or watching funny movies. Also, anything that you can do to pare down your schedule is helpful during this time. See if there are tasks that are bogging you down that you could potentially “dump” or “delegate”.

Hopefully, you will start to see some relief soon – please check back to let us know how you are doing!

[fishman]

#1177986

I’m been feeling the same way! I have been on Methimazole for a year now and have been increased on the medication and now back to the start of my original dose of 5mg. I felt that way on the lower dose in the beggining, then got better as we increased it. Now that I’ve been back on 5mg, I feel worse, my body is all over the place. Mornings are always bad for me too! I go back to the doctor April 9th. I’m really leaning towards the “RAI” cause my life feel like a mess. I’ve been feeling really depressed lately and I feel your pain. Now I’m just hoping to make this decision, it works and save my relationship/Love with my best friend! My stomach always feels like I’m on a roller coaster! Most worst times I feel like just laying around and not doing anything.

flora wrote:

Hello, and thanks for this great forum. I’m feeling pretty terrible right now, and it’s good to have this place to turn to. After six stressful months (family illness, etc.), and thinking at the time that the symptoms I was experiencing were all “just stress”, I finally went to my doctor, and got diagnosed as hyperthyroid on March 5th. Since then, I have be taking the prescribed 5 mg of Tapazole once a day, but after 33 days, I still feel at least as awful – maybe even worse – with the mornings especially bad. Along with the insomnia, nervous shakiness, some sweats, the muscle and joint aches are bothersome – mainly lower back, buttocks (?!), legs, hips, knees. And ( real drag), I have much reduced strength and stamina – carrying groceries from the car is a major effort. I seem to have gone from an energizer bunny to weak as a puppy. It’s really hard to push myself through the day, and to try and stay cheerful around family and friends.
On April 2nd , my TSH was re-checked, and although the doctor has received the report, I can’t get in to see him till the 19th, which seems like an eternity, feeling this terrible. So, in the meantime, may I ask a few questions? Has anyone else’s experience has been similar to mine? Is it typical, for some of us any way, to feel as bad/or worse, after a month of medication? How long can it take to feel any better, at 5 mg of Tapazole a day? Any tips on how to hang tough, for such a discouraged newbie as I am? Hope to hear some encouraging words, and again, thanks for this wonderful forum.
Flora

[LKBallenger]

#1177987

Flora, I am sorry you are feeling so bad You will find this forum to be a huge support. Even with a good support system of family and friends, they still don’t fully understand. My husband, who is wonderful, thinks I am depressed because of all the crying I do. I think it’s more the anxiety and all the ‘what ifs’. Just know that you are not alone. Feel free to vent frustrations…….like having to wait so long to get into appointments……be there, done that. Wish there was more I could do……big hug. laura

[snelsen]

#1177988

Hi Flora,
yes, I have had the same symptoms and experiences you are having.
You are brand new, and the whole deal is overwhelming and discouraging.
But, like the rest of us, you will be better again, and like all of us, it takes too long, not matter how long it takes! Easy to be impatient about all of this, and even more so because we are hyper.

Kimberly’s comments about calling the doc’s office, asking them to call you if they have a cancellation, is good advice.
If you read some of the posts on this forum, you will find that most of us get copies of our labs, and there is definitely a learning curve for you to begin to understand what these labs mean.

There really is no way for anyone to answer your question about how we were doing on 5mgm. As mentioned in Kimberly’s post, the initial dose is a guess, and that combined with your labs, combined with HOW YOU FEEL is the guideline on whether to increase or decrease your dose.

In super simple words, our thyroid has gone amuk, and shot out too much thyroid hormone, which gives us these terrible symptoms and we feel like crap. So the first thing to do is to put a brake on the crazy amount of hormone that is floating around, making it less, so we begin to feel like a human again. Too much hormone causes all the symptoms you have, plus some others, feeling hot all the time, having a big appetite, but losing weight, and having a very fast heart rate. The doc needs to know all this stuff. I suspect he began with a small dose. Frequently, we do not get enough instructions and information when we see a doctor.

I encourage you to keep your own file at home of copies of all your doctor visits and all you labs. **VEry wise, too, to arrange to get your labs before a doctor visit, so you have something to discuss.

I encourage you to call the office, leave a message that you are not feeling better at all, and list the symptoms you stated in your post. Ask them to have the doctor call you, and/or ask if your recent labs mean that you should have a change in your Tapazole.
Beginning treatment with an ATD (anti thyroid drug) initially is pretty much guess work on the dose, and the decision to increase or decrease the dose is based on labs (not just TSH, but T3 and T4, as kimberly said) AND how you are feeling.

Are you going to a regular primary doctor, or to an endocrinologist? Does this doc know, or are you new to each other?
There are good references that have been posted on this website for you to begin to learn more about Graves’. It is really helpful to begin to understand it, and it does take a while to have a feel for the whole process and the treatments.

You have a lot of new friends here, and welcome to this reliable and great site.
Shirley

[flora]

#1177989

Thanks to all my new friends who have been so quick to surround me, already! Sharing your experiences with me has been a real boost in yet another “feel crappy day”. I’m taking all of your suggestions to heart (yes, I got on a cancellation list!), and will do my best to stay positive and patient through this. You are all great,
Flora

[mslux]

#1177990

Hi Flora,

You poor little thing, it is really crappy to feel like that. I was given Carbimazole which is an anti-thyroid drug used in Europe and Propranolol a beta blocker. The beta blocker really helped with the shakes, anxiety and jitters. Were you offered a beta blocker do you know?

Kind Regards,

Ms Lux X

[flora]

#1177991

When diagnosed five weeks ago, my doctor decided to start me on 5 mg of Tapazole once a day, and that’s all so far. And so far, as I mentioned, symtoms are as bad or worse. I noticed in reading posts, though, that it can take weeks for stored excess hormone to be flushed from the system (learning lots here!). I’m wondering how long other people have been waiting, or had to wait, before noticing even a little improvement. Five weeks has seemed like a long time to me, but can it take this long, or longer?

[fishman]

#1177992

The 5mg makes me all over the place! You were smarted then me to join faster then I have! I’ve been taking the meds for a year now and wished I came here a while ago. Cause I feel better that others feel like me, when I though I was just all over the place with life! I’m going back to the Doctor Tuesday hopefully to be going into re-misson? or setting up the RAI. At least I can asked her more dosing questions from being here only a few days after a long year! I also had to get Alprazolam to take 2x/day with taking my methimazole. Not sure if its working, does help me sleep. I toss and turn all the time! I will post my result next week! I really want off this medication!

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