[Anonymous]

#1077024

Sorry, my new dosage is 10mg of Methimazole per DAY, not per week as my original post.

[Anonymous]

#1077025

Hi winniew,

I think any time we change our medication dosage (ATD or thyroid replacement) it can throw our bodies into a bit of a tailspin. As you say, nothing like the worst of it prior to treatment, but you end up feeling a little up/down crazy for a couple of weeks. It never hurts to ask your doctor if these symptoms would be normal for someone in your phase of treatment. It’s always better to communicate than not. Wishing you luck!

~Ski
NGDF Assistant Online facilitator

[Anonymous]

#1020393

So my latest bloodwork shows that my TH4 readings are 15, in the normal range according to my endo. It’s only been a month since I’ve been diagnosed with Graves and have been taking 20mg of Methimazole per day, 10mg of Propranolol as needed. He reduced my dosage to 10mg of Methimazole per week.

I’ve been on this new lower dosage for about 1 week now and feel lousy. I feel like I’m going through another adjustment again – fatigue, highs/lows throughout the day, muscle cramps in my legs, shoulders, and hips, and some irregular heartbeats. Nothing like before, I’m not experiencing rapid heartbeat like when I was hyperthyroid, just sometimes my heart would beat hard a few times while I’m resting like watching TV or on the computer. I’m also experiencing that little things stress me out like running late out the door, or not being able to find a misplaced item.

Has anyone experienced any strange or feel like they’re revisiting symptons from a dosage change? I’m not sure if this is temporary or maybe I should call up my endo about these symptons (not sure what he can do other than put me back on my old dosage).

Thanks in advance! I appreciate everyone’s input on this board!

[Anonymous]

#1077026

Hi Trish! Yes, working with engineers is a challenge just by itself. I’m still “stuck” back and forth and bakc and forth. My endo did decrease my Atenolol to 25 mg and it did make a difference. Then he asked me to come back in and well, said he wanted to decrease it again since my blood work is closer to being “noral” range for me. I did just that and for the first few days, absolutely wonderful feeling. Now I’m tired tired tired, my heart races (not all the time though like it did) and well, last night I had very mild heart palpitations (I know they were mild because they didn’t take my breath away like they used too).

This whole thing is a roller coaster and I think my body is telling me enoughs enough. I miss my energy. My kids look at me like “what the heck is your problem” because I used to do EVERYTHING around the house. I’m fine till about 8pm at night and then I’m so tired I am cranky but know I must get the next day’s dinner ready for the crock pot. I stayed up, got crankier. Its 6am and I’ve been up for a couple hours now and am already at work.

Im discouraged and honestly, I really dont know what to do about it. I need to know what to ask my endo. I need to get some energy back and I want to start living again. It feels so long ago but heck, its only been 4 months. I am mainly discouraged because my RAI I-131 failed and well, if I knew it would, I wouldn’t have chosen that. I’m trying to stay in the long hall with this but its so depressing and well downright cruel what my body is doing.

Hugs
Kim

[Anonymous]

#1077027

Hi Kim,

I wouldn’t be so quick to say your RAI “failed.” RAI does the bulk of its work in the first six weeks, but it can continue to make changes in your thyroid for up to six months.

If your blood work is getting closer to the normal range, then your RAI *was* successful. It is bringing your thyroid hormone levels down.

The Atenolol could be making you tired, at this point, but (as you know) it’s necessary to wean the body off Atenolol to avoid any “rubber band effect” of symptoms, so that’s a process you must go through. The racing heart and palpitations could have been a small “rubber band effect,” since those are the symptoms that the Atenolol was affecting. It doesn’t mean that it was a mistake to lower the dose, it just means your body is going through an adjustment. All the Atenolol ever did was to mask your hyperthyroid symptoms, so once you are no longer hyperthyroid, you’ll be off the Atenolol rather quickly.

There is truly nothing more difficult than waiting, waiting, waiting to feel better. I’ve been there, believe me. Once upon a time, someone posted on the board to say that we need to be much more forgiving of ourselves through this period ~ if we had cancer, we would have people lining up to help us, forgiving us for not being able to perform our “normal” functions. But since this is something no one understands, and we “look” okay, we get no help, no sympathy, and sometimes even nastiness and guilt trips. So our own frustration is multiplied and we end up feeling very hopeless. It’s not something we will be able to explain to everyone, and it’s also something we need to forgive ourselves for. Enlist your family’s help through this period. There was a time when my kids would come to me every day and say “what’s for dinner?” I started answering — “dinner is whatever you want to make for yourselves!” And I’d provide a list of things they can easily make, that they like. We need to figure out how to take the pressure off ourselves while we heal.

Another point to consider is that “normal” levels are only the *beginning* of feeling better. Think not in terms of bacteria, where once the bacteria is absent, we are back to normal. Think in terms of a metabolic hurricane, where normal levels mean only that the rain and wind have stopped. The condition is “normal,” but there is a lot of healing that still needs to be done before you will feel the way you did before you were ill. You didn’t get sick overnight, and you will not get well overnight. Think of yourself as still ill, even though you are approaching wellness, getting closer every day.

What to ask your endo? That’s an interesting question. At this point, you have already been treated, and you are on the path to being well. Let your endo know what is going on with you, and if you really want “good” answers, keep a symptom chart each day so you can give the doctor empirical information to back up what you say. Telling a doctor “I’m always tired” doesn’t carry half the weight of “I needed to take three naps on Saturday just to feel normal.” There is a symptom chart in the NGDF bulletins, if you want to use it. It can really help in discussions with the doctor. You could ask the doctor for information about how you compare to other Graves’ patients they’ve had, for instance, to see if your experience is radically different from everyone else who has been through their office and treated for this particular condition. You could ask the doctor if they have any advice for you about regaining your energy levels. The tricky part is that there is no set formula, no one reacts exactly the same way to the disease or the treatment, so you cannot look at your circumstances and say unequivocally that you are “past the point of no return.” Thyroid disease IS a waiting game. Once you have attained normal levels, you may still require “tweaks” to your medication over the rest of your life. Our need for thyroid hormone changes over the years due to age, activity level, weight, menopause, pregnancy ~ a full range of things. If our thyroid were working, it would adjust itself through every one of these changes, but ours is not, so we must follow our own levels and adjust as necessary.

Try to keep your hope alive. I know it seems like forever. I was diagnosed in 1999, and while I am “pretty normal” now, it took a very long time to get there. I won’t go into all the details. Just remember, you are always closer to well than you were when you were hyper.

Give yourself a break, ask others for help when you need it, and don’t give up on your treatment yet. There’s still time for it to be a success.

~Ski
NGDF Assistant Online Facilitator

[Anonymous]

#1077028

Ski,

You just depressed me. It’s a lonnnnnng time between 1999 and 2007. I had all hopes at the beginning of the year to be “close to normal” by summer, then I changed it to Christmas.

Oh well, that life!

[Anonymous]

#1077029

SORRY! I didn’t mean to imply that it took me until today to feel well! It’s been quite a while since I got to a point where I had energy, etc. etc. ~ I had a few “extra” hiccups that other people don’t have, too, so even if I gave you “the date,” it wouldn’t mean that is a date you can plan to. Everyone is different, and many people get to their “normal” much earlier than I did.

~Ski
NGDF Assistant Online Facilitator

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