[Ann1960graves]

#1060038

After 4 weeks and symptoms worse I had tests done and they showed I was worsening so they doubled my meds of methmizole 10mg twice a day & 10 mg propranolol 4 times a day.

How long does it take to feel improved?

Thanks
kinda feeling desperate

[SueAndHerZoo]

#1179822

Wish I had an answer for you or at least something more encouraging, but I’m STILL trying to get my levels right and I’ve been at it since February. We started me on Methimazole 5 mg., then raise it to 7.5, then raised it to 10 mg, and now we’re trying 12.5. I go for bloodwork tomorrow to see if we’re there yet, but this has been four increases and we still can’t seem to catch up to it.

We WILL get there, but when? No clue. Patience is the key I guess.
Sue

P.S. Had to laugh at my “patience” comment — I’m going to a surgeon consult tomorrow to talk about having mine removed because I’m sick of being patient!

[flora]

#1179823

Hi Ann,
I’m still pretty new here, too, and have had the very same questions (and aggravations!) as you. (Feel free to read my posts, doing an author search under Flora – you’ll see how I practially hogged the forum early on, with my troubles. Although the topic title for each thread is listed many times, just one click on that title provides the whole conversation for that topic.). So many forum friends came to my support, and I am so grateful to them. My doctor started me on a low dose of Methimazole, called Tapazole here in Canada, 5 mg daily, on March 5th. While I expect it maybe did some good in blocking the production of new thyroid hormone, other forum friends explained to me the 4 to 6 week wait time for the excess stored hormone to be flushed out of the system. I was pretty miserable while I “not-all-that-patiently” waited. At 5 long weeks in, Doctor increased me to 15 mg daily (5 mg, 3 times a day). Again, 3-plus even longer weeks of “no better”. Then, finally, finally, at close to 9 or 10 weeks, I started to feel better. First, the interest in my old interests returned (had been finding it hard to get into anything, or even to be cheerful around friends and family – for months); then, some energy came back; now, a little more slowly, some strength and stamina are returning (tempting to push it, but I know to go slow), and Thank Heavens, the fatigue, shakies and joint/muscle pains have mostly subsided.
I had bloods drawn again just today, and will see next week what Doctor thinks re: dosage. I’ll be telling him how much more improved I feel, in case the TSH is still lagging – he is very good at considering patient input, and I feel lucky to have him. Hope this helps a little, and that you will start to notice some improvements, too, very, very soon.
Flora

[Boomer]

#1179824

Hey kids!

I’m sorry you’re not feeling any improvements yet. Blah blah blah patience right? Yeah I hear ya there. Patience is NOT my forte’. I know that feeling of desperation. Ugh. It’s hard for sure.

I’ll preface my comments with the fact that my case is “severe” so of course my dosage will be much higher than yours.

Upon leaving the hospital (I was diagnosed in the ER) I was initially put on 60mg/day of Methimazole (MMI) for the first four days. This is meant to “shock” my raging thyroid into quieting down. On the fifth day my dosage was dropped to half of the initial dose so it was lowered to 30mg/day. The side effects were pretty tough but I began to feel some body changhes at around the tenth day as the excess hormones began to flush out of my system.

I had blood drawn after the third week and due to my thyroid’s refusal to cooperate fully my dose was raised back up to 60mg/day. Again, around the tenth day, I could feel some changes in my body again.

I’m now five weeks down the line and although I’ve not felt any changes my numbers have finally dropped significantly enough that I am scheduled to take RAI two weeks from today provided the hospital has an opening. I’ll know for sure tomorrow.

Due to the severity of my case my Endo and I chose to treat it aggressively, deal with non-threatening side-effecs as they arose, and get this show on the road as they say. I was initially scheduled to do RAI in August but I saw no reason to drag things out- the sooner I could get my numbers down the sooner I can get on track to feeling normal again.

Mind you I’m a cash customer- there is no insurance company footing the bill or even part of the bill so both the doctor and myself felt that it made sense to hammer this pre-treatment out ASAP.

While I’m not suggesting that a long slow treatment should be avoided (we all have different health issues, different tolerance to side-effects, etc) perhaps a discussion with one’s Endo regarding ‘gentle” treatment vs. ‘aggressive’ treatment might be something to consider.

I’ve fetlt so bad for so long that I was willing to feel bad a little longer due to side effects rather than creep along gently. I’m most often able to seperate my mind from my body and tune out discomfort pretty well so I chose to really go after this now rather than play around all summer. I’m in otherwise good health and pretty strong (although I don’t feel too darn strong these days) and it was ultimately my choice as to how to pace myself.

I’ve prattled on so much- I’ll close now:

Talk to your doctor and let him know that you are not feeling improvement. Ask yourself if you are willing to feel more discomfort now so that you might feel better sooner. here is no “rght” answer- just things to consider. Most importantly, though, as I said above: be patient. This didn’t happen overnight therefore it’s not going to get better overnight. Plan for the worst but hope for the best.

Remember that many others have (crab) walked this road before us and that you WILL feel better if you keep doing your part: Eat well, drink lots of water, get rest, and take meds like clockwork. Hang tough and keep reaching out whenever you need to.

When I was diagnosed I have never felt more alone. To find you guys made such a difference in my mindset. It gave me hope and it gave me fellowship- I didn’t feel like I was the only one dealing with this mess any more.

Hang tough, stay positive (even if you don’t believe it- it still helps!) and grab ahold of whatever small victories you can find.

You can do this. WE can do this.

Peace and patience to you,

Boomer

[bigad]

#1179825

@Flora

Glad you’re seeing improvements Flora. I’m on my second week taking Methimazole (10mg daily)…and I’ve quickly learned that you have to have patience with graves disease treatment, which has been the hardest part for me. I just can’t wait to be able to exercise again.

[Kimberly]

#1179826

Hello – Most patients do start to see relief within the first few weeks of starting anti-thyroid drugs. However, each patient is unique, so it’s difficult to predict exactly when the meds will start to take effect. You’ve seen a nice range of stories above as to how the process can work for different individuals.

Hopefully, your doc has a follow up scheduled for you to evaluate the effect of this latest dosage change. And if your symptoms become *really* severe (such as excessive heart rate), don’t be afraid to call the doc’s office and/or visit the ER.

Take care!

[flora]

#1179827

@ bigad,
Thanks for your kind words – sending healing thoughts to you, too.
Flora

[snelsen]

#1179828

BOOMER!! YOU ARE THE BEST!!! Yay for you! HOpe there is an opening for your RAI! I hope your providers are as nice as they can be, re costs.

FLORA-So glad you have a good endo who listens. Money in the bank!!
The emotional and physical bank.

bigad, Sueandher zoo, and all of you! Patience, smatience! I was NOT patient. I was a hyperactive mess, wanting all of this to go away yesterday. For me, the surgical route was the best, cause it seemed the fastest.

Ann- I felt really better with Tapazole (mmi) at about 9 weeks. I counted every day. I was a mess. And very desperate. Very, very short tempered. NOt me at all. And very thin.
It was a midwest winter in Iowa, and I was so hot I opened the doors when it was 5 degrees below zero. So. So..HOT. Big tremor. Humonguous appetite.
And very irritable. Pulse in the 140 range. Not ok.

Shirley

[SueAndHerZoo]

#1179829

Boomer wrote:

I’ve prattled on so much- I’ll close now:

Boomer

Prattled????

Sue

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