[ewmb]

#1068939

HI,
I only took 30 mg a day when I was on methimazole at first. I had started with PTU at 300 mg per day. I switched to the methimazole because I wanted RAI. I was taking to much and got up one morning and couldn’t stand up. The doctor on call said to not take anymore and then they cut my dose in half and then down from there. I felt really bad on the higher dose and my numbers were going down fast. Maybe you are on too much and they will cut your dose. As you say it’s all different for each person. Medicine is more art than science in my opinion.

ewmb

[Bobbi]

#1068940

Hi, Mongo:

Your Tapazole dose "kicked in" immediately, but it can take a bit of time before we feel results. The reason: the drug interferes with the production of "new" thyroid hormone. But the thyroid actually stores previously made hormone, too. That stored hormone gets released in response to the demands of the pituitary (TSH). So, until the stored hormone is used up, we do not feel results from the ATDs.

[mongo26]

#1068941

Thanks for the replies. Well I guess, based on Bobbi’s repsonse, I should expect similar results from my blood work as the last time. I’m definitely feeling more "Hyper" – I must have a lot of those hormones stored up.

I also haven’t kept track of my T3, T4, and TSH scores, which I will start doing tomorrow as well as getting my previous results. If anyone is curious…

-Mike

[ewmb]

#1068942

Mike,
It is a great idea to keep a spread sheet with your results. I had to point out to my endo last spring that there was a trend down in my numbers. He didn’t see it as he only had the last results on his screen when we were talking. It helped me get my treatment that I had been asking for.

ewmb

[Sue_Conard]

#1068943

Mike: I’ve been on 40 mg. of tapazole for more than a month & was still "hyper" last wk. so he increased me to 60 mg. I too don’t feel any different but hopefully will be early Sept. (my next appt). My Endo is frustrating me b/c he just wants to take the thyroid out surgically & I keep telling him NO, NOT TIL I EXHAUST ALL MY RESOURCES!! Once I do that, then I’ll consider it. I’m also on chemotherapy and will be until Feb. 10, so I’m thinking, in the back of my mind, it’s interfering with the thyroid right now. I’m trying to be PATIENT with everything, but it’s taking a toll. Good luck. Let us know how you get along.

[mongo26]

#1019062

Hey everyone,

I’m a little nervous today and I’m sure it will be worse tonight. I get my results from my bloodwork tomorrow morning when I meet with the Endo. I’ve been on 60mg/day of Tapazole since 6/8/09. I don’t feel any better – actually I feel a little worse. So, I’m not real hopeful that the tests will show much improvement. I did a little research online and from what I can tell 50-65mg/day is the maximum that is usually prescribed, so I wonder if my Endo will prescribe me a higher dosage or try something different like PTU. I don’t know. Anyone else take 60mg or more of Tapazole a day? If so, how long does it take to kick in – I thought it was supposed to take 6-8 weeks. I wish it was an exact science. :” title=”Question” />

Mike

[mongo26]

#1068944

Thanks, ewmb and Sue. I will definitely keep a spreadsheet (I deal with spreadsheets all day at work), I didn’t realize what this was going to be like, so I didn’t even think to keep track of my prior two tests.

Sue – yeah, I’m on the same boat. I’m a wimp and I want to keep my poor thyroid. So, I’m sticking to the meds until it works

[James]

#1068945

Mongo,

Let us know how your recent labs turn out, hopefully you will see some improvement. 60mg of Methimazole is definitely a fairly hefty dose of ATD. Your comment about “wanting to keep your poor thyroid”, doesn’t make you a wimp as you suggested. It means you have resolve and determination. Just trying to give you a positive spin. Keep us posted on your progress. . . . . hope you feel better soon.

Best regards,

James

[mongo26]

#1068946

Thanks, James. I do my best to stay positive. As should everyone else on here! ” title=”Very Happy” />

Here are my test results. They didn’t come down much at all, but he said it may take a little bit longer – since everyone responds to medication differently.

TSH: 0.005
Free T3: 7.39
Free T4: 2.120

The doc told me that he wants to keep me on the 60mg dosage of Tapazole, and he doubled the dosage for my Inderal (beta blocker) because of my racing heart beat and tremors. I have to go back in 6 weeks for another check up.

I know my results can be considered "severe" by some, but did anyone else have similar results?….and if so, were you able to go into remission?

Thank you very much

[James]

#1068947

Hi Mongo,

Different labs often use different reference ranges so it is difficult to determine where you are at based on your posted results. Your Dr. should be able to assist you with that I suppose.

I can tell you that my TSH levels were undetectable when diagnosed and it is still possible to achieve remission. For now though, you need to continue to work with your Dr. to achieve a euthyroid state first (normal thyroid levels), and in doing so hopefully dropping down to a much more manageable level of ATD in order to maintain those normal levels. You are very patient, continue to take one day at a time as you have been and keep being positive. I’m am curious to know if you are experiencing any side effects from the ATD?

Take good care of yourself,

James

[mongo26]

#1068948

No side effects at all….which makes this process a little easier for me.

Here is the range that he gave me:

TSH – should be 0.270 – 4.200….and mine is 0.005
Free T3 – should be 2.0 – 4.4….and mine is 7.39
Free T4 – should be 0.900 – 1.700….and mine is 2.120

My next appointment is 9/22, so I’ve got some work to do. Positive-Thinking is the key….I hope. ” title=”Wink” />

[Hopeful23]

#1068949

Mongo26,

Yes, staying positive is the best thing you can do. Hopefully you wll be better VERY soon. You have a strong attitude towards this whole process and although its harder more days than some try to recognize ANY improvements. It always helped me! Just remember to take days to relax ” title=”Wink” />

Hopeful23

[prknight]

#1068950

Hi!
I was diagnosed with Hyperthyroidism two months ago. At that time my TSH was 0.01 and Free T4 was 2.19. My resting heart rate was also 120. My doctor put me on a beta blocker. It took me 3 weeks to see a endocrinologist. I felt horrible! After a month and being on 30 mg of Tapazole, my levels are TSH 0.01 and Free T4 is .77. I responded well to the treatment, but it has now put me in Hypo. The doctor halved my dosage and I will have my levels checked in two weeks. I am now off the beta blockers and my pulse is back down in the 60’s I have lost a lot of hair through all of this. Have you all experienced hair loss? I am also have trouble concentrating and with memory. I am also wondering how long you all have taken the tapazole. This all scares me! I wonder if I should have done the radioactive iodine treatment. Are you satisfied with your treatment?

Thanks!
Pam

[runlacie]

#1068951

Hi Pam! That is great that you responded so well to the Tapazole. I think the hair loss is fairly normal as we go through the hormone swings from one extreme to another- I’d expect it to slow down once you are regulated. Mine fell out when I went hyper, but so far, so good, after RAI. haha, I’m kinda jealous that you are already hypo just 2 months after your diagnosis. I was diagnosed the first week in June (but had already spent about 2 weeks back and forth to the doctor) and they didn’t get around to rai until July 20. I’m still hyper, but think it’s slowly heading in the right direction. I keep second-guessing myself and thinking maybe I should have tried the pills first. I guess it’s just a case of grass is always greener, huh? Good luck with your treatment- I wish you a long remission!

[mrondinella]

#1068952

I was diagnosed with Graves’ disease several years ago, and have been taking Tapazole for the past 3 1/2 years. I am now 53. I am slightly hypothyroid (low free T4, normal T3) right now after taking between 15 and 17.5 mg/day, in two or three doses per day, since April 2009. Here is my personal experience: in February 2006, I was started on 20 mg per day, raised to 30 mg/day after 6 weeks, dropped to 20, then down to 15, all in a six month period. My FT4 fluctuated considerably, and I felt awful. Worse of all, I had a lot of muscle pain. This is my personal observation (please discuss any changes with your own doctor). Tapazole is a very powerful medication. In Europe, many doctors recommend starting with 15 mg/day and adjusting from there based on lab results and patient symptoms. For some patients like me, TSH alone may not be a good indicator of thryoid hormone levels. I still have very low TSH but am actually a little hypo right now. Be sure to ask to have your free T4 and free T3 checked along with TSH while your dosage is being adjusted. Secondly, try taking your tapazole in two or three increments per day. If you always take it with food, try to be consistent because food can affect how it’s absorbed in your GI tract. Be very compliant and consistent. If your doctor tells you to change your dosage, don’t try and do it in one or two days. Gradually decrease or increase your dosage. When I changed my dosage abruptly, I experienced extreme muscle pain because the thyroid hormones affect our muscles. At times, I had such severe pain and cramping, I couldn’t walk. But since I’ve made dosage changes gradually, this problem has gone away. If you need to cut your pills in pieces, you can buy a very inexpensive pill splitter at any pharmacy (I call mine my pill guillotine and it cost $5 at a discount store). Be diligent about taking your medication, be sure to get your free T4 and free T3 measured with TSH, and don’t make any abrupt changes in tapazole dosage all at once. Finally, because I am close to euthyroid on a fairly low dose of tapazole, I have opted not to do RAI or surgery at this time. Also, a final note: the main reason I was put on tapazole was because of fine hand tremor and elevated pulse/heart rate. For unrelated reasons (I became a platelet donor at my local blood bank), I also gave up caffeine about two years ago, and I am sleeping much better. (I was a caffeine fiend, drinking a lot of coffee and diet cola every day!) The hand tremor is gone, and my pulse rate is about 60 beats per minute. If you don’t have any other symptoms other than tremor and restlessness, in addition to Tapazole and beta blockers, you may also want to try cutting back or giving up caffeine. Best wishes to all of you.

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