# 90 MG Tapazole a day



## katbid23 (Oct 20, 2010)

okay some of you have read my other posts with the details of my disease. Brief summary:
Toxic Multinodular Goiter, Graves disease, and I have one cold nodule. My last TSH was 0.006 and don't remember off the top of head what the rest of the labs were.

Endo said I have to have Total Thyroidectomy. He has put me on 90mg of Tapazole a day. I have been taking this for 2 and half weeks now. I have not been able to find any case studies where people take this high dosage. 
I am experiencing weight loss (kind of glad about that part) but I have lost about 5 pounds since starting the meds. I am always nausiated and have headaches every day. If I had a choice, I would stay in bed all day everday and sleep. I don't go back for labs until the 24th of Nov.

Has anyone experienced anything like this?

I'm wondering if I should try to get in sooner for labs or just wait it out.

Thanks


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## Andros (Aug 26, 2009)

katbid23 said:


> okay some of you have read my other posts with the details of my disease. Brief summary:
> Toxic Multinodular Goiter, Graves disease, and I have one cold nodule. My last TSH was 0.006 and don't remember off the top of head what the rest of the labs were.
> 
> Endo said I have to have Total Thyroidectomy. He has put me on 90mg of Tapazole a day. I have been taking this for 2 and half weeks now. I have not been able to find any case studies where people take this high dosage.
> ...


When are you scheduled for the thyroidectomy? That is a very high dose of Tapazole and I am sure the doc has his reasons but since you do not feel well, I believe it would be in your best interest to at least call the doctor.


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## katbid23 (Oct 20, 2010)

I haven't been scheduled yet. He wants me to come in on the 24th for labs and then my appt with him is on the 2nd of Dec. He said he would send me to a surgeon after the 2 Dec appt. If my levels were okay. I guess I'm concerned about the dosage and also the fact that he only gave me enough for 30 days. I don't know what to expect when I go off of the meds and have to wait a long time for surgery. I'm just tired of feeling yucky. And worried about all the possible side effects. I think the worse part of all of this is the fact that I sound like a hypocondriac (not sure of spelling).


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## Andros (Aug 26, 2009)

katbid23 said:


> I haven't been scheduled yet. He wants me to come in on the 24th for labs and then my appt with him is on the 2nd of Dec. He said he would send me to a surgeon after the 2 Dec appt. If my levels were okay. I guess I'm concerned about the dosage and also the fact that he only gave me enough for 30 days. I don't know what to expect when I go off of the meds and have to wait a long time for surgery. I'm just tired of feeling yucky. And worried about all the possible side effects. I think the worse part of all of this is the fact that I sound like a hypocondriac (not sure of spelling).


You are not a hypochondriac. Tapazole has it's own side-effects. Sadly, sometimes we have to trade one bad thing for another.

SIDE EFFECTS OF TAPAZOLE
Major adverse reactions (which occur with much less frequency than the minor adverse reactions) include inhibition of myelopoieses (agranulocytosis, granulocytopenia, and thrombocytopenia), aplastic anemia, drug fever, a lupuslike syndrome, insulin autoimmune syndrome (which can result in hypoglycemic coma), hepatitis (jaundice may persist for several weeks after discontinuation of the drug), periarteritis, and hypoprothrombinemia. Nephritis occurs very rarely.

Minor adverse reactions include skin rash, urticaria, nausea, vomiting, epigastric distress, arthralgia, paresthesia, loss of taste, abnormal loss of hair, myalgia, headache, pruritus, drowsiness, neuritis, edema, vertigo, skin pigmentation, jaundice, sialadenopathy, and lymphadenopathy.

It should be noted that about 10% of patients with untreated hyperthyroidism have leukopenia (white-blood-cell count of less than 4,000/mm³), often with relative granulopenia.

http://www.rxlist.com/tapazole-drug.htm

I do hope you call your doctor as he may wish to decrease your dose.


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## tina (Sep 17, 2010)

Hi Kat! I was dx with Graves this year and was first put on 150mg (I think) of Tapazol. I konw it was a pretty high dose. I was on this for about a month and then developed an alergic reaction to it. Now I am on 100mg of PTU 2x daily. I am scheduled for my TT on the 23rd of this month. Hang in there. After a few weeks of being on the meds I finally began feeling like myself (if only a little) I still have alot of the tiredness but for the most part I am feeling better. You have to be on a higher dose to get your body ready for surgery. If you don't then you risk the possibility of a Thyroid Storm during or after surgery. Hang in there. I promise it does get better!!!


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## Andros (Aug 26, 2009)

tina said:


> Hi Kat! I was dx with Graves this year and was first put on 150mg (I think) of Tapazol. I konw it was a pretty high dose. I was on this for about a month and then developed an alergic reaction to it. Now I am on 100mg of PTU 2x daily. I am scheduled for my TT on the 23rd of this month. Hang in there. After a few weeks of being on the meds I finally began feeling like myself (if only a little) I still have alot of the tiredness but for the most part I am feeling better. You have to be on a higher dose to get your body ready for surgery. If you don't then you risk the possibility of a Thyroid Storm during or after surgery. Hang in there. I promise it does get better!!!


What nice words of encouragement for our poster. Thanx, Tina.


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## katbid23 (Oct 20, 2010)

Thank you Tina and Andros. It does make me feel better knowing someone else took such a high (or higher) dose than I am. This is such a difficult process to go through and it is even more harder when your unable to relate with people that have experience with this. I had military duties this past weekend and a MAJ showed up at my desk wanting to talk to me. He said that he had heard I was having thyroid issues. Well he goes on to explain that he had his thyroid removed in Jan. So of course, I turn my gaze to his neck area. Well he had a scar from the bottom of his ear down to the middle of his neck. I was like "oh hell no"! But he explained that he had cancer and it had went into the lymph nodes and the surgical procedure was done a little different than a normal TT. I guess I'm just ready to get this over with. But having words of encouragement really does make the difficult days a little brighter. I appreciate anyone that takes the time to just share their story in hopes of making someone else feel better. 
So thanks again
Tina, are they going to take you off of tapazole prior to your surgery? If so, how long do you have to be off?
Good Luck with your surgery! I hope your recover is swift and you are on the road to feeling normal again. I don't even know what normal is anymore.


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## tina (Sep 17, 2010)

I will take my meds right up to the morning before surgery. I will even take my Propranolol the morning of. I saw the surgeon yesterday, and he is fairly confident that we have caught everything early enough to just remove the thyroid (He doesn't think there is lymph node involvement) and that I should be back to my old self in a couple of months. He did say that he will not start me on replacement meds until I have gone completely hypo. That is kinda scarry but I just keep thinking it is only temporary and I will get better! Hang in there. If you need to talk I am here.


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## greatdanes (Sep 25, 2010)

Ohh, the surgery explains the dosage. I remember thinking your doc was crazy a few weeks ago when he prescribed that much, lol. How are you feeling?


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## lavender (Jul 13, 2010)

I think I was on 60mg tapazole day prior to my surgery. I was on the meds for like 3 months, took them up until the day before surgery as well. I didn't feel particularly well on the meds as was really relieved to have my surgery and get my sick thyroid out! I was not able to work at all, so I am amazed that you are up and about doing military duties! Just remember to take it easy as much as possible. Your body is going through a lot.

My TT scar is only like an inch and a half long, and is healing nicely at 3 months. Now that I have a thyroid issue, everyone shows off their thyroid scars to me, and everyone I see looks like it is healing well. Barely noticeable in a few years.

Good luck with your surgery!


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## katbid23 (Oct 20, 2010)

Thanks Lavendar. My Doc only gave me enough Tapazole for 30 days. I will be off of my meds for one week before I go take labs. Do you think I should ask him if I am suppose to get a refill? This 30 day was already broken down into one initial bottle with two refills. I hate not having all this questions while I'm sitting in his office. And it is next to impossible to just call and actually get to talk to someone. 
Trust me, I would rather stay home. Unfortunatley I just had a partial hysterectomy in July, so I am trying to build leave back up so I can have this surgery. I can't tell you how many times I have missed an exit either going to work or going home from work. My brain just doesn't work the way it should. When I get home I just want to take a nap (and I usually do). I have been raising my 3 year old grand daughter since she was 8 months old. There really isn't time to rest too much.


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## lavender (Jul 13, 2010)

I would call the doc and ask for a refill. I can't imagine why he would have you on such a high dose and suddenly stop. It may be that he made an oversight in writing the script, and it's worth the phone call to ask.
It is hard to ask all the questions when we are in a doc's office, and sometimes they are so rushed that it's hard to ask the questions we have!

I can totally relate to having a hard time getting through to a doc's office on the phone, especially with my endo's office. It usually takes several days to get anything resolved, and can be very frustrating in the meantime.

I admire all you are trying to do, and just want to encourage you to do the best you can to take care of yourself. It is completely normal for your brain to not be functioning normally when you are hyperthyroid and even when your thyroid levels are shifting. You have a lot on your plate, especially with a 3 year old relying on you. Just remember that you don't have to be superwoman.


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## katbid23 (Oct 20, 2010)

Found out that 90mg of tapazole was too much. Dropped by T4 too fast. So now I'm on 60mg and scheduled for TT 31 Dec. Happy New Year! I will be so glad when all this is over. I wish everyone a Merry Christmas and a Very happy and safe New Year


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## Andros (Aug 26, 2009)

katbid23 said:


> Found out that 90mg of tapazole was too much. Dropped by T4 too fast. So now I'm on 60mg and scheduled for TT 31 Dec. Happy New Year! I will be so glad when all this is over. I wish everyone a Merry Christmas and a Very happy and safe New Year


Good for you on the surgery date. I do hope you know that you will be in my thoughts and prayers.

The surgeon had to make sure you won't dump (thyrotoxicosis) during the surgery so it sounds like you are good to go.

You will be so glad to have this over with and I sure don't like that cold nodule so I personally will be anxious to hear the lab report if you care to share when that happens.


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## lavender (Jul 13, 2010)

Glad to hear you have a surgery date scheduled. My thyroid was pretty suppressed before my surgery, and I had no dump during my surgery. I was able to stop all my heart meds the morning after surgery, and it was pretty wonderful! What a great way to start the new year!


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## katbid23 (Oct 20, 2010)

Thanks for thoughts and prayers. I will be sure to update you on my path report. The surgeon said I wouldn't have the results until about 72 hours after surgery. Since they are taking the whole thyroid anyway, they don't do the path during the procedure. I have learned to be more patient during this whole ordeal. I"m getting pretty good with waiting in between procedures and appointments.


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## katbid23 (Oct 20, 2010)

Good Morning and I hope everyone had a wonderful Christmas. My thyroidectomy is coming up on Friday. I'm getting very nervous. My husband is a wreck right now. I don't think the procedure itself that is so nerve wrecking. I think it is the results that come later. I was suppose to start taking SSKI drops last friday to prepare for the surgery. I tried them once and decided that the surgeon will have to work with what he gets. I'm not taking those drops. They are nasty and they burn. It's like drinking a cleaning agent or something. Of course my family isn't happy about me going against his orders, but I feel like I made the right decision. So HAPPY NEW YEARS to everyone and I hope the 2011 brings health, peace, and love to all!


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## Andros (Aug 26, 2009)

katbid23 said:


> Good Morning and I hope everyone had a wonderful Christmas. My thyroidectomy is coming up on Friday. I'm getting very nervous. My husband is a wreck right now. I don't think the procedure itself that is so nerve wrecking. I think it is the results that come later. I was suppose to start taking SSKI drops last friday to prepare for the surgery. I tried them once and decided that the surgeon will have to work with what he gets. I'm not taking those drops. They are nasty and they burn. It's like drinking a cleaning agent or something. Of course my family isn't happy about me going against his orders, but I feel like I made the right decision. So HAPPY NEW YEARS to everyone and I hope the 2011 brings health, peace, and love to all!


Thank you for the "reminder" about 12/31!! You will be in my thoughts and prayers.

I do hope you tell the surgeon you did not take the Lugol's Solution so that he/she can be prepared.

Can't wait to hear from you in the New Year as to how you are doing; even if you have to crawl to the PC!! LOL!! Just joking, of course.

I wish you the very best and you will be so glad to have this all behind you.


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## lavender (Jul 13, 2010)

Sending you prayers for a successful and smooth surgery.

Mine was in August, and New Years Eve had me feeling better than I have been all year. Had enough energy to go out for the countdown and fireworks. I was dancing and crying at Midnight thinking about all I have lived through in 2010. I had looked up info on all the buses to get me closer to my destination than the subway could get me, but ended up just walking because I felt sooooo good! I think I was already hyper last December and could remember what a royal cranky pain in the butt I was last year! It is truely amazing what this little bitty thyroid can do to us.

I am very hopeful for my continued improvement in the New Year, and believe you too will feel much better after your surgery. Give yourself time, and the healing will come.

I was never told to take SSKI drops before my thyroidectomy. I am not sure why some people are told to take it while others are not. I wouldn't be too hard on yourself if you can't stand it. Perhaps your body is just intolerant. Just make sure you let the surgeon know.


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## katbid23 (Oct 20, 2010)

Good Morning to all. My surgery itself wasn't too bad. It did take a couple hours longer than anticipated. I am still sore and wish I didn't have to take the pain pills any longer. I saw my Endo Wed and the results were not so good. 
The right side of my thyroid was only enlarged and was removed with no complications. The left side was not so good:
Left side Lobectomy: Two Foci of Papillary Carcinoma. The largest lesion represents a well differentiated follicular variant of papillary carcinoma and the small lesion represents a well differentiated classic papillary carcinoma.

So my endo has reffered me to an oncologist. My surgeon has already called me and wants to see me today. I'm so affraid that he is going to want to operate again. He did not remove any of my lymph nodes during surgery. My endo said they weren't expecting cancer. He said it is very rare to have Graves and cancer. And then to have two types of cancer is even more rare. So all I know at this point is I will have to have the radiation treatment and a full body scan. My mind is still absorbing all of this. I was really looking forward to feeling better soon. I guess it will just be a little longer road to travel before that happens. I just hated seeing the reaction on my family's face when the "C" word came out. Does anyone have any experience with these types of cancer? What is the prognosis? I'm scared!


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## Andros (Aug 26, 2009)

katbid23 said:


> Good Morning to all. My surgery itself wasn't too bad. It did take a couple hours longer than anticipated. I am still sore and wish I didn't have to take the pain pills any longer. I saw my Endo Wed and the results were not so good.
> The right side of my thyroid was only enlarged and was removed with no complications. The left side was not so good:
> Left side Lobectomy: Two Foci of Papillary Carcinoma. The largest lesion represents a well differentiated follicular variant of papillary carcinoma and the small lesion represents a well differentiated classic papillary carcinoma.
> 
> So my endo has reffered me to an oncologist. My surgeon has already called me and wants to see me today. I'm so affraid that he is going to want to operate again. He did not remove any of my lymph nodes during surgery. My endo said they weren't expecting cancer. He said it is very rare to have Graves and cancer. And then to have two types of cancer is even more rare. So all I know at this point is I will have to have the radiation treatment and a full body scan. My mind is still absorbing all of this. I was really looking forward to feeling better soon. I guess it will just be a little longer road to travel before that happens. I just hated seeing the reaction on my family's face when the "C" word came out. Does anyone have any experience with these types of cancer? What is the prognosis? I'm scared!


We now know this is not rare. Graves' and Hashimoto's patients have a higher propensity for cancer. I am so sorry to hear this but I think ultimately you are going to come through this quite well.

Please read this and you may wish to forward this to your surgeon.
http://www.thyroidmanager.org/Chapter18/18-cancothr.htm

I sure hope you don't have to have another surgery. Perhaps they will biopsy lymph nodes and find good news there and then have you take RAI to completely zap out all thyroid tissue.

Did you have Thryoglobulin and Thyroglobulin Ab lab tests done prior to the surgery?
http://qjmed.oxfordjournals.org/content/59/2/429.full.pdf

Keeping you in my thoughts and prayers.

And sending hugs too,


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