From: Christine
T1: tnccline@nemonet.com

Hi Darlene -

I've been on Tapazole for almost 22 years. Several people from this board have been on antithyroid meds for several years.

Most people never have a problem with it. In fact, 40 to 50 percent of people who take AntiThyroid Drugs (ATD's) achieve remission after a year. That means it straightens out the thyroid disorder and they no longer need the medication.

The warnings of possible side effects are for your protection. There are rare cases where Tapazole will not be tolerated by a person's system.

There is a disorder called agranulocytosis, where the white blood cell count drops (an unusual reaction to the immunosuppressive action of the medication). The symptoms of this are sore throat and fever, etc. If you're going to develop this at all, it will usually occur within the first few months of starting this therapy. After that, there is very, very little chance of this happening. You need to get a CBC (complete blood count) every few weeks at first to check for this.

The liver enzymes CAN become elevated with this medication, but again, most people have no problems with this at all. You just get a liver profile twice a year. The liver processes all medications, toxins, etc. I understand the 2 main enzymes that might possibly be affected are AST (SGOT) and ALT (SGPT).

Tapazole inhibits the production of thyroid hormone. Also, as an immunosuppressant, it helps curb the antibodies that are attacking the thyroid. Did you have any antibody tests run? There are 4 main ones:

TSI - Thyroid Stimulating Antibodies (specific to Graves')<br>TSH Receptor antibody<br>TPO - Anti-thyroid peroxidase (or microsomal) antibodies<br>Anti-Thyroglobulin antibodies<br>

While you are first starting the medication, get your thyroid levels checked at least every 3 weeks to find the proper dosage. Become familiar with the signs of low thyroid, so you will know if it's time to lower the dosage of Tapazole. Do NOT let the doctor run JUST the TSH (pituitary) test, because it is a poor indicator of thyroid function. It has a lag time and it's useless in determining what your thyroid is doing.

Give the Tapazole a try. If it doesn't agree with you, ask for the other ATD, called PTU. I take mine at night with the dinner meal. I've been on a low maintenance dosage for several years now, and still hope to someday go into remission.

Don't let the doctor scare you out of at least trying the medication route for a while. You can take that while reading and learning all you can on this website. Lots of people are having success with correcting nutritional deficiencies, eliminating toxins, and practicing relaxation techniques. It takes hard work and dedication, but it's well worth it to be healthy again.

One more note: If your doctor tries to force you into RAI (RadioActive Iodine) or surgery, get another doctor, and another.... until you find one you like. Unfortunately doctors who are open-minded and competent in thyroid disorders are not that plentiful. Just use them for lab work and prescriptions until you can get your system straightened out and hopefully overcome this disease.

If you have any questions at all, don't hesitate to ask on this board, or email any of us individually if you want. We're all in the same boat here.

Best of luck to you, Chris

Greetings everyone.

Once again, I am looking for advice about my blood test results, on the eve 
of my next (now monthly) visit with the endocrinologist. I read Kims' post 
(below) and noticed that your lab results Kim, are very similar to mine... 
we seem to be at the same stage of the game (ignoring my neutrophil stuff). 
I really don't think you'll get thyroid storm if you are taking ATDs... are 
you still on beta blockers? Are you still getting racing heart?

I am guessing that this is a pattern then, that your FT4 drops before your 
FT3 in response to your ATDs?

I had these blood tests taken last week. I have been feeling tired and (as 
I frequently complain here) have gained a lot of weight. I thought I would 
be fully hypo by now on my 60mg of Carbimazole per day, but my blood test 
results show that my thyroid is slowly moving through hyper to normal and on 
to hypo.

These are the thyroid results:

2nd March 2001:
FT3 4.7 (3.5-6.5) NORMAL
FT4 *9 (10-20) LOW (hypo?)
TSH *0.01 (0.35-5.00) LOW (hyper?)

The comment below these results is “consistent with treated hyperthyroidism”

Previous blood test results:

31st January 2001
FT3 6 (3.5-6.5) NORMAL
FT4 17(10-20) NORMAL
TSH (undetectable) LOW

02/01/01
FT3 *10.9 (2.5-7.2) HIGH
FT4 *30.7 (8.0-24.0) HIGH
TSH <0.01 LOW

I am guessing that my endocrinologist will want to keep me on the full dose 
of Carbimazole because I have not yet gone fully hypo and she hinted last 
time that this is what she was aiming for - she seems to want to see some 
TSH before she will adjust my dose.

My opinion is as follows: I think that where I am now is “hypo” enough…

My FT3 is within normal range (hooray!!) and I think I’m right in believing 
that to be the most active hormone (???) and the one that will be most 
responsible for making me feel how I feel. I would prefer it if I could 
manipulate my dose to maintain some level of “normal” for that result in 
particular.

My FT4 is below range, so my FT3 is presumably due to drop some more even if 
I do drop my 60mgs down a bit as the FT4 is what my body is going to be 
making FT3 out of. (Am I oversimplifying that too much??)

My TSH is still undetectable which is a bit of a worry as it’s been a while 
– thought it might just be lifting a little by now. I know TSH can lag well 
behind the FT4 and FT3 by a month or two and think this is what is still 
happening??

However.. the idea that ATDs give the thyroid gland a chance to rest nags at 
me, maybe I should just go hypo and rest my weary neck!!?

I’m not sure what to do, whether to accept what she says and just carry on 
with the high dose, (assuming that’s what she does say) or try jiggling the 
dose myself - my sore throat would probably tell me when I go the dose 
right!

I KNOW John's really on to something here with the Copper as it does make me 
feel better really quick. I'm such a wuss though... all my digestive 
problems from pre-diagnosis "hell year" have returned and I am very wary of 
fiddling around with supplements as my stomach is so sore and bloating all 
the time anyway. I will get onto it though, just gently gently add in more 
supps. Considering trying CHINESE HERBS to address digestive problem... 
anyone else tried this?

The other thing I will mention to my endo is this complication with my
NEUTROPHILS…

I have had a sore throat since last time I saw the endo… Sure enough my FBC 
shows my neutrophil count has dropped back down again – here are the 
results:

2nd March 2001
Neutrophils: 1.6 (2.0-7.5)
WBC count: 303 (4.0-11.0) comment: “mild neutropenia”.

For comparison here are previous neutrophil results:
31/01/01 2.30 (2.0-7.5) (at this point, my Carbimazole was upped from 40 
to 60mg per day.)
02/01/01 2.30 (2.0-7.5)
30/11/00 *1.7 (2.0-7.5)

Prior to this I had a low neutrophil count since December 1999, which was 
probably due to Graves’ disease, but nobody medical seems particularly 
interested in this fact. I am quite concerned that I have had low 
neutrophils for so long...not sure it should worry me so much?

In this instance, I think it’s possible the Carbimazole dose might be just 
too high for me. My neutrophil count was (briefly) normal when I was on 
40mg of Carbimazole a day; it’s dropped since I started taking 60mg/day.

My endo says that we don’t react to ATDs according to the dosage; it’s an 
outright reaction to the thing itself so the dose doesn’t matter. Maybe 
that’s true of total agranulocytosis, but I definitely get a chronic sore 
throat on higher doses of Carbimazole and not on lower doses of it, unless 
the sore throat is caused by something entirely unrelated and has only a 
coincidental relationship to my Carbimazole dose.

The other possibility is that my neutrophil fluctuations are related to my 
spleen… my “digestive” upper left quadrant pain disappeared when my 
neutrophil count was normal – now it’s back again - can a low neutrophil 
count indicate a crook spleen? I know the spleen is important for the 
immune system - it could just be coincidence I guess.

WOW, this is far too long for an email – apologies, it all seemed relevant… 
I’ll send it anyway and hope you all skim read the guts of it and let me 
know what anyone thinks!

Thanks in advance for any help…
D.R.

Cytology report:

Subj: [hyperthyroidism] Medical Cytology Report!!
Date: 3/7/01 5:58:36 PM Pacific Standard Time
From: S.E.

Alrighty! Here is the story! .....After waiting 
until the 6th for the endocrinologist to let me know one way or 
another (without getting my friend in trouble), I decided to 
telephone the doctor's office that afternoon. They said the results 
were indeed in. I then asked for the results over the phone, but the 
secretary said it would be best if the doctor told me, however he 
wouldn't be in until the 8th. I could check with my family doctor as 
she would have the results too. I then asked the secretary when the 
endocrinologist got the FNA results and she said either Monday or 
Friday, which means my lab techie friend got to see the results 
before the doctor. Anyway, so I made an appt. with my family doctor, 
saw her this afternoon. Funny thing, the FNA results were not in my 
file, so she telephoned the endocrinologist's office and said she 
didn't have the results, so they faxed it to her. Lovely! After all 
this waiting around, why would the doctor say it would take 3-4 
weeks, and then get the results in like either Friday or Monday and 
not bother to let me know? If it wasn't for my friend, I would have 
been in the dark untl the 22nd of March.

Okay, enuff about that, I got the results from the medical cytology 
report. Clinical history: FNAB thyroid cyst procedure done on 
02/22/01. Description: 4 direct smears sent in. Microscopic 
interpretation (I need a dictionary for this one!!): The specimen 
reveals abundant histiocytes, hemosiderin laden macrophages and 
inflammatory cells as well as cellular debris. The material is 
consistent with cystic contents or coiter with cystic degeneration. 
Follicular epithelial cells are not present. Diagnosis: Thyroid, 
FNA - consistent with cystic contents. Date Printed" Feb. 27, 
2001. That means my friend read a report that had already been 
approved and printed the day before he accessed the records at the 
hospital where the health records are kept. It was a pathologist who 
authorized it.

Fabulous! It is just a little ol' cyst on the thyroid. Now if it 
can go away one of these days!

As for my TSH levels, I got two copies of my records. Both tests wre 
done before taking ATDs. The first test I will have while on ATD is 
on March 13th. The first one done Jan 18th was after waiting nearly 
2 months for a thyroid uptake/scan. 

T3=2.49 HI .89 where the normal range is 2.44nmol/L. 
T4=164. HI 63 where the normal range is 151nmol/L. 
TSH=<.003 LO .35 where the normal range is 5.0 mIU/L. 

The second one was done Feb 2nd after my thryoid uptake/scan was done.

T3=2.23 (no HI or LO given) .89 where the normal range is 2.44nmol/L
T4=161 HI 63 where the normal range is 151nmol/L
TSH=<.003 LO .35 where the normal range is 5.0 mIU/L

Can anyone tell me in plain English what this means? :-)

BTW, I haven't had any muscle cramps while taking 600mg of Calcium 
and 500mg of magnesium supplements. I have yet to take copper or 
potassium supplements because I can't get them here, and still 
waiting for them via an order from the net on a Canadian pharmacy 
website! I still love the heat and I can sleep all day if I didn't 
have an alarm clock. I seem to be the exception where I don't have 
any problems, not even with my periods, despite probably having 
probably been hyperthyroid for about a year now!

Subj: Re: [hyperthyroidism] Medical Cytology Report!!
Date: 3/7/01 7:19:27 PM Pacific Standard Time
From: Mooredaisyelaine@aol.com
Reply-to: hyperthyroidism@yahoogroups.com
To: hyperthyroidism@yahoogroups.com

Good news on your biopsy. There is no involvement of the active thyroid 
follicular cells, meaning they're not involved in your cyst formation. 
Thryoid follicular cells are the cells that make up your thyroid follicles. 
The tissue that forms your thyroid lobes is made up of follicles. (You can 
picture them as grape like structures held intact by a mesh of blood and 
lymph vessels. )The thyroid follicle cells which make up the follicles are 
the site of all the thyroid hormone synthesis and storage. There is also a 
capsule lining the thyroid tissue which is composed of thyroid endothelial or 
tissue cells. And there's a basement membrane composed of parafollicular or C 
cells. These cells secrete the hormone calcitonin. Your doc needed to rule 
out malignancies arising from the follicle and parafollicular cells.

Your cysts are made up mostly of white blood cells (macrophages) and basic 
endothelial or tissue cells (hemosiderin positive--refers to the stain used 
to tell what kind of cell this is).
So the origin of your cyst or cysts is an inflammatory process rather than a 
malignancy. Thyroid cysts or nodules trap iodine though, and they then cause 
the thyroid cells to produce excess thyroid hormone. 

Nodular goiter is what's responsible for the hyperthyroidism indicated by 
your abnormal thyroid function lab tests.