[vanillasky]

#1059508

Hi All,

Back from Cleveland Clinic and started on Tapazole 10 mg. Anyone know what I should expect? Side effects?

I have standing order for blood work every 4 weeks for the next six months. Dr. is very nice and trying to put Graves in remission, but warned of blood problems? Unsure about this.

Also, he said longest remission for his patients has been 5 years. He mentioned that I will eventually have to get RAI.

Told me how Graves Rage has been very real in his office and it sure does have an effect on our emotions and how we think. He doesn’t believe in shrinks, he feels that Graves is what is talking, not us. I think he’s going to be a great doctor.

[snelsen]

#1175236

Glad you had a good experience, and like the endo! I suggest that if you find yourself feeling really different, either increasing symptoms of hyPER or new symptoms of hyPO, that you check that out with the endo, and possibly getting an earlier lab for that reason.
And, something very important, is that the “blood problems” are something that should be kept track of by labs, but a different lab than thyroid labs.
The CBC measures the white blood cells, red blood cells and some other stuff.

Although you are happy with your endo, I am surprised that he did not tell you some of the symptoms that you should know about, regarding the blood problems. The serious problems are very rare, but you should know what to watch for. Basically, if you get sick, and do not get better, it can mean that your white blood cells are being impacted by the ATD. This is called agranulocytosis.

But, as you know, we are all patients here, and most of us have been instructed about this by their endo, and/or read about it. It’s not alarming, but something you should be aware of. It is part of understanding all about the drug you are taking.

Here is a small conversation about it which I copied and pasted from the Cleveland Clinic, plus the website so you can read it yourself. I suggest that you call the office, and ask someone to return your call, asking what you should know, and if you should have AT LEAST (recommended) a baseline lab test of CBC (means cell blood count.)
Here they are:
This is one paragraph, followed by the website:
Minor side effects of antithyroid drugs include skin reactions, arthralgias, gastrointestinal effects, and sialadenitis. The most serious side effect is agranulocytosis, which has been reported to occur in 0.3% to 0.6% of cases. A baseline complete blood count is recommended, but further follow-up with differential white cell count in asymptomatic patients is not recommend. All patients should be instructed about this risk and told to stop the drug if signs of infection develop and seek urgent medical care. Other rare side effects include hepatotoxicty, vasculitis, cholestasis, hypoglycemia, and hives.

The site:
http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/endocrinology/hypothyroidism-and-hyperthyroidism/

The above paragraph is quite a ways down under Graves’ Disease, then treatment.

Also, it is partly semantics, but the ATD (tapezole) you are taking is an ANTI thyroid drug, and it gets us to a safe place, by blocking the crazy thyroid hormone production which makes us hyper. So it is the first step. But it probably is not correct to say that the drug gets you into remission. It gets you safer, so the three options of treatment, RAI, surgery and ATD’s can be considered. GEnerally, in the past, ATD’s were thought to have a limited time to be given, then one of the other two choices should be regarded as a treatment. Recently, in the past 5-10 years, several people, Kimberly, one of the faciltators, have chosen to continue on ATD’s. So she will probably write about that.
REMISSION happens now and then, but it means when you are NOT on ATD’s for Graves, and you still feel good, your labs are good, and it’s ALL good. But most people do not have a remission, and if they do, Graves’ can come back.

Hope this is not too much information, but you were wondering about side effects of your meds and related issues. You can also go to the pharmacist where you got tapezole, and ask them about side effects, and the ones you should be concerned about.
Welcome to the club, you will find a lot of help and a lot of friends here.
Shirley

[vanillasky]

#1175237

thank you so much for all the information!!!! He didn’t explain the technical stuff but told me he has had very few patients have severe side effects.

I will take your advice and have them check the CBC. He wants to wait one month as long as I tolerate this med well. Just started today so we will have to take it one day at a time/ So far they have been the best doctors I have been to seeing where I live, I was misdiagnosed for years!!!

I appreciate ALL you have written, Shirley. Thanks!!!!!!!!!

[PolishTym]

#1175238

I see you’re from upstate NY. Hopefully you aren’t still there, because that is a haul to Cleveland. And Erie has poor weather half the time!

[Kimberly]

#1175239

Hello – Yes, as Shirley mentioned, I have been taking methimazole for 5+ years. Just a quick clarification on remission…

Endocrinologists define remission as a period of one year or more where the patient maintains stable thyroid hormone levels without *any* medications. The statistics vary, but around 30% – 60% of patients who choose anti-thyroid drugs as their treatment option will experience remission. The latest medical guidelines recommend testing antibody levels (TRAb) prior to withdrawing anti-thyroid drugs like methimazole, as patients with low antibody levels have the best chance for remission.

For patients who come out of remission, the latest medical guidance leans towards surgery or RAI, but does leave the door open for a subsequent round of anti-thyroid drugs, if that is the patient’s choice. We have one facilitator here (James) who is in a 9+ year period of remission after I believe 3 rounds of anti-thyroid drugs.

Take care!

[StacyA]

#1175240

PolishTym wrote:

I see you’re from upstate NY. Hopefully you aren’t still there, because that is a haul to Cleveland. And Erie has poor weather half the time!

I was going to ask that too. Did you feel there were inadequate doctors in upstate NY so you went all the way to Cleveland, VanillaSky? Id love to know who you saw so I can avoid them! lol

[StacyA]

#1175241

blah, double post

[vanillasky]

#1175242

Yes Stacey, to answer your question, very “stupid” doctors here in upstate!

I went to probably 6 endos and was mis-diagnosed with Hashimotos Thyroiditis when all the while, I was evolving to Graves’ Disease.

I have had 15 years of hyper and then hyp0, taken Synthroid off and on and was over-dosed on levothyroxine!

They don’t care to test anti-bodies. I NEVER had abnormal antibodies for Hashimotos. According to the 2 endos in Cleveland, they were always in normal range. However, my TSI, is 800!

Partially I blame this on the insurance company because antibody tests are very expensive and they don’t want to pay. However, Cleveland did extensive testing, so many vials of blood I was dizzy and found Graves’ disease.

I have wasted 15 years of my life being sick and worrying about what was REALLY wrong with me when it was Graves’ coming the whole time

If you would like to know who the looney doctors are, please PM me, I don’t think I should put names here. LOL!

Another rant I have is these doctors don’t know nothing about thyroid disease, they just know diabetes and they pay attention only to those with diabetes. Not fair for us thyroid people. We should have and deserve the quality of life we are entitled to.

Getting this diagnosis has given me mixed feelings. I know I am in for the “long haul,” but on the same token, it has given me peace finally finding out what is wrong with me and WHY I feel the way I do at times.

[StacyA]

#1175243

Sad but true there are so many bad or uneducated docs out there. You have to really shop around depending on where you live and often travel too. I’m hoping for the best with this new one… its nervewracking!

[vanillasky]

#1175244

Well, good luck, that’s all we can wish for. I’ve been to so many and they were all very uncaring and uninterested. Now I have to drive 4 hours one way to Cleveland OH to see top notch doctors that finally understand me and know what’s going on!!!!!!!!!!!!!

I feel like I’ve wasted a lot of time during these past 15 years. Been told everything from Carcinoid Syndrome and got tested 2 times for that, and also menopausal issues that ensued with all estrodial, estrone, and progesterone tests, testosterone testing, etc., I am so tired of all of this. I wish they would just blow up this stupid gland and end the nightmare!

[PolishTym]

#1175245

vanillasky wrote:

Well, good luck, that’s all we can wish for. I’ve been to so many and they were all very uncaring and uninterested. Now I have to drive 4 hours one way to Cleveland OH to see top notch doctors that finally understand me and know what’s going on!!!!!!!!!!!!!

Too bad you have to go that far, especially with UR and UB having medical schools in the region. But I once had a Buffalo doctor tell me I had a sprained wrist when it was really a fracture, so I believe it.

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