[LillyL]

#1059810

I stopped Tapazole after my blood tests were in the normal range for months because I have gained too much weight. After a month and a half I am now experiencing feeling hot at times and the front of my neck feels tender and clammy
Any thoughts would be appreciated. Thank you:)

[vanillasky]

#1177766

Does your doctor know that you stopped it? I stopped it too but only after he told me to.

[SueAndHerZoo]

#1177767

We’re not doctors so it’s hard to say but when I was taken off Tapazole a few years ago it was a S L O W wean off of it, right down to breaking a tiny 5 mg. pill into 4 pieces. I was down to eating crumbs and dust at the end. LOL

You say your levels had been in the normal range for a few consecutive months but were you feeling ideal? Being in range and feeling good are not always one in the same so maybe it wasn’t the right time to stop?

In any event, if you’re already relapsing it’s very unfortunate….. you’ve only had 6 weeks of remission. If I were you I’d have some blood drawn to see where your levels are and then ask your doc where you should be with the meds. Maybe if you nip it in the bud you can stop this in its tracks before the symptoms start bringing you down.

Good luck!
Sue

[Kimberly]

#1177768

@LillyL – Agree with Sue that getting a set of labs would be a good idea to see where your levels are. You might also talk to your doctor about the antibody testing (TRAb). The latest medical guidance (which you can find in the “Treatment Options” thread in the announcements section of the forum) notes that patients who still have elevated antibody levels are more likely to relapse after withdrawal of anti-thyroid drugs.

I *totally* hear you on the weight frustrations, as this has been a huge issue for me since my diagnosis. (I used to lead meetings for Weight Watchers and had to quit when my own weight became such a struggle). However, our #1 priority needs to be getting our levels stable…and keeping them there. There are just too many risks to remaining in a hyperthyroid state and not receiving treatment.

Take care!

[Raspberry]

#1177769

Kimberly wrote:

@LillyL – Agree with Sue that getting a set of labs would be a good idea to see where your levels are. You might also talk to your doctor about the antibody testing (TRAb). The latest medical guidance (which you can find in the “Treatment Options” thread in the announcements section of the forum) notes that patients who still have elevated antibody levels are more likely to relapse after withdrawal of anti-thyroid drugs.!

How do you get TRAb testing? I asked my endo and she said they didn’t do it. There isn’t a checkbox for it on the lab form they use though there is one for TSI and Thyroglobulin antibody testing. I went to some of the private lab tests sites and they don’t have it either. Am I asking for it by the wrong name?

And LillyL, yep odds are the tapazole was holding things steady but once you stopped it the antibodies were free to get back to their troublesome business. Sorry though I know that’s got to be disappointing.

[adenure]

#1177770

I agree- get labs done. Also, do tell your doctor and see what he/ she would have you do now.

[Kimberly]

#1177771

@Raspberry – Here is a page from the Mayo Clinic that lists some alternate names. I just went through my own lab results, and my lab actually uses the one labeled TBII.

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.mayomedicallaboratories.com/test-catalog/Overview/81797

Take care – hopefully, you will have success with one of these!

[LillyL]

#1177772

Thank you all for your help. I am back on Tapazole 5 mg we will see if thngs settle down. Take care now.

[Raspberry]

#1177773

Lilly I hope being back on the tapazole works out okay. Thanks Kimberly for the web page maybe I can print it out and bring it to my endo so she’ll see what I’m talking about.

[Naisly]

#1177774

I am a little confused Kimberly, you said,

Quote:

…and my lab actually uses the one labeled TBII.

TRAb measures Graves’ antibodies including TSI and TBII.

It is my understanding these are different antibodies.

1. TSI stimulates hormones.
2. TBII blocks hormones and suppress TSH.

So why are you just getting TBII test done and not the other?

[Kimberly]

#1177775

This link from Quest Diagnostics explains the TBII test…TBII is not the same as TSBab. It measures all antibodies that are competing for space with TSH on the TSH receptors:

http://www.questdiagnostics.com/hcp/intguide/EndoMetab/EndoManual_AtoZ_PDFs/TBII.pdf

[Naisly]

#1177776

I see. I was just curious on why not the TRAb since it does 3 tests and TBII does 2. btw, yes I do know what the tests are, I was just curious on why you were getting that particular one done.

[Kimberly]

#1177777

My doc orders TSI as a separate test. It could just be the way that particular labs work.

The Mayo Clinic link above also uses TRAb and TBII interchangeably.

[Naisly]

#1177778

Ah ok, cause I was thinking about you paying that outrageous price for your test. Maybe that is why it is so expensive? I mean, the $95 price I got was for TSI only.

[Author]

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