# New to board - would very much appreciate some help



## rachele (Oct 29, 2010)

Quick history:

First diagnosed with hyperthyroid about 7 years ago. First episode occured during very stressful time (gave birth to twins born early, in nicu). Endo diagnosed Grave's. Took tapizole for 1 year - had labs in normal range - discontinued tapizole and was fine for a year until another high stress situation - became hyper again. Another year on Tapizole, discontinued tapizole and was able to remain normal again for several years. Labs began to indicate I was trending back to hyper - so the Endo finally convinced me that RAI was necessary. That was October of last year (a year ago this month). I have felt terrible since and have swung back and forth between severely HYPER (just after the RAI) to severely HYPO (after endo put me on high dose of tapizole in response to the hyper after RAI). Stopped the tapozole and started .125 mcg synthroid - which resulted in hyper - have been slowly lowering the dose for the past few months - most recently taking .75 synthroid. 6 weeks ago I was diagnosed with TED (which had never been a problem up to this point). I became frustrated and still felt hyper and stopped taking the synthroid (out of sheer frustration from the maddening roller coaster i felt i was on!). I just felt like the endo had no idea what he was doing and i wanted to see where i would land if taking no meds at all. 13 days after stopping synthroid - i was at my PCP for a physical and asked her for thyroid labs - I asked her to do whatever she would normally do but to add antibody testing as well. I really had no idea what to ask for - just wanted some information about what was happening. Here are those results and reference ranges. I will add that as a result of these labs, PCP suggested 100mcg synthroid and repeat labs 6-8 weeks. Thank you for any insight you can provide. Also, when i return for next labs - are there other labs i should be asking for?

Anti-Thyroglubulin Ab DT Result = 579 Range 0.00-40.00
Anti-TPO Ab DT Result = 813 Range 0.00-35.00
TSH Result = 36.08 Range 0.34-4.82
FT4 Result 0.50 Range 0.59-1.61
Free T3 DT Result 3.48 Range 1.50-4.10

If it matters - my Vitamin D was also low (25 with reference 30-100) so PCP suggested 3000IU Daily of D3.

Thanks again for any information you can provide.


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## Andros (Aug 26, 2009)

rachele said:


> Quick history:
> 
> First diagnosed with hyperthyroid about 7 years ago. First episode occured during very stressful time (gave birth to twins born early, in nicu). Endo diagnosed Grave's. Took tapizole for 1 year - had labs in normal range - discontinued tapizole and was fine for a year until another high stress situation - became hyper again. Another year on Tapizole, discontinued tapizole and was able to remain normal again for several years. Labs began to indicate I was trending back to hyper - so the Endo finally convinced me that RAI was necessary. That was October of last year (a year ago this month). I have felt terrible since and have swung back and forth between severely HYPER (just after the RAI) to severely HYPO (after endo put me on high dose of tapizole in response to the hyper after RAI). Stopped the tapozole and started .125 mcg synthroid - which resulted in hyper - have been slowly lowering the dose for the past few months - most recently taking .75 synthroid. 6 weeks ago I was diagnosed with TED (which had never been a problem up to this point). I became frustrated and still felt hyper and stopped taking the synthroid (out of sheer frustration from the maddening roller coaster i felt i was on!). I just felt like the endo had no idea what he was doing and i wanted to see where i would land if taking no meds at all. 13 days after stopping synthroid - i was at my PCP for a physical and asked her for thyroid labs - I asked her to do whatever she would normally do but to add antibody testing as well. I really had no idea what to ask for - just wanted some information about what was happening. Here are those results and reference ranges. I will add that as a result of these labs, PCP suggested 100mcg synthroid and repeat labs 6-8 weeks. Thank you for any insight you can provide. Also, when i return for next labs - are there other labs i should be asking for?
> 
> ...


It sure does not sound like your thyroid was completely zapped. I had RAI 3 times.

It would be my recommendation that you get RAIU (radioactive uptake scan) to see what is going on and I personally don't like the high titer of Thyroglobuin Ab which could be suggestive of cancer.

To be honest w/ you, there must be active thyroid tissue because of the high titers of antibodies and once again; Both TPO and Thyroglobulin Ab in high titers means that cancer needs to be ruled out.

http://www.thyca.org/thyroglobulin.htm

Welcome and I am sorry you are having such a hard time of it. I hope we can be of a help to you.


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## rachele (Oct 29, 2010)

Thank you Andros.

i did have an uptake scan done when this all began (7 years ago) - and also had one done prior to the RAI (or at least i believe i did!) last year - but do you think it would be justified for me to call the endo and ask for (demand?!) another ASAP? IF so I will do that today.


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## Andros (Aug 26, 2009)

rachele said:


> Thank you Andros.
> 
> i did have an uptake scan done when this all began (7 years ago) - and also had one done prior to the RAI (or at least i believe i did!) last year - but do you think it would be justified for me to call the endo and ask for (demand?!) another ASAP? IF so I will do that today.


Oh, yes for if the RAI did not zap all your thyroid gland, you will have uptake. You see? I know you do so yes, please request this. Also, if you have any cold nodules they will show up.

It makes me wonder about the RAI for they say cold nodules do not uptake isotope. Which is why perhaps we are left w/ incomplete results w/ RAI? I am wondering.

If I could do it over, I would have had the surgery for I will never know if I had cancer or not. Way back then, I was not given an option. It was RAI or nothing.


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