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Confused about Hashitoxicosis dx and lab results

Graves disease hashitoxicosis Subclinical hyperthyroid hasitoxicosis graves disease sub-clinical hyperthyroid

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#1 Katiep0032

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Posted 02 December 2017 - 06:57 PM

Hi all- I am new to this forum and have been dealing with a thyroid diagnosis for about 8 months now (though I have been having symptoms for much longer). I have learned alot from reading other peoples stories of their journey on these boards and was hoping to share my story to see if anyone has any insight or advice. 

 

I saw my PCP 8 months ago with symptoms of recent weight gain (+12 pounds), severe fatigue, cold- intolerance and thinning hair. She (and I) thought that my symptoms were consistent with hypothyroid disease. She ran lab tests which came back instead as HYPER-thyroid. She was very confused with the lab results given my symptoms and decided to refer me to an endocrinologist for further treatment. 

 

APRIL 2017 :       T3 Free= 6.7 (2.3-4.3)              T4 Free= 2.5 (.8-1.8)              TSH= 0.01         TPO=37 (<9)          Thyroglobulin Ab= 4 (<1)

 

 

The endocrinologist diagnosed me with Graves disease (and later possibly Hashitoxicosis based on further antibody test results). He did not seem to care at all that I had no symptoms consistent with Hyper-thyroid and he wanted to start me on a Beta-blocker and Tapazole in order to reduce my thyroid levels. He also expressed that i needed to decide between my two options of either having my thyroid removed or having radioactive iodine. He thought I should make my decision soon given my age- I am a 32yo female who possibly wants to start a family in the near future he felt it was best to choose one of the options so that I could move on with having a family which would need to be delayed by about 1 year if I chose the radioactive iodine. He also told me to stop exercising and doing anything overly strenuous as I was at risk for thyroid storm given my labs and iodine uptake scan was very high.

 

JUNE 2017:        T3 Free= 8.2 (2.3-4.3)            T4 Free= 2.6 (.8-1.8)             TSH=0.0006            TPO=74(<9)              Thyroglob AB= 8(<1)          TSI = 443% (0-139%)

 

SIMILAR RESULTS IN SEPT (do not have the numbers in front of me but basically consistent) 

 

THYROID IODINE UPTAKE SCAN (SEPT)= 

              Thyroid: Enlarged gland with symmetric and homogeneous activity in both lobes. No dominant nodules.
 
              Uptake at 24 is 50.5%. (normal I believe was <25?) 
 
              CONCLUSION:Findings consistent with Graves disease. This would be amenable to radioactive iodine therapy if desired.
 
 

I expressed concern especially about the beta-blocker as my blood pressure and pulse have always run low- typical BP (96/68 p60). I was also worried that the Tapazole would make my fatugue, weight gain, cold intolerance ect worse and I decided not to start taking the medications. I discussed my concerns with my PCP who is an MD but also focuses on integrative medicine as well and she suggested instead that I try to make some changes in order to reduce my autoimmunity. She did sensitivity testing and started me on a strict gluten free/dairy free diet and also started me on high dose Vit-D, Vit-A, Fish oil and selenium supplements which I have been doing for the past 10 weeks. I have been feeling slightly better, but still have had pretty severe fatigue and continued weight gain. 

 

Yesterday I had my follow up with the endocrinologist and I had in the meantime made the stressful decision that I was going to opt for the thyroid surgery instead of the radiation treatment. I was expecting my blood work to be similar to what it had been  and for the endocrinologist to be angry when I told him that I had opted not to take the medications. However, to my surprise, my blood work somehow came back fairly normal T3/T4 with still low TSH. He is now saying that I do not need to take the medication or worry about the radiation/surgery option as he is saying I now have sub-clinical hyperthyroid disease. 

 

NOV 2017:          T3 Free= 3.0 (2.3-4.3)                                   T4 Free=  1.43 (.8-1.8)                          TSH= 0.012 (.450-4.5)

 

So anyways- that is my story. Sorry that it is so long- but I wanted to give all the details. I am still confused as my symptoms have stayed the same throughout and my lab results (as well as my anxiety related to the whole situation) has been up and down and all over the place. I still feel pretty terrible, get constant headaches and am exhausted with no energy after work each day and the my endocrinologists new plan of doing nothing is frustrating.  I would appreciate any advice or insight that anyone may have- or if anyone has had a similar situation. Thanks in advance!



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#2 Katiep0032

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Posted 02 December 2017 - 06:59 PM

Sorry this- double posted for some reason! 



#3 Lovlkn

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Posted 02 December 2017 - 08:40 PM

Welcome to the board!

 

You are currently showing labs that are a result of taking the tapazole and beta blockers.  That's great news that you went so quickly to "normal" lab values, however given your TSI and TPO and Thyroglobulin result you likely will swing either hyper or hypo in the near future.

 

The issue is you still have TSI and it is very high and definitely positive for Graves disease.  

 

 

TSI = 443% (0-139%)

 

Have you had an ultrasound of your thyroid?  Presence of thyroglobulin would warrant a ultrasound.  My endo never ran one and should have.

 

You might also consider finding a different doctor at a different practice.  Walk in with all lab work that has been done on you, share your symptoms and desire to become pregnant in the near future.  Unfortunately you are not "done" and rather in the beginning of your journey.

 

Going back to the original statements regarding surgery or RAI - I would highly suggest surgery over RAI as it's once and done.  RAI can take several doses to completely kill off the thyroid and it will continue to disperse random thyroid hormones making it difficult to stabilize on thyroid hormone replacement.  If you are looking to conceive you will need consistent hormone levels.


Free T-4 and Free T-3 are absolutely necessary to properly dose yourself.
My experience is that 1/2 - 3/4 of range is your goal for optimal treatment

My Journey... 7 years to receive a diagnosis. TT 2004 after 4.5 years on Tapazole that had to be adjusted monthly - endo ran labs every 4 weeks. Remission was never going to happen for me so I opted for surgery to remove. Final DX by surgeon was Hashitoxicosis, TPO antibodies over 2000 and TSI 316% within the year prior to surgery. I never had a ultrasound or any lab testing to rule out cancer - pathology was negative. Post surgery I was kept hypo for many years - until I figured out how to dose my self, relying on where I fell in the FT-4 and FT-3 labs. I run TSH below range due to positive TBII antibodies. Horrible time adjusting to addition of Cytomel = patience pays off when adding this drug to the mix.

The happy ending ---> Stable dose since 1/10 Unithroid 125mcg, Cytomel 12.5mcg - labs I can live with.

None of the information on ThyroidBoards.com is intended to diagnose, treat, cure or prevent any disease. Information shared is based on my personal experiences and should not be considered medical advice. Please consult a physician before adjusting any medication.

#4 Katiep0032

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Posted 02 December 2017 - 08:48 PM

Hi- Thank you so much for the reply and advice!   I actually never filled the beta-blocker or the Tapazole prescription as I was concerned about making my hypo-type symptoms worse- that is what makes this all so confusing to me! The only "medications" that I have taken during all of this have been Vit-D, Vit-A, Selenium, and Fish Oil as recommended by my PCP. 

 

I did have a thyroid ultrasound as well which just showed a diffuse, enlarged thyroid with no discrete nodules (summarizing as I don't have the exact verbiage in front of me.)

 

Thank for for the thoughts on surgery vs RAI- that was pretty much my thoughts exactly on that! Seems like with the surgery you are able to get better levels of control more quickly.

 

Thanks again and I would appreciate your thoughts regarding the change in lab values without the use of any anti-thyroid meds. Thanks! 



#5 Lovlkn

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Posted 03 December 2017 - 01:53 AM

First off your lab changes minus the beta blockers or rapazole are remarkable.

You likely have stimulating and blocking antibodies at work. You will likely bounce around from hyper to hypo and have symptoms if both until you decide on a " permanent" I'll say solution. In your case a total thyroidectomy will eventually be your best shot.

I have hashitoxicosis - presented only hyper symptoms - gave tapazole 4.5 years hoping for a remission and finally decided to have a thyroidectomy. I wish I had done it sooner. My kids were 9 and 11 when I had it removed. I believe I was hyper when I got pregnant with my second child. It was rough for me after childbirth when the hyper symptoms surfaced. No doctor could DX me and my PCP kept pushing anti depressants which I refused.
Free T-4 and Free T-3 are absolutely necessary to properly dose yourself.
My experience is that 1/2 - 3/4 of range is your goal for optimal treatment

My Journey... 7 years to receive a diagnosis. TT 2004 after 4.5 years on Tapazole that had to be adjusted monthly - endo ran labs every 4 weeks. Remission was never going to happen for me so I opted for surgery to remove. Final DX by surgeon was Hashitoxicosis, TPO antibodies over 2000 and TSI 316% within the year prior to surgery. I never had a ultrasound or any lab testing to rule out cancer - pathology was negative. Post surgery I was kept hypo for many years - until I figured out how to dose my self, relying on where I fell in the FT-4 and FT-3 labs. I run TSH below range due to positive TBII antibodies. Horrible time adjusting to addition of Cytomel = patience pays off when adding this drug to the mix.

The happy ending ---> Stable dose since 1/10 Unithroid 125mcg, Cytomel 12.5mcg - labs I can live with.

None of the information on ThyroidBoards.com is intended to diagnose, treat, cure or prevent any disease. Information shared is based on my personal experiences and should not be considered medical advice. Please consult a physician before adjusting any medication.

#6 Tink22

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Posted 05 February 2019 - 08:09 PM

Lovlkn,

 

I have tried to private message you but cannot for some reason.  I need to talk to someone who knows a bit about beta blockers....  I am having an elevated heart rate, anxiety and insomnia, due to hashi's.  And had a few questions about beta blockers.  Such as if there would be rebound anxiety if I only took it for a week to get the anxiety to quit.  etc.  

 

could you message me? 

 

Thank you.







Also tagged with one or more of these keywords: Graves disease, hashitoxicosis, Subclinical hyperthyroid, hasitoxicosis, graves disease, sub-clinical hyperthyroid

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