# Thyroid hormone resistance and Graves



## AnaPaulaSdds (Mar 5, 2016)

Hi Guys!

Long time reader, first time poster! First of all, i would like to say that all support you provide is wonderful! I've learned a lot, thank you!

So, I've had graves disease for almost 2 years and I've been treating with tapazole since then. My case is very different from everything I've ever read! I have a small thyroid, no nodules, no TED (not even dry or gritty eyes!), never had high BP, racing heart or tremors! My only simptoms were insomnia, anxiety and hunger! My Trab (Sorry guys, in Brazil we don't have TSI tested!) was only slightly elevated, while my frees were on the roof (FT4 - 4.2 ng/dl - range 0.8 - 1.7 - and FT3 0.84 ng/dl - range 0,24 - 0,37) and TSH < 0,005.

Endo nº 1 prescribed me 40 mg tapazole for 2 months and then she told me to return for labs. After 32 days on it, my body was all over in pain, i couldn't walk, eat, was swelled up, 7 kgs heavier! So i went for a blood draw and turns out my TSH was 473 (yes, 473!), and my frees were close to 0! I suspended my medication and went for doctor shopping and found endo nº2, who is amazing! Since then, I switched to block and replace and we've had hard time to stabilize my TSH! Unlikely many graves folks, my TSH insists to be on the hipo side, while my both frees are on end of the reference range.

On my last appt., after a MRI of my brain (to rule out a pituitary tumor) and a genetic test, endo told me that I have thyroid hormone resistance, and that's probably the reason my TSH never went back to 0. He also told me that i am probably hipo (i don't have ANY symptons btw!) and that he doesn't know how to treat me, because the combination of graves disease AND thyroid hormone resistance is an extremely rare condition and, as i don't have any lab work previous to my diagnosis, he doesn't know where my both frees should be.

My last labs (after 8 weeks on 20 mg of tapazole and 150 mcg of synthroid- had my lab draw in the morning, 24 hours from my last days dose - i have 54 kgs) are:

TSH - 5,3 ( 0,45 - 4,5 mUI/L)

FT4 - 1,8 ( 0.8 - 1.7 ng/dl)

FT3 - 0,37 ( 0,24 - 0,37 ng/dL)

Trab - 2,6 ( < 1 U/L)

RT3 - 23 ( 8 - 25 ng/dL)

My endo's plan is to ignore my frees and keep raising my synthroid until my TSH gets around 1. I don't know if it is the right move to make, i am fine and asymptomatic right now. I also don't want to be way off charts, and then get back to square 1. I really don't want to tease this disease and experiment all those horrible psychological symptons again. But he says that, naturally, my frees must be even higher, because if my Graves is active and it suppresses the TSH, my TSH couldn't be that high!... I know it sounds logical, but i am feeling SO great! I don't feel the need to try!

So my questions are: What would you do if you were on my shoes? Do you know anyone with graves disease and thyroid hormone resistance? How are they going?

PS: Sorry for my english.

Hugs!


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## Lovlkn (Dec 20, 2009)

Welcome!



> My Trab (Sorry guys, in Brazil we don't have TSI tested!)


My endo only tested TRAb with me and I;m in the US. The only TSI I had was at my request and just prior to my thyroid removal. My TRAB went from double range to 1/2 of range and then doubled again so I do know it moves around frequently. Any elevation is positive but the fact your Free's were so high is amazing.



> Endo nº 1 prescribed me 40 mg tapazole for 2 months and then she told me to return for labs.


WOW! That's a high dose and 2 months is definitely too long to not have been tested. As you experienced 32 days in - you were already hypo - severely.

My body ached the entire time I was on Tapazole - interestingly I was also kept hypo but not as hypo as you went.



> My endo's plan is to ignore my frees and keep raising my synthroid until my TSH gets around 1. I don't know if it is the right move to make, i am fine and asymptomatic right now.


The problem with ignoring the Free's is that they reflect the free and unbound thyroid hormone in yor system. TSH does not really matter once you begin taking thyroid hormones. Many endo's get obsessed with TSH and it simply does not matter. Your body has blocking and stimulating antibodies and you must have stimulating antibodies causing the TSH to remain so high. Your FT-4 and FT-3 are already top range - that is too high. If I were that high I would be extremely anxious,

What is your heart rate?

Do you experience anxiety, insomnia, heart palpatations?

https://www.hindawi.com/journals/jtr/2012/182176/ This might help explain to your doctor and is a clinical medical study.

I've had TBII run to prove to my doctor I have antibodies that suppress TSH. I have the opposite issue that you - lack of TSH with 3/4 range FT-4 and FT-3. My doctor ignores TSH and treats me by my FT results.

My concern for you is that if your doctor continues to raise your medications and FT-4 and FT-3 you will experience a possible heart attack. Trying to raise your Free's to get your TSH lower is insane and you need to speak up and quite possibly find another doctor. Goal for FT-4 and FT-3 is to fall somewhere between 1/2-3/4 of range and you are already at to range.


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## AnaPaulaSdds (Mar 5, 2016)

Hi LovIkn!

I feel great! My heart rate is always around 65/70 bpm (sometimes it goes crazily low, like low 50s, but its not common!). And since my levels went this high i was finally able to sleep all night long and have no anxiety at all! If my FT4 goes around 1.5, for example, i will have terrible shoulder/arms pain on the evenings! Its crazy! I really feel the ranges don't apply to me! My mom uses to have her blood work in the same lab that i do, and her FT4 is 2.0 with a TSH of 1,8! Its a genetic mutation that runs in my family, that demands a little more free thyroid hormone in our bloodstream.

I wasn't worried about my numbers, i am now just afraid to change things in such a level that will make me feel hiper again. I mean, my TSH is around 5 and he wants to bring it close to 1! My FT4 is already out of the range, where am i going to land? And there is also the Trab thing that should suppress my TSH and that only happened once, at my diagnosis! Since then i am trying to bring my TSH down. For many, many months, i had my TSH above 20 with FT4 around 1.2, 1.4... Due to this, he suggested block and replace therapy, because i was no longer able to break the tapazole into smaller crumbs, and I was still not in remission yet. (TRAB around 5 that time, when it should be <1).

I just came here to know if anyone knows someone with thyroid hormone resistance who also had graves disease, and how this person knew that it was time to stop playing with the meds.

LovIkn, is there any antibody that increases the TSH readings? I used to think that the pituitary, by feedback mechanism, would read our frees and then release the TSH or don't. I mean, I always thought that we only should ignore the TSH when it is low and Fs are normal. I didn't know we could also ignore a higher TSH, based on the Fs too. Can the pituitary be misled by thyroid antibodies?


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## Lovlkn (Dec 20, 2009)

It would be a Blocking antibody TSBAb - I have Stimulating antibody TBII. I also have both Graves and Hashi's so I likely have both but only the stimulating seems to be active, even 12 years post thyroid removal.

https://www.researchgate.net/publication/11954987_TSBAb_TSH-Stimulation_Blocking_Antibody_and_TSAb_Thyroid_Stimulating_Antibody_in_TSBAb-Positive_Patients_with_Hypothyroidism_and_Graves'_Patients_with_Hyperthyroidism



> There are two types of TSH receptor antibodies (TRAb); thyroid stimulating antibody (TSAb) and TSH-stimulation blocking antibody (TSBAb). TSAb causes Graves' hyperthyroidism. TSBAb causes hypothyroidism. Both TSAb and TSBAb block TSH-binding to thyroid cells as TSH receptor antibodies (TRAb). TSBAb-positive patients with hypothyroidism and Graves' patients with hyperthyroidism may have both TSBAb and TSAb.
> _TSBAb (TSH-Stimulation Blocking Antibody) and TSAb (Thyroid Stimulating Antibody) in TSBAb-Positive Patients with Hypothyroidism and Graves' Patients with Hyperthyroidism_. Available from: https://www.researchgate.net/publication/11954987_TSBAb_TSH-Stimulation_Blocking_Antibody_and_TSAb_Thyroid_Stimulating_Antibody_in_TSBAb-Positive_Patients_with_Hypothyroidism_and_Graves'_Patients_with_Hyperthyroidism [accessed Apr 21, 2017].


If you Google TSBAb you will find alot of medical studies on it. You may find something useful to discuss with your doctor as far as running the test.

On this site - we support medication adjustments by Free T-4 and Free T-3 because of the presence of Blocking and Stimulating antibodies that may be present. In the US, TSH is the screen test for thyroid disorder, however alot of doctors do put all focus on it -

I have had experience with doctors who focus on TSH only and been kept ill. Until I found a doctor willing to treat me on my Free hormones I did not feel well.



> thyrotropin-releasing hormone test is also usually carried out to differentiate resistance to thyroid hormonefrom TSH-secreting pituitary adenoma.


Have you had this test run?

Also - if you are diagnosed thyroid hormone resistance = why does your doctor care about your TSH?? Would not focusing on Thyroid hormone circulating in your system be the proper way to treat?

Have you ever had an ultrasound of your thyroid?

Thyroglobulin antibodies testing?


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