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Discussion Starter · #1 ·
Hello everyone,

I was first diagnosed with hyperthyroidism (Graves) over 6 years ago. During this time I've followed treatment (not always very consistently from my side), then quit completely for a couple of months (my own decision) and have started again in April 2016, this time more carefully without "forgetting" to take my pills etc.

I've been taking mostly 2x5mg carbimazole, sometimes more, never less. My doctor also started prescribing me thyroxine since July 2016, the dosage having fluctuated between 25-50μg. On top of this I also take vitamin D and selenium (eyes have been slightly affected as well).

Last week I got my latest results which were worse than the previous time, with a lower dosage of thyroxine, nothing else having changed in my medications.

More precisely (first numbers are March 2017 with 50μg thyroxine and second bold ones April 2017 with 37,5μg)

TSH (0,27-4,20) 0,025 0,007

Free T4 (12-22) 16,3 23,4

Free T3 (3,1-6,8) 4,9 7,3

Anti-thyroglobulin (<100) 319 216

Anti-TPO (1-16) 729 1046

This doesn't make much sense does it?

I don't know what to do and I don't know why it's not responding or worsening when there's no clear reason for this to happen.

I would be grateful for any ideas or comments you might have. Has anyone experienced anything similar? My endo insists that I should start thinking about surgery but I would really like to exhaust all options before going there.

I'm just confused and I would appreciate any feedback.

thank you.
 

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Quick question, is your doctor prescribing you to take carbimazole and thyroxine together? Or were you taking them each at separate times?
 

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Discussion Starter · #3 ·
Hi jenny,

I was taking them both. Carbimazole is the steady one and then I am sometimes prescribed thyroxine on top of this.
 

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Hmmm, is your doctor calling it "block and replace" treatment when he prescribed both?
 

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Discussion Starter · #5 ·
Hmmm, is your doctor calling it "block and replace" treatment when he prescribed both?
Yes, exactly. What she says is that she would like to block my thyroid's function but at the same time give my body the thyroxine so I don't turn hypo.
 

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I'm not an expert on block and replace, but I think we have some posters here who have done it before.

Just going off your recent labs, you are swinging hyper so I would think he would cut back on your thyroxine, if not stop it. Has he ever tested TSI? That's the marker for Graves.
 

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Discussion Starter · #7 ·
I'm not an expert on block and replace, but I think we have some posters here who have done it before.

Just going off your recent labs, you are swinging hyper so I would think he would cut back on your thyroxine, if not stop it. Has he ever tested TSI? That's the marker for Graves.
Following my last results, she cut off thyroxine completely. But I fail to understand why it got worse when I had already lowered the dosage from last time..

My TSI on March 11th was 13 (lab reference <2)
 

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Unfortunately because you've got TSI and Grave's is permanent, not curable, it's not uncommon to see these types of swings. The antibodies can wax and wane, so sometime symptoms will be almost nonexistent and then other times you're in a flare. It's hard to stabilize when you've got all of those high antibody levels. Have you researched surgery to remove your thyroid? If you've been swinging back and forth for years and your antibodies have not gone down in all that time, it may be your best option.
 
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Discussion Starter · #9 ·
Unfortunately because you've got TSI and Grave's is permanent, not curable, it's not uncommon to see these types of swings. The antibodies can wax and wane, so sometime symptoms will be almost nonexistent and then other times you're in a flare. It's hard to stabilize when you've got all of those high antibody levels. Have you researched surgery to remove your thyroid? If you've been swinging back and forth for years and your antibodies have not gone down in all that time, it may be your best option.
My doctor has started to talk about surgery, but to be honest, I'd rather exhaust all other options before going into drastic moves..
 
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