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Old 11-07-2011, 04:56 PM   #1
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High TPO and super high TSI - hopeless?

I was Dx'ed hypothyroid/hashimotos this spring. TSH was 15.4 (.4-4.0) and FT4 was .8 (.7-1.9). In July my TPO was tested and was 869 (0-9). Since starting thyroid meds (first just levothyroxine .05mcg then Armour 90mg) I have had HORRENDOUS emotional swings - like nothing I've ever had. My thyroid has felt tender and painful coinciding with anxiety- which lead to GERD diagnosis and anxiety. But nothing has become better. I've had these swings on levo and Armour, nothing works. I started adrenal treatment (Isocort and Seriphos) based on a 4x saliva test. This has helped a tiny bit, but not that much.

I finally pressed my psychiatric nurse practitioner to check for TSI. I had a hunch from what I've seen with people who have TPO and hyper antibodies- their symptoms are JUST like mine. And I've had these problems since high school- sudden weight loss, then weight gain, then loss. Emotional fluctuations that I cannot control, but then ok. Jittery and unable to relax but other days fine. Insomnia at LEAST since 2nd grade that was cyclical. But always exhausted.

So my TSI came back at 3.7 when the range is <=1.3. So I am at almost 300% of the range (if my math is right?? but either way, way over). My current doc (internal medicine) said she is not sure how to treat this. So now I am waiting for my endo to call back to see what I can do.

My labs says hypO, but all my symptoms, about 80% of the time, say hypER, as do the antibodies.

I feel hopeless. I am not even sure what can be done for this short of removing the thyroid. I am not even sure that my endo will acknowledge this as a problem. But I can't keep living like this - hypo was horrible, but taking meds is horrible in different ways.

What CAN I do? It will be a long waiting game, but I am debilitated in the meantime.

Has anyone beat this before? What have you done?? I need some help and reassurance please!!

 
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Old 11-07-2011, 05:07 PM   #2
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Re: High TPO and super high TSI - hopeless?

So sorry to hear of your struggles.

It was a good idea to check for TSI because therein lies the answer to the cause of your difficulties.

You have a form of thyroid disease called "Hashitoxicosis" and the appropriate treatment protocol is called "Block and Replace Therapy".

You would take an anti-thyroid drug such as methimazole (usually around 5mg) or 50mg PTU which block the production of thyroid hormone but, more importantly, help to lower TSI.

Of course, you would need to replace the blocked hormone production with a higher dose of thyroid hormone replacement.

One concern with thyroid removal when you have high levels of TSI is Thyroid Eye Disease.

If you think you'd like to remove your thyroid, it might be a good idea to do BRT for awhile in attempts to lower the TSI.

You might want to search some old threads on here using "Hashitoxicosis" to read of others' experiences.

I wish you the best of luck moving forward - please keep us posted.
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Last edited by sammy64; 11-07-2011 at 05:11 PM.

 
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Old 11-07-2011, 05:11 PM   #3
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Re: High TPO and super high TSI - hopeless?

Do many doctors do the block and replace method? Is it common? or is it more common to say, let's just see where it goes? Or do they try to remove it more often?

"Let's just see where it goes" is not really an option for me because it's going no where and getting worse.... but I want to be prepared for what the doctor might say.

This has been a nightmare.

 
Old 11-07-2011, 05:21 PM   #4
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Re: High TPO and super high TSI - hopeless?

Doctors in general just don't seem to understand how to treat thyroid disease.

Block and Replace Therapy is also an effective treatment for Graves' Disease and the 3 endos I saw when I was hyper from Graves' were clueless.

BRT makes a lot of sense and I just don't understand why doctors don't try to embrace the concepts.

My first two endos pushed RAI and the third pushed surgery. None of them knew how to medicate properly. So, it's almost a double-edged sword.

I always believed it was vital to find a doctor that knew how to medicate properly before choosing a permanent treatment. Those TSI antibodies will skew your TSH after surgery (making it very low). A doctor that doesn't know how to medicate properly will leave you very hypo after thyroid removal.

If you do some research on Hashitoxicosis and talk to your doctor about it and BRT, maybe, just maybe, your doctor will agree to try BRT.

Unfortunately, with or without a thyroid, there's still an adjustment process with changing meds.
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Old 11-07-2011, 05:25 PM   #5
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Re: High TPO and super high TSI - hopeless?

hmmm... thank you for the input. This does seem a bit hopeless. Not sure I can make it until I find a doc willing to help... it is almost impossible to handle this on a daily basis. Nothing was this bad til starting thyroid meds.

The endo I saw initially is hypothyroid himself and uses T3 occasionally, but not Armour. Hopefully he is open enough to listen to me and try other things. However, he did not seem concerned when I told him all my hyper type symptoms in the past. Maybe that will change with my TSI results.

 
Old 11-07-2011, 05:45 PM   #6
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Re: High TPO and super high TSI - hopeless?

I can understand how you feel. I think many of us with thyroid disease have felt hopeless at times and I'm sorry that's where you're at right now.

I do think you have some "ammunition" in regards to the TSI results but, you might have to push for treatment.

Please keep us posted.
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Old 11-08-2011, 04:46 AM   #7
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Re: High TPO and super high TSI - hopeless?

I'm sorry you're going through this and I know what you're dealing with, literally since I'm having hashitoxicosis too.

indeed what you write "Nothing was this bad til starting thyroid meds" I could not have said it any better. Then it all really started, which makes sense if one thinks what is actually going on. it's a living nightmare!

everything Sammy said, I can only agree with. she helped me a lot too (thanks again Sammy).

is BRT common treatment? Yes for Graves it is, but since the scenario of hashitoxicosis is not common, it's not common recognized. Pushing treatment through is not an easy thing to do, since in my experience most doctors aren't familiar with hashitoxicosis. they look at the bloodresults, see hypo and start treating accordingly which only makes things worse. If you could find a doctor familiar with it, that would be great, but if not it's trying to make the ones you're dealing with somehow familiar with it.

In my experience BRT is the solution to start with. (surgery could be an option at a latter stage and if still needed, but a doctor who is not willing to try BRT very unlikely is willing to perform surgery. since they look at us as hypo they don't see the need to do that).
They don't get what it's like. they might think hypo and hypersymptoms are very alike (which is true, but I'm sure you experience the swing and change of the 'clusters' of symptoms yourself) and consequently we just need to get to the proper dose (been there done that, it ain't working).

Armour, levo, it does not matter which brand you take, without BRT. Also keep in mind, TSI stimulate an increased T4 to T3 conversion, T3 thyrotoxicosis is very common with hashitoxicosos (but quite often ignored) so adding T3 can make things worse.

good luck!

 
Old 11-08-2011, 05:10 PM   #8
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Re: High TPO and super high TSI - hopeless?

Update:

Talked to the endo today. He told me that the TSI test is a waste of money and means nothing. That it is OBVIOUS that I am hypo thyroid given my other labs. That, how is it possible that 3 labs could be telling me that I am hypothyroid? How could I not listen to those? Told me that we need to explore further, that it is probably anxiety uncovered by treating hypothyroid which got rid of any depression which obviously unmasked anxiety. That we should dig deeper and look at mood (which is ALREADY being covered by a cognitive behavioral psych and psychiatric nurse practitioner - but he wouldn't listen to me when I told him that). He told me I could get re-tested for the TSH T3 and T4 to prove that I am not hyper or I could stop my thyroid meds to prove to myself that I actually do feel better on meds than off. I told him that if this is "better" and if people feel like this when their thyroid is making adequate hormones, then life sucks for everyone. That if this is normal, or anywhere near normal, then it's not worth it. He didn't care that I've had a history of fluctuations symptom wise or that my symptoms are crazy right now. He hardly even let me talk.

I don't even have the energy or stamina to search out docs. I don't even know how I'll make it to the next day, let alone to finding another doc. This is hopeless.

The only bright spot is that my dad is ****** (he's a pediatrician) and can't believe the endo. So he started calling around to other endos today and found one that said he will take a fresh look at everything and said that autoimmune thyroid issues can set off a whole set of other problems. He was interested in my case and agreed to see me. He also works at a research center/teaching hospital, so hopefully he will at least be a bit more aggressive in testing so he can "teach" others. If nothing else, at least it will be a new look at everything. And he will know that he will have to explain things to my dad, rather than just some random person who supposedly doesn't know anything about medical stuff. I'll get hopeful/excited once I find out if he can actually LISTEN to me and get past any perceived "anxiety". I hate doctors, and always have. I never go to the doc, I've always just called my dad when I've had colds so I don't have to bother a doc. And I only go in for regular physical/exams. Do they really THINK that I want to spend all of my time there??

 
Old 11-09-2011, 05:12 AM   #9
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Re: High TPO and super high TSI - hopeless?

I will keep thinking positive thoughts that you get the proper treatment.

And, not to be problematic or anything but, do you think your father would consider treating you?

I mean, many of us thyroid forum members can figure out dosing - not that we recommend self-dosing but, dosing decisions are relatively logical.
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Old 11-09-2011, 05:38 AM   #10
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Re: High TPO and super high TSI - hopeless?

I'm sorry it did not go well with the endo. I'm not surprised by his explanation, I heard it all too often, still does not mean it's correct. As I said earlier, they look at the bloodresults (sure that's a good way to start), if they show hypoT, they treat accordingly, hyper they treat that. it's either one or the other, from their perspective and for the majority of patients that will be true, unfortunate enough not for all.
The antibodies and more importantly their function is ignored, while if one thinks about it (does not even take a doctor to understand that) if on one hand one has antibodies who cause a slow thyroid and on the other hand stimulating one, it's a push and pull game. one can hardly speak from a stable situation. Unfortunetaly enough, exactly because the high antiTPO (hashi's) with present but not all that high TSI one does not get actual hyperbloodlevels, the clinical symptoms are clear but again most of the time ignored.
So he can retest all he wants, occasionally those will actually show hyper (even if so, they'll just decrease the thyroid meds). More likely you just don't get there, because your hashi's prevents you from getting there, although you display hypersymptoms.

Anyway I'm really sorry things went the way they did! I hope you get proper treatment soon. Maybe your dad would be interesting in reading some on hashitoxicosis. this terminology is used for both active phase of hashitoxicosis (that's not what is going on) or hashimoto together with graves (that's what you need). Once I gathered some citations from medical science articles if you'd be interested, I'll be happy to give them to you.

Good luck and hang in there!

 
Old 11-09-2011, 06:37 AM   #11
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Re: High TPO and super high TSI - hopeless?

lisa that would be AWESOME if you could send those to me. i'd really apprecaite it.

 
Old 11-09-2011, 04:31 PM   #12
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Re: High TPO and super high TSI - hopeless?

Quote:
Originally Posted by sammy64 View Post
I will keep thinking positive thoughts that you get the proper treatment.

And, not to be problematic or anything but, do you think your father would consider treating you?

I mean, many of us thyroid forum members can figure out dosing - not that we recommend self-dosing but, dosing decisions are relatively logical.


Sammy, no, unfortunately. I am an adult so it would not be good for my dad to treat an adult.

 
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