# hashitoxicosis update: BRT



## hashistruggles (Jul 14, 2011)

Hi everybody,

Been a while so let's post an update.

this story has part before that, but let's limit myself till the most recent part, being not all that recent either. 5 years ago was diagnosed Hashimoto. I got meds and would feel better soon. from that moment on things got worse much worse. I cannot describe it any better as hypo-hyperhell started. my heartrate went crazy and has not been normal since. Long story short, I fluctuated between hypo and hyper, constantly. No doctor had a clue, nor would listen, after all my levels would indicate hypo or in 'best' case 'normal'. Yet the better my levels became the worse my hypers became. I did have TSI's but again, nobody paid attention to that. It was as simple as hashi's or graves to them. I knew differently, it felt differently , I did not fit the 'standardscenario's, but could not pinpoint it. 
They did not listen, they did not care (I'm sorry if I sound frustrated with doctors, they disappointed me big time. I never could imagine a person being that sick and just being send home, no doctor even bother to get to the bottom of things, ...) if it's good on paper(labwork), it's good right? At certain points I truly felt like I would not make it through the day, felt like dying really and going to a doctor was useless since they'd just send me back home. did anybody experience this? It's like I'm so out of propertion sick of thyroid. 
Until I bumped into the word hashitoxicosis. The pieces of the puzzle came together. This was what was going on, the story written down (I think by a boardmember, thank you for that!) was exactly, completely as I experienced it, as I tried to explain to the doctors.
My whole 'life' is turned upside down. 
it's not because they have no clue, that I'm gonna spend the rest of my life in bed and suffer. I'm determined to get better. i know it can be done. but it's such a lonely battle.

Currently, after 5 years of hypo-hyperhell (and in the meantime also have TED) I'm on BRT. It would be wrong to assume that I finally found a doctor who has a clue (I truly wonder whether that one even exists, somewhere.), but I begged to at least let me try that.

Currently I'm on BRT for about 5 months. i'm still feeling pretty sick, but it's already a world of difference, my body feels more stable, calmer, the difference is noticeable, but I'm far from feeling 'ok, somehow normal' (although I barely still remember how that felt, I know I sure am not there yet). My antibodies are decreasing.

Before BRT: antiTPO: unmeasurable high (one lab measures till 1200, another till 2000, both were unmeasurable)
Anti-Tg: unmeasurable too
TSI: 8 (reference range < 1)

Currently after 5-6 months of BRT
antiTPO and anti-TG both decreased till somewhere around 400-500
TSI 2.5

I will post my recent labwork later on (have to get those, but at this point truly don't feel like getting up, sorry about that) but I already wanted to write this.

Please if anybody has any other advise, more then welcome.

thanks for reading this


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## chopper (Mar 4, 2007)

Although I am not sure what BRT is (never heard of it before), there is not much that will lower the antibodies. I don't like being the bearer of bad news, but it is more likely a short term reprieve.

Im the one that wrote that piece on HashiTox so I am very familiar with those ups and downs and yes, we all go through periods of remission-like behavior and we all try to justify it with something new we did....the fact is, it is more likely the antibodies natural course than something we did or took to help.

I went 6 months once of feeling totally normal before symptoms came back with a vengeance. I contributed the remission to a new diet I started around the same time but in fact it was just the natural course because I was still on the diet when my thyroid went nuts again.

Yes, we feel considerably better when those antibodies are lower. Doctors simply do not understand how different Hashitox is than graves, hyper or hypo....I personally think it is its own unique disease and should be treated as such.


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## bbdailey (Sep 29, 2011)

What is the typical treatment for Hashitox?


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## chopper (Mar 4, 2007)

There is no real protocol and I've been to 15 different endos over the last 10 years. Ultimately, surgery is the answer. You can try Synthroid or other thyroid meds but what happens when you get a hyper period? You go even more hyper.

You can be placed on ANTI-thyroid meds but what happens when you are naturally in a hypO cycle? You go more hypo.

How do you control something that constantly changes?

Take out the gland, go totally hypo and take meds so you get a steady dose every day. That's the answer I believe.....or you can waste 12 years of your life praying your thyroid will just die off on its own from all the antibody attacks....which it will one day.....but when? Mine's been going strong for 12 years now, although my numbers are just recently starting to fall more hypo more consistently.


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## hashistruggles (Jul 14, 2011)

first of all thank you for your reply, it's dearly appreciated. thank you for your story too, although I'm very sorry you endured all of that. For what it's worth, although I realize it's not much comfort, it does make me feel less alone. When I read it, the only thing I could think "this is it, so could have been my story. :hugs: As far as I understood you were gonna have it taken out, is it out in the meantime? (I assume not since you write you're more hypo consistency these days) how are you doing?

BRT: block and replace therapy, so on one hand I've got antithyroid medication on the other hand thyroid supplementation. one _or_ the other sure ain't no option.

I agree and I'm not saying it's the answer, truth is I don't hold the answer if I would, I would not be sitting here the way I am. 
Taking it out, sure an option I considered and still consider, for all I care they can take it out right away. yet as you probably noticed, just like I did, doctors don't seem knowledgeable in this regard at all. They think it's either one or the other. They don't get it, they don't seem to bother. so every time I even brought up the idea of taking it out, they would go on starting to explain to me how I was hashi's, hypo so no need to take anything out and blabla. I would not wish for anything more but a doctor who would get it and constructively work to a solution, but it's like every time I have to argue/fight with them and what not. 
In the meantime I know better, I know, you know, they not yet. the day I got BRT (antithyroid drugs added to my thyroid meds), I just felt like I would not make the weekend. (thyroid meds with hashitox is, as you know, really like putting water in a volcano.) I could not take it any longer, so begged to let me try that and see whether it would do anything. Next to surgery it seems the only logical thing to do IMO.

I don't think waiting for it to die off is a solution, as you noticed yourself that can go on for years and years. besides not sure whether there is a guarantee, if one looks that it can go on for years with standard hashimoto, we have those stimulating ones on top of it...

as I say it might not be the solution, but for now at least the antibodies are decreasing, if anything, it at least can be beneficial for TED. and for now yes the difference is there. it might be temporary, but at this point Ijust don't know what else to do. Every improvement, no matter how tiny is one. I never want to go back to that hell, sure it still is, but at least already less. surgery taking it out, sure, but for that one needs a doctor who starts to get it and at this point (despite the numerous (12) I've seen in the meantime) that's still lacking. 
I agree hashitox needs its own approach, if only doctors would get that...


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## chopper (Mar 4, 2007)

Block and replace is not really the answer either. It's rare you get the right formula to remain steady because your thyroid is not putting out a steady amount.

How do you know when or how much anti to take versus thyroid meds? I think that can only exaggerate the insanity.

I really think surgery is the solution, but I never ended up practicing what I preach plus it is difficult to get a surgeon to remove a thyroid when your labs come back normal. Need to do a lot of convincing.

I don't know if RAI is the right choice either. I think I would prefer surgery.


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## hashistruggles (Jul 14, 2011)

nasdaqphil said:


> it is difficult to get a surgeon to remove a thyroid when your labs come back normal. Need to do a lot of convincing.


 exactly my point so it's not a real option either is it?

Let's put the options on a row. 
1) thyroid meds? not an option, what if one turns hyper? It's adding fuel to the fire. (been there done that)
2) anti thyroid meds? not an option, what if one turns hypo? indeed.
3) wait until one turns hypo? not an option, exactly that is what happened to me 5 years ago. (1) remains even if one is more consistent hypo, well in my case that is anyway).

To my knowledge and in my experience what needs to be done is _neutralize _the thyroid and supplement with thyroid medication. I just see no other way. how to achieve that?

4) RAI: not an option for the following reasons:
- one needs to be hyper at the moment it's given (hard to predict in my case) and
- again it will be hard to find anybody willing to perform that when labs are normal or hypo (since they know it won't work with hypo)
- should not be performed when TED is present (so for me, even if I would find anybody willing, for me personally it's not an option)

5) surgery: yes would be an option, but no surgeon will perform it when levels are normal.

what remains? for _me_, I see no other way but block and replace therapy. the solution might not be perfect, but it's worth checking out. how much of thyroid meds? Full supplementing dosage seems the only way, if not the problem remains of course. 
you write: _How do you know when _
to be clear it's *not *in the meaning of option 1) or 2). not today I'm hypo so let's take some thyroid meds. Not today I'm hyper so let's take some antithyroid meds.
you write:_ I think that can only exaggerate the insanity_. in the above meaning that sure would add to the insanity, my goodness. no stability can be achieved like that.

to be clear block and replace therapy is doing both at the same time, consistent. so every day I take my antithyroid meds and my thyroid meds. (that as such is not uncommon practice. Since nobody is familiar with hashitox it's not common practice there)

I was scared to add to the insanity, although my research made me conclude it was pretty much the only thing I could do, it made sense and I was willing to try. I knew I had to do something, I truly had it with waking up with that crazy heartbeat of 120-150 average, I was not even moving, my body could not take that no more either). In my case it did not add to the insanity whatsoever. I'm still not feeling well, but compared to before, it's a world of difference.so for _me_, at this point it seems to do what I hoped it would.

Coincidence that the antibodies are dropping? Can be, but antithyroid meds are known for that too. I did not dare to count on that, but they sure are dropping so seems only beneficial and helpful for that much needed stability.

:hugs:


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## Andros (Aug 26, 2009)

hashistruggles said:


> Hi everybody,
> 
> Been a while so let's post an update.
> 
> ...


What is BRT?

I am so sorry you have been so ill. At the outset, I would like to know if you have had an ultra-sound or RAIU (radioactive uptake scan?)

If not, why not? Cancer needs to be ruled out or in as the case may be. With such high TPO, I am very suspicious.

In any case, getting your thyroid surgically removed could possibly be the perfect solution for you here with all this mess. You can't go on like this. Many of us can relate; believe me!


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## Andros (Aug 26, 2009)

hashistruggles said:


> first of all thank you for your reply, it's dearly appreciated. thank you for your story too, although I'm very sorry you endured all of that. For what it's worth, although I realize it's not much comfort, it does make me feel less alone. When I read it, the only thing I could think "this is it, so could have been my story. :hugs: As far as I understood you were gonna have it taken out, is it out in the meantime? (I assume not since you write you're more hypo consistency these days) how are you doing?
> 
> BRT: block and replace therapy, so on one hand I've got antithyroid medication on the other hand thyroid supplementation. one _or_ the other sure ain't no option.
> 
> ...


Ah, ha!! Block and Replace. Thank you. I am most familiar with that. It sometimes works if the patient is not in the "advanced" stages. You are in the advanced stages.

By the way; have you had FNA to confirm Hashimoto's?


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## hashistruggles (Jul 14, 2011)

thank you for your reply.

Surgery could be a solution, IF one finds a surgeon who is willing to take it out. not an easy assignment with normal or hypo levels. for all I care, truly they can have it. that would be the least of my worries, but it's easier said than done.
Anyway so for now... BRT it's at least that.

_It sometimes works if the patient is not in the "advanced" stages. You are in the advanced stages._ Yeah I sure feel in advanced stages, but what exactly does that mean? Until now all I know, block and replace is already a relief and so far doing what I hoped it would.

FNA: not done as far as I recall and as far I know, I would recall that. it was never questioned I had hashi's. Something every endo I saw along the way (12) agreed on. 
:hugs:


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## joplin1975 (Jul 21, 2011)

I'm sorry you are struggling so much.

I have to agree with Andros -- I would be pushing HARD for the FNA. Hashi's can't formally be diagnosed without one, although bloodwork can certainly be indicative of it. Above all, rule out cancer first. Your blood work might be indicative of Hashi's, but it's also indicative of cancer. All this talk of medication and optimal levels may be a moot point. And if it is cancer, I'm sure you'll find surgeon very willing to take the gland out.


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## hashistruggles (Jul 14, 2011)

the latter one sure is true.

whether it is hashi's or not (think it has to be, why else would they all give the same diagnosis), matters less no? so how do I know for sure whether it is cancer? I do know in those years they pretty much performed every examination possible (but don't remember FNA, that's for sure), so I'm sure that would have surfaced if it played no?


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## hashistruggles (Jul 14, 2011)

ok me again, just went through my paperwork, 5years ago a thyroid (CRT) scan has been done. is that sufficient to rule cancer out?


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## joplin1975 (Jul 21, 2011)

Oh, yes, the Hashi's vs Not Hashi's argument is secondary -- the important issue is that you rule out cancer. I think the...suspect thing is that you have been dealing with this for a while, have VERY abnormal antibodies levels and no one has suggested or talked to you about FNA? That would be a little disconcerting to me, I think? Unless I'm missing something?

Did the scan show any nodules?

Edited to add: No, imaging only shows the size/shape of the thyroid and any nodules you may have. The only way to rule out cancer is to biopsy the thyroid. I know some folks did not have a pleasant time with the FNA, but truthfully, I found it to be one of the easier parts of this whole process.


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## hashistruggles (Jul 14, 2011)

thank you once again.

Nope it did not show any nodules.

Nope nobody suggested nor talked about FNA. yeah well that sure no longer surprises me, pretty much everythign in this story baffles my mind.


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## Octavia (Aug 1, 2011)

Ditto what joplin just said...and even with an FNA, cancer might not be ruled out (sometimes it's inconclusive or points to a need for surgery to _really_ rule cancer out or in).

My FNA wasn't too bad, despite the fact that they too 4 or 5 samples.


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## hashistruggles (Jul 14, 2011)

I'm not scared nor worried about FNA as such, I'm just a bit baffled that it would be needed in my case and no endo (out of 12) came up with that idea.  so I wonder whether I'm missing out on something (just like Joplin said).


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## Andros (Aug 26, 2009)

hashistruggles said:


> exactly my point so it's not a real option either is it?
> 
> Let's put the options on a row.
> 1) thyroid meds? not an option, what if one turns hyper? It's adding fuel to the fire. (been there done that)
> ...


How many surgeons have you talked to? We have many here who went to ENT in desperation and got the thyroid removed. And interestingly it turned out that a high percentage of those did have cancer and did not know it until the pathologist got the gland.


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## hashistruggles (Jul 14, 2011)

I talked/been to 12 endo's with the first one I probably did not bring it up, with the latter ones sure did. over here it's common to well the endo's treats you and when need be (TT), the surgeon will come in the picture. not common to just consult with the surgeon without referral of endo. i did try with 2 though... which send me back to the endo.


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## lainey (Aug 26, 2010)

Re: cancer.

First, initially you had the antibodies. They really don't need to do a FNA to make a diagnosis re: Hashi's--it has been done already. True, some say todiagnose it via bloodwork to some is not necessarily "conclusive" (you need a certain type of Hurthle cell, technically) most doctors have no trouble arriving at the diagnosis if the proper antibodies are present. After that, they generally don't do them unless there is something specific to sample, other than thyroid tissue itself.

You're really unlikely to have cancer without any nodules. Sampling the thyroid itself for this purpose is not productive--they need a "thing" to do pathology on, which in this case would be an adenoma of some type, greater than a centimeter or so in size.

Radioactive uptake scans require you to be off thyroid medication. Probably not your best choice at this juncture. If you have a fairly recent (with in a year) clean ultrasound than you are probably good to go. If it has been more than a year since your last ultrasound, you are probably due.


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## hashistruggles (Jul 14, 2011)

thank you for your reply and the clarification. that's a relief. no nodules probably explains why no FNA ever came up.  It would have been odd anyway. they might not be familiar with hashitox as such, but they're not completely clueless either one should think.

no getting off thyroid meds does not sound like an option at this point. besides I'm allergic for the dye too.


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## bigfoot (May 13, 2011)

Sorry to hear about your tough time getting diagnosed and finding proper treatment. I think the majority of us here on the forums are in the same boat -- years of revolving doors at the doctor's office and very few answers. The block-and-replace approach sounds interesting. Ultimately it's about how you feel, and it sounds like you have made improvements.

hugs3


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