Hypothyroid -- meds? Update #28, stopped the meds... - Mothering Forums

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Old 06-20-2011, 05:00 PM - Thread Starter
 
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Long story short, a few months back, my doc suggested I go on thyroid meds. My levels were only borderline low but I was (am!) very symptomatic.

I am terrified of starting a med you're supposed to be on 'for life' and afraid I'll mess with my body's natural hormone levels or whatever and end up even a worse mess than I am now. I declined the meds... but now I'm starting to think about it.

Main reason now, TBH, is I am gaining weight very very rapidly... not sure if it's the thyroid thing or something else but I can't take it anymore, I've never weighed this much in my life (except while pregnant). But my other symptoms have been intolerable for a long time now too so really the weight thing is just the last straw.

So please, talk to me about this. Is anyone on thyroid meds? What are the possible side effects? Are there some forms that are more 'natural' than others? Is it going to permanently mess with my system if the doc was wrong on his hunch or I otherwise want to stop taking them? WILL IT MAKE ME FEEL BETTER??? Can I continue to TTC (and take it during pregnancy if we're ever successful??) Is it safe while BF'ing (2yo)? Are there any non-med alternatives -- besides the obvious, which I already do (whole grains, veggies, selenium, etc.)?

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Old 06-20-2011, 05:02 PM
 
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I've been on meds for almost 11 years. Yes, you are generally on them for life. All they are doing is giving you what your body doesn't/can't produce on its own. The benefits far outweight any risks, and I've yet to find any risks. And it will help stop the weight gain.

As far as I'm aware, there's no problem being pregnant or breastfeeding (I bf for 3.5 years on it), though dosages may need to be changed.
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Old 06-20-2011, 05:53 PM
 
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I have been on meds for a little over 3 years. I became hyperthyroid after my first pregnancy and tried to control it through meds, diet, supplements, etc. for about 1 year. I was allergic to both anti-thyroid meds, and the beta blockers were causing additional issues. Also, my heart was having atrial fib. runs all day long, so I decided to take the next step and try to get my life back. I didn't want to take radioiodine, so opted for surgery instead and had my thyroid removed. Turns out I had thyroid cancer, so I guess it was a good move. The surgery left me hypothyroid for life, and I have been taking Levothroid ever since.

 

I am extremely sensitive to even minor variations in my dose, and I need my TSH levels to be even on the surpressed side to feel well. Kind of ironic that I am technically hyperthyroid looking at my labs post-surgery, but I feel so much better now. And most of the time I do feel well! Personally, I feel simply awful if I am anywhere near hypo levels, so I feel for you. I think you will feel better once you find the right dose for you. You may already know that a lack of thyroid hormone affects so many other bodily functions--the adrenals, blood sugar levels, body temp., memory, mood, energy level, weight--just to name a few...Like the previous poster said, there don't seems to be any risks to taking the medication, and it is considered one of the safer medications out there. I think the real risk is in not taking what your body is clearly asking for...more thyroid hormone.

 

I have heard from people on both sides of the natural vs. synthetic argument for thyroid replacement. I tend to think natural is better, if it can work, for just about anything. With that said, I have heard some doctors say they do not like to prescribe the natural thyroid for those with auto-immune issues, the claim being that they can cause additional allergic reaction/inflammation, and increase a person's antibody levels. For that reason, I have stuck with the synthetics. It did take my body time to adjust. But now I am ok. Hope that helps, and hope you feel better soon!

 

By the way, you mentioned wanting to get pregnant. It is considered safe to take during pregnancy (Class A, I believe). In fact, it is considered very unsafe to be even borderline hypothyroid when pregnant. Since underactive thyroid is so very common among women, some doctors advocate for testing all newly pregnant women for this, as it is treatable and can have major consequences for the fetus if left untreated. This is one medication you definitely want to take if you need it. On a personal note, I was extremely p$#@%ed off during my second pregnancy, first trimester, when I could feel I was getting hypothyroid on my prepregnancy dose and the doctor refused to increase my thyroid hormone dose (my labs looked ok at that point). Just two weeks later my TSH had climbed to 9.4 (thankfully I had demanded to be tested again).

 

Good luck, and know that you are not alone--there are many many of us on thyroid hormone supplementation!

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Old 06-20-2011, 07:23 PM
 
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big fan.  I went for dessicated thyroid rather than something like synthroid and did feel it was a more natural approach.  You can get this through a doc as well-armour is available by prescription and has both T3 and T4.  if you need it, it's extremely helpful.  yes, if you need it you will likely feel better quickly. 

 

I'd actually recommend being on it TTC, pregnant and BFing.  You do pass thyroid hormone to the babe and clearly that's going to go better if you have enough to pass.

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Old 06-21-2011, 04:17 AM - Thread Starter
 
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Well the more I hear, the more I think this is the most logical next step to take. I guess I am still overwhelmed at the thought of doing this (or doing ANYTHING, really, lol) for the rest of my life. I'm only 28!!!! That could be a LONG time and just thinking about it makes me feel incredibly anxious.

I didn't know that about the natural form possibly causing allergic reactions... I have developed a LOT of allergies over the past few years and do seem to struggle with lots of autoimmune issues. So I guess I need to be careful there.

Another question, is it expensive??? How much are the meds? Do you have to go to the doc frequently, get lots of blood draws, etc???? I have horrible insurance, so I really need to be prepared....


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Old 06-21-2011, 06:01 AM
 
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worth a read:

http://www.21centurymed.com/?page_id=12

 

allergies are also a RESULT of thyroid issues so don't let that throw you off.  developing a number of allergies is a red flag that you're thyroid is off.  So is anxiety.

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Old 06-21-2011, 08:12 AM
 
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Synthroid's not that expensive here (Canada), but I can't speak for the US. I get blood drawn 1x a year, unless I feel I need a dosage change.
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Old 06-21-2011, 03:57 PM - Thread Starter
 
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Panserbjorne, what's scary is I have pretty much every 'symptom' on that page (except cancer... I hope...)

Irishmommy, thanks, I hope it's not expensive here either...

Thanks for the encouragement, I emailed my doc about it & am hoping he'll just send me the script (though I may need to go in and have ANOTHER appt.) so I hope I can start to feel better soon!

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Old 06-29-2011, 08:23 AM - Thread Starter
 
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Well I started the meds today! I am doing the dessicated rather than synthetic since it's natural, it's what my doc recommended, & it sounds like it may be more effective anyway (even though I've been vegan for years & years!! yikes.gif ...a little discomfort there!) and just a half dose to start. I hope it works out & I don't have any weird effects...

I'm anxious to see if it helps. Anyone remember how long before it started working? fingersx.gif I'm so nervous, I really hope this WORKS for me, I've been sick for soooo long!!

Oh and my crappy insurance actually covered it so it was only $25/90days so not too bad!

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Old 06-29-2011, 09:46 AM
 
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Well I started the meds today! I am doing the dessicated rather than synthetic since it's natural, it's what my doc recommended, & it sounds like it may be more effective anyway (even though I've been vegan for years & years!! yikes.gif ...a little discomfort there!) and just a half dose to start. I hope it works out & I don't have any weird effects...

I'm anxious to see if it helps. Anyone remember how long before it started working? fingersx.gif I'm so nervous, I really hope this WORKS for me, I've been sick for soooo long!!

Oh and my crappy insurance actually covered it so it was only $25/90days so not too bad!


 Yes Im on Armour thyroid too. Please read this website. They have so much good info there

www.stopthethyroidmadness.com

 


If the people let government decide what foods they eat and what medicines they take, their bodies will soon be in as sorry a state as are the souls of those who live under tyranny." Thomas Jefferson.

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Old 06-29-2011, 10:11 AM
 
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I have been on thyroid meds for about, hmmm, 5 years now?  It took about 2 months for me to start really noticing a difference and after another month, I realized I felt great.  It is something that happens slowly.

 

On a side note, being hypo can prevent pregnancy and can cause miscarriage so if your are TTC it is smart to be treated.

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Old 06-29-2011, 10:46 AM - Thread Starter
 
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On a side note, being hypo can prevent pregnancy and can cause miscarriage so if your are TTC it is smart to be treated.


Yes! This little tidbit was the piece of info that made me finally cave & try the meds. (We've been TTC for 2 years)...

Marnica, I'll take a look at that site, TY! I got mine from a compounding pharmacy so it's not "Armour" brand, is Armour supposed to be better for some reason?

Patience is not my strong point so hoping I feel at least A LITTLE better in a couple weeks so I'll be motivated to continue taking the med lol

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Old 06-30-2011, 07:54 AM
 
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No armour is just one of the brands of dessicated thyroid. I don't think one is necessarily any better than another. That website I sent you to discusses the different brands and how they may differ. Also tweeking the dose can have profound effects. So keep that in mind. It's trial and error, but eventually you will find the dose where you feel the best.

 

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Yes! This little tidbit was the piece of info that made me finally cave & try the meds. (We've been TTC for 2 years)...

Marnica, I'll take a look at that site, TY! I got mine from a compounding pharmacy so it's not "Armour" brand, is Armour supposed to be better for some reason?

Patience is not my strong point so hoping I feel at least A LITTLE better in a couple weeks so I'll be motivated to continue taking the med lol


 


If the people let government decide what foods they eat and what medicines they take, their bodies will soon be in as sorry a state as are the souls of those who live under tyranny." Thomas Jefferson.

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Old 07-20-2011, 06:49 AM - Thread Starter
 
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Well I've been on it for 3 weeks now and I do not feel even slightly different. You'd think I'd feel better or at least worse, no??

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Old 07-21-2011, 05:31 PM
 
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Armour was reformulated in 2009 and now contains cellulose, which makes it harder for your body to break it down to get to the hormone. On the link someone mentioned, stopthethyroidmadness, many people got better results from chewing it, crushing it and swallowing it with a bit of honey, or trying to dissolve it under their tongues. Lots gave up on Armour altogether....oh wait, I just read that you're on compounded desiccated. Well, it depends on who does it but sometimes that isn't as powerful. Other times it's too powerful.

As for me, I've been on thyroid meds for over twenty years, and once Armour was reformulated, I could tell. I spiraled into hypo.....now I take NP Thyroid by Acella and so far, so good. It's like the old Armour, and I take it sublingually.....

If you are taking it in one dose, swallowing it, do NOT do so within several hours of consuming iron, fiber or calcium, because those things bind to the hormone and render it unusable.

Furthermore, since you're vegan, I assume you eat soy. Soy is a no-no when on thyroid hormone replacement. It will only cause troubles for you....it too renders the hormone useless. (It's actually on a hypothyroid DO NOT EAT list!)

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Old 07-21-2011, 07:01 PM - Thread Starter
 
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The capsules I am taking are made of microcrystalline cellulose. They are shiny capsules... is that how Armour is? I don't know if I can stomach chewing up the pill but I could try???

I do take it first thing in the morning, long before eating anything or taking vitamins. I didn't know that about soy (may have heard that a couple years ago??) but I actually don't eat soy except in very occasional small amounts. Would even a bit once a week or something interfere???

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Old 07-21-2011, 09:02 PM
 
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Pretty sure that any soy at any time is bad. Other foods (like broccoli and Brussels sprouts) should be thoroughly cooked and eaten in moderation when hypo, but soy is one where it's just a "no" food altogether.

I don't know about the capsules. Armour has microcrystalline cellulose, too. I have heard of people opening up the capsules and dissolving them under their tongue.

How far out are you waiting before eating anything with iron, fiber or calcium? More than 2-3 hours? If not, that could be why you aren't seeing any results.

Or the medication level isn't high enough yet.

Or your adrenals are weak, causing you to not absorb the T3 into your cells.

Or your ferritin could be low, which causes the same....

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Old 07-22-2011, 04:56 AM - Thread Starter
 
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I take the meds at 5 or 6am and try to hold off eating 'til 9 or 10... hard because I am hypoglycemic and feel sick by that time but I'm doing it anyway....

My ferritin was low last time it was checked but I supplemented for a while & I'd assume it's back up but I really have no idea. I did just start taking a multivitamin again (in the evenings) which has iron etc. so maybe that will help, IDK....

This is just so complicated!!! I thought all I had to do was take some pills, had no idea there were so many rules about when & what I could eat and all!!! greensad.gif

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Old 07-24-2011, 09:40 PM
 
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I have been on Synthroid for about 15 years. My endo prefers the synthetic but not the generic. It has always worked for me. I started feeling better right away so I suspect your dose is not high enough. I felt like I came back to the land of the living once I started on the meds.

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Old 08-02-2011, 07:24 AM
 
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I just started Synthroid myself, about a week ago.  I have to take it because my t4 levels were low after a lobectomy in January.  I had an enlarged thyroid with multiple large nodules and it had to be removed, they took out the right lobe and the isthmus.  

 

The only thing I've noticed is a change of more energy. Prior to the synthroid my energy levels were really low, I also had no appetite.  Now my appetite seems to be a little better. 


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Old 08-02-2011, 07:53 AM
 
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My 6 yo has profound hypothyroidism. She's on name brand synthroid right now. 50 mcg for $27 a month. I think. I'll have to double check with dh. Our insurance is supposed to cover it, but has been throwing a fit that it's not the generic. The generic just did not work for her. Her tsh was originally 617, and then it jumped back up to 150+ on the generic after treatments, so we're on synthroid now.

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Old 08-02-2011, 07:24 PM - Thread Starter
 
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Doubled my dose last week and STILL no change. I don't understand how I don't have ANY effects, positive or negative...

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Old 08-03-2011, 12:35 PM
 
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Sorry you are going through this...I know how frustrating it is trying to find "just the right" dose. It does take a few weeks for blood levels to reach their equilibrium on a new dose. And it could be that you still need an even higher dose. Personally, if I am even a little on the low side, I might as well be off the charts hypothyroid.

Any chance you can get Free T4 and Free T3 levels checked to see if they are starting to improve (maybe at the two week mark from when you started the new dose)? Even more important is how you are feeling, but maybe doing the labs in the short run will give some information so you feel comfortable continuing with the current dose for a few more weeks before testing again, or alternatively, increasing your dose now if levels haven't risen much.

In any event, if you still aren't noticing a difference in how you feel at the end of 6 weeks from your dose increase, how you are feeling is more important than the labs. Insist that they treat your symptoms and not just the lab numbers, as some people have "normal" thyroid levels, but still need their treatment adjusted further in order to feel well. I hope you feel better soon!

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Old 08-16-2011, 08:14 PM
 
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Doubled my dose last week and STILL no change. I don't understand how I don't have ANY effects, positive or negative...


Sorry, mama!  I know how you feel!  It is SUPER frustrating to deal with finding the right dose.  Thyroid meds take anywhere from 6-8 weeks (!!!) to kick in.  That is a long, frustrating wait.  My one year old was born with congenital hypothyroidism and has been talking Levoxyl since she was 2 weeks old.  She gets blood draws every two months and we have yet to find a consistent dosage. It is really not worth having blood draws any sooner than this because it takes so long for the body to regulate the hormone.  So, unless you are really symptomatic (weight gain, lethargic, loss of appetite for under active thyroid/hyper, insomnia, hunger for too much) the waiting game is how it works. Thankfully, we have been able to keep her T4, T3, and TSH levels within range and she is a happy, healthy baby girl!  Most likely, she will have to be on meds for her whole life, which is a daunting thing to think about, but a small price to pay for  healthy development.  Currently she is on 25mcg, but last month we were alternating 25mcg with 12.5mcg.  She has a blood draw and endo appointment next month, and we'll see what her levels are then.  I am prepared for another dosage change!  Hang in there, it WILL get better!


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Old 08-17-2011, 02:17 PM
 
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OP -

I agree it does take a while, but i also agree with a PP who suggested you look at yur adrenal function. The two of these things are often times intricately woven and if you fix one without fixing the other, either you wont get results or you may even feel worse.

 

Can you find a doc who would be willing to do a full hormone panel on you and a 24 hr corisol saliva test?


If the people let government decide what foods they eat and what medicines they take, their bodies will soon be in as sorry a state as are the souls of those who live under tyranny." Thomas Jefferson.

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Old 08-17-2011, 06:14 PM - Thread Starter
 
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I am going to my doctor this week, I will ask him about those things. I know it can take awhile but it's been almost 2 months and I don't even feel a little bit better.

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Old 08-29-2011, 08:23 AM
 
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I am going to my doctor this week, I will ask him about those things. I know it can take awhile but it's been almost 2 months and I don't even feel a little bit better.

Hi crunchy mommy, what kinds of symptoms did you have, and still have?

Some people just don't do well at all on compounded thyroid. Maybe you can switch to Erfa or Acella?

There's also Armour, of course, and Naturethroid, but both have cellulose as fillers, which binds to the hormone.
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Old 10-15-2011, 10:06 AM - Thread Starter
 
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I guess this thread is old now but just wanted to update...

After 3 months on the meds, I felt no better... so I stopped taking them. After a few weeks off them, I realized my mood is much more stable. I mean, it still goes up & down, but not to the extreme it seemed to be while I was on the thyroid stuff. Has anyone ever heard of that, of thyroid meds affecting moods like that??? I'm wondering if it's a clue to... something. Maybe it's just coincidence. But I was really really depressed just for those couple of months and now I'm not great but nowhere near that level of misery. I was starting to think I was bipolar or something.

Anyway, I'm still experiencing the same symptoms that led me to try the meds in the first place... most bothersome is overwhelming fatigue, but I also seem to have lots of headaches, digestive issues, sudden sleepiness, and random aches & pains, along with increased food allergies. Maybe this is just how my life will be. redface.gif My doctor has basically given up on me & I'm torn between trying a different doctor or just giving up (on the medical issues) myself too.

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Old 10-15-2011, 11:36 AM
 
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I guess this thread is old now but just wanted to update...
After 3 months on the meds, I felt no better... so I stopped taking them. After a few weeks off them, I realized my mood is much more stable. I mean, it still goes up & down, but not to the extreme it seemed to be while I was on the thyroid stuff. Has anyone ever heard of that, of thyroid meds affecting moods like that??? I'm wondering if it's a clue to... something. Maybe it's just coincidence. But I was really really depressed just for those couple of months and now I'm not great but nowhere near that level of misery. I was starting to think I was bipolar or something.
Anyway, I'm still experiencing the same symptoms that led me to try the meds in the first place... most bothersome is overwhelming fatigue, but I also seem to have lots of headaches, digestive issues, sudden sleepiness, and random aches & pains, along with increased food allergies. Maybe this is just how my life will be. redface.gif My doctor has basically given up on me & I'm torn between trying a different doctor or just giving up (on the medical issues) myself too.



Try a different dr!!!! I have had thyroid issues for many years but I've never pushed my dr to do the full thryoid panel so I've never been properly diagnosed. No that I've been under intense chronic stress for the last 3 years my thryoid symptoms are even worse but I have no insurance and can't do anything about it. I REALLY wish I had pushed when I had the chance!

 


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Old 10-15-2011, 04:25 PM - Thread Starter
 
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Yeah insurance issues are a big part of the problem, we can't afford the tests and stuff, we have insurance but it's really bad ins. and will be getting even worse as of the 1st of the year. SOOOOO frustrating!!!

Co-sleeping is really wonderful when your child actually SLEEPS!! familybed1.gif
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