# Has anyone gotten better, ever?



## BatMan (Oct 2, 2013)

Im so over this. Ive tried whole thyroid, synthetics, lots of different ranges and doses over the last 7 years. I dont think there is any getting better for me.

I also dont think anyone really knows what ranges of these meds to use.

My symptoms are mixed between hypo and hyper and I can never tell when Im either one.


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## Andros (Aug 26, 2009)

This is a new thread so your history is not available. Have you had antibodies' tests? Ultra-sound?


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## Lovlkn (Dec 20, 2009)

Batman,

It can and does get better -

I'm sorry to hear you have been struggling so long.

Most people feel best at mid toward 3/4 range of FT-4 and FT-3. I for one, much like you feel horrible when my FT-4 gets into high range. It can take awhile to get your setpoint dose. Post TT, even knowing all I know, it took me about 2 years to finally straighten everything out. I was also ferritin, and Vit D deficient which did not help the process to feeling my best.

I am 10 years post op - feel wonderful most days and rarely blame my thyroid for my issues as I consistently take my replacement.

You may be a candidate for Armour which is not synthetic. Have you considered that?


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## BatMan (Oct 2, 2013)

Hi, sorry didnt mean this as a "help me" thread. That didnt go far on here. Usually people say "post your numbers" then never reply when you do or their advice is something they read on the net. I dont think it really helps much.

Was just wanting to hear hope. Thanks lov thats a ray of hope 

Ive been dealing with this 7 years, have tried both synthetics and whole thyroid, through all ranges of TSH, free t3, free t4, have been tested for all the possible side tests I can like ferritin etc. There is no answer for me I dont feel. Perhaps at my best I shouldnt expect to feel any better? In fact Im getting much worse.


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## Octavia (Aug 1, 2011)

BatMan, I do not have Hashi's, so I am not talking from firsthand experience here, but several members here struggled for years, just like you. It seems that they finally got relief after surgical removal of their thyroid. Is that something you've considered? I'm sure others have found relief without surgical removal, but you've been dealing with this for a long time.


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## BatMan (Oct 2, 2013)

Yes actually I had but I didnt think it was an option unless you have serious degradation like cancer etc? They wont even do an ultra sound on mine.


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## joplin1975 (Jul 21, 2011)

Have you seen an ENT or other surgeon? Some times they are more, um, "cut happy." Depending on your insurance, you can self-refer and explain that you are unable to stabilize on medication and are experiencing a decreased quality of life.

My thyroid was removed because of cancer, but it's been a blessing in disguise because I didn't fully appreciate the extent to which the Hashi's was taking a toll on me.


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## bigfoot (May 13, 2011)

Like you, I've been dealing with this for years. Other than a brief "taste" here and there of what normal used to be (which is a nice reminder that it *is* possible), it's been a moving target and tough to get things stabilized. I will say that switching from synthetics to Nature-Throid helped alleviate a lot of the smaller signs & symptoms. That in and of itself was a nice boost. If they offered me a TT tomorrow, I'd probably be first in line. It might not be the best or easiest way to deal with this stuff, but it puts you on level ground at least.

The fact that your doctor(s) won't even do an ultrasound tells me that you need someone who is an outside-the-box thinker. That might be an MD, DO, ND, ENT, endo, etc. If you have been with the same doc for years, that goes both ways. On one hand they are very familiar with your case, on the other hand they might not be looking at the big picture. My humble opinion is that anyone with thyroid issues should at least have a baseline ultrasound. Same goes for the antibody testing, and ongoing monitoring of TSH, Free T3, and Free T4.


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## BatMan (Oct 2, 2013)

They do the blood testing often enough.

Ive read getting the surgery does not cure hashis and many people still have the same symptoms after. I dont know how true this is, but seems commonly said.


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## BatMan (Oct 2, 2013)

Posted this on another thread, basically I find it impossible to titrate and dont know when its right. would like some help with it and give this another crack.

"Im on whole thyroid now. My problem is because i get fluctuations between hypo and hyper I never know what levels are right, and lab tests are only a snap shot of a whole month of titrating, the results could be dramatically different the next day. so basically i find it hard to know when im on a good dose for being raising me out of hypo but not making for vicious spikes when hyper and i have no faith in lab results as they are a snap shot."


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## BatMan (Oct 2, 2013)

Bump, please help.


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## Octavia (Aug 1, 2011)

BatMan, please refresh my memory...do you have sky-high antibodies?

You mentioned in another thread that your voice/voicebox hurts. That, combined with your hyper/hypothyroid diagnosis, should be enough of a reason to get an ultrasound.

Your post has left me with a question...are you sticking with a consistent dose throughout the month, or are you self-titrating up or down depending on how you feel?


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## BatMan (Oct 2, 2013)

GOod to hear voice box is indicative of getting an ultra sound, the docs say it feels normal do doesnt need one. He said its $250 if I want to get it done myself, If I had that id just do it.

I went from 160mcg synthroid to 90mg NDT, unfortunately the body didnt handle the 13ish mcg of T3 in the NDT. So Ive started again at 30mg for 2 weeks, then 60mg, and now 90mg just started. If I dont feel good after 2 weeks ill jump to 120mg NDT and hold for 4 weeks and doctor will run the full tests. Hes across this titration so not going it alone.

So things looking a bit better. Im also get Isabella Wentz book to help me out. Am considering an adrenal test. Although I find the suggestions for checking adrenals and fixing them first before treating thyroid a bit funny, so what do people do, just not take thyroid meds, good luck with that bahahaha. Also the treatment of adrenal issues seem a little quackery. Still open minded enough to give it a try.


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## bigfoot (May 13, 2011)

Adrenals and thyroid are very closely connected, but you're right, what is a person to do? Kind of like the chicken vs. egg argument. At this point, you've been on thyroid meds for quite a while and it sounds like you need to get optimized. I think supporting the adrenals in the background is a good idea, but yeah, stopping thyroid treatment is a no-go. Ideally, docs should check adrenal function at the outset, but that isn't likely to happen for most.

Even something simple like 1,000 - 2,000 mg daily of Vitamin C can potentially help the adrenals. You want the buffered kind of Vitamin C, otherwise your stomach will get upset. If you do get diarrhea, best to throttle back a little bit and find the dose you can tolerate. You can break up the dosing into 500mg increments and spread it throughout the day (maybe with meals, 2-3 times a day), especially since excess Vitamin C basically passes right on through.

FYI - there are a lot of adrenal support supplements out there on the market, but I'd be very careful about going that route without consulting with a doc or naturopath first. I went solo and figured I'd do it myself, and what a mistake that was!

Adrenal testing is best accomplished by way of a 24-hour urine or saliva collection, broken into different time periods. A one-time blood test for adrenals/cortisol is not going to give the full picture. Not only that, but something as simple as lab work can spike the levels in folks who don't like needles. Now add in traffic and running late to get to the lab, and all of a sudden that one-time number starts getting more and more skewed.


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## BatMan (Oct 2, 2013)

Thanks for that

Ive done the adrenal blood test and the 24 hour urine/acid test. I believe these just to be an average though. I have considered the salivary test but its only 3 times in the day, like 8am, 12pm, 8pm, something like that. Very similar to the 4 salivary test but costs $180 which I just dont have :-(

I think its ludicrous to wait to treat adrenals first, how long does that take, months, and not treat the thyroid? I think thats quackery. Also people say you should be on a NDT for 6-8 weeks before getting tests, yet they also say to raise quickly, like every 2 weeks. Again that seems quackery to me. Feel like crap for 8 weeks not knowing whats going on yet throw more med at it?

Sometimes I wonder if we try to hard holistically as there is no real guidelines for some issues.


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## bigfoot (May 13, 2011)

I think much of it depends on, for example, which state you live in. In some states naturopathic medicine is all but forbidden, and in others ND's have the ability to function as a PCP, write prescriptions, order & interpret labs, tests, and so forth. Plus, all these self-help books floating around are great for educating yourself, but sometimes there's no substitution for a doc who is well versed in things looking at your particular case. On top of that, the treatment (whether mainstream or naturopathic/holistic) that works for one person might not work exactly the same for someone else. In fact, I know that if I ramp up NDT or T3 too quickly I'd be a mess. Been there, done that.


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## toridailene1992 (Jun 5, 2014)

I am 22 and was just recently diagnosed with Hashi's disease. I have been ill off and on for about five years now, not knowing why. It has gotten worse in the last two years so I decided to give the doc another shot. She noticed my thyroid was enlarged and decided to do blood work... I go see an endocrinologist next month, and am on the road to recovery (hopefully not a long one). I am sorry you have been struggling for so long, I hope you find what works for you soon! I know I'm ready to feel "normal" again!!!


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## Airmid (Apr 24, 2013)

BatMan said:


> They do the blood testing often enough.
> 
> Ive read getting the surgery does not cure hashis and many people still have the same symptoms after. I dont know how true this is, but seems commonly said.


Actually that seems to have more to do with antibodies after the fact according to new research. As the antibodies fall (as there is no more thyroid to attack) things get better. Depending on how high they were it can take a while.

The other consideration is that people expect immediate results and sometimes balancing after surgery isn't easy. It takes a few months for normal cases, longer for others. Some people consider themselves not cured due to this.


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## Swimmer (Sep 12, 2013)

You asked in the original, "has anyone ever gotten better, ever?" The answer to that is YES. Not only does my Western Endo easily admit that this thing can get into remission or reversal; but there are people on Hashimoto's 411 who write in over and over about how they got the attack to stop. Not everyone can do this. Some can. I love reading the success stories!


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## surge (Aug 15, 2012)

Hi, Batman-- I haven't looked around to see your other posts, so apologies, I don't know much about your history. I will say that I bottomed out two years ago this summer-- feeling both hyper and hypo. They moved my medication around and it wouldn't affect my numbers. My antibodies were really high, so this was our guess, that the antibodies made medicating me a little difficult.

Because I had several nodules, my endo and primary care doc both thought removal was warranted. I found a great surgeon and got it out. It wasn't magic, like I hoped. It took removing wheat (though not with hyper-vigilance, not like I have an allergy) and also still took some bumps around with dosing. I still went hypo a lot, but even that didn't feel as bad as the summer before when I was swinging between both. It took me about a year to find the sweet spot as far as dose. It also, I think, just took some time to recover from the internal havoc.

I do now have other AI issues, which did crop up about a year post-surgery. So, if you have hashi's, do know that there's a good chance that what you're feeling isn't just thyroid. It's just really hard to separate it all out. But also know that anything you can do to find a better spot for you will help you see these other issues more clearly.

My thyroid numbers still move around a bit, though no where near as bad as it was. Whenever I feel bad from thyroid or the other AI issues, I make a conscious effort to kick out dairy for a bit, on top of not eating wheat, up the whole foods and I also make sure I get moving-- some exercise every day, a lot of days just walking. If you have been up and down so much over these past several years, your body is probably exhausted so do look consciously, if you don't already, for gentle movement like walking or yoga and lots of sleep. I know when I was where you were at, THIS was the hardest thing.

There's a great article about the confusion of thyroid related autoimmune disease by Meaghan O'Rourke from last August's New Yorker. I think it should be required reading for all people with harder-to-manage thyroiditis. Here's a link to the first paragraphs:

http://www.newyorker.com/reporting/2013/08/26/130826fa_fact_orourke

I attached the whole article, too.

What she captures is just how little is known about how to best proceed with confusing cases. Also, how lonely it can be.


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