# Hashimoto's course of disease



## hashimotocoaster (Mar 22, 2013)

Hello. I'm new here, and I posted a summary of my adventures in Hashimoto's in the newbie thread. What I'm wondering is what I can expect from here on out. I was sort of under the impression that my thyroid would gradually shut down and I'd gradually increase my dose of Synthroid until my thyroid was dead and I could find a steady dose. That hasn't happened so far. A summary:

August: TSH 4.98
September: TSH 7.9
October (one week later!): TSH 4.6
Later in October: TPO antibodies 125 (!)
November 9: started 25mcg Synthroid
December 20: TSH 2.6, increased to 50mcg Synthroid based on symptoms
Early January: increased to 75mcg Synthroid based on symptoms
February 14: TSH 0.115 (!)
The next week: decreased to 50mcg Synthroid
March 21: TSH 0.615
Tomorrow: decreasing to 25mcg Synthroid

Huh?

I've had my fair share of hypo and hyper symptoms (I still can't decide which is more unpleasant!) and I could spend all night listing them, but I won't (for now!). Now, I KNOW that 25mcg is NOT a full replacement dose of T4. I'm 5'6" and 110 lb., so I know I wouldn't need a huge dose, but... this is just weird. What on earth is my thyroid doing and why won't it shut up already?

(Also, I know I need to have a Free T3 and T4 done, but my medical care is pretty shoddy due to me not having health insurance. I'm working on it.)

So, how long does it take for things to level out? Do they ever?

And: my mom has Graves, so should I be concerned about swinging hyper?


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## bigfoot (May 13, 2011)

Graves is a possibility, as are other things, but without the Free T3 & T4 you mentioned, it's hard to speculate. Graves isn't really my area, but I know a lot of folks here can chime in with tons of info. Ideally, you'd have Thyroglobulin Ab's tested along with the TPO Ab's, and even TSI (Thyroid Stimulating Immunoglobulin). But I will say that it's possible you need a dose between 25 mcg and 50 mcg of Synthroid (say, 37.5 mcg). You could split a 75 mcg pill, or take a full 25 mcg pill combined with a split 25 mcg pill. And I'm sure you've already told your doc this, but they should know about your mom having a history of Graves Disease.

:hugs:


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## hashimotocoaster (Mar 22, 2013)

bigfoot said:


> Graves is a possibility, as are other things, but without the Free T3 & T4 you mentioned, it's hard to speculate. Graves isn't really my area, but I know a lot of folks here can chime in with tons of info. Ideally, you'd have Thyroglobulin Ab's tested along with the TPO Ab's, and even TSI (Thyroid Stimulating Immunoglobulin). But I will say that it's possible you need a dose between 25 mcg and 50 mcg of Synthroid (say, 37.5 mcg). You could split a 75 mcg pill, or take a full 25 mcg pill combined with a split 25 mcg pill. And I'm sure you've already told your doc this, but they should know about your mom having a history of Graves Disease.
> 
> :hugs:


Thanks bigfoot. Yes, I told the doctor my mom has Graves'. The onset of her disease was sort of different from mine, though they hit us both around the same age (late 20s). Maybe I'm wrong, but I feel like if I had Graves', I'd be off the wall on Synthroid, but it still worries me. Hashimoto's is rough but at least it doesn't normally involve radiation or surgery. I felt pretty decent on 50mcg, at least this go around, at least decent compared to how I felt six months ago! We'll see what happens on 25mcg, I suppose. I'll work on getting those labs!


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## bigfoot (May 13, 2011)

It does take 6-8 weeks for T4 (levothyroxine) to fully build-up in your system. Although many of us notice changes within days or weeks.

And I apologize -- I missed the mention in your post of you taking 75 mcg at one point. My hunch is it was the 75 mcg that probably put you hyper and over on your TSH.

Actually, a TSH of 0.615 is not bad whatsoever. Keeping your TSH low helps keep the antibodies suppressed and lowers the attack on your thyroid. While technically the newer TSH range is 0.3 - 3.0, everybody is different in what they need. So don't be afraid to advocate to your doc if you're still not feeling well and the labs are "normal".


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## hashimotocoaster (Mar 22, 2013)

bigfoot said:


> It does take 6-8 weeks for T4 (levothyroxine) to fully build-up in your system. Although many of us notice changes within days or weeks.
> 
> And I apologize -- I missed the mention in your post of you taking 75 mcg at one point. My hunch is it was the 75 mcg that probably put you hyper and over on your TSH.
> 
> Actually, a TSH of 0.615 is not bad whatsoever. Keeping your TSH low helps keep the antibodies suppressed and lowers the attack on your thyroid. While technically the newer TSH range is 0.3 - 3.0, everybody is different in what they need. So don't be afraid to advocate to your doc if you're still not feeling well and the labs are "normal".


I didn't know that low TSH keeps antibodies suppressed--thanks! I've actually felt okay on round #2 of 50mcg (was on it for five weeks). I've felt slightly hyper (my hands shake pretty bad sometimes, I have occasional heart palpitations, and it's gotten pretty expensive to feed myself because I eat and then an hour later I'm hungry again!) but not terrible, comparatively.


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## Marc Ryan (Mar 22, 2013)

As a functional medicine practitioner and Hashimoto's patient I have found that there are always 2 things in play when dealing with Hashimoto's: this is a thyroid disorder and an autoimmune disease. I am always astonished at how little attention is given to the autoimmune part of this disease. This is the part that is progressive and, often, unpredictable.

Since you are relatively newly diagnosed, the issue could be that you just need some time to settle in and find the proper dosage that works for you. The other issue could be that you are in a reactive autoimmune state and this is causing fluctuations in hormone levels and symptomology.

What are you doing to address the autoimmune part of your condition? Has anyone ever discussed this with you? The obvious things to address are diet, stress and other issues that could be driving the autoimmune response.


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## hashimotocoaster (Mar 22, 2013)

Marc Ryan said:


> As a functional medicine practitioner and Hashimoto's patient I have found that there are always 2 things in play when dealing with Hashimoto's: this is a thyroid disorder and an autoimmune disease. I am always astonished at how little attention is given to the autoimmune part of this disease. This is the part that is progressive and, often, unpredictable.
> 
> Since you are relatively newly diagnosed, the issue could be that you just need some time to settle in and find the proper dosage that works for you. The other issue could be that you are in a reactive autoimmune state and this is causing fluctuations in hormone levels and symptomology.
> 
> What are you doing to address the autoimmune part of your condition? Has anyone ever discussed this with you? The obvious things to address are diet, stress and other issues that could be driving the autoimmune response.


Good question!

I often have to catch myself when I get mad at my thyroid, because my thyroid would probably have been perfectly fine had my immune system not decided to ambush it.

No doctor has ever discussed the autoimmune nature of my condition--it seems like they're just waiting for my thyroid to die instead of trying to stop it from happening. There's got to be a better way, but as a society we're so much more interested in medicating illness than preventing or curing it.

I do have a lot of stress in my life, but my diet is okay (I'm pesco-vegetarian, and I try to avoid goitrogens and overly-processed foods) but not perfect. I seriously cut down on gluten back in the fall for a while but I didn't notice any difference. I know I should probably give it more time than that, but it's really expensive to buy gluten-free products and frankly I'm afraid I'd lose weight if I cut out bread and pasta.

When you say "reactive autoimmune state," what exactly do you mean? I assume it means that my immune system is freaking out, but beyond that, I'm not sure what that entails.

Thanks for your reply!


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## bigfoot (May 13, 2011)

Gluten can be mistaken by the body for thyroid antibodies, fooling your body into thinking it's still under attack. How long were you gluten-free for? It took me 3-4 weeks to really start noticing positive changes. (Gluten can supposedly hang around in the system for a while.)


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## hashimotocoaster (Mar 22, 2013)

Maybe a month, though I did have bread a few times. I lost a few pounds despite being hypothyroid, which is part of why I gave up.


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## Marc Ryan (Mar 22, 2013)

Yes, Hashimotocoaster (that's funny!),

You are correct, it means that your immune system is revved up and in attack mode. Some of us Hashi folks go through a hyper phase before enough of our thyroid gets destroyed and then we settle into the hypo phase for the long term.

Are you familiar with the different aspects of the immune system: TH-1, TH-2, TH-3 and TH17?

I'd like to post a link to my website where I have written an in depth discussion about what exactly is happening to the immune system with Hashimoto's, but I'm not sure about what is proper etiquette in this forum.

Rather than give you a quick answer, I'd like to offer something more substantive. Let me put that question to the moderator and I'll get back to you.


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## hashimotocoaster (Mar 22, 2013)

Thanks--I'd love to see a link, if possible. And yes, I try to maintain a sense of humor about the whole thing!


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## bigfoot (May 13, 2011)

hashimotocoaster said:


> Maybe a month, though I did have bread a few times. I lost a few pounds despite being hypothyroid, which is part of why I gave up.


Yeah, even a quick "eh, this really isn't THAT much gluten" moment can cause problems. It's an all-or-nothing approach.

:tongue0013:

If you have a Trader Joe's, Whole Foods, etc. nearby you can start working some GF products into your pantry. Trader Joe's has pretty good prices on their gluten-free items, and some stores clearly mark what is GF and what is not. Bob's Red Mill also makes some excellent GF products, as does Bisquick now. A good brown rice pasta brand is Tinkyada (tip: quickly rinse in hot warm water after draining and adding back to the pan; this eliminates the slimy texture). A lot of the dry goods can be found on Amazon for far less than the fancy stores.

Potatoes, corn, quinoa, and rice are all safe bets. Sushi is okay, just watch for lots of seaweed wrapping (iodine) that can be problematic for Hashi's. Also, avoid soy sauce (full of wheat -- somehow I missed this for a while), although there is a GF version. Oats can be tough -- you'd want to get some that are specifically marketed as GF. Off the top of my head, here's some more of the larger brands that have GF: Amy's Kitchen, Glutino, Udi's, Annie's, Franz, etc.

A lot of this stuff is trial-and-error tasting and preference. A bread from one company might taste gross, while bread from another is great. If you cruise the bakery aisle you might find local bakeries cooking up good, hearty GF breads.

Okay, enough rambling from me, just wanted to throw that out there in case you decide to go back on the GF bandwagon.


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## Andros (Aug 26, 2009)

hashimotocoaster said:


> I didn't know that low TSH keeps antibodies suppressed--thanks! I've actually felt okay on round #2 of 50mcg (was on it for five weeks). I've felt slightly hyper (my hands shake pretty bad sometimes, I have occasional heart palpitations, and it's gotten pretty expensive to feed myself because I eat and then an hour later I'm hungry again!) but not terrible, comparatively.


Absolutely; that is how my doc and I keep my Lupus antibodies at bay. My TSH is always 0.03 or less. Free T3 is at about 75% of the range. Always.


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## hashimotocoaster (Mar 22, 2013)

bigfoot said:


> Yeah, even a quick "eh, this really isn't THAT much gluten" moment can cause problems. It's an all-or-nothing approach.
> 
> :tongue0013:
> 
> ...


bigfoot, thanks for your reply! I tried GF pasta once--it was Annie's, I believe--and the sliminess made it inedible, but I'll have to try this other brand.

I adore sushi and I actually thought the iodine from the seaweed might be good, but yikes! When I was still trying to get a diagnosis and was very hypo I ate a lot of those "seaweed snacks" (they are clearly using a liberal definition of what constitutes a "snack"!) and I thought they helped me feel a little better, but it's always so hard to say.

I feel like my diet is already so limited that it would be difficult to restrict it further, especially if I intend to continue having meals with other people on occasion. I don't eat meat (except for seafood), haven't for years, and I'm inflexible on that. I've also been avoiding goitrogens, which is awful, because I love spinach and strawberries and sweet potatoes and everything else goitrogenic. I stopped eating soy products about a year ago (imagine, a vegetarian not eating soy products!), before I even knew I had Hashimoto's, because I felt like it was messing with me in a really negative way, and it turned out I was right. (I do occasionally have a little bit of soy sauce on my sushi, though. Did I mention I love sushi?) I love Amy's Kitchen stuff and I eat some of their gluten-free meals fairly frequently. I do have a meal with brown rice almost every day, but man, it's hard to give up bread!

I'll keep all that info in mind, though, if I decide to give it another go. Thanks!


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## nvsmom (Sep 30, 2012)

hashimotocoaster said:


> bigfoot, thanks for your reply! I tried GF pasta once--it was Annie's, I believe--and the sliminess made it inedible, but I'll have to try this other brand.
> 
> ... (I do occasionally have a little bit of soy sauce on my sushi, though. Did I mention I love sushi?) I love Amy's Kitchen stuff and I eat some of their gluten-free meals fairly frequently. I do have a meal with brown rice almost every day, but man, it's hard to give up bread!


Gluten free rice pastas should always be eaten while still slightly firm, and almost undercooked... what's the term? El dente? Rinse it very well and make sure it is drier than normal pasta before serving it (I add a vegan butter substitute so it's not too sticky).

GF processed foods and baking takes some getting used too! 

If you are switching to gf, watch out for soy sauces, gluten is in most varieties.


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