# New to Hashimotos



## gloworm358 (May 28, 2014)

I started a thread in the General Discussion forum when I first was told I had a thyroid issue, but I will move mine here permanently as I was told today that it appears to be Hashimotos.

36 y.o. Mom of 2

AntiThy 1.4 (Range 0-0.9)

TPO 535 (Range 0-34)

TSH 4.19 (Range .5-4.7) (I understand that this is a higher range than most think acceptable)

Free T4 1.06

Nodules:

Left 1.8x.8 cm

Right 5x4x3 mm

Right 6x5x4 mm

I repeat bloodwork and thyroid ultrasound in September. There is some confusion as to whether the 1.8cm nodule is a nodule or swelling, which is why this will be repeated.

I was told that I will be referred to an Endo in September if my TSH is over 4.7, which they seem to expect will happen at some point.

So, I'm full of questions. Gluten? What do I need to be doing in general? I seem to be asymptomatic at this point, although I suffer from bad periods, possibly some tiredness, and seem to be cold a lot.

I exercise daily and eat well.

Any info vastly appreciated.


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## bigfoot (May 13, 2011)

The AACE recommends a TSH range of 0.3 - 3.0. A TSH of 4.19 is not horrendous, but keep in mind that the TSH value does not equal severity of signs & symptoms. Likewise, with the antibody numbers. I'll echo what most say here, and that is aiming for a suppressed TSH of 1.0 or less, and a FT3 & FT4 at 50-75% of the reference ranges. That's all easier said than done, and may require individual tweaking, but is a good goal to start with.

Glad they did an ultrasound and have a follow-up one planned. Also good you will see an endo. Just keep in mind to advocate for yourself, get and keep copies of all labs/tests, and try to get optimized, not just "normal" or "in range". Watch out for docs who want to only follow the TSH -- you need FT3 and FT4 (at a bare minimum) to get an idea of progress. Antibodies will wax and wane, so your values from the last labs could be totally different in a week, a month, a year, etc. They will fluctuate over time.

While you are not symptomatic now, that probably won't continue forever, so the earlier the jump you get on this now, the better. Sounds like you are doing that already, which is great! 

Honestly, the best thing you could do is scroll through some of the posts here and get a general idea of what others are doing, and maybe apply some of that to your situation. If you have any specific questions, please fire away!


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## joplin1975 (Jul 21, 2011)

Yes, to everything bigfoot said and I will also say (possibly repeating myself..apologies ahead of time) that it's REALLY easy to say you are not symptomatic. It's REALLY easy to brush a lot of these early signs off as a factor aging, a side effect of a busy life, etc etc etc. Just something to file away in the back of your head.


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## bigfoot (May 13, 2011)

^^ Agree with this big time. ^^

Imagine my surprise when strange rashes on my arms, that no doctor could identify or diagnose for months, immediately went away within days of starting T4 meds years ago. They couldn't explain it. But that just proves the point -- don't expect docs to know (or agree) about every possible sign & symptom. There is just too much out there we don't know about. And that's okay, ultimately it's about getting you feeling better and keeping you healthy, not some arbitrary list or lab value in a dusty medical textbook.


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## gloworm358 (May 28, 2014)

Well, after some thought and time to read and learn more, I did ask my gyno for a referral to an Endo. I didn't want to step on anyone's toes, but I would simply rather see a specialist sooner rather than later.

They are working on the referral now, but said if I cannot get in before my Sept bloodwork and ultrasound (the office has a wait for new patients until November), that I will still do those tests with my gyno.

2 possible symptoms?:

Is melasma related to Hashis? I have had a random spot of it here or there over the last couple of years, abut about 3 weeks ago my entire face broke out in total melasma. I wear Full spectrum 35 spf sunscreen moisturizer daily. Also,while I was at the beach (4 days) I wore full spectrum 85 spf Neutrogena sunscreen with a hat and usually sat under shade. It was just so sudden and complete that I was wondering if there was any correlation. I'm going to the dermatologist today where I assume they will rx Tri-Luma.

Additionally, I NEVER get rashes. But last week I woke up and my arm was covered in a rash from wrist to elbow. I used cortizone and it went away over the course of a few days. I had been at home the day before and had no new contact with anything that I know of. Correlation?

As always, thanks for any and all replies!


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## CA-Lynn (Apr 29, 2010)

You might want to have HLA-B27 run, which is a marker for certain inflammatory diseases.

The very fact that your antibodies are abnormal should be sufficient reason to see an endocrinologist.

Don't worry about stepping on anyone's toes. You need to be your own advocate. It's about YOU, not about THEM.


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## toridailene1992 (Jun 5, 2014)

What works for me is no gluten and no dairy. I seem to feel a lot better. My symptoms are still there, but not quite as bad. My thyroid antibodies were 908 which is INSANE!! (normal <30) I also just got tested for Lupus and it came back positive. Double whammy, whoo hoo!  I'm getting an ultrasound on my thyroid in the morning and I'm nervous to what they're going to find because it is very swollen. Good luck to you, I hope you start feeling better real soon


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## gloworm358 (May 28, 2014)

Well, the Specialist's office called today....and I have an appt for Dec 4 (wow). Then my gyno's office called and told me that if something "shows up" on my bloodwork and ultrasound with them in Sept, that the Specialist's Office will go ahead and see me.

On one hand, it makes me feel a little "Oh, they saw my tests and there is no rush. That's good news. Right?"

On the other hand, my Antibody numbers make me think that I should be on some meds....but I'm no DR, so I plan to sit back and (try) not to stress until my appts


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## gloworm358 (May 28, 2014)

toridailene1992 said:


> What works for me is no gluten and no dairy. I seem to feel a lot better. My symptoms are still there, but not quite as bad. My thyroid antibodies were 908 which is INSANE!! (normal <30) I also just got tested for Lupus and it came back positive. Double whammy, whoo hoo!  I'm getting an ultrasound on my thyroid in the morning and I'm nervous to what they're going to find because it is very swollen. Good luck to you, I hope you start feeling better real soon


Good luck with your ultrasound!!


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## CA-Lynn (Apr 29, 2010)

You said that you're asymptomatic......but then.......they ran antibodies tests for a reason, so that makes me think you have/had symptoms. What were they?


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## gloworm358 (May 28, 2014)

CA-Lynn said:


> You said that you're asymptomatic......but then.......they ran antibodies tests for a reason, so that makes me think you have/had symptoms. What were they?


They initially ran my tsh and did an ultrasound when the doc spotted my enlarged thyroid when I went in for my yearly exam. Once my tsh came back high'ish and 2, possibly 3, nodes were found on my neck, he ordered additional bloodwork. That's when they did the antibody test.


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## gloworm358 (May 28, 2014)

New lab results. My Gyn wants me to start 50mcg of Synthroid with a blood test in 8 weeks. Endo appt not until Dec. Ultrasound of thyroid shows growth of nodule and continued inflammation (don't have the exact numbers yet).

However, I read today that even with nodules, inflammation,and a heightened TSH, if the T4 is "normal", then your body is getting the right amount of thryoxine. Is this true? if so, do I need to be taking Synthroid yet? Please refer to newest Lab results below.

Any advice so appreciated!

ETA: Funnily enough, the Endo called me right after I wrote this post. They want me to come in Wednesday (huge improvement from Dec 5!). They told me to hold off on any meds until then.

5/27/14

TSH 4.19 <0.450-4.500 uIU/mL>

T4 Free 1.06 <0.82-1.77 ng/dL>

Thyroid Ultrasound (Left 1.8x.8 cm, Right 5x4x3 mm, Right 6x5x4 mm)

6/12/14

Thyroglobulin, Antibody 1.4 <0.0-0.9 IU/mL>

Thyroid Peroxidase (TPO) Ab 535 <0-34 IU/mL>

9/19

TSH 4.77 <0.450-4.500 uIU/mL>

T4 Free 1.10 <0.82-1.77 ng/dL>


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## joplin1975 (Jul 21, 2011)

Glad to hear you are getting in early!

A lot of times, meds can keep you TSH suppressed, which helps keep the antibodies in check and generally helps prevent or manage flare ups. So lots of people still use meds even if they fall in the "normal" category. And, importantly, "normal" does not always = optimal.


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## gloworm358 (May 28, 2014)

joplin1975 said:


> Glad to hear you are getting in early!
> 
> A lot of times, meds can keep you TSH suppressed, which helps keep the antibodies in check and generally helps prevent or manage flare ups. So lots of people still use meds even if they fall in the "normal" category. And, importantly, "normal" does not always = optimal.


Ahh, that makes complete sense. Thank you!

When I see the Endo, is Synthroid usually the first line med for my issues (numbers+nodules/inflammation)? I keep seeing a lot of info on Armour and other meds.


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## joplin1975 (Jul 21, 2011)

Synthroid (and it's sister drugs) usually is the first line of defense. The reason being that if you don't need meds that combine t4 and t3, which is what Armour and other drugs do, it can be dangerous. You hear a lot about it on these boards because these are the people who are struggling the most, which means those are the people who -- generally -- don't effectively convert t4 (the active drug in synthroid) to t3 (the hormone your body needs for basic metabolism). But, if you do effectively convert (and that would be me!), the addition on t3 would be like mainlining rocket fuel and would probably cause me to stroke out.  So, the rule of thumb is to start simple first and then go from there.


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## gloworm358 (May 28, 2014)

You definitely simplified that so my eyes aren't spinning anymore  Thank you again!


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## Andros (Aug 26, 2009)

Have you not had FNA (fine needle aspiration) of any of those nodules?


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## gloworm358 (May 28, 2014)

Andros said:


> Have you not had FNA (fine needle aspiration) of any of those nodules?


My Gyn said that the nodules on the right didn't need to be biopsied bc they were small, and that he needed a second scan of the one on the left in 3 months bc the report read "probable nodule". The second scan (3 months later) revealed that the one on the left is a nodule, so he wants the Endo to make the fna decision. I will see the Endo in the morning.


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## gloworm358 (May 28, 2014)

Yay! Had my Endo appt!
First off, I don't have nodules. Endo said what I have is scarring that is large enough and thick enough to be confused with nodules. She said it's good and bad news....good that I don't have nodules, but possibly bad bc scar tissue constricts over time and I have a lot of that in my thyroid.

Thyroid is nearly double in size on left side now, and enlarged on right side, but not as much. Left side is considered a goiter.

She confirmed the hashis dx based on Antibodies.

Starting on Synthroid. Blood tests every 2 months and ultrasounds (to keep an eye on scar tissue) every 4-5 months for awhile. She said she would like to get me on an optimum dose of Synthroid soon so as to keep the thyroid from continued swelling and scarring.


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## gloworm358 (May 28, 2014)

So, I have been on Synthroid for about 9 days now, only on .25mcg bc of a minor heart issue. I move to .50mcg tomorrow.
The past 2-3 days I've felt....different. Not HUGELY different, but different.

I usually go to sleep around 830-9 pm (as soon as my kids go to bed) and wake up at 530 am. By 830pm each night, I am EXHAUSTED. Like, dragging myself to bed exhausted. Of course, I have 2 children, both special needs, in addition to working all week, so tiredness has simply been a fact of life.

But the past 3 nights, I haven't been exhausted. I haven't been hyped up or had issues sleeping, but I find myself looking at the clock and thinking "9 pm? Wow, I better get in bed". Then I get in bed and actually read for awhile before going to sleep. Which kind of blows my mind.
Today I came home from a pretty tiring shift, and managed to clean my house top to bottom. Not in a manic "I have too much energy" way. I just came home and wasn't tired.
I have also lost 3 lbs in a week. This stands out to me because I have to eat 1500 calories a day and walk 2 miles 6 days a week to maintain my weight. A change of 3 lbs does stand out.
Can the medication really start to work this fast? Or is my brain enacting an excellent placebo effect? I mean, .25mcg isn't much at all, right?


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## joplin1975 (Jul 21, 2011)

It's very likely you are feeling the effects of the synthroid. For some people, the impacts can be felt sooner rather than later. So, congrats!

Just be self-aware...sometimes what happens is people feel great initially and then go back to feeling sluggish again. You body sort of "catches up" and you might need a dose increase. But starting low and slow is a good plan.


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## ifthespiritmovesme (Jan 8, 2014)

25 mcg was enough to make me lose 50 nlbs. in 6 weeks.....


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## gloworm358 (May 28, 2014)

joplin1975 said:


> It's very likely you are feeling the effects of the synthroid. For some people, the impacts can be felt sooner rather than later. So, congrats!
> 
> Just be self-aware...sometimes what happens is people feel great initially and then go back to feeling sluggish again. You body sort of "catches up" and you might need a dose increase. But starting low and slow is a good plan.


Wow, thanks! I had another similar night. Went to bed later than normal feeling "not exhausted". Woke up clear headed and well rested on 7 hours of sleep, which is very new to me. I moved my dose up to .50 mcg this morning as instructed. I hated to mess with my dose since I'm enjoying this energy, but I'm following the instructions to the letter.
Thank you for the warning about feeling sluggish.....now I'll be prepared!


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## gloworm358 (May 28, 2014)

ifthespiritmovesme said:


> 25 mcg was enough to make me lose 50 nlbs. in 6 weeks.....


Goodness, I've obviously been underestimating the .25mcg!


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## Andros (Aug 26, 2009)

Can you get a copy of the original ultra-sound report by any chance? The radiologist/sonographer who does the read out rarely makes mistakes like that. In my humble opinion.


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## gloworm358 (May 28, 2014)

Andros said:


> Can you get a copy of the original ultra-sound report by any chance? The radiologist who does the read out rarely makes mistakes like that. In my humble opinion.


I actually do have a copy of the original report. The radiologist said there were 2 small nodes in the right and a probable >1 cm node in the left. 
I will say that the endocrinologist who decided the areas were actually significant areas of scar tissue spent about twice as long assessing me via ultrasound, if that makes any difference.
She said that my thyroid is so enlarged and significantly scarred that the areas can be easily misinterpreted as nodules.
Should I be getting another opinion?


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## Andros (Aug 26, 2009)

TPO and thyroglobulin
http://onlinelibrary.wiley.com/doi/10.1111/j.1699-0463.1994.tb04888.x/abstract
http://www.wikigenes.org/e/gene/e/7173.html
(Copy and paste into your browser)

Understanding Thyroglobulin Ab.
http://www.labtestsonline.org/understanding/analytes/thyroglobulin/test.html
(Copy and paste into your browser)

Thyroglobulin Ab and cancer
http://qjmed.oxfordjournals.org/content/59/2/429.full.pdf

I believe we talked about this in another thread. You do have Thyroglobulin Ab and you do have TPO Ab. High titers of both. If I were you; I would see an ENT.

Sending hugs your way! Let us know what you decide!


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## gloworm358 (May 28, 2014)

Andros said:


> TPO and thyroglobulin
> http://onlinelibrary.wiley.com/doi/10.1111/j.1699-0463.1994.tb04888.x/abstract
> http://www.wikigenes.org/e/gene/e/7173.html
> (Copy and paste into your browser)
> ...


 Is there a place I could chat with you in real time? GMail chat? FB?


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## Andros (Aug 26, 2009)

No, I am not signed up in any chats. Sorry!


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## gloworm358 (May 28, 2014)

Andros said:


> No, I am not signed up in any chats. Sorry!


 Thanks  I didn't want to be as annoying with a series of questions posted separately. I'll try to get them all in one post.
I've read the articles, but I'm having some issues understanding them entirely. Is it possible for Hashi's alone to be responsible for the Thyroglobulin Ab and TPO Ab? Additionally, how easy is it to mix up scar tissue and nodules? The Endo seemed certain that it was scar tissue, while the Radiologist only labeled the >1cm nodule as "probable".
TIA!


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## jenny v (May 6, 2012)

I think it can be pretty easy for the techs to confuse scar tissue and nodules, especially if the thyroid is pretty damaged. In my case, the tech thought that my entire right lobe was covered in tiny nodules and it turned out that side was basically all scar tissue once the surgeon was in there. The scan also didn't catch that my thyroid was growing backwards into my throat and had displaced my esophagus.


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## gloworm358 (May 28, 2014)

jenny v said:


> I think it can be pretty easy for the techs to confuse scar tissue and nodules, especially if the thyroid is pretty damaged. In my case, the tech thought that my entire right lobe was covered in tiny nodules and it turned out that side was basically all scar tissue once the surgeon was in there. The scan also didn't catch that my thyroid was growing backwards into my throat and had displaced my esophagus.


Thank you for the information Jenny!
What caused the DR to decide on your TT? Is that ok for me to ask?


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## jenny v (May 6, 2012)

> What caused the DR to decide on your TT? Is that ok for me to ask?


Sure! Because my thyroid was growing back into my neck (and swelling outwards slightly, too) I started having problems with choking on food and difficulty breathing when I lay on my back, so I was having physical issues that necessitated removal (and add in all of the side effects from uncontrolled Hashi's, too).


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## Andros (Aug 26, 2009)

Anti-microsomal Antibodies- TPO Ab
Negative test is normal; you should not have any of these antibodies. And the healthy person does have a low titer of TPO.

Mild to moderately elevated levels of thyroid antibodies may be found in a variety of thyroid and autoimmune disorders, such as thyroid cancer, Type 1 diabetes, rheumatoid arthritis, pernicious anemia, and autoimmune collagen vascular diseases. Significantly increased concentrations most frequently indicate thyroid autoimmune diseases such as Hashimoto thyroiditis and Graves disease.
http://labtestsonline.org/understanding/analytes/thyroid-antibodies/tab/test
(Copy and paste into your browser)

High titers of TPO Ab and Thyroglobulin Ab are "suggestive" of many things, two of them being cancer and Hashimoto's. They are not definitive.


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