# Hashi's Treatment or Wait and See Approach



## Breeze123 (Jun 1, 2011)

After initially being diagnosed with Graves about 4 years ago, I was subsequently diagnosed as having Hashi's. My initial endo said that my Graves caused my hashi's and treated me for hypothyroidism. I felt great. Once my thyroid levels were normal, he took me off of levythyroxine. I've since moved and have been seeing one of the best endo's in the area. I go to see him every 3 months. During this time, my TSH has varied from 3.0 - 6.5, but I have never been treated, because I did not have any crazy symptoms. And my antiboides increase with every visit (well over 10,000). Over the past 6 months, I've been feeling awful: foggy thoughts, tremors, intolerance to heat, heart palpitations. These symptoms have increasingly grown worse, and I often experience "episodes" that are akin to panic attacks/anxiety.

I recently had an ultrasound that revealed a few nodules consistent with Hashi's. I went to see another endo to get a "second opinion" about my nodules, and he agreed. When I went to see him about 1 month ago, my TSH was 4.3. As of yesterday, my TSH is 5.2.

My endo thinks that my symptoms may be attributable to stress and anxiety, but I am one of the most relaxed people ever. Sure my job is stressful, but I've been under more stress than I am currently. He mentioned possibly puting me on a beta blocker, but I am only 28 years old. I am going to see a cardiologist this week to check out my palpitation issues.

I just feel awful, and it is really beginning to interfere with my job, relationships, and social life. I have always been a social person, but shy away from it, because I often feel so bad that I don't have any energy and all of my friends ask if I'm feeling ok. My doc is hesitant to put me on levothyroxine, because of my crazy levels, but something HAS to give. I feel AWFUL! Anyone have any suggestions or try anything that was helpful?


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## Andros (Aug 26, 2009)

Breeze123 said:


> After initially being diagnosed with Graves about 4 years ago, I was subsequently diagnosed as having Hashi's. My initial endo said that my Graves caused my hashi's and treated me for hypothyroidism. I felt great. Once my thyroid levels were normal, he took me off of levythyroxine. I've since moved and have been seeing one of the best endo's in the area. I go to see him every 3 months. During this time, my TSH has varied from 3.0 - 6.5, but I have never been treated, because I did not have any crazy symptoms. And my antiboides increase with every visit (well over 10,000). Over the past 6 months, I've been feeling awful: foggy thoughts, tremors, intolerance to heat, heart palpitations. These symptoms have increasingly grown worse, and I often experience "episodes" that are akin to panic attacks/anxiety.
> 
> I recently had an ultrasound that revealed a few nodules consistent with Hashi's. I went to see another endo to get a "second opinion" about my nodules, and he agreed. When I went to see him about 1 month ago, my TSH was 4.3. As of yesterday, my TSH is 5.2.
> 
> ...


Welcome to the board!

What antibodies are over 10,000?

Have you had a RAIU (radioactive uptake scan) which if not, I strongly suggest!

And these lab tests are highly recommened; has your doctor ever done these tests?

Even though your TSH is high (by the way, we need ranges in the future as different labs use different ranges), you could be hyperthyroid "if" the binding and blocking antibodies are there blocking the TSI.

TSI
Normally, there is no TSI in the blood. If TSI is found in the blood, this indicates that the thyroid stimulating immunoglobulin is the cause of the of a person's hyperthyroidism.

http://www.medicineonline.com/topics/t/2/Thyroid-Stimulating-Immunoglobulin/TSI.html

Do you have swollen lymph nodes in the neck/clavicle area? Do you have a goiter? What other symptoms do you have besides the arrhythmia, brain fog, heat intolerance all of which by the way are typically hyperthyroid symptoms bearing in mind that nothing is carved in stone.


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## Breeze123 (Jun 1, 2011)

Thanks for the welcome! It is nice to be able to talk with others who have gone through similar experiences.

Unfortunately, I have not had a RAIU. I will definitely ask my endo about this. As for my labs, two different docs performed them, so the normal ranges vary. For the 5.2 TSH [.35-5.5 is normal] and for 4.3 [.52-4.2 is normal]. Over the years, my TSH has significantly fluctuated. In October 2010, it was 6.5 [.35-5.5 normal], but in December 2010, it was 2.4 (same normal ranges). My thyroid antibodies have also consistently increased over the years. In 2007, they were 3,078, but now they are over 10,000. This I know is consistent with Hashi's.

As for my strange symptoms that are akin to hyperthyroidism, I wonder if my thyroid is producing hormones, thereby causing me to have episodes of thyroidtoxicosis. I've read that this has happened to some Hashi's patients. I'm going to a cardiologist tomorrow for my palpitations, but don't think that they are cardio related. My Endo is hesitant to put me on levothyroxine if I am having bouts of thyroidtoxicosis, but something has to give...I feel awful.

My eyes have also been extremely dry. My eye doctor just prescribed Restasis to help me produce tears. I also have calluses in my eyes. Additionally, I am usually a very social person, but now feel awkward in social settings. Finally, a couple of days ago, my lower back felt like I have sunburn, but I have not been in the sun. This symptom alone makes me wonder if I have fibromyalgia (my mom has that and Lupus).

My thyroid is very rubbery (consistent with Hashi's) and has a few nodules (the biggest is .6 cm x .2 x .4. I also have a small goiter.

I am just frustrated, because as a lawyer my job is very demanding and when I feel crappy, I can't work. This has affected my hours, which is not good in this economy. Oh, and did I mention I am only 28 and also have Celiac disease?

Thanks again for your help. It is good to talk with people who have had similar experiences. Although my boyfriend is a physician, I'm sure he'd rather talk about the NBA Finals than my saga of symptoms.


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## Andros (Aug 26, 2009)

Breeze123 said:


> Thanks for the welcome! It is nice to be able to talk with others who have gone through similar experiences.
> 
> Unfortunately, I have not had a RAIU. I will definitely ask my endo about this. As for my labs, two different docs performed them, so the normal ranges vary. For the 5.2 TSH [.35-5.5 is normal] and for 4.3 [.52-4.2 is normal]. Over the years, my TSH has significantly fluctuated. In October 2010, it was 6.5 [.35-5.5 normal], but in December 2010, it was 2.4 (same normal ranges). My thyroid antibodies have also consistently increased over the years. In 2007, they were 3,078, but now they are over 10,000. This I know is consistent with Hashi's.
> 
> ...


So, apparently you feel the TSI test is unnecessary at this time? And once again, may I inquire as to which antibodies you are referring to? If you are talking about TPO (antimicrosomal), high titers are also consistent for other things as well.

http://onlinelibrary.wiley.com/doi/10.1111/j.1699-0463.1994.tb04888.x/abstract

http://www.nlm.nih.gov/medlineplus/ency/article/003556.htm

What do you mean by callus' on the eyes? Is this what is happening?
http://www.womenfitness.net/beauty/eye/pterygium.htm

Incidently, AACE recommends that the range for TSH be 0.3 to 3.0 and some Endocrine groups recommend that the top of the range be even less.

Have you been given labs for Lupus to see if you do have it? Not unusual to have more than one thing going on as you well know!

I am sorry you are suffering so much. Hope you get the medical intervention that you need so you can get on w/your life. You "are" young. I have 40 years on you!


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## Breeze123 (Jun 1, 2011)

Sorry for the confusion. I am new at this. In fact, this is the first time that I've actually read my tests. They're in a foreign language to me. I do not believe that I have had the TSI test, but it sounds like I should. I will put that on my list of things to ask my endo. As for my antibodies that are now over 10,000, according to my records, they are the TPO antibodies, with normal being less than 34. Also years ago, my thryroglobulin antibodies were 98, with normal being less than 40.

My docs tested me for lupus a couple of years ago, but everything came out negative.


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## bigfoot (May 13, 2011)

Welcome to the forum from another newbie! You described a lot of things I've gone through over the last few years, although I've only been diagnosed with hypothyroidism and then (supposedly) Hashi's at this point. :anim_32:

My limited understanding is this (and someone correct me if I'm wrong); you want to test the TSH, Free T3, and Free T4 to get an accurate picture of what is happening with your thyroid levels. Then you want to get that TSI test that Andros mentioned, on top of the TPO Ab and Thyroglobulin Ab tests, to check for various antibodies.

The increased antibodies and potentially wacky T3/T4 levels are what give you the daily signs & symptoms. Not the TSH, that is just the stimulating hormone being sent from the pituitary gland to the thyroid, telling it to release the T4 (which is eventually converted into T3).

Since you have an autoimmune thyroid problem, that means: When your TSH level is higher, that means the antibodies are more active. When your TSH level is lower, that means the antibodies are less active. So you're trying to balance not only the Free T3/T4 values, but keep the TSH suppressed down as well = antibodies suppressed, too. With those three things in balance things should improve.

Another area to investigate, from what I've read and heard, is adrenal gland function. The thyroid, adrenal glands, and pituitary gland all form a big loop.

You really can't just lean on the TSH for evaluation. What you're describing with your TSH values sounds familiar to me. Up, down, and all over the place. I've been told my TSH is "normal" but experience signs & symptoms on a daily basis. It's not the end-all, be-all test that it is made out as.


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## Breeze123 (Jun 1, 2011)

I just looked over the most recent summary I received from the endo who gave me a second opinion. It appears that I had 2 TSI tests done in 2007. The first TSI was in January 2007, and it was 108% [<=125% is normal]. Another TSI was performed in April, and it was 100% [same normal range]. During tomorrow's appointment, I am going to ask the cardio if she can test my TSI.

As for the Free T3 and T4 tests, I had those done with my TSH. T3= 92 [72-180 normal] and T4= 1.01 [.82-1.77 normal]. The second-opinion endo also performed a bunch of adrenal gland tests, but they are all normal as well.

The funny thing is, I've felt more "normal" the past 2 days then I have in a while. I forgot what it feels like to not worry about what my body is going to do and when!


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## bigfoot (May 13, 2011)

My $0.02, but take with a grain of salt, as I'm new and still learning myself:

I guess I am not understanding where the endocrinologists are coming from. You have this huge amount of thyroid antibodies roaming around, your TSH bounces all over, and your have nodules. You were initially dx'd with Graves, and now Hashimoto's. But yet... you shouldn't be experiencing any signs or symptoms? Some of this mantra sounds pretty familiar to me (and probably everyone else here).

[Insert Stressor or Sickness] + Hashimoto's = Signs & Symptoms

Plus, look at your Free T3 and Free T4 values. For example, your Free T3 is 92 [72-180 range]. So... 180 - 72 = 108 point spread. You are 20 points above the bottom range of 72 = 20 points. 20 you / 108 spread = 18.5% Free T3 available. That seems pretty darn low in the "normal" range to me.

If we look at your Free T4 value, that is 1.01 [0.82-1.77 range]. So, 1.77 - 0.82 = 0.95 point spread. You are 0.19 points above the bottom range of 0.82. 0.19 you / 0.95 spread = 20% Free T4 available. That also looks low in the "normal range". So you have 18.5% Free T3 and 20% Free T4 for your body to use at the moment. That just doesn't seem like much.

Glad your TSI and Adrenal tests came back okay. And glad you've been feeling better lately! Hopefully the docs can get something going for you as far as treatment.
hugs6


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## Andros (Aug 26, 2009)

Breeze123 said:


> Sorry for the confusion. I am new at this. In fact, this is the first time that I've actually read my tests. They're in a foreign language to me. I do not believe that I have had the TSI test, but it sounds like I should. I will put that on my list of things to ask my endo. As for my antibodies that are now over 10,000, according to my records, they are the TPO antibodies, with normal being less than 34. Also years ago, my thryroglobulin antibodies were 98, with normal being less than 40.
> 
> My docs tested me for lupus a couple of years ago, but everything came out negative.


High titers of thyroglobulin Ab raises suspicion as well.
Understanding Thyroglobulin Ab.
http://www.labtestsonline.org/understanding/analytes/thyroglobulin/test.html

http://qjmed.oxfordjournals.org/content/59/2/429.full.pdf

You could have Reidel's.

http://www.ncbi.nlm.nih.gov/pubmed/7868819

And this might be of interest to you.
http://www.aafp.org/afp/20000215/1047.html

Thyroiditis and Hashimoto's are used interchangeably; just so you know.

It would be very wise to get the TSI (thyroid stimulating immunoglobulin) test.

TSI
Normally, there is no TSI in the blood. If TSI is found in the blood, this indicates that the thyroid stimulating immunoglobulin is the cause of the of a person's hyperthyroidism.

http://www.medicineonline.com/topics/t/2/Thyroid-Stimulating-Immunoglobulin/TSI.html

Did docs do Anti-DNA, C3 and C4 for Lupus?

You can look this stuff up here and more.........
http://www.labtestsonline.org/

Don't worry; for one thing, when one is ill the mind becomes a bit muddled and for another, this stuff is just as complicated as studying law. Anybody that passes the State Bar has my untold admiration.


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## Breeze123 (Jun 1, 2011)

Since my pcp is across the street from my office, I called her to ask if she could do the TSI test. She REFUSED! She told me that because I've already been diagnosed with a thyroid condition, it is not necessary. So, a few days later, I called my endo, because my symptoms were again at full throttle (palpitations, extreme insenstivity to heat, the whole nine). He told me that I'm having hyper symptoms, but there is no way that I am hyper, because my labs are hypo and some endos would even treat me for hypo. Because of the symptoms I am currently experiencing, he, however, told me that he would not treat me for hypo. He also told me that because of my labs, he thinks that the TSI and RAIU are not necessary. But I am going to see him next week, so that he can perform a tumor-related blood test that (I do not recall the name). Additionally, he prescribed 12.5 mg of Tetralol (a beta-blocker) to see if it helps my symptoms (I could have hugged him through the phone). We're going to try that for 30 days. Fingers crossed that this helps.

Oh and my visit to the cardiologist was, as expected, a waste of time. She practically told me that if my thyroid levels are ok, then I probably have anxiety. She even asked me "how are you feeling, because you look tense and anxious." At the time, I felt awful. My hands were tremoring and the brain was completely foggy. She completely dismissed it.

And can I tell you how much you guys rock! You have been a tremendous support system. It helps to talk with people who have experienced similar situations. Andros, I read your post on your experience with Hashitoxicosis. I felt like I was reading my thyroid biography.


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## bigfoot (May 13, 2011)

Glad to hear the endocrinologist gave you something to work with! Also hoping that works for you and relieves some of the signs & symptoms.

Some docs are ridiculous. Never mind how the patient looks or feels. All bow to the almighty lab work. Sheesh.


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## Andros (Aug 26, 2009)

Breeze123 said:


> I just looked over the most recent summary I received from the endo who gave me a second opinion. It appears that I had 2 TSI tests done in 2007. The first TSI was in January 2007, and it was 108% [<=125% is normal]. Another TSI was performed in April, and it was 100% [same normal range]. During tomorrow's appointment, I am going to ask the cardio if she can test my TSI.
> 
> As for the Free T3 and T4 tests, I had those done with my TSH. T3= 92 [72-180 normal] and T4= 1.01 [.82-1.77 normal]. The second-opinion endo also performed a bunch of adrenal gland tests, but they are all normal as well.
> 
> The funny thing is, I've felt more "normal" the past 2 days then I have in a while. I forgot what it feels like to not worry about what my body is going to do and when!


You should not have "any" TSI.

TSI
Normally, there is no TSI in the blood. If TSI is found in the blood, this indicates that the thyroid stimulating immunoglobulin is the cause of the of a person's hyperthyroidism.

http://www.medicineonline.com/topics/t/2/Thyroid-Stimulating-Immunoglobulin/TSI.html

The range is only used to form a "baseline" and to detect movement up or down. There is no normal TSI.


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## Andros (Aug 26, 2009)

Breeze123 said:


> Since my pcp is across the street from my office, I called her to ask if she could do the TSI test. She REFUSED! She told me that because I've already been diagnosed with a thyroid condition, it is not necessary. So, a few days later, I called my endo, because my symptoms were again at full throttle (palpitations, extreme insenstivity to heat, the whole nine). He told me that I'm having hyper symptoms, but there is no way that I am hyper, because my labs are hypo and some endos would even treat me for hypo. Because of the symptoms I am currently experiencing, he, however, told me that he would not treat me for hypo. He also told me that because of my labs, he thinks that the TSI and RAIU are not necessary. But I am going to see him next week, so that he can perform a tumor-related blood test that (I do not recall the name). Additionally, he prescribed 12.5 mg of Tetralol (a beta-blocker) to see if it helps my symptoms (I could have hugged him through the phone). We're going to try that for 30 days. Fingers crossed that this helps.
> 
> Oh and my visit to the cardiologist was, as expected, a waste of time. She practically told me that if my thyroid levels are ok, then I probably have anxiety. She even asked me "how are you feeling, because you look tense and anxious." At the time, I felt awful. My hands were tremoring and the brain was completely foggy. She completely dismissed it.
> 
> And can I tell you how much you guys rock! You have been a tremendous support system. It helps to talk with people who have experienced similar situations. Andros, I read your post on your experience with Hashitoxicosis. I felt like I was reading my thyroid biography.


I think that post on Hashitoxicosis that you read was written by our wonderful admin. Nasdaqphil. He also owns this site. I too thought that was very well written and descriptive.

Now back to you.

I hope you have the strength to fight your way through this. Your doctor is scary. Antibodies skew the regular thyroid panel by blocking the receptor sites.

What I fail to understand and you are not the only person this happens to is if you ask for a specific test, how can you be turned down for that test? Who is the client, who is the payee? What in the world is going on here?

Well,honey bunny! I am reasonably certain you are hyperthyroid and if indeed that is the case, you need medical intervention ASAP and also RAIU to check for cancer and rate of uptake.

Hope you can find a doctor to co-operate before it is too late. I am worried and will say a prayer for you!

By the way; your doctor did contradict himself. That's the way I see the dialog anyway.


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## Breeze123 (Jun 1, 2011)

Thanks for your thoughts and prayers. Let's hope that my either my docs will either give in to my requests, or that I am simply having hyper symptoms before my thyroid completely crashes out. I will keep you posted on this week's test and whether the beta blocker is helpful.


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## Andros (Aug 26, 2009)

Breeze123 said:


> Thanks for your thoughts and prayers. Let's hope that my either my docs will either give in to my requests, or that I am simply having hyper symptoms before my thyroid completely crashes out. I will keep you posted on this week's test and whether the beta blocker is helpful.


And what do your physicians purport to do when your thyroid crashes out, if indeed it does? Any one comment thus far?


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## Breeze123 (Jun 1, 2011)

Yes, my endo thinks it is on its way to crashing out now. Then I will probably start on synthroid or another hormone producing med. But they are apprehensive to do so right now until my hyper symptoms disappear. Any thoughts or suggestions?


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## Andros (Aug 26, 2009)

Breeze123 said:


> Yes, my endo thinks it is on its way to crashing out now. Then I will probably start on synthroid or another hormone producing med. But they are apprehensive to do so right now until my hyper symptoms disappear. Any thoughts or suggestions?


I sure hope you don't crash and burn before your thyroid does. My humble opinion is that you need those tests and RAIU that have been suggested.

And you should not be left to deal w/hyper symptoms w/o medical intervention. Another very humble opinion.

I am worried for you.


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## Breeze123 (Jun 1, 2011)

Hope everyone is having a wonderful summer. Just wanted to update you all on my status. I took the beta blocker for about 3-4 weeks, but had to stop taking it, because it made my blood pressure too low. The cardiologist told me that my heart is fine (surprise, surprise, I could have told her that), but noted that my heart rate is often fast.

Enter today. I've been having bad indigestion and went to visit my PCP. She went through all of the basics, i.e. blood pressure and took my heart rate. After she took my heart rate she asked if I've been feeling ok. I told her how I've been feeling and that my endo didn't think that I needed an RAIU or TSI. She disagreed and told me that with a history of both Graves and thyroiditis, she thinks I should get the RAIU!! I could've have jumped up and kissed her. She told me that sometimes our blood work doesn't tell a complete story and that we need to listen to my symptoms. She also apologized about the TSI incident. Must have been a miscommunication with her staff. Nonetheless, after my RAIU, she wants me to come back so that she can take my blood and run the appropriate tests, because she wants us to start from scratch.

Naturally, you guys were amongst the first people who crossed my mind, because you have been suggesting these tests since my first post. THANK YOU! THANK YOU! THANK YOU!


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## bigfoot (May 13, 2011)

That's awesome news! Thanks for the update -- now more pieces of the puzzle begin to fall into place...

:anim_32:


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## Andros (Aug 26, 2009)

Breeze123 said:


> Hope everyone is having a wonderful summer. Just wanted to update you all on my status. I took the beta blocker for about 3-4 weeks, but had to stop taking it, because it made my blood pressure too low. The cardiologist told me that my heart is fine (surprise, surprise, I could have told her that), but noted that my heart rate is often fast.
> 
> Enter today. I've been having bad indigestion and went to visit my PCP. She went through all of the basics, i.e. blood pressure and took my heart rate. After she took my heart rate she asked if I've been feeling ok. I told her how I've been feeling and that my endo didn't think that I needed an RAIU or TSI. She disagreed and told me that with a history of both Graves and thyroiditis, she thinks I should get the RAIU!! I could've have jumped up and kissed her. She told me that sometimes our blood work doesn't tell a complete story and that we need to listen to my symptoms. She also apologized about the TSI incident. Must have been a miscommunication with her staff. Nonetheless, after my RAIU, she wants me to come back so that she can take my blood and run the appropriate tests, because she wants us to start from scratch.
> 
> Naturally, you guys were amongst the first people who crossed my mind, because you have been suggesting these tests since my first post. THANK YOU! THANK YOU! THANK YOU!


When are you having the RAIU? I am very very glad to hear this and also about the TSI (thyroid stimulating immunoglobulin.)

Much relieved, I must say. Please let us know.


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## Breeze123 (Jun 1, 2011)

I'm getting the RAIU today, and they are taking follow-up scans in the morning. So hopefully, I will have my results shortly. I will keep you posted.


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## Andros (Aug 26, 2009)

Breeze123 said:


> I'm getting the RAIU today, and they are taking follow-up scans in the morning. So hopefully, I will have my results shortly. I will keep you posted.


Oh, goody and wishing you all the best today. I am so glad you could do this.

Sending caring hugs,


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