# Suspected subacute thyroiditis...need a second opinion



## styler

My endo told me yesterday that he's almost certain I have subacute thyroiditis, and it's progressing as expected - hyperthyroid to hypothyroid to normal. I know he's a good doctor, but I don't want to believe it, because that means this is only temporary, but I've been going through lots of typical symptoms of hyper/hypothyroidism for at least for 5 years. I really hoped this would be the end of my journey to finding the diagnosis of what completely ruined my life physically, mentally, and socially. In the end my endo's diagnosis is all that matters, but I want to know if there's a possibility that I have a different thyroid disorder. Here's my list of blood work so far.

04/07
TSH: 0.038(ref. 0.34-5.6)
Free T4: 3.65(ref. 0.46-1.42)

04/15
TSH: 0.032
Free T4: 3.90

07/01
TSH: 0.01
Free T4: 1.2

08/02
TSH: 12.58
Free T4: 1.0

10/04
TSH: 10.41
Free T4: 1.4

Hashimoto's test was normal, so that's out of the question.


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## Andros

akstylish said:


> My endo told me yesterday that he's almost certain I have subacute thyroiditis, and it's progressing as expected - hyperthyroid to hypothyroid to normal. I know he's a good doctor, but I don't want to believe it, because that means this is only temporary, but I've been going through lots of typical symptoms of hyper/hypothyroidism for at least for 5 years. I really hoped this would be the end of my journey to finding the diagnosis of what completely ruined my life physically, mentally, and socially. In the end my endo's diagnosis is all that matters, but I want to know if there's a possibility that I have a different thyroid disorder. Here's my list of blood work so far.
> 
> 04/07
> TSH: 0.038(ref. 0.34-5.6)
> Free T4: 3.65(ref. 0.46-1.42)
> 
> 04/15
> TSH: 0.032
> Free T4: 3.90
> 
> 07/01
> TSH: 0.01
> Free T4: 1.2
> 
> 08/02
> TSH: 12.58
> Free T4: 1.0
> 
> 10/04
> TSH: 10.41
> Free T4: 1.4
> 
> Hashimoto's test was normal, so that's out of the question.


The only test I know for Hashi's is FNA (fine needle aspiration) whereupon the pathologist looks for certain Hurthle cells indigenous to Hashimoto's.

Have you had any of these tests?

TSI (thyroid stimulating immunoglobulin),TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.

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

Also, how about at the very least a sonogram of the thyroid?

Welcome to the board.


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## styler

Andros said:


> The only test I know for Hashi's is FNA (fine needle aspiration) whereupon the pathologist looks for certain Hurthle cells indigenous to Hashimoto's.


My family doctor checked thyroid antibody, thyroid peroxidase antibody, and thyroglobulin antibody levels, which were all normal. He said I don't need to do further tests for Hashimoto's.



> Have you had any of these tests?
> 
> TSI (thyroid stimulating immunoglobulin),TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.


I did thyroglobulin ab, tsh, free t3 & t4...the last 3 should be obvious if you read the first post. Do I really need to check all those?



> Also, how about at the very least a sonogram of the thyroid?


I did RAIU scan, which was a complete waste of money because I eat lots of seafood, and my stupid doctor didn't tell me about high iodine diet messing up the test result. It came back hypo.

I don't really want to do ultrasound unless there's a good chance of having nodules considering my blood work. I'm self-paid and already wasted $1500 on RAIU scan.



> Welcome to the board.


Thank you. I usually skip introductions because I join tons of forums.


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## Christinals

Welcome to the board.

I have heard the only way to diagnose "for certain" that it is Hashi's was through FNA. That being said, If I were you I would ask them to check tpo-ab at the very least (I didn't see your anitibody results in this post sorry). I know you said that you were negative for TGAB, but I would still ask them to check for TPO-ab because that could be an indicator of Hashi's too. My TSH has gone back and forth, but my antibodies have stayed the same and in some cases increased. My doctor thought I perhaps have subacute thyroiditis. I am having the FNA to rule out anything else including Hashi's.

Best of luck to you!


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## lainey

akstylish said:


> My family doctor checked thyroid antibody, thyroid peroxidase antibody, and thyroglobulin antibody levels, which were all normal. He said I don't need to do further tests for Hashimoto's.
> 
> I did thyroglobulin ab, tsh, free t3 & t4...the last 3 should be obvious if you read the first post. Do I really need to check all those?
> 
> I did RAIU scan, which was a complete waste of money because I eat lots of seafood, and my stupid doctor didn't tell me about high iodine diet messing up the test result. It came back hypo.
> 
> I don't really want to do ultrasound unless there's a good chance of having nodules considering my blood work. I'm self-paid and already wasted $1500 on RAIU scan.
> 
> Thank you. I usually skip introductions because I join tons of forums.


Actually, you didn't post any results for the Free T3, and that could be telling if the TSI were also run--in the sense that if you don't have Hashimoto's, you could be cycling in and out of Graves', and those results would tell that.

An ultrasound can show structural changes consistent with autoimmune thyroid disease, if it is present. You said your doctor said your results were normal, but as far as antibodies are concerned, you either have them, or you don't--some labs give ranges, some say present or absent, so it depends on what the report actually says in this case to determine if your problem could be autoimmune. You should have NO antibodies at all, not SOME amount that is "normal".

The RAIU would show any nodules, if you had any, and if they were functional or not. So in that regard, it wasn't a waste of money, and you probably don't need the sonogram to duplicate that.

That said, thyroid problems can be aggravated by too much iodine. Have you tried reducing that to see if it has any effect?

Consider: http://www.medicinenet.com/script/main/art.asp?articlekey=18395

The "typical" symptoms of hypothyroidism that you say you have experienced can be attributed to many other things such as anemia/low iron, low Vitamin D, low B Vitamins, PCOS, and adrenal insufficiency. Has the endo done any testing for these?

You were pretty hyper from April to July. Why didn't the endo give you any meds for that then?


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## styler

Christinals said:


> I have heard the only way to diagnose "for certain" that it is Hashi's was through FNA. That being said, If I were you I would ask them to check tpo-ab at the very least (I didn't see your anitibody results in this post sorry). I know you said that you were negative for TGAB, but I would still ask them to check for TPO-ab because that could be an indicator of Hashi's too.


I will have my doctor check all the things you listed except FNA, unless the cost is reasonable.



lainey said:


> Actually, you didn't post any results for the Free T3, and that could be telling if the TSI were also run--in the sense that if you don't have Hashimoto's, you could be cycling in and out of Graves', and those results would tell that.


I thought free t3 and t4 were essentially the same seeing that both my family doctor and endo only tested for free t4. I'll ask them about it.



> An ultrasound can show structural changes consistent with autoimmune thyroid disease, if it is present. You said your doctor said your results were normal, but as far as antibodies are concerned, you either have them, or you don't--some labs give ranges, some say present or absent, so it depends on what the report actually says in this case to determine if your problem could be autoimmune. You should have NO antibodies at all, not SOME amount that is "normal".


I do have some antibodies, but they are within the normal ranges the lab gave me.

Thyroid Perox Ab: 1.1(ref. 0.0-9.0)
Thyroglobulin Ab: <0.9(ref. 0.0-4.0)

But why would they say it's normal if I shouldn't have any antibodies like you said?



> The RAIU would show any nodules, if you had any, and if they were functional or not. So in that regard, it wasn't a waste of money, and you probably don't need the sonogram to duplicate that.


That's good. I don't feel as bad about it now.



> That said, thyroid problems can be aggravated by too much iodine. Have you tried reducing that to see if it has any effect?


My diet is definitely high in iodine, but I'm not sure if it's too much. I'll need to check iodine level too. But occasionally I hadn't eaten seafood or anything high in iodine that I know of for weeks, and I felt pretty much the same.



> The "typical" symptoms of hypothyroidism that you say you have experienced can be attributed to many other things such as anemia/low iron, low Vitamin D, low B Vitamins, PCOS, and adrenal insufficiency. Has the endo done any testing for these?


Vitamin B12 and RBC were normal. I'll check the rest.



> You were pretty hyper from April to July. Why didn't the endo give you any meds for that then?


I have no idea, but he always said I probably have subacute thyroiditis. He wanted to wait and see how it would go.


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## lavender

[quote name='akstylish'] I thought free t3 and t4 were essentially the same seeing that both my family doctor and endo only tested for free t4. I'll ask them about it.

Free T3 and Free T4 are different thyroid hormones. Many doctors will only check Free T4, but this does not give a full picture of what is going on. For example, when I was hyperthyroid, my Free T4 was only slightly out of range. I was not treated and ended up needing hospitalization. When my Free T3 was checked, it was almost 5x the normal level, leaving me one very sick person.

I do have some antibodies, but they are within the normal ranges the lab gave me.

Thyroid Perox Ab: 1.1(ref. 0.0-9.0)
Thyroglobulin Ab: <0.9(ref. 0.0-4.0)

But why would they say it's normal if I shouldn't have any antibodies like you said?

Your antibodies look very low. My understanding is that when a lob indicates something like, <0.9, it means that none was detected, but that the lab was not sensitive enough to say with any certainty that you have none. So, this is good.
I would suggest asking for TSI to be run. TSI would indicate if Graves Disease is the reason for your thyroid issues. Graves can go in and out of remission, explaining the spike and drop in your thyroid level. ANA would tell you if there is some auto-immune process going on, but could be positive for reasons other than thyroid.

My diet is definitely high in iodine, but I'm not sure if it's too much. I'll need to check iodine level too. But occasionally I hadn't eaten seafood or anything high in iodine that I know of for weeks, and I felt pretty much the same.

Thyroid hormones are slow to change. It may take 4-6 weeks for levels to change. Fluctuations in thyroid levels will cause you to feel ill as well. It may take a long time for you to see a change that is a result of your diet.

When I looked at your labs, I was concerned that although your Free T4 is now within the normal range, your TSH is still very high. This suggests to me that something is still off. Your report that you have had thyroid disease related symptoms for years along with your bloodwork makes me suspicious that you are dealing with something more long term than subacute thyroiditis. If your endo will not consider anything else right now, I would at least insist on having Free T3, Free T4 and TSH monitored on a regular basis to see if there is a long term pattern of highs and lows going on.


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## lainey

Yes, the antibodies are low. About 10% of the population has them at low levels and is asymptomatic, with that number increasing in women as they age.

T4 is produced by the thyroid and then converted at the cellular level to T3, the active hormone. TSH levels drive the process--when TSH is high, usually the others are low and the body is calling for more thyroid hormone production. A low TSH is the body trying to tell the thyroid to shut down. In that case, it is the antibodies that continue to stimulate the thyroid to produce more hormone. It's a little bit of a simplistic explanation, yes but essential to the following:

However, from the above post:

>>When I looked at your labs, I was concerned that although your Free T4 is now within the normal range, your TSH is still very high. This suggests to me that something is still off.<<

Right, your Free T4 is going back up, and the response would be for the TSH to fall again--there is usually a lag (that works the other way, it takes time for the TSH to come up when the T4 is high).

Thyroid disease waxes and wanes. This pattern is not uncommon in the early stages.

You should check for TSI, ie test for Graves' Disease. Just to be sure that is not the culprit.

There are certain tests that a common on forms for thyroid panels, and others that the doctor often has to request--free T3 is one of them, as is TSI, and it is because they are 1.) less commonly needed 2.) more expensive. If memory serves, you can get a full metabolic panel for about 25% of what a thyroid panel costs, just for reference.


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## styler

Well, I saw my family doc today, and he advised against doing any test other than TSH and free T4 because they are a waste of money. His comments were roughly as follows:

TSI - extremely unlikely that I have Grave's because my blood work should indicate persistent and worsening hyperthyroidism.

ANA - irrelevant at this point because the test is very non-specific and I don't have any suspected autoimmune disease. Only good for confirming the diagnosis of autoimmune disease.

TBII - same as TSI.

TPO/thyroglobulin - already tested and came back normal.

Free T3 - basically tested only as a thyroid storm warning and thus meaningless because I'm not chronically hyperthyroid and haven't experienced a thyroid storm.

But he gave me a lab order anyway. The results should be back in a week, but his opinion really let me down.  It's not that I want to have a permanent thyroid disorder, but having no diagnosis is as frustrating as the physical and mental problems I have.


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## lavender

Glad to hear you are at least getting the labs run. Post the results (with ranges) when you get them and we can help you sort them out.


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## Shannabeth

I can't give much advice, but I do understand the frustration with no diagnosis hugs1 . As far as being self-pay, I have said this before on another post, I work for a Community Health Center. We offer primary care to the un and under insured on a sliding fee scaled based on income ($20-$45). This is like a copay for your visit with the doctor, but also covers any labs the doctor may order. If you search online for the National Association of Community Health Centers or NACHC you can find a center in your area. I try to get the word out as much as I can, because we are here to help. I currently go to the center I work for and the doctors are very compassionate and used to treating patients that may not have the means to pay expensive medical bills without insurance. I hope this helps some, and just know that you are not alone in the frustrating feeling of experiencing all of these things and being told nothing is wrong. I hope you get to feeling better soon!!


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## Andros

akstylish said:


> Well, I saw my family doc today, and he advised against doing any test other than TSH and free T4 because they are a waste of money. His comments were roughly as follows:
> 
> TSI - extremely unlikely that I have Grave's because my blood work should indicate persistent and worsening hyperthyroidism.
> 
> ANA - irrelevant at this point because the test is very non-specific and I don't have any suspected autoimmune disease. Only good for confirming the diagnosis of autoimmune disease.
> 
> TBII - same as TSI.
> 
> TPO/thyroglobulin - already tested and came back normal.
> 
> Free T3 - basically tested only as a thyroid storm warning and thus meaningless because I'm not chronically hyperthyroid and haven't experienced a thyroid storm.
> 
> But he gave me a lab order anyway. The results should be back in a week, but his opinion really let me down.  It's not that I want to have a permanent thyroid disorder, but having no diagnosis is as frustrating as the physical and mental problems I have.


Why do you stay with this doctor? He is one scary dude! Please consider finding a doctor who is knowledgable and cares about getting you better.

I care.....................a lot and so do others on this board.


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## styler

The results are in...I feel devastated.



> 04/07
> TSH: 0.038(ref. 0.34-5.6)
> Free T4: 3.65(ref. 0.46-1.42)
> 
> 04/15
> TSH: 0.032
> Free T4: 3.90
> 
> 07/01
> TSH: 0.01
> Free T4: 1.2
> 
> 08/02
> TSH: 12.58
> Free T4: 1.0
> 
> 10/04
> TSH: 10.41
> Free T4: 1.4


11/23
TSH: 6.03
Free T4: 0.87
Free T3: 3.0(0.34-5.6)
ANA: negative
TSI: 88(0-129)
(TBII was too expensive to test)

Non-thyroid tests lainey recommended:

Sodium: 140(133-145)
Potassium: 3.6(3.3-5.1)
Vitamin B12: 428(180-940)
Vitamin D: 35(30-100)

My endo/family doc were right after all, it seems. All the antibody tests are negative, and TSH is indeed following the course of subacute thyroiditis.(hyper->hypo->euthyoid) Should I keep checking TSH/Free T4? I mean, is it still possible that I have a different, permanent thyroid disease? I don't want to live the rest of my life like this with no diagnosis.


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## Andros

akstylish said:


> The results are in...I feel devastated.
> 
> 11/23
> TSH: 6.03
> Free T4: 0.87
> Free T3: 3.0(0.34-5.6)
> ANA: negative
> TSI: 88(0-129)
> (TBII was too expensive to test)
> 
> Non-thyroid tests lainey recommended:
> 
> Sodium: 140(133-145)
> Potassium: 3.6(3.3-5.1)
> Vitamin B12: 428(180-940)
> Vitamin D: 35(30-100)
> 
> My endo/family doc were right after all, it seems. All the antibody tests are negative, and TSH is indeed following the course of subacute thyroiditis.(hyper->hypo->euthyoid) Should I keep checking TSH/Free T4? I mean, is it still possible that I have a different, permanent thyroid disease? I don't want to live the rest of my life like this with no diagnosis.


You are trying to be hyper.

TSI

Results and Values
What do the test results mean?
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

Also, do you see how low your FT4 is and how high the FT3 is? This is because FT4 is converting fast to FT3.

I would recommend RAIU (radioactive uptake scan) at this point.

TSI is a stimulating antibody. Your doctor apparently does not understand this. Not good. You "have" antibody!

Your TSH is high because there are also blocking and binding antibodies and autoantibodies. The body is trying to fight off the TSI.

Quite frankly, I would go doctor shopping.

The above is my humble but experienced opinion.


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## lainey

Your antibody tests are not "negative".

You should NOT have ANY TSI, so that is positive.

Many people in the early stages of autoimmune thyroid disease have numbers that "swing" wildly like yours.

The key at this point is to keep testing the FT4, FT3, TSH and TSI (and yes, those frees and the TSI are expensive) until you settle one way or the other.

Keep in mind, you have been at this for 6 months already, and "thyroiditis" as it's called, should settle out in 6 months to a year. You are getting close to a time frame where you can reasonably demand treatment, I would think.

I would seek a second opinion from another endo, with previous labs in hand. You may find one that is willing to treat you with "block and replace". This is where anti-thyroid drugs are given at the same time as thyroid replacement is given. The idea is to stabilize the patients' levels while the disease runs its course. After a period of time, the medication is withdrawn to see whether the patient is in remission, or if a hyper or hypothyroid condition persists.


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## styler

Andros said:


> Also, do you see how low your FT4 is and how high the FT3 is? This is because FT4 is converting fast to FT3.


What does it mean? How does it affect the thyroid?



> I would recommend RAIU (radioactive uptake scan) at this point.


I already had the test. The results were hypo, which is probably false because I'd eaten seaweed regularly without knowing its effect on the test. But no nodules were found.



> TSI is a stimulating antibody. Your doctor apparently does not understand this. Not good. You "have" antibody!


I think he was reading out whatever was written on the lab. It says:

Negative - 109% basal activity or less
Indeterminate - 110-129% basal activity
Positive - 130% basal activity



> Your TSH is high because there are also blocking and binding antibodies and autoantibodies. The body is trying to fight off the TSI.


But why is it fluctuating instead of staying high?



lainey said:


> Your antibody tests are not "negative".
> 
> You should NOT have ANY TSI, so that is positive.
> 
> Many people in the early stages of autoimmune thyroid disease have numbers that "swing" wildly like yours.


If the mere presence of TSI confirms thyroid disease, then why does the lab give a range for negative and positive?



> The key at this point is to keep testing the FT4, FT3, TSH and TSI (and yes, those frees and the TSI are expensive) until you settle one way or the other.


What do you mean by one way or the other?(not the expression)



> Keep in mind, you have been at this for 6 months already, and "thyroiditis" as it's called, should settle out in 6 months to a year. You are getting close to a time frame where you can reasonably demand treatment, I would think.
> 
> I would seek a second opinion from another endo, with previous labs in hand. You may find one that is willing to treat you with "block and replace". This is where anti-thyroid drugs are given at the same time as thyroid replacement is given. The idea is to stabilize the patients' levels while the disease runs its course. After a period of time, the medication is withdrawn to see whether the patient is in remission, or if a hyper or hypothyroid condition persists.


Both my endo and family doc say no treatment is needed even if I have Grave's as long as the thyroid levels are in normal range. I will however ask about block and replace treatment to my endo.

So my questions are, what does it mean to have TSI but not high enough to confirm Grave's?

Why do they give a range for negative and positive if having TSI regardless of its value means something is wrong with my thyroid?

Lastly, can subacute thyroiditis cause TSI production?

Thank you so much for detailed responses as always.


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## lainey

This is Thyroid Manager's chapter on Grave's--the first part explains the antibodies.

http://www.thyroidmanager.org/Chapter10/10-frame.htm

This is basically an endo textbook. It is pretty heavy duty reading I admit.

Only about 10% of the population has incidental thyroid antibodies, and usually at low levels and with normal lab values. Each lab does their titres differently--in the case of your lab, it gives ranges of activity--"basal" doesn't necessarily mean none, though, and stimulating antibodies are present regardless, indicating the potential or actual autoimmune activity.

This is why you need to keep measuring them along with everything else. If they are at this level now, and your TSH is 6, what were they back when your TSH was .01? He didn't measure them then to even check if you had Grave's, nor your T3, which would have been revealing--and considering your previous .03, he should have done both last summer.

Subacute thyroiditis can be because of TSI production, the action of blocking antibodies and general antibody activity on the thyroid.

>>Both my endo and family doc say no treatment is needed even if I have Grave's as long as the thyroid levels are in normal range.<<

True, but when in the last 6 months have your levels been in the normal range????

What exactly are they waiting for?

Okay, I'll answer that, it's for your levels to stay one way (hypo) or another (hyper). So, your question is, "how much longer are you going to make me wait before we do something?" And when the doctor indicates that he can't really medicate you one way or the other because of the way your labs are shifting, that's when you suggest block and replace rather than continue to let you suffer.

See a second endo, and get their take on it. Try to find one that specializes in thyroid.


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## styler

That cleared everything up. I finally get it. Thank you so much. I regret that I didn't know much about Grave's back when I was hyper. I would've definitely asked for TSI test.

So I guess I'll keep checking those 4 and maybe look for another endo. Thank you again.

edit: how does free T3 help with the diagnosis exactly?


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## lainey

T3 over the top = hyper

Sometimes that is over when Free T4 is not, because of the rapid conversion that Andros mentioned.


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## lavender

Before I was diagnosed with Graves, my Free T4 was normal while my TSH was very low. No one ever checked my Free T3 until I was hospitalized. Then, my Free T3 was extremely high. Free T4 was also high by then as well. I had tons of symptoms for months that were never correlated to my thyroid condition until I went to the hospital because my Free T4 was normal and the docs did not think this was important enough to treat. If they had actually checked my Free T3, they might have seen that I was hyper way before they had to hospitalize me.

IMHO, Find a doc who will do a full set of thyroid labs including TSH Free T4 and Free T3 along with antibodies and is willing to treat you. Ignoring the onset of graves can put you at needless risk. Perhaps this endo will not treat you, but you deserve someone who will.

harumph


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## styler

Thank you for the empathy.  I'm going to check TSH, FT3, FT4, and TSI every month for the next 6-12 months. It's gonna cost a lot of money without insurance but thankfully my wallet is thick enough to afford it. (for now) It's the wait for the next test and the thought that my thyroid could be normal that are killing me.



> If it hasn't gone up THAT much, does that mean it likely never will? Or, has it just not done that yet?


I guess all you can do is to wait and see like me.


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## styler

Fatigue and anxiety are the worst problems. I also have severe cold intolerance, brain fog, depression, forgetfulness, weight loss/gain, tremors, weakness, insomnia, tachycardia, sleep apnea, shortness of breath, and many more.

They all could be secondary disorders or attributed to lack of exercise, irregular sleep and eating pattern, computer addiction, and medications. I have tried so many times to improve my lifestyle, but I feel so terrible and demotivated all the time that I go back to my old routine sooner or later. All these symptoms are entangled in a way that I can't find where to take the first step.

My graduation is next summer, and if I don't find a way out of this by then I will never get a job.


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## styler

****...I asked to ADD Free T3 test, and the nurse replaced Free T4 test with it. How stupid can a nurse be?
Anyway, this is the blood work so far with Jan. 2011 blood test. The doc says my thyroid levels are still getting better. I doubt it because TSH level rose. Tell me what you think.

TSH(ref. 0.34-5.6)
0.038(04/07/10)
0.032(04/15/10)
0.01(07/01/10)
12.58(08/02/10)
10.41(10/04/10)
6.03(11/23/10)
8.18(01/18/11)

Free T4(ref. 0.46-1.42)
3.65(04/07/10)
3.90(04/15/10)
1.2(07/01/10)
1.0(08/02/10)
1.4(10/04/10)
0.87(11/23)
?(01/18/11)

Free T3(ref. 0.34-5.6)
3.0(11/23/10)
3.7(01/18/11)

TSI(ref. 0-129)
88(11/23/10)
24(01/18/11)


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## lavender

Do you have the ranges for these labs? It's hard for me to know what's going on without the ranges, because T3 and T4 are different with every lab.

Your TSH is pretty high. How do you feel? Are you completely wiped out? I would be at an 8. It is good that your antibodies have gone down, but making you stay hyper is no fun.

Am I correct in remembering that your doc thinks you have silent thyroiditis and that you are on no meds whatsoever, just watching and waiting to see what happens? Have you ever had TPO or Thyroglobulin antibodies tested?


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## Andros

styler said:


> ****...I asked to ADD Free T3 test, and the nurse replaced Free T4 test with it. How stupid can a nurse be?
> Anyway, this is the blood work so far with Jan. 2011 blood test. The doc says my thyroid levels are still getting better. I doubt it because TSH level rose. Tell me what you think.
> 
> TSH
> 0.038(04/07/10)
> 0.032(04/15/10)
> 0.01(07/01/10)
> 12.58(08/02/10)
> 10.41(10/04/10)
> 6.03(11/23/10)
> 8.18(01/18/11)
> 
> Free T4
> 3.65(04/07/10)
> 3.90(04/15/10)
> 1.2(07/01/10)
> 1.0(08/02/10)
> 1.4(10/04/10)
> 0.87(11/23)
> ?(01/18/11)
> 
> Free T3
> 3.0(11/23/10)
> 3.7(01/18/11)
> 
> TSI
> 88(11/23/10)
> 24(01/18/11)


Hi there! Good to see you again. Could you just post your most recent lab results with the ranges right beside them?

I think the most recent would be the relevant ones to look at now. What med are you on for thyroid?


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## styler

lavender said:


> Do you have the ranges for these labs? It's hard for me to know what's going on without the ranges, because T3 and T4 are different with every lab.


Oops, my bad. I just added them in the post.



> Your TSH is pretty high. How do you feel? Are you completely wiped out? I would be at an 8. It is good that your antibodies have gone down, but making you stay hyper is no fun.


It's really weird. For the past 12 months my thyroid levels fluctuated quite a bit, but I didn't feel any changes to my body and mind. I always felt very weak, depressed, anxious, etc., whether I was hyper or hypo.



> Am I correct in remembering that your doc thinks you have silent thyroiditis and that you are on no meds whatsoever, just watching and waiting to see what happens? Have you ever had TPO or Thyroglobulin antibodies tested?


You are correct. Those tests were negative.



Andros said:


> Hi there! Good to see you again. Could you just post your most recent lab results with the ranges right beside them?


TSH(ref. 0.34-5.6): 8.18
Free T4(ref. 0.46-1.42): ?(nurse forgot to add to the blood work)
Free T3(ref. 0.34-5.6): 3.7
TSI(ref. 0-129): 24



> I think the most recent would be the relevant ones to look at now. What med are you on for thyroid?


None. My endo still thinks I don't need treatment.


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## Andros

styler said:


> Oops, my bad. I just added them in the post.
> 
> It's really weird. For the past 12 months my thyroid levels fluctuated quite a bit, but I didn't feel any changes to my body and mind. I always felt very weak, depressed, anxious, etc., whether I was hyper or hypo.
> 
> You are correct. Those tests were negative.
> 
> TSH(ref. 0.34-5.6): 8.18
> Free T4(ref. 0.46-1.42): ?(nurse forgot to add to the blood work)
> Free T3(ref. 0.34-5.6): 3.7
> TSI(ref. 0-129): 24
> 
> None. My endo still thinks I don't need treatment.


Thank you so much; it is so helpful the way you listed your labs. Oh, my.............you are surely flip flopping here. That TSH is way high!

I think your doctor should do a RAIU (radioactive uptake scan.) When I see labs like yours combined w/ the presence of TSI, I am of a mind that other things need to be ruled in or out such as cancer.

What I cannot understand is what your doctor thinks. You should not be left to fend for yourself.


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## styler

Andros said:


> I think your doctor should do a RAIU (radioactive uptake scan.) When I see labs like yours combined w/ the presence of TSI, I am of a mind that other things need to be ruled in or our such as cancer.


He did it last summer. No nodules found.



> What I cannot understand is what your doctor thinks. You should not be left to fend for yourself.


Yeah I don't know what to do. Other endos are too far away from my house. And I extremely hate driving.


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## Andros

styler said:


> He did it last summer. No nodules found.
> 
> Yeah I don't know what to do. Other endos are too far away from my house. And I extremely hate driving.


You might consider seeing a DO, Internal Medicine, GP. I can appreciate how you feel about driving long distances when you don't feel well.

That is a huge problem.


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## styler

I did the tests again because I was ****ed off I didn't get Free T4 value.

02/07/11
TSH: 3.455(ref. 0.340-5.600)
Free T4: 1.25(ref. 0.46-1.42)

This is the first time since my first thyroid bloodwork that both values are in normal range. I am thoroughly disappointed and depressed. Was it viral after all? I don't want to believe it. I'll check again in March and hope my GP/endo are wrong! ;(


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## Andros

styler said:


> I did the tests again because I was ****ed off I didn't get Free T4 value.
> 
> 02/07/11
> TSH: 3.455(ref. 0.340-5.600)
> Free T4: 1.25(ref. 0.46-1.42)
> 
> This is the first time since my first thyroid bloodwork that both values are in normal range. I am thoroughly disappointed and depressed. Was it viral after all? I don't want to believe it. I'll check again in March and hope my GP/endo are wrong! ;(


You have TSI; this is indigenous to the thyroid. That means you have autoimmune thyroid disease. TSI is not viral.

What about this doesn't your doctor get?

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

You are flip flopping back and forth. And will continue to do so.

I feel bad for you because I know something is wrong and that you don't feel well. And, as I have pointed out, TSI is thyroid stimulating immunoglobulin so yes, something is afoot w/ the thyroid.


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## styler

But someone(could be you, I don't remember) said normal people can also have TSI without a thyroid disorder. Plus my TSI hasn't gone over 130% BA(not at the time blood was drawn anyway).

But please destroy my argument so I can be sure about my having a thyoid disorder!


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## Andros

styler said:


> But someone(could be you, I don't remember) said normal people can also have TSI without a thyroid disorder. Plus my TSI hasn't gone over 130% BA(not at the time blood was drawn anyway).
> 
> But please destroy my argument so I can be sure about my having a thyoid disorder!


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 some research on TSI yourself. Plenty of credible info out there.


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## styler

Well, I checked a few articles as you said. It made me more confused.



> Normal people do not produce TSI and have levels less than 2 percent.


(http://www.suite101.com/lesson.cfm/19330/2902/2)

While that quote is what you said,



> Normal values are less than 130% of basal activity.


(http://www.nlm.nih.gov/medlineplus/ency/article/003685.htm)

This agrees with my endo's comment that TSI below 130% basal activity doesn't indicate anything.

Basically some people are saying a healthy person shouldn't have TSI at all(or very little), while others say TSI's basal activity below 125-130% is normal. Did I misinterpret something?


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## Andros

styler said:


> Well, I checked a few articles as you said. It made me more confused.
> 
> (http://www.suite101.com/lesson.cfm/19330/2902/2)
> 
> While that quote is what you said,
> 
> (http://www.nlm.nih.gov/medlineplus/ency/article/003685.htm)
> 
> This agrees with my endo's comment that TSI below 130% basal activity doesn't indicate anything.
> 
> Basically some people are saying a healthy person shouldn't have TSI at all(or very little), while others say TSI's basal activity below 125-130% is normal. Did I misinterpret something?


The lab has to have a range to establish a "baseline" for the patient to detect movement either up or down. This is true of many antibodies, autoantibodies and immunoglobulins.


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## styler

But what does it mean if someone has tsi level higher than normal(~2%) but too low to confirm Grave's(125~130%)? (88% in the first test, 24% in the second) I can only think of two possible explanations:

1. I have Grave's, but it's in remission.

2. I don't have Grave's.(i.e., one CAN, but rarely, have tsi level above normal range without Grave's.)

I'm sorry to keep bothering you with questions I should ask a doctor. It just frustrates the heck out of me that the diagnosis is still inconclusive after one year of monitoring.


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## lavender

My suspicion is that you will eventually progress into full blown Graves disease without any treatment. I would try to find a doc who is willing to treat you now.

My docs waited until I was hospitalized with chest pain and my thyroid levels were almost lethal. I was a very sick person, and my doctor's apology will never bring me back the months I have spent recovering.

5 years before, I had "slightly hyperthyroid" test results and flu like symptoms for about two months. The doctor completely dismissed the results because I did not "look" hyperthyroid because I am overweight! I went home feeling like a huge hypochondriac with a diagnosis of the flu and then proceeded to ignore my mounting symptoms for years.

From 27-32, my body deteriorated and I became increasingly sedentary and was worried that I would eventually be totally disabled. The docs refused to treat me or do adequate testing, telling me I just needed to exercise. I felt lazy, but I absolutely could not tolerate exercise.

It's nice to be off the merry-go round of doctor denial and to actually have a solution for all those symptoms the docs ignored all those years. I have my life back.

You don't have to let things get that bad if you treat this now instead of waiting until your labs get "bad enough."


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## Andros

styler said:


> But what does it mean if someone has tsi level higher than normal(~2%) but too low to confirm Grave's(125~130%)? (88% in the first test, 24% in the second) I can only think of two possible explanations:
> 
> 1. I have Grave's, but it's in remission.
> 
> 2. I don't have Grave's.(i.e., one CAN, but rarely, have tsi level above normal range without Grave's.)
> 
> I'm sorry to keep bothering you with questions I should ask a doctor. It just frustrates the heck out of me that the diagnosis is still inconclusive after one year of monitoring.


TSI does not confirm Graves'. Only the criteria established by Dr. Robert Graves stipulates Graves' which you may Google. That would be the clinical criteria of Exophthalmos, goiter, thyrotoxicosis and pretibial myxedema.

TSI is responsible for hyperthyroid as per the copy and pastes I have provided you re TSI w/ the link included.

The higher the TSI, the more hyper you become.


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## styler

So is having TSI enough to ask for block and replace therapy? That's what I want to do after the next blood test. My GP and endo say my thyroid levels are normal, and indeed my problems can have nothing to do with thyroid, but it's about time I give thyroid treatment a go. I'm getting worse and worse like there's no bottom and I missed lots of classes recently. I might fail with two weeks of school left.

Also, I heard bad experiences with block and replace therapy. What are the most common side effects?


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## Andros

styler said:


> So is having TSI enough to ask for block and replace therapy? That's what I want to do after the next blood test. My GP and endo say my thyroid levels are normal, and indeed my problems can have nothing to do with thyroid, but it's about time I give thyroid treatment a go. I'm getting worse and worse like there's no bottom and I missed lots of classes recently. I might fail with two weeks of school left.
> 
> Also, I heard bad experiences with block and replace therapy. What are the most common side effects?


It is complicated. Only a doctor who has expertise in this area can do this. You will have to ask around.

I can't believe that you are still "untreated" after all this time.


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## styler

Another test results in.

TSH: 5.36(ref. 0.40-4.50)
FT4: 1.5(ref. 0.8-1.8)
FT3: 3.9(ref. 2.3-4.2)
TSI: 48(ref. <140)

TSH is out of range again, yet once again the endo's comment according to the receptionist is "your thyroid levels are still improving." I guess he's saying that the degree of fluctuation is decreasing. That doesn't make me feel any better though.

Also, I made charts for all the lab tests so far. Unfortunately the fluctuation is not very accurate because I took tests from 2 labs. Red dots indicate an abnormal value.


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## lainey

What's nice about the graph is that you can see how the FT4 really mirrors the TSH--when the TSH is low, the FT4 is very high and as your TSH has trended down, the FT4 has basically stabilized.

The key now actually is the FT3--it's going to be that in the the presence of the TSI that will confirm Graves when/if it happens--which has been trending upward steadily. That is what you need to make sure they keep measuring, along with the TSI. There is a bit of a lag as you can see in the feed back mechanism, so it will take a little bit for the TSH to drop correspondingly as the FT3 rises--but it should, and unhappily you are likely headed to where you were a year ago, but this time with a better testing program in place to bring the doc to action.

At least ask the doc about block and replace. It has been a year, and you would like to try something to help you stabilize your levels so that you can function and feel better. It is not typical, so you will know by his response what he knows about it to accomplish it. Unfortunately, your unlikely to find another type of doctor other than an endo that can orchestrate this more complicated medication regimen


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## Andros

styler said:


> So is having TSI enough to ask for block and replace therapy? That's what I want to do after the next blood test. My GP and endo say my thyroid levels are normal, and indeed my problems can have nothing to do with thyroid, but it's about time I give thyroid treatment a go. I'm getting worse and worse like there's no bottom and I missed lots of classes recently. I might fail with two weeks of school left.
> 
> Also, I heard bad experiences with block and replace therapy. What are the most common side effects?


As per your chart below and the fact that you have TSI (thyroid stimulating immunoglobulin), it is my opinion that you will keep rebounding and each time you will be more hyper.

Our friend Lainey did a most wonderful job of explaining in her comments to you.

If in the right hands, block and replace should not have any bad reprecussions. However, I view it as being only a panacea. I have never seen anyone w/hyperthyroid go into life-long remission. Maybe for a few months but that is about it.

And as w/any med, you have to worry about your life w/the antithyroid med. Taking thyroxine (replace) in no way negates the negative effects of the antithyroid med (block.)

That is my humble opinion.


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## styler

5 weeks later...everything is in the normal range for the first time.

TSH: 3.68(ref. 0.40-4.50)
FT4: 1.5(ref. 0.8-1.8)
FT3: 3.6(ref. 2.3-4.2)
TSI: 33(ref. <140)

I don't know how long I should continue testing. As much as I hate to admit, the values are fluctuating less and less as my endocrinologist predicted.

I'll be sure to ask about block and replace next time though.

p.s.: I'm planning to order an adrenal/sex hormone testing kit here: http://www.johnleemd.com/store/prod_stest.html
Are they reliable? Should I go see my doctor for this instead?


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## Andros

styler said:


> 5 weeks later...everything is in the normal range for the first time.
> 
> TSH: 3.68(ref. 0.40-4.50)
> FT4: 1.5(ref. 0.8-1.8)
> FT3: 3.6(ref. 2.3-4.2)
> TSI: 33(ref. <140)
> 
> I don't know how long I should continue testing. As much as I hate to admit, the values are fluctuating less and less as my endocrinologist predicted.
> 
> I'll be sure to ask about block and replace next time though.
> 
> p.s.: I'm planning to order an adrenal/sex hormone testing kit here: http://www.johnleemd.com/store/prod_stest.html
> Are they reliable? Should I go see my doctor for this instead?


Good to hear from you. Lab results are in normal range. How do you feel? Are you symptomatic?

Hopefully others will have input re the testing kit. I have never had the experience of doing so.


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## styler

Andros said:


> Are you symptomatic?


Yes. The fatigue, weakness, anxiety, and some others are still getting worse. It has to be in in large part due to changes in my lifestyle(not enough calories, irregular sleep, little exercise, and almost no social interaction), but these symptoms are what caused the changes in the first place! I've been trying to fix some of my habits making me feel more ill, but it just seems impossible without getting medical help first.

/rant


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## Andros

styler said:


> Yes. The fatigue, weakness, anxiety, and some others are still getting worse. It has to be in in large part due to changes in my lifestyle(not enough calories, irregular sleep, little exercise, and almost no social interaction), but these symptoms are what caused the changes in the first place! I've been trying to fix some of my habits making me feel more ill, but it just seems impossible without getting medical help first.
> 
> /rant


I do agree about the medical intervention. One has to have the energy and emotional motivation for the other fixes and if you don't feel well it lends an air of hopelessness.

There are many here who understand this; more than you will ever know.


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## Defeat The Curse

old thread i know, but i wonder how this OP IS doing now??

STYLER?

my diagnosis was subacute viral thyroiditis and it was kind of atypical as well, always frustrated me, and i still wonder if it was really auto immune


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