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I was dx with Hashimoto's and hashitoxicosis in June of 2010. The Hashi's dx was confirmed after my TT in the final path results. My TPO was high as was my TSI but my endo did not dx me with Graves' since my TSI was not over 125. I also had a high RAIU.

I see that some people were dx with Graves' and Hashi's and I'm curious as to how your doc came to that dx rather than hashitoxicosis. Did you have other Graves' symptoms? What were your thyroid labs? Mine consistently showed hypo.
 

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I am yet to hear the term Hashitoxicosis from a doctors mouth and I've been to many of them.

The simple explanation I received was "you have Hashimoto's and sometimes the two (Hashis and Graves) can cross over"

My current endo, however, acknowledges Graves but still thinks Im hypo. HashiTox is VERY difficult to get diagnosed.
 

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McKenna said:
I was dx with Hashimoto's and hashitoxicosis in June of 2010. The Hashi's dx was confirmed after my TT in the final path results. My TPO was high as was my TSI but my endo did not dx me with Graves' since my TSI was not over 125. I also had a high RAIU.

I see that some people were dx with Graves' and Hashi's and I'm curious as to how your doc came to that dx rather than hashitoxicosis. Did you have other Graves' symptoms? What were your thyroid labs? Mine consistently showed hypo.
The criteria that would set Graves' apart from Hashitoxicosis would be clinical.

Exophthalmos, goiter,pretibial myxedema and thyrotoxicosis. 3 out of 4 qualifies as per Dr. Robert Graves.

And you do know that one should have absolutely no TSI. TSI if present is only diagnostic of hyperthyroid. TSI is thyroid "stimulating" immunoglobulin.

In your case, the pathologist identified Hurthle Cells that are indigenous to Hashimoto's so that settled that.

Stimulating, binding and blocking antibodies and autoantibodies can and will skew the thyroid panel (TSH, FT4 and FT3.)

How are you feeling these days? Good, I hope?
 

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Discussion Starter · #4 ·
My endo dx me with it at my first appointment with him and used the word "hashitoxic" and explained it and also about hashi's encephalopathy.

He did not run my TSI, but I had my family doctor do it for me a few months later. I know my TSI had to be higher when I was feeling very hyper, but no one tested it, I had to insist on it. By the time I had it done I was calming down and my TSI was 103. Then my endo ordered another one after he saw the first results from my doc and it was down in the 60's by then. That was only about 10 days or so later. My endo only acknowledged the high TSI by saying "you dont have Graves'."

No other doctor has used that term with me. When I went to my surgeon consult for the TT I told him about the hashitoxicosis but he marked my chart as hyperthyroid. He also told me my thyroid looked like a "hyper" thyroid when he took it out. Sticky and very inflamed. He said it took a while to get out b/c it was stuck to everything in there.
 

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McKenna said:
My endo dx me with it at my first appointment with him and used the word "hashitoxic" and explained it and also about hashi's encephalopathy.

He did not run my TSI, but I had my family doctor do it for me a few months later. I know my TSI had to be higher when I was feeling very hyper, but no one tested it, I had to insist on it. By the time I had it done I was calming down and my TSI was 103. Then my endo ordered another one after he saw the first results from my doc and it was down in the 60's by then. That was only about 10 days or so later. My endo only acknowledged the high TSI by saying "you dont have Graves'."

No other doctor has used that term with me. When I went to my surgeon consult for the TT I told him about the hashitoxicosis but he marked my chart as hyperthyroid. He also told me my thyroid looked like a "hyper" thyroid when he took it out. Sticky and very inflamed. He said it took a while to get out b/c it was stuck to everything in there.
There you go; Hashitoxicosis. No question about it.

You are so kind to share your experience w/our posters. You never know; you could be saving a life.
 

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Andros said:
The criteria that would set Graves' apart from Hashitoxicosis would be clinical.

Exophthalmos, goiter,pretibial myxedema and thyrotoxicosis. 3 out of 4 qualifies as per Dr. Robert Graves.

And you do know that one should have absolutely no TSI. TSI if present is only diagnostic of hyperthyroid. TSI is thyroid "stimulating" immunoglobulin.

In your case, the pathologist identified Hurthel Cells that are indigenous to Hashimoto's so that settled that.

Stimulating, binding and blocking antibodies and autoantibodies can and will skew the thyroid panel (TSH, FT4 and FT3.)

How are you feeling these days? Good, I hope?
I'm doing well. Still healing and waiting to get my Armour right. I lab this week and go to the endo next week.

This is what I don't get....one of the criteria for Graves' is thyrotoxicosis, yet the symptoms of that are the same as Hashitoxicosis. I had thyrotoxicosis and a goiter, so that was two out of the four criteria. Yet I had Hashi's. I'm just thinking aloud here and wondering if I had let this go longer, would I have developed another Graves' symptom. Then would I have been dx with Graves' and Hashi's? I know there's no answer to that, but I'm still trying to figure out how all this works! LOL! And how people get diagnosed with both. Thyroid stuff is so complex. :confused0003:
 

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I find this all confusing myself. I asked to have my thyroid checked because I was so exhausted, my cholesterol had jumped, and I thought I was hypo, only to find out I was hyper. I had high TPO, and Thyroglobulin and low TSI with normal FT4 which prompted the endo referral. Then, I went into thyroid storm. I finally saw the endo after the hospital stay and he was only concerned about TSI, which was also high when he tested it and told me I most likely had Graves. I felt positively wretched on anti-thyroid meds and am relieved that they agreed to take out my thyroid. Pathology report read "diffuse hyperplaysia and changes consistent with Graves disease." Then my new doctor told me my antibody tests indicated that I also had Hashi's which really confused me. I have had symptoms of both hyper and hypothyroidism for years. 5 years ago, I also had low TSH with normal Free T4, but was told I could not possibly have graves because I was overweight and had no goitre. Anyway, the docs have told me so many different things and I have no idea what to believe. I just know Iam glad my sick thyroid is gone.

The other thing the new doc told me is that none of the antibodies really matter now that my thyroid is out because they basically go with the thyroid. I know with Graves, there are antibodies that are still active when the thyroid is gone and that is what causes eye disease. What about with Hashi's? Do the antibodies disappear with the thyroid? Is there any point in getting antibody tests after a thyroid is removed? If there are still antibodies, how do they affect my thyroid replacement med?
 

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Discussion Starter · #8 ·
If there are still antibodies, how do they affect my thyroid replacement med?
I wonder about this too. Someone told me that antibodies skew lab results so they may not be accurate. Then what? Do we go more by symptoms?

When I had my first post op appointment with my endo I told him a lot of my pains were gone, particularly the excruciating arm and leg pain, and he told me that the antibodies should be dying down. He ordered TPO and Thyroglobulin to be done with this round of labs to see what they are doing, so I'm guessing it still has importance in some way. I just had them done so we'll see what the results are next week at my appointment.

I, too, am glad my thryoid is out!
 

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lavender said:
I find this all confusing myself. I asked to have my thyroid checked because I was so exhausted, my cholesterol had jumped, and I thought I was hypo, only to find out I was hyper. I had high TPO, and Thyroglobulin and low TSI with normal FT4 which prompted the endo referral. Then, I went into thyroid storm. I finally saw the endo after the hospital stay and he was only concerned about TSI, which was also high when he tested it and told me I most likely had Graves. I felt positively wretched on anti-thyroid meds and am relieved that they agreed to take out my thyroid. Pathology report read "diffuse hyperplaysia and changes consistent with Graves disease." Then my new doctor told me my antibody tests indicated that I also had Hashi's which really confused me. I have had symptoms of both hyper and hypothyroidism for years. 5 years ago, I also had low TSH with normal Free T4, but was told I could not possibly have graves because I was overweight and had no goitre. Anyway, the docs have told me so many different things and I have no idea what to believe. I just know Iam glad my sick thyroid is gone.

The other thing the new doc told me is that none of the antibodies really matter now that my thyroid is out because they basically go with the thyroid. I know with Graves, there are antibodies that are still active when the thyroid is gone and that is what causes eye disease. What about with Hashi's? Do the antibodies disappear with the thyroid? Is there any point in getting antibody tests after a thyroid is removed? If there are still antibodies, how do they affect my thyroid replacement med?
Antibodies and autoantibodies are indigenous to the organ they are attacking. So, as we all know, treating the thyroid or even removing it does little for the eyes and that is why seeing a board certified ophthalmologist with experience in this field is so so important. That would be true for TED (thyroid eye disease) and GED (Graves' Eye Disease.)

Treating the thyroid is helpful in that it provides the immune system a modicum of relief but it in no way stops the orbital infiltration. Andros

Graves' eye disease is currently believed to be due to a similar autoimmune reaction. However, in the case of Graves' eye disease, different antibodies attack the muscles associated with eye and eyelid movement. Although the thyroid gland and the eye may be under attack by the same immune system, it is felt that both conditions remain independent of one another. The antibodies that attack the eye can cause inflammation and swelling of the muscles around the eye, which is what can eventually cause protrusion of the eyes, double vision and retraction of the eyelids.

http://www.facialworks.com/index.cfm/PageID/2815
 

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In my Internet research on thyroid problems, I have read that some doctors prefer to stick with "Autoimmune Thyroid Disease" as the primary diagnosis for people who have both sets of antibodies present. These docs believe that some individuals manifest symptoms of Hashi's and Grave's at different points in their lives. I can imagine that if a person manifests antibodies for Hashi's, which causes destruction of the thyroid as well as Grave's, which stimulates the thyroid to overproduce thyroid hormone AT THE SAME TIME, then you will have the alternating symptoms you describe.

I have also read that "hashitoxicosis" is more of a descriptive, rather than a technically clinical, term. Some docs must find it helpful to use with patients. Regardless, I do not envy any of you who have experienced these confusing symptoms.

When I was reading about this, I remember the discussion being pretty technical. Since the majority of docs don't go through an endocrinology rotation in medical school, it's no wonder that such a confusing presentation of symptoms would elicit different responses from various docs. No wonder folks have coined the term "Hypo- or hyper-hell"--those of you who describe these symptoms got a double dose of trouble!
 

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McKenna said:
I wonder about this too. Someone told me that antibodies skew lab results so they may not be accurate. Then what? Do we go more by symptoms?

When I had my first post op appointment with my endo I told him a lot of my pains were gone, particularly the excruciating arm and leg pain, and he told me that the antibodies should be dying down. He ordered TPO and Thyroglobulin to be done with this round of labs to see what they are doing, so I'm guessing it still has importance in some way. I just had them done so we'll see what the results are next week at my appointment.

I, too, am glad my thryoid is out!
I know I felt tons better right after my surgery and suppose it was all those antibodies cooling off in the absence of the sick gland. But then 5 months of Synthroid had me in a downward spiral with fatigue, body pains, no memory, not being able to think or function at all which makes me think that some sort of antibody was getting kicking again. I seem to be steadily improving on Armour. My joint pain is lowering and overall body pains are back to pre-thyroid illness levels that are so much more manageable. Now that I am on the Armour, I think I may actually be able to tease out what else is going on.
 

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Andros said:
Antibodies and autoantibodies are indigenous to the organ they are attacking. So, as we all know, treating the thyroid or even removing it does little for the eyes and that is why seeing a board certified ophthalmologist with experience in this field is so so important. That would be true for TED (thyroid eye disease) and GED (Graves' Eye Disease.)

Treating the thyroid is helpful in that it provides the immune system a modicum of relief but it in no way stops the orbital infiltration. Andros

Graves' eye disease is currently believed to be due to a similar autoimmune reaction. However, in the case of Graves' eye disease, different antibodies attack the muscles associated with eye and eyelid movement. Although the thyroid gland and the eye may be under attack by the same immune system, it is felt that both conditions remain independent of one another. The antibodies that attack the eye can cause inflammation and swelling of the muscles around the eye, which is what can eventually cause protrusion of the eyes, double vision and retraction of the eyelids.

http://www.facialworks.com/index.cfm/PageID/2815
Thanks for the info. This does help clear things up a bit. I know my eyes were at their worst when I was in hyper storm and have gotten better. Following up with an ophthalmologist is on my to do list since my eyes are still super dry and I am having a lot more trouble focusing. At times, it seems like I see double. I know I have had trouble wearing my contacts for years because my eyes felt so gritty. Eye doc and I have tried tons of different contacts and drops with little relief. Now, I suspect this had something to do with the thyroid all along.
 

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Debbie from Milwaukee said:
In my Internet research on thyroid problems, I have read that some doctors prefer to stick with "Autoimmune Thyroid Disease" as the primary diagnosis for people who have both sets of antibodies present. These docs believe that some individuals manifest symptoms of Hashi's and Grave's at different points in their lives. I can imagine that if a person manifests antibodies for Hashi's, which causes destruction of the thyroid as well as Grave's, which stimulates the thyroid to overproduce thyroid hormone AT THE SAME TIME, then you will have the alternating symptoms you describe.

I have also read that "hashitoxicosis" is more of a descriptive, rather than a technically clinical, term. Some docs must find it helpful to use with patients. Regardless, I do not envy any of you who have experienced these confusing symptoms.

When I was reading about this, I remember the discussion being pretty technical. Since the majority of docs don't go through an endocrinology rotation in medical school, it's no wonder that such a confusing presentation of symptoms would elicit different responses from various docs. No wonder folks have coined the term "Hypo- or hyper-hell"--those of you who describe these symptoms got a double dose of trouble!
You are reading some good stuff. This is correct and accurate info and thank you so much for sharing.

Good to see you. I've missed you.
 

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McKenna said:
I was dx with Hashimoto's and hashitoxicosis in June of 2010. The Hashi's dx was confirmed after my TT in the final path results. My TPO was high as was my TSI but my endo did not dx me with Graves' since my TSI was not over 125. I also had a high RAIU.

I see that some people were dx with Graves' and Hashi's and I'm curious as to how your doc came to that dx rather than hashitoxicosis. Did you have other Graves' symptoms? What were your thyroid labs? Mine consistently showed hypo.
Hello, I'll spare the novel, but my endo's have heard of the term they just don't use it. I was hyper last yr for about a month, GP's assumed hyper. In 09 my TSI was 99, this yr it's less than 89. My TPO is 300+ right now. I figured that i HAD BOTH WHEN my bout of hyper/graves cleared up in 4 weeks. My current endo said that graves doesn't resolve on it's own that quickly and said it was most likely thyroiditis.I only took metho for 3 weeks. I have all 3 ab's and thankfully I've only had one episode that required medical treatment. I suspect I've had one or both for the past 18 yrs. In 09 my TSI was higher than my TPO. My tpo was less than 20. So I guess in 09 graves was dominating, even though i felt normal and my tsh was slightly decreased.
 

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Discussion Starter · #15 ·
McKenna said:
I wonder about this too. Someone told me that antibodies skew lab results so they may not be accurate. Then what? Do we go more by symptoms?

When I had my first post op appointment with my endo I told him a lot of my pains were gone, particularly the excruciating arm and leg pain, and he told me that the antibodies should be dying down. He ordered TPO and Thyroglobulin to be done with this round of labs to see what they are doing, so I'm guessing it still has importance in some way. I just had them done so we'll see what the results are next week at my appointment.

I, too, am glad my thryoid is out!
Ok...had my labs and my TPO went UP since the last time I had them run. To be fair, I did not have a TPO run since last summer, around July, and the number was 269. My TPO from a few days ago is 297. My sugery was in October so it could have gone up before the surgery, and I wasn't tested before I had my TT.

Endo said he would like to see them going down around 3 months post surgery. He upped my Armour (b/c I'm VERY hypo) and we will re-test the antibodies again at my next appt in two months. I pray they go down and it doesn't mean something else is cooking.

He asked me again how I'm feeling since the surgery (he was not really supportive of my decision to have the TT) and I told him that I don't have any of that awful hyper stuff, that internal shaking feeling, the non-stop anxiety, feeling like I drank 20 cups of coffee. I have no regrets having it out. He said my scar is one of the best he's ever seen (it was endoscopic) and the surgeon did a fantastic job.
 

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Glad to hear you are healing well. Being hypo stinks and increases your antibodies. I hope the increase helps.
 

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I welcome all comments
I am 37 and first got diagnosed with Hyperthyroid when I was 27. It just came on, I believe due to stress. At the time the dr said i Had an auto immune disease, and I would probably go hypo or I may not. He said eventually my thyroid would burn itself out or correct. All this time I have seen several of the best endo dr's in my area. I went Hypo and started on 25 synthryoid, then In a bout a year went hyper, then hypo. I then started on 50 synthroid, and same thing. Then went to 75 synthroid, and have been on it two years. I just went hyper again. I went to the doctor , and I will go back in four weeks. He said even taking it out want 100 correct it. I don't want to do that because I have already gained so much weight. He said I would do this for the rest of my life. He said I had Hashimotos Thyroiditis, but when I researched it did not sound like that. My hr is very high, and I am having panic attacks. I am worn out. My fear is he will crash me out to hypo, and I will have to slowly come back up. You gain weight, can't get out of the bed, face is swollen . I feel awful. Has anyone else gone through this? I want stay hyper for more than 8 weeks I don't think, I usually don't. I need advice. I do have my labs, and as of 4/6/2011 I was still hyper but coming down.
 

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Respiratory said:
I welcome all comments
I am 37 and first got diagnosed with Hyperthyroid when I was 27. It just came on, I believe due to stress. At the time the dr said i Had an auto immune disease, and I would probably go hypo or I may not. He said eventually my thyroid would burn itself out or correct. All this time I have seen several of the best endo dr's in my area. I went Hypo and started on 25 synthryoid, then In a bout a year went hyper, then hypo. I then started on 50 synthroid, and same thing. Then went to 75 synthroid, and have been on it two years. I just went hyper again. I went to the doctor , and I will go back in four weeks. He said even taking it out want 100 correct it. I don't want to do that because I have already gained so much weight. He said I would do this for the rest of my life. He said I had Hashimotos Thyroiditis, but when I researched it did not sound like that. My hr is very high, and I am having panic attacks. I am worn out. My fear is he will crash me out to hypo, and I will have to slowly come back up. You gain weight, can't get out of the bed, face is swollen . I feel awful. Has anyone else gone through this? I want stay hyper for more than 8 weeks I don't think, I usually don't. I need advice. I do have my labs, and as of 4/6/2011 I was still hyper but coming down.
Hi there and welcome. Sure would like to have a peek at those labs and if you do post them, please include the ranges as different labs use different ranges.

Have you had any of these antibodies' 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/

Have you had a sonogram or RAIU (radioactive uptake scan) to rule out cancer or to pinpoint any other irregularities?

Your chances of losing weight and stabilizing are probably much better if you have your thyroid out. It is impossible to get the patient to euthyroid state when they are flipping back and forth like you are. (This is just my opinion.)

It is also my opinion that you should be on a betablocker so as to limit damage to the heart.

Glad you are here.

 

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There is a great book by Dr. Kenneth Ain, M.D. and M. Sara Rosenthal called the Complete Thyroid Book first published in 2000.

Dr. Ain is an endocrinologist and M. Sara Rosenthal has had thyroid cancer and recovered. There is a newer edition but I do not know the year published. I found it at my local library. It is full of comforting information.
 
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