# Experience with hashitoxicosis



## Debbie from Milwaukee (Apr 18, 2010)

I was wondering if anyone on this forum has been diagnosed with hashitoxicosis. My daughter has not been formally diagnosed with this condition, but what I have read about it on the Internet seems to match a lot of my daughter's symptoms. I would appreciate hearing how your doctor diagnosed you, what symptoms you have experienced, and what treatment(s) you have been prescribed. I am also wondering if people think this condition is fairly rare or if it is perhaps more common than people realize and often not properly diagnosed.

Thanks!


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## Lovlkn (Dec 20, 2009)

Hi Debbie,

I was diagnosed with hashitoxicosis by my surgeon after my TT.

My experiences were mainly hyper as far as symptoms and I was treated with anti thyroid medications for 4.5 years.

It took me a long time to get a diagnosis of graves disease and I was positive for thyrotropin receptor antibodies (pretty much the same as TSI) as well as TPO antibodies which were 476 at DX and over 2000 4 years later.

Nasdaqphil has posted his experience and from what I read from others everybodies hashitoxicosis experience is a different one.

I personally think it is more common and not diagnosed.

Why do you think the doctors were led to dx your daughter with hashitoxicosis?


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## CA-Lynn (Apr 29, 2010)

Lovlkn, I don't believe the daughter has been given such a diagnosis. It's what her mother, Debbie, seems to think she might have.

I have recently recovered from Hashitoxicosis. In talking with people and reading the accounts of those who were given the same diagnosis, our symptoms were not *** for tat. In fact, the symptomology of this condition is often diverse and varies from patient to patient.

In my case my exceptionally well-controlled Hashimoto's of some 20 years plummeted into Graves shortly after I had a Tdap booster which sent my entire system into battle. No one will confim that the Tdap booster was the cause, but the timeline points towards it. No amount of medication adjustment by my endocrinologist seemed to help [and she only made modest changes]. It was as if I just had to ride it out. It took me nearly two years to "re-normalize." [Normal for me, that is.] But then I have a number of autoimmune diseases that were in flare mode. Thyroid antibody tests helped with the diagnosis.

Some people will read about physical symptoms in various literature, which often is very broad and too often affiliated with a hundred other diseases. Best, I think, to let experienced endocrinologists run antibody tests.


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## Lovlkn (Dec 20, 2009)

CA-Lynn said:


> Lovlkn, I don't believe the daughter has been given such a diagnosis. It's what her mother, Debbie, seems to think she might have.


My bad - sorry.

My personal opinion is most thyroid disorders can teeter back and forth exhibiting both hyper and hypo symptoms. When this happens many times it produces conflicting lab results.

I'm not sure whether it matters if it's hashitoxicosis or not as doctors only treat "symptoms" and with hashitoxicosis the symptoms can change - sometimes rapidly from hyper to hypo.

Elaine Moore has quite alot of information posted on her website about hashitoxicosis.


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## prettynikki5 (Dec 9, 2009)

Debbie from Milwaukee said:


> I was wondering if anyone on this forum has been diagnosed with hashitoxicosis. My daughter has not been formally diagnosed with this condition, but what I have read about it on the Internet seems to match a lot of my daughter's symptoms. I would appreciate hearing how your doctor diagnosed you, what symptoms you have experienced, and what treatment(s) you have been prescribed. I am also wondering if people think this condition is fairly rare or if it is perhaps more common than people realize and often not properly diagnosed.
> 
> Thanks!


Hi Debbie 
I was dx Hashi's last fall-I personally believe that I had hashitoxicosis going on because I had a 'mixture' of hypo/hyper symptoms. I would swing back and forth. Also, after my TT my poor thyroid looked like it had been in a gang initiation, just horrible. Those antibodies are no joke-they are out for the kill.
I was never diagnosed with hashitoxicosis-my doc diagnosed Hashi's and left it at that. My thyroid levels were always normal-but antibodies were very high. I had surgery due to a goiter that was not responding (shrinking) with meds (Synthroid) and it was restricting my airway and seriously affecting my sleep health. Best wishes for you and your daughter-I hope she gets to feeling better very very soon, it is truly a rough ride-but the support here really is wonderful!


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## Andros (Aug 26, 2009)

In reading along here the thought occured to me that the proper terminology may be Thyrotoxicosis.

Thyroid Manager which is a highly credible and peer reviewed source makes no mention of Hashitoxicosis. They refer to the hyper state in the Hashimoto's patient as thyrotoxicosis.

I bring this to light because it is helpful to know the proper terminology when doing research and using the search engines.

http://www.thyroidmanager.org/Chapter8/8-frame.htm

Occasionally the picture of Hashimoto's thyroiditis blends rather imperceptibly into that of thyrotoxicosis, and some patients have symptoms of mild thyrotoxicosis, but then develop typical Hashimoto's thyroiditis. In fact, it is best to think of Graves' disease and Hashimoto's thyroiditis as two very closely related syndromes produced by thyroid autoimmunity. Categorization depends on associated eye findings and the metabolic level, but the pathogenesis, histologic picture, and function may overlap.

You will find this under Differential Diagnosis, Chapter 8 in the link above.

Hope this is helpful to all who are reading this thread.

And, I do note that Hashitoxicosis is a popular word but I thought we could turn up more credible info using the other word.

:hugs:


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## prettynikki5 (Dec 9, 2009)

Andros said:


> In reading along here the thought occured to me that the proper terminology may be Thyrotoxicosis.
> 
> Thyroid Manager which is a highly credible and peer reviewed source makes no mention of Hashitoxicosis. They refer to the hyper state in the Hashimoto's patient as thyrotoxicosis.
> 
> ...


Rock on, Andros! Thanks for the info...


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## Debbie from Milwaukee (Apr 18, 2010)

Everyone:
Thanks so much for both your personal experiences as well as some research to check out. Andros, that is helpful to find that hashitoxicosis is more of a common descripter rather than an actual condition, and that the proper term is thyrotoxicosis. From whatever you call it, sounds like it is h*** to go through it!

I believe my daughter's current doctor ordered the antibody tests for Hashi's and my daughter took that blood test. My daughter will be following up with another doctor the first thyroid specialist is referring her to (because we need someone who can bill my daughter's insurance), and that appt. is next Tuesday. Already the first doc has diagnosed Hashi's based on a recent thyroid ultrasound: "The images show small heterogeneous echotexture thyroid gland. Dimensions of the thyroid tissue are difficult to determine due to relative axilla of surrounding tissues. The right lobe measures up to 8 mm in short axis dimension with longitudinal dimensions of approximately 2 cm. In the left measures and approximately to the 6 mm in short axis dimension and 2 cm. in chronic although dimension but no dominant solid or cystic mass is present. The isthmus is also diminutive in size measuring no greater than 2 mm. Impression: A small heterogeneous echotexture gland is present with sequela of previous thyroiditis. No dominant solid or cystic mass is present." This US scan follows RAI 3 years ago for Grave' disease. No mention of Hashimoto's thyroiditis was mentioned when my daughter was first diagnosed at 17.

Her thyroid levels from about 2 1/2 weeks ago were TSH = 0.14 (0.34-5.60); free T4=0.6 (0.6-1.2); and T3 Free 5.6 (2.5-3.9). I know that she took her dose of 2 pills each of 60 mg. (120 mg. total) Armour thyroid that morning before the test, so I don't know if that may have affected the accuracy of the levels.

Sounds like the most crucial thing to look at for this condtion is the autoimmune antibodies. We'll see what the new doc says when my daughter sees him next week.


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## Andros (Aug 26, 2009)

Debbie from Milwaukee said:


> Everyone:
> Thanks so much for both your personal experiences as well as some research to check out. Andros, that is helpful to find that hashitoxicosis is more of a common descripter rather than an actual condition, and that the proper term is thyrotoxicosis. From whatever you call it, sounds like it is h*** to go through it!
> 
> I believe my daughter's current doctor ordered the antibody tests for Hashi's and my daughter took that blood test. My daughter will be following up with another doctor the first thyroid specialist is referring her to (because we need someone who can bill my daughter's insurance), and that appt. is next Tuesday. Already the first doc has diagnosed Hashi's based on a recent thyroid ultrasound: "The images show small heterogeneous echotexture thyroid gland. Dimensions of the thyroid tissue are difficult to determine due to relative axilla of surrounding tissues. The right lobe measures up to 8 mm in short axis dimension with longitudinal dimensions of approximately 2 cm. In the left measures and approximately to the 6 mm in short axis dimension and 2 cm. in chronic although dimension but no dominant solid or cystic mass is present. The isthmus is also diminutive in size measuring no greater than 2 mm. Impression: A small heterogeneous echotexture gland is present with sequela of previous thyroiditis. No dominant solid or cystic mass is present." This US scan follows RAI 3 years ago for Grave' disease. No mention of Hashimoto's thyroiditis was mentioned when my daughter was first diagnosed at 17.
> ...


Doesn't sound like all her thyroid was zapped. Geez.


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## Lovlkn (Dec 20, 2009)

> Her thyroid levels from about 2 1/2 weeks ago were TSH = 0.14 (0.34-5.60); free T4=0.6 (0.6-1.2); and T3 Free 5.6 (2.5-3.9). I know that she took her dose of 2 pills each of 60 mg. (120 mg. total) Armour thyroid that morning before the test, so I don't know if that may have affected the accuracy of the levels.


Excuse me but these results look terrible. Anyone with Armour experience have any thoughts? How does she feel?


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## GD Women (Mar 5, 2007)

Debbie,

Over dosed on Armour. FT3 is way too high. However it is recommended not to take Armour before test, so FT3 level might not be correct and relate to her true thyroid status. I would think she would feel very hyper and very off.

I would think most crucial thing would be to get her FT3 level a little more into Labs high range and med. dose correct. Before she goes into thyroid storm. This is causing a reverse FT3.

Shouldn't she be taking the two Armour doses 4 to 6 hours apart and not all at once.


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## Debbie from Milwaukee (Apr 18, 2010)

I think these results may have been skewed by taking 120 mg. of Armour thyroid before the blood test (we were not told otherwise). This was taken on only her 2nd day of taking the Armour after only taking Levothyroxine ever since she had her RAI done 3 years ago. The situation now is that Kalina will be a few more days in the psych. hospital. I mentioned to the nurse that the Armour dose would work better if the pills were taken a few hours apart, but I don't think they are doing that. It is very difficult to get all of the right things done for a number of reasons.

Several people (including Kalina) are trying to get an IV magnesium treatment for her as well. Kalina's June 3rd magnesium RBC level was 2.7 (4.0-6.4)--this was the lowest level her doctor had ever seen in a live person! Kalina got 1 magneseum IV treatment, but she was supposed to get 2 more. You asked how she feels--she is coming a bit out of her brain fog and depression, but she becomes fatigued very easily and is sensitive to ANY stress at all. She also has yet to get her adrenals tested, which are suspected to be very off.


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## Lovlkn (Dec 20, 2009)

Debbie from Milwaukee said:


> I think these results may have been skewed by taking 120 mg. of Armour thyroid before the blood test (we were not told otherwise). This was taken on only her 2nd day of taking the Armour after only taking Levothyroxine ever since she had her RAI done 3 years ago. The situation now is that Kalina will be a few more days in the psych. hospital. I mentioned to the nurse that the Armour dose would work better if the pills were taken a few hours apart, but I don't think they are doing that. It is very difficult to get all of the right things done for a number of reasons.
> 
> Several people (including Kalina) are trying to get an IV magnesium treatment for her as well. Kalina's June 3rd magnesium RBC level was 2.7 (4.0-6.4)--this was the lowest level her doctor had ever seen in a live person! Kalina got 1 magneseum IV treatment, but she was supposed to get 2 more. You asked how she feels--she is coming a bit out of her brain fog and depression, but she becomes fatigued very easily and is sensitive to ANY stress at all. She also has yet to get her adrenals tested, which are suspected to be very off.


Your poor daughter - I was not aware of the suicide attempt - with labs like these and knowing how thyroid imbalance can effect the mind it's no wonder she is having issues.

I thought I was going crazy when they brought me from full blown hyper to full blown hypo in 2 months right at the beginning of my treatment so I know exactly how mentally devastating it can be mentally.

:hugs: To both of you


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