# High Thyroid Antibodies



## nirajiitm

Hi,
I was diagnosed with severe hypothyroidism in Apr 2009. (TSH - 110. Antibodies (TPO) - 470; Normal level < 64). My treatment immediately started. But I started getting these phases where I spoke very softly, walked very slowly, had fatigue etc. I and doctors thought all this may go with normal TSH levels. However, while my TSH did come to normal by July 2009, It again escalated to 43 (on a 100 mg dose) in October. To bring it under control my dose had to be gradually increased till 150 mg. However, all this while my symptoms persisted - Headache at back of head, eye floaters, slow speech, slow walking, loss of coordination of limb movements etc. Symptoms are worse when upright. Moreover, I am not always the same person. I may speak normally at times; very slow at other times and go very very very fast at other times. I recently consulted some neurologists and they are bit confident that I have a rare complication known as Hashimoto Encephalopathy. While my MRI is normal, My EEG tests (done in June 2009 and Feb 2010) show slowing of waves. They decided to put me on steroids. But before that they wanted me to get my antibodies checked once more. I did so. Now my thyroid antibodies(TPO) are 16430. The lab had to recheck the number thrice because they felt it was too high. But the number is now confirmed. Due to holidays coming in between, I am yet to take the report to the doctor. But I have a couple of doubts.

While I may have mild encephalopathy (severe encephalopathy would have lead to seizures, convulsions etc) I am sure this is the effect of high antibodies rather than the cause of it. I am still unable to figure out:
Q 1) How the antibodies (TPO) have gone up drastically. What can be the causes and what may be the cures?
Q 2) Why my symptoms worsen when I am upright and are almost fine when I lie down. I have not been able to explain this through any stuff that I have read on the internet regarding Hashimoto's or antibodies. I do not think I have hypotension since I do not feel there is a significant change in my heartbeat/ blood pressure between the supine and upright position.

My work life has been affected (I had to cut down all travels) and am doing an office based job in which i can operate from home. While things are not optimal, I am sure they will improve. Just that i am unable to figure out the two questions mentioned above

Pls do respond


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## chopper

Hello and welcome. I will say your case seems a bit unusual. HE is very rare but your symptoms seem to fit. I don't think HE has ever been discussed at length on these boards since it is so rare.

The antibody levels are an immune response. Your body is simply fighting itself and as far as I know, no one fully understands why that happens.

My first instinct upon reading your case was some type of tumor. Perhaps a TSH secreting tumor but that does not explain the very high antibody count.

Have you had a real good MRI with contrast?

How are your other pituitary related hormones like prolactin, testosterone, FSH, LH, cortisol?

I can tell you that true HE is rare enough that none of us here will have had any direct experience with it I don't think. If it is in fact HE I would try to seek a doctor with some HE experience if possible.

I am not sure if a thyroidectomy helps at all because where do all those antibodies go once they do not have a thyroid to attack?


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## chopper

I actually had to reread your post since your symptoms are so unusual as you describe them.

You mentioned sometimes you speak slow and sometimes fast. Have you ever noticed a change in your heart rate during these times? When you speak fast do you feel more clear headed like you had too much caffeine?

If the MRI was done well and is in fact clean, it is possible you just have a very severe case of hashimotos. My antibodies go up and down too. My TPO has been 3000+ and as low as 700. I do feel better when it's low. Stress seems to trigger them.

You are on such a high dose of thyroid now. It's possible you are swinging from hypo to hyper due to the thyroid meds and a sputtering thyroid. Have you discussed a thyroidectomy with your doctor yet?


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## nirajiitm

Hi 
Thanks for the immediate response.

Would reply to a few points that you mentioned
1 "_You are on such a high dose of thyroid now. It's possible you are swinging from hypo to hyper due to the thyroid meds _"
*My Response -* I do not think I have been hyper at any point. My TSH is tested every 15 days. And the lowest it has ever been is 3.7. So hyperthyroidism is not likely to be an issue. Also my dose has gradually gone up (started at 75 mg, then 100, then 112, then 125, then 137, now 150)

2 "_How are your other pituitary related hormones like prolactin, testosterone, FSH, LH, cortisol_"
*My Response* - Yes, all these were below normal between Apr 2009 to July 2009. But since then they have been pretty much ok. I also had an ACTH test in June and it turned out to be normal

3 _Have you ever noticed a change in your heart rate during these times? When you speak fast do you feel more clear headed like you had too much caffeine?_
*My Response* - I do not think my heart rate is high. But yes my headache is more profound at these times.

Actually, as you would know people with thyroid related issues are always suspected to be depressed. Doctors wasted a lot of time suggesting I consult a psychiatrist. I kept insisting that I am not depressed at all. Well, I almost lost my job so had to figure out how I would restart my work life. Thankfully, have been able to hang in and things are much better (work wise) than they were 6 months back

Atleast, with the high antibodies I am happy that a problem has been identified. Let us see what happens next. Probably, as you said, a thyroidectomy may need to be considered. Hope life doesn't go worse after that. :confused0033:

Will look into the MRI part as well. You have really been of help. Actually, I had to read a lot to convince doctors/ family that it may be a neuroproblem. I think in the world of specialization one needs to be incharge of one's health rather than being dependent on doctors. That's why I wanted to be doubly confident about HE. Lots of symptoms agree. For ex: I believe my brain at times works too slowly. When I am walking I need to tell myself to take the next step. Such things do happen doing other tasks as well. Blank Stares keep happening. So this is another reason, along with other reasons + EEG + Antibodies, that i feel I may be a HE case. Just that it's, as you mentioned, very rare. Also HE probably doesn't explain the difference between upright and supine position. Though on second thoughts the difference isn't great. (Ofcourse, I am not walking when lying down  )

Let me know if you have any thoughts/ suggestions. Thanks again.


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## Andros

nirajiitm said:


> Hi,
> I was diagnosed with severe hypothyroidism in Apr 2009. (TSH - 110. Antibodies (TPO) - 470; Normal level < 64). My treatment immediately started. But I started getting these phases where I spoke very softly, walked very slowly, had fatigue etc. I and doctors thought all this may go with normal TSH levels. However, while my TSH did come to normal by July 2009, It again escalated to 43 (on a 100 mg dose) in October. To bring it under control my dose had to be gradually increased till 150 mg. However, all this while my symptoms persisted - Headache at back of head, eye floaters, slow speech, slow walking, loss of coordination of limb movements etc. Symptoms are worse when upright. Moreover, I am not always the same person. I may speak normally at times; very slow at other times and go very very very fast at other times. I recently consulted some neurologists and they are bit confident that I have a rare complication known as Hashimoto Encephalopathy. While my MRI is normal, My EEG tests (done in June 2009 and Feb 2010) show slowing of waves. They decided to put me on steroids. But before that they wanted me to get my antibodies checked once more. I did so. Now my thyroid antibodies(TPO) are 16430. The lab had to recheck the number thrice because they felt it was too high. But the number is now confirmed. Due to holidays coming in between, I am yet to take the report to the doctor. But I have a couple of doubts.
> 
> While I may have mild encephalopathy (severe encephalopathy would have lead to seizures, convulsions etc) I am sure this is the effect of high antibodies rather than the cause of it. I am still unable to figure out:
> Q 1) How the antibodies (TPO) have gone up drastically. What can be the causes and what may be the cures?
> Q 2) Why my symptoms worsen when I am upright and are almost fine when I lie down. I have not been able to explain this through any stuff that I have read on the internet regarding Hashimoto's or antibodies. I do not think I have hypotension since I do not feel there is a significant change in my heartbeat/ blood pressure between the supine and upright position.
> 
> My work life has been affected (I had to cut down all travels) and am doing an office based job in which i can operate from home. While things are not optimal, I am sure they will improve. Just that i am unable to figure out the two questions mentioned above
> 
> Pls do respond


Hi and welcome. Oh, dear .......................you surely are unwell.

What medication are you on? What is your Free T4 and Free T3 (not T4 & T3?) Have you had the FREES ever done w/TSH?

Are you taking any other meds or herbs and/or supplements?


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## chopper

[quote name='nirajiitm']

2 "_How are your other pituitary related hormones like prolactin, testosterone, FSH, LH, cortisol_"
*My Response* - Yes, all these were below normal between Apr 2009 to July 2009. But since then they have been pretty much ok. I also had an ACTH test in June and it turned out to be normal

....When I am walking I need to tell myself to take the next step. Such things do happen doing other tasks as well. Blank Stares keep happening. quote]

ok, you said your other tests were below normal. Can you confirm if they were VERY below normal or unremarkable? I ask because a pituitary tumor that is secreting TSH would and/or could hinder the performance of other needed hormones that the pituitary is supposed to produce. i.e. if a good chunk of your pituitary is being used up for producing TSH then it would make sense that something (a tumor perhaps) is impeding on the production of the other hormones. Do you have lab values for those other tests?

Regarding the second part of the quote above, a very hypo state could account for that blank stare you describe for sure. You are well beyond my point of hypo so I cannot know how you feel but I too will do everything slowly and find myself searching for words when speaking when I am on the hypo side. When I toggle over to hyper everything comes quickly. I talk so fast I nearly get out of breath and everything is sharp and focused in a sort of neurotic way.

I would like to see some Free T3, Free T4, Total T3, Total T4 and TSI labs as well as all the other pituitary related hormones mentioned in my previous reply. How is your cholesterol?


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## nirajiitm

Hi
Results for some Lab tests as in Apr-May 2009 (Exact Dates may vary)
*Serum Prolactin*: 15.33 ng/ml (Normal Range 2.2 - 18.5 ng/ml)
*Serum Cortisol (30th May)* : 146.4 nMol/ L (Normal Range 138 - 696 nmol/L)
*Serum Cortisol (17th June)* : 134.5 nMol/ L (Normal Range 138 - 696 nmol/L)
*Serum Cortisol (24th Aug)* : 13.96 mcg/dl (Normal Range 6.2 - 19.4 mcg/dl) (Serum cortisol done in Nov also came to be normal)
*Serum Testosterone (10th July)* : 5.39 ng/ ml (Normal Range 2.8 - 8 ng/ml)

*ACTH test:* (19th June 2009)
Serum cortisol (after 60 min) 688 nmol/l (Normal Response> 550 nmol/l)

Have done numerous TSH, FT3 and FT4 tests. But I would just quote the important ones here
*
Date: 27th Apr 2009*
T3 (Not Free T3): 39 ng/dl (Normal range: 100-190 ng/dl)
T4 (Not Free T4): 20.8 nmol/L (Normal range: 57-157 nmol/l)
TSH: 92.81 (It was 110 a week before, but do not have results for other tests for that date)

*Date: 12th May*
T3 (Not Free T3): 61 ng/dl (Normal range: 100-190 ng/dl)
T4 (Not Free T4): 27.9 nmol/L (Normal range: 57-157 nmol/l)
TSH: 44.6

*Date: 17th June*
T3 (Not Free T3): 113 ng/dl (Normal range: 100-190 ng/dl)
T4 (Not Free T4): 70.49 nmol/L (Normal range: 57-157 nmol/l)
TSH: 1.34

*Date: 5th Nov*
Free T3: 2.3 pg/ml (Normal range: 2.3-4.2 pg/ml)
Free T4: 0.7 ng/dl (Normal range: 0.89 - 1.76 ng/dl)
TSH: 27.3

TSH was 43.1 the subsequent day, 6th Nov. At this point, my dose had to be increased from 100 mg to 125 mg

*Date: 27th Nov*
Free T3: 3.03 pmol/l (Normal range: 4-8.3 pmol/l)
Free T4: 9.74 pmol/l (Normal range: 9-20 pmol/l)
TSH: 12.75

In Dec 2010, the doctor increased my dose from 125 mg to 137.5 mg

*Date: 4th Jan 2010*
TSH: 16.01 (At this point my dose had to be increased from 137.5 to 150 mg)

*Date: 23rd Jan 2010*
TSH: 3.94

*Date: 26th Feb 2010*
FT4: 1.1 ng/dl (Normal range: 0.89 - 1.76 ng/dl)
TSH: 4.04

Cholestrol (HDL) is always just below normal levels. I think that is a normal case with hypothyroid people.

As you may see, pituitary seems to be alright. Probably it may just be a hypothyroid issue (with some reason for escalating high antibodies). But then symptoms persist though TSH has been in range over the last 2 months. Also hypothyroidism doesn't explain the loss of coordination of speech, limb movements or eye floaters. Let me know what you think

Regards


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## nirajiitm

Hi
I just reread your mail. You mentioned your antibodies vary between 700 and 3000.

This is interesting. Until my test results had come, i thought antibodies levels remain static or decrease with thyroxine replacement. I got worried with my results since they contradicted my understanding. Now what you mention is something similar to my case. So your antibodies also flare up? Do you also experience symptoms similar to mine (headache, floaters, loss of coordination)? What brings the antibodies down?

Also if possible, can you solicit views of someone who has had direct experience of HE?

Regards


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## Andros

nirajiitm said:


> Hi
> Results for some Lab tests as in Apr-May 2009 (Exact Dates may vary)
> *Serum Prolactin*: 15.33 ng/ml (Normal Range 2.2 - 18.5 ng/ml)
> *Serum Cortisol (30th May)* : 146.4 nMol/ L (Normal Range 138 - 696 nmol/L)
> *Serum Cortisol (17th June)* : 134.5 nMol/ L (Normal Range 138 - 696 nmol/L)
> *Serum Cortisol (24th Aug)* : 13.96 mcg/dl (Normal Range 6.2 - 19.4 mcg/dl) (Serum cortisol done in Nov also came to be normal)
> *Serum Testosterone (10th July)* : 5.39 ng/ ml (Normal Range 2.8 - 8 ng/ml)
> 
> *ACTH test:* (19th June 2009)
> Serum cortisol (after 60 min) 688 nmol/l (Normal Response> 550 nmol/l)
> 
> Have done numerous TSH, FT3 and FT4 tests. But I would just quote the important ones here
> *
> Date: 27th Apr 2009*
> T3 (Not Free T3): 39 ng/dl (Normal range: 100-190 ng/dl)
> T4 (Not Free T4): 20.8 nmol/L (Normal range: 57-157 nmol/l)
> TSH: 92.81 (It was 110 a week before, but do not have results for other tests for that date)
> 
> *Date: 12th May*
> T3 (Not Free T3): 61 ng/dl (Normal range: 100-190 ng/dl)
> T4 (Not Free T4): 27.9 nmol/L (Normal range: 57-157 nmol/l)
> TSH: 44.6
> 
> *Date: 17th June*
> T3 (Not Free T3): 113 ng/dl (Normal range: 100-190 ng/dl)
> T4 (Not Free T4): 70.49 nmol/L (Normal range: 57-157 nmol/l)
> TSH: 1.34
> 
> *Date: 5th Nov*
> Free T3: 2.3 pg/ml (Normal range: 2.3-4.2 pg/ml)
> Free T4: 0.7 ng/dl (Normal range: 0.89 - 1.76 ng/dl)
> TSH: 27.3
> 
> TSH was 43.1 the subsequent day, 6th Nov. At this point, my dose had to be increased from 100 mg to 125 mg
> 
> *Date: 27th Nov*
> Free T3: 3.03 pmol/l (Normal range: 4-8.3 pmol/l)
> Free T4: 9.74 pmol/l (Normal range: 9-20 pmol/l)
> TSH: 12.75
> 
> In Dec 2010, the doctor increased my dose from 125 mg to 137.5 mg
> 
> *Date: 4th Jan 2010*
> TSH: 16.01 (At this point my dose had to be increased from 137.5 to 150 mg)
> 
> *Date: 23rd Jan 2010*
> TSH: 3.94
> 
> *Date: 26th Feb 2010*
> FT4: 1.1 ng/dl (Normal range: 0.89 - 1.76 ng/dl)
> TSH: 4.04
> 
> Cholestrol (HDL) is always just below normal levels. I think that is a normal case with hypothyroid people.
> 
> As you may see, pituitary seems to be alright. Probably it may just be a hypothyroid issue (with some reason for escalating high antibodies). But then symptoms persist though TSH has been in range over the last 2 months. Also hypothyroidism doesn't explain the loss of coordination of speech, limb movements or eye floaters. Let me know what you think
> 
> Regards


Okay. Thank you for all of that and glad to see the doc did some FREES. If you said what med you are on,I missed it.

What thyroxine replacement are you on? I am thinking you are not taking any T3 and would benefit from some. This would get the TSH down, the antibodies down and the Free T3 up which is your "active" hormone.

You are so sick because of the high titer of antibodies, TSH and the low Frees. You cannot have much energy. You must feel like a rag doll. Do you?

Your FT4 "might" be converting to rT3 (reverse) and that would require adding some T3 to your med. That is if you are not on T3 already.


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## chopper

ok...a few more questions.....do you live here in the US?

I ask because you are just so hypo. I am almost leaning towards something diet related - like complete lack of iodine, taurine or selenium in your diet. Is there ANYTHING remarkable about your diet, where your foods come from or any other drugs, habits, prescriptions, etc that may be intervening in the production of thyroid hormone? Do you smoke / tobacco / drugs ....??? Anything?

Do you have a goiter? Fat thyroid - can feel it sticking out of your neck slightly?

I thought you would find this interesting taken from some of my very own lab results. You can see the fluctuations are quite large:

Thyroglobulin Antibody 75 0 - 40 3-18-2008
Thyroglobulin Antibody 82 <= 20 1-16-2006
Thyroglobulin Antibody 326 00 - 74 7-30-2004
Thyroglobulin Antibody 943 00 - 74 1-6-2005
Thyroglobulin Antibody 1244 00 - 74 11-17-2004
Thyroglobulin Antibody 768 00 - 74 3-15-2005

Thyroglobulin, Quant. 5.9 0.5 - 55 3-18-2008

Thyroid Peroxidase Antibody >1000 <35 1-16-2006
Thyroid Peroxidase Antibody 1014 00 - 74 7-30-2004
Thyroid Peroxidase Antibody 1605 00 - 39 1-6-2005
Thyroid Peroxidase Antibody >2,700 00 - 39 11-17-2004
Thyroid Peroxidase Antibody 2,064 00 - 39 3-15-2005

Thyroid Stimulating Immunoglobulin (TSI) 179 0 - 125 3-18-2008
Thyroid Stimulating Immunoglobulin (TSI) 130 <= 125 1-16-2006
Thyroid Stimulating Immunoglobulin (TSI) 170 <= 125 3-15-2005

So, certainly, YES, your antibodies will fluctuate all over the place. What causes this? I have no idea unfortunately. I don't think anyone knows.

To answer your other questions, thankfully I do not have many eye problems other than being very sensitive to bright sunshine. I do however have a host of other symptoms not all that different from what you describe but it fluctuates depending on what my body dishes out for the day. I do frequently drop things and bump into things. My coordination is off and I do think that is a result of the thyroid trouble but I admit I have never had the coordination of a ballet dancer to begin with.


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## nirajiitm

Hi
I am from India and I do not smoke/ drink. And, incidentally have never had a goitre or even a lump in the neck. This is a reason why the diagnosis of hypothyroidism (last year) or even the high antibodies (now) got delayed.

Had a look at your results. And it seems clear that antibodies do fluctuate. Some of your symptoms are also same as mine. I just thought I needed to be more specific about my symptoms (in case someone with HE experience has a look). So here it goes
1. *Headache*: The headache is almost always at the back of the head. It often does radiate towards the back of the neck also. At most times, it feels more like a pressure at the back of the head rather than a headache as such. It seems as if someone is forcing my head down. At other times, it is a genuine headache which intensifies for a flash second or two.

2. _*Eye Floaters*_ - Its a combination of 3-4 dark spots (black spots in front of eyes) and 3-4 floaters (black string like things). They, atleast the dark spots, are almost always there.

3. _*Wobbling neck*_ - Often due to the pressure at the back of my head my neck wobbles. I often do not make eye contact but look downwards. And my mannerisms often make one feel that my neck is not in my control

4. *Coordination of Walk, Speech and Limb Movements* - 
_Speech:_ As mentioned earlier, I often speak slow. At other times, I go very very very fast. The two can happen within hours of each other. The latter, though a very rare occurrence(has only happened twice), happens when I am very tired/ angry. At other times, even though the speed of speech is ok it comes out in a very slurred manner, making one feel that I am a neurotic patient. Also, am often stuck at the same word and it gets repeated a lot of times.

Also at times I do notice that I speak very slowly at the beginning. But if the conversation is stimulating and a prolonged one, my speed of speech (not the manner) does tend towards normal.

_Walk_ - This is almost always slow. As I said, I need to tell myself to take the next step. If I have been walking from sometime and force myself to walk fast, I do end up walking fast after 5-8 minutes. But even then the focus has to be on walking. 
_
Coordination of Limbs_ - This has started happening in the last few months. Often when I start a repetitive action, it becomes difficult to stop it. For ex: if I intend to clap thrice I end up clapping 15 times. This turns out to be most embarrassing when I pat someone on the back. I end up patting 10-12 times. Even in non repetitive tasks my hands are often all over the place.

There is also lesser control over my facial expressions. I cannot change them instantly. If I am smiling I remain smiling for 5 minutes, same with any other expression.

I do get tired easily. But still manage to jog 3 miles every day (and that's another surprising thing given my pace of walking). And do not have some typical hypo symptoms like bowel problems, depression, goitre. Also have no cognitive decline but yes many doctors have found certain cerebellar defects for example: just the other day, I was asked to extend my arms in the front and keep them parallel to the ground. I could not beyond a couple of seconds. They went down and I had to again raise them. Also my mannerisms do end up being childish at times.

Let me know what you think
Regards


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## chopper

Thanks for the clarification. Wow. You do have some not-so-average symptoms for "just hypo". The slowed/slurred speech, yes. Walking slow, yes. Bowel problems, yes. The repetitive actions, not so much.

I am not a doctor by any means and have no experience with HE other than what I've read about but your symptoms do seem to make the case for a closer look into that for sure, particularly with such high antibodies.

I am going to send you a private message that might help. I don't know if it will or not but we'll see.


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## Andros

nirajiitm said:


> Hi
> I am from India and I do not smoke/ drink. And, incidentally have never had a goitre or even a lump in the neck. This is a reason why the diagnosis of hypothyroidism (last year) or even the high antibodies (now) got delayed.
> 
> Had a look at your results. And it seems clear that antibodies do fluctuate. Some of your symptoms are also same as mine. I just thought I needed to be more specific about my symptoms (in case someone with HE experience has a look). So here it goes
> 1. *Headache*: The headache is almost always at the back of the head. It often does radiate towards the back of the neck also. At most times, it feels more like a pressure at the back of the head rather than a headache as such. It seems as if someone is forcing my head down. At other times, it is a genuine headache which intensifies for a flash second or two.
> 
> 2. _*Eye Floaters*_ - Its a combination of 3-4 dark spots (black spots in front of eyes) and 3-4 floaters (black string like things). They, atleast the dark spots, are almost always there.
> 
> 3. _*Wobbling neck*_ - Often due to the pressure at the back of my head my neck wobbles. I often do not make eye contact but look downwards. And my mannerisms often make one feel that my neck is not in my control
> 
> 4. *Coordination of Walk, Speech and Limb Movements* -
> _Speech:_ As mentioned earlier, I often speak slow. At other times, I go very very very fast. The two can happen within hours of each other. The latter, though a very rare occurrence(has only happened twice), happens when I am very tired/ angry. At other times, even though the speed of speech is ok it comes out in a very slurred manner, making one feel that I am a neurotic patient. Also, am often stuck at the same word and it gets repeated a lot of times.
> 
> Also at times I do notice that I speak very slowly at the beginning. But if the conversation is stimulating and a prolonged one, my speed of speech (not the manner) does tend towards normal.
> 
> _Walk_ - This is almost always slow. As I said, I need to tell myself to take the next step. If I have been walking from sometime and force myself to walk fast, I do end up walking fast after 5-8 minutes. But even then the focus has to be on walking.
> _
> Coordination of Limbs_ - This has started happening in the last few months. Often when I start a repetitive action, it becomes difficult to stop it. For ex: if I intend to clap thrice I end up clapping 15 times. This turns out to be most embarrassing when I pat someone on the back. I end up patting 10-12 times. Even in non repetitive tasks my hands are often all over the place.
> 
> There is also lesser control over my facial expressions. I cannot change them instantly. If I am smiling I remain smiling for 5 minutes, same with any other expression.
> 
> I do get tired easily. But still manage to jog 3 miles every day (and that's another surprising thing given my pace of walking). And do not have some typical hypo symptoms like bowel problems, depression, goitre. Also have no cognitive decline but yes many doctors have found certain cerebellar defects for example: just the other day, I was asked to extend my arms in the front and keep them parallel to the ground. I could not beyond a couple of seconds. They went down and I had to again raise them. Also my mannerisms do end up being childish at times.
> 
> Let me know what you think
> Regards


Have you been tested for Parkinson's Disease? Many of us with thyroid disease have one or more things going on. Many of your listed symptoms made me think of that.

Here is a symptoms list........
http://www.cmdg.org/Movement_/parkinso/parkinso.htm


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## chopper

Good call on the Parkinson's! That too sounds very possible with his symptoms.


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## [email protected]

Last summer I was diagnosed with Hashimoto's Encephalopathy it took 3 years to get that diagnoses and start treatment. It is not an easy thing to get diagnosed I have had at least a dozen MRI's, CT scans, Blood work, EGG's and 4 spinal taps (last may I had to have 3 in one month so they could rule out brain cancer). Then finally my Doctors agreed to start treating me for HE. My Treatment started with Prednisone 1000mg a day for 3 days IV. It takes about an hour for the IV but within 10 minutes of the start my symptoms started improving I had more control of my face (facial paralysis was one of a huge number of symptoms I was having, also right sided partial paralysis). I walked into the infusion center needing a cane I walked out holding it. Another name of HE is Steroid responsive Encephalopathy so the response prove I had it. Since the I get an IV once a month 1000mg and every few months I have to have the 3 day course.

In my case I have HE but they tell me it is a form of Paraneoplastic syndrome (a disease or symptom that is the consequence of the presence of cancer in the body, but is not due to the local presence of cancer cells). I have Papillary Thyroid cancer. I have been treated 3 times for it. HE is very rare and most cases (in fact I can find any that were related to the cancer except mine) are not related to cancer. It is mainly an autoimmune disease the immune system breaks down and starts putting out Thyroid antibodies (even though it does not need to) and these antibodies attack the brain. I hope that helps with your 1st question. As the 2nd one of the reasons for the miracles response that HE suffers have to Prednisone is that it reduce inflammation in the brain (even inflammation so small it cannot be seen on an MRI) It may be that changing positions in your case helps do the same thing simply by changing pressure of the spinal fluid.

In Jan 2006 was diagnosed with PAPILLARY Thyroid cancer before they told me about the cancer I started having stroke like deterioration and went to the ER when I found that I could not move the left side of my face. They checked me out and told me that I had Bells Palsy. Over the next few days things got worse. I started having various Neurological symptoms including bilateral facial paralysis (at it's worst I had to pinch my mouth closed to chew), sensitivity to light, sensitivity to sound, double vision (at times), blurred vision (for months my eye glass prescription would change on an almost daily basis), sense of taste changed (for some time everything tasted awful), nausea, fatigue, drooping eye lids (the right side got so bad that at times I could not see out of that eye), facial tremors and jerks, dizziness, difficulty with selecting words, pealing lips, eyes extremely dry and had to be taped shot at night, eyes watering (I looked like I was crying a lot of the time).

July 2006 had TT I could not have surgery before because I was so sick what we later found to be HE, we did not know why I was sick till 2009), 2006 Sept 150 mci RAI. Was slowly improving till Feb 2007 then relapsed (HE is a relapsing remitting conditions). March 2007 Whole Body scan was clear. March 2008 relapsed again this time started having breathing problems as well. Sept 2008 PET scan showed hot spot in Neck. Nov 2008 Modified Right sided Neck Dissection, Dec 2008 200 mci RAI whole body scan showed uptake all over the throat and into the chest. April 2009 HE became much worse developed right sided paralysis. July 2009 started monthly treatments with Steroids to control the HE. Sept 2009 200mci RAI with Thyrogen and Lithium whole body scan showed uptake in Throat was much larger then Dec but chest seemed clear. January 2010 CT and ultra sound clear, TG is still elevated and will do repeat CT, PET and Whole body scans in April (Dr wants to give RAI 6 months to work).


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## Andros

[email protected] said:


> Last summer I was diagnosed with Hashimoto's Encephalopathy it took 3 years to get that diagnoses and start treatment. It is not an easy thing to get diagnosed I have had at least a dozen MRI's, CT scans, Blood work, EGG's and 4 spinal taps (last may I had to have 3 in one month so they could rule out brain cancer). Then finally my Doctors agreed to start treating me for HE. My Treatment started with Prednisone 1000mg a day for 3 days IV. It takes about an hour for the IV but within 10 minutes of the start my symptoms started improving I had more control of my face (facial paralysis was one of a huge number of symptoms I was having, also right sided partial paralysis). I walked into the infusion center needing a cane I walked out holding it. Another name of HE is Steroid responsive Encephalopathy so the response prove I had it. Since the I get an IV once a month 1000mg and every few months I have to have the 3 day course.
> 
> In my case I have HE but they tell me it is a form of Paraneoplastic syndrome (a disease or symptom that is the consequence of the presence of cancer in the body, but is not due to the local presence of cancer cells). I have Papillary Thyroid cancer. I have been treated 3 times for it. HE is very rare and most cases (in fact I can find any that were related to the cancer except mine) are not related to cancer. It is mainly an autoimmune disease the immune system breaks down and starts putting out Thyroid antibodies (even though it does not need to) and these antibodies attack the brain. I hope that helps with your 1st question. As the 2nd one of the reasons for the miracles response that HE suffers have to Prednisone is that it reduce inflammation in the brain (even inflammation so small it cannot be seen on an MRI) It may be that changing positions in your case helps do the same thing simply by changing pressure of the spinal fluid.
> 
> In Jan 2006 was diagnosed with PAPILLARY Thyroid cancer before they told me about the cancer I started having stroke like deterioration and went to the ER when I found that I could not move the left side of my face. They checked me out and told me that I had Bells Palsy. Over the next few days things got worse. I started having various Neurological symptoms including bilateral facial paralysis (at it's worst I had to pinch my mouth closed to chew), sensitivity to light, sensitivity to sound, double vision (at times), blurred vision (for months my eye glass prescription would change on an almost daily basis), sense of taste changed (for some time everything tasted awful), nausea, fatigue, drooping eye lids (the right side got so bad that at times I could not see out of that eye), facial tremors and jerks, dizziness, difficulty with selecting words, pealing lips, eyes extremely dry and had to be taped shot at night, eyes watering (I looked like I was crying a lot of the time).
> 
> July 2006 had TT I could not have surgery before because I was so sick what we later found to be HE, we did not know why I was sick till 2009), 2006 Sept 150 mci RAI. Was slowly improving till Feb 2007 then relapsed (HE is a relapsing remitting conditions). March 2007 Whole Body scan was clear. March 2008 relapsed again this time started having breathing problems as well. Sept 2008 PET scan showed hot spot in Neck. Nov 2008 Modified Right sided Neck Dissection, Dec 2008 200 mci RAI whole body scan showed uptake all over the throat and into the chest. April 2009 HE became much worse developed right sided paralysis. July 2009 started monthly treatments with Steroids to control the HE. Sept 2009 200mci RAI with Thyrogen and Lithium whole body scan showed uptake in Throat was much larger then Dec but chest seemed clear. January 2010 CT and ultra sound clear, TG is still elevated and will do repeat CT, PET and Whole body scans in April (Dr wants to give RAI 6 months to work).


Oh, my goodness. Firstly, I cannot thank you enough for sharing your story and secondly, welcome to this board/

Thank God the ultra*sound is clear. You have been through hell and back. God bless you and I will keep you in prayer for all good things.

Do you still have to be on the prednisone?


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## chopper

Wow! Thank you very much for that story. All the years being around these boards, I do not believe we have ever had a single confirmed case of HE. If you don't mind sharing, I have tons of questions. As you well know there is so very little known about HE compared to other disorders and whatever you can publish here for others to see forever, will ultimately be very, very helpful to alot of people, and maybe even some doctors.

My first question if you don't mind, did you have extremely high TPO and TG antibodies and if so, do you recall how high they were?


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## [email protected]

Yes I still have to take the prednisone 1000mg IV a month. After a few months this is not as effective so they give me the 3 day treatment. When I get to the point I need the cane to walk they give me the 3 days. My Doctor tells me I will have to be on this for the rest of my life. I am hoping if we ever the ride of the cancer it might go away.

As to my TPO I do not know. I do know that my TG was and is still high. I belive it as gone as high as 1300 and is currently in the 30 following my last RAI. But at this point it should be 0.


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## Andros

[email protected] said:


> Yes I still have to take the prednisone 1000mg IV a month. After a few months this is not as effective so they give me the 3 day treatment. When I get to the point I need the cane to walk they give me the 3 days. My Doctor tells me I will have to be on this for the rest of my life. I am hoping if we ever the ride of the cancer it might go away.
> 
> As to my TPO I do not know. I do know that my TG was and is still high. I belive it as gone as high as 1300 and is currently in the 30 following my last RAI. But at this point it should be 0.


You are so brave and quite the fighter!! The cancer "is" going to go away. We will "will" it away. I also have you on my prayer list.

We certainly appreciate you being here. We all have a lot to learn from your personal experience with Hashimoto's Encephalitis and "other" issues. I personally believe that helping others is very therapeutic and healing.


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## nirajiitm

Hi
Osh * Thanks for the details! I certainly look upto you. I do not think I have suffered even a bit of as much as you may have. And thanks for the clarifications! They do make a lot of sense to me.

Well. In My case * This has got to be embarrassing. It turns out my TPO antibodies is not 16430 as was mentioned but are around 450Ui/ml (Normal Range < 34) (which is still high). Actually had got it tested from two places on the same day * a private lab and a big medical institute in India. 16400 was the number given by the lab but the med institute results which came 4 days back says it is 450. I would go with the latter

The doctors are quite confident of the HE diagnosis (given my symptoms + EEG slowing + high TPO). I have been started on a low dose 50 mg of prednisone. The good news is that in the 4 first days a couple of my most troubling symptoms * headache and sudden onset of fatigue have not appeared again. The other symptoms (coordination, speech problems, floaters, facial expressions, drooping eyelids etc) continue as they were. But I am hopeful even they may subside.

I just hope the diagnosis is true. Because if it is not I may have to again start running behind doctors to understand what's going on. Because most other possible options have already been explored just wish this diagnosis is confirmed

Thanks!


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## bgirl130

I was just diagnosed with Hashimoto's Encephalopathy.

I have had Hashimoto's Thyroiditis for the last ten years. About a year ago I began to have vague progressive symptoms in the following order:
Confusion
Forgetfulness
Light Sensitivity
Floaters
Transient Vision loss in the right eye
Swallowing Difficulties
Speech Issues 
Headaches in the base of my shull and behind my right eye
Shortness of Breath
Facial Numbness
Mild Facial Drooping (eyelid, lower lip)
Right sided weakness
Right sided numbness
Tremors in the Right Hand
Symptoms my mother thought was a stroke
Loss of feeling from my lip to my mid chest
Heat Intolerance
Right Orbital Cellulitus (Behind my right eye)
Seizure "like" behavior

When they first began my doc told me it was stress and wanted to put me on antidepressants. My symptoms got worse and I endured everything from blood work, CT's, MRI's, EEG's, Spinal Taps etc.. Finally, I insisted that I see a neurologist who realized that my antibody level was 2187 and I had an abnormal EEG. I also demanded that they remove the thyroid because of its size. The surgeon was convinced he would only take half. I insisted that it needed to be removed because something just wasn't right. When the surgeon got in there the antibodies had destroyed the thyroid so bad that it had to be dissected out of my throat&#8230;.which landed me in the ICU. Afterwards, I was placed on steroids for the swelling and all of my symptoms had gone. Two weeks later they removed the steroids and all of my symptoms have returned. I am currently waiting to restart the steroids again after clearance from the endocrinologist.
&#8230;.My symptoms also improve when I lay down. Any time I get up to exert myself or if I get stressed they seem to be worse.

My advice to anyone who thinks they may have H.E. is to be forceful in advocating for yourself. I was dismissed many times as being overworked and under stress. Only after my eye swelled shut and I was having symptoms of stokes and seizures did someone take me seriously.

Get a really good neurologist who is familiar with this condition. I have both an Endocrinologist and a Neurologist who are working together.

Do your own research. I am going to begin the steroids but I am also changing my diet to gluten free.

Take care of yourself and get a good support system. This has been the scariest year of my life. I was told more than once to get my affairs in order. As a thirty year old single mother of an autistic child, giving up just isn't an option.
I hope you find the answers you're looking for&#8230;.Good luck!


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## Andros

bgirl130 said:


> I was just diagnosed with Hashimoto's Encephalopathy.
> 
> I have had Hashimoto's Thyroiditis for the last ten years. About a year ago I began to have vague progressive symptoms in the following order:
> Confusion
> Forgetfulness
> Light Sensitivity
> Floaters
> Transient Vision loss in the right eye
> Swallowing Difficulties
> Speech Issues
> Headaches in the base of my shull and behind my right eye
> Shortness of Breath
> Facial Numbness
> Mild Facial Drooping (eyelid, lower lip)
> Right sided weakness
> Right sided numbness
> Tremors in the Right Hand
> Symptoms my mother thought was a stroke
> Loss of feeling from my lip to my mid chest
> Heat Intolerance
> Right Orbital Cellulitus (Behind my right eye)
> Seizure "like" behavior
> 
> When they first began my doc told me it was stress and wanted to put me on antidepressants. My symptoms got worse and I endured everything from blood work, CT's, MRI's, EEG's, Spinal Taps etc.. Finally, I insisted that I see a neurologist who realized that my antibody level was 2187 and I had an abnormal EEG. I also demanded that they remove the thyroid because of its size. The surgeon was convinced he would only take half. I insisted that it needed to be removed because something just wasn't right. When the surgeon got in there the antibodies had destroyed the thyroid so bad that it had to be dissected out of my throat&#8230;.which landed me in the ICU. Afterwards, I was placed on steroids for the swelling and all of my symptoms had gone. Two weeks later they removed the steroids and all of my symptoms have returned. I am currently waiting to restart the steroids again after clearance from the endocrinologist.
> &#8230;.My symptoms also improve when I lay down. Any time I get up to exert myself or if I get stressed they seem to be worse.
> 
> My advice to anyone who thinks they may have H.E. is to be forceful in advocating for yourself. I was dismissed many times as being overworked and under stress. Only after my eye swelled shut and I was having symptoms of stokes and seizures did someone take me seriously.
> 
> Get a really good neurologist who is familiar with this condition. I have both an Endocrinologist and a Neurologist who are working together.
> 
> Do your own research. I am going to begin the steroids but I am also changing my diet to gluten free.
> 
> Take care of yourself and get a good support system. This has been the scariest year of my life. I was told more than once to get my affairs in order. As a thirty year old single mother of an autistic child, giving up just isn't an option.
> I hope you find the answers you're looking for&#8230;.Good luck!


Good grief; I was just telling another poster about this this week as her sis had a droopy face................................and a host of other symptoms that made me think Hashimoto's Encephalopathy had to be ruled out or in.

OMG!! You poor darlin'! Well, thank you so much for sharing your story and welcome to our little board here.

I am saying prayers, white light, good vibes and all good things for you even though I just met you. It does not matter; the man(or woman) upstairs hears!

You are lucky you did not die and we are lucky to have you here!hugs1


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## bgirl130

Thank you! I'm counting my blessings.


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## CheleRose

Wow....I have a question, I am off to a new endo tomorrow, as I am starting to get even worse. I have every one of those symptoms (except the eye swelling, I have had lip swelling) and more, however, my numbness and right side problems are sporadic, and also my body refuses to allow me to have any stress or happy excitement, it shuts down my thinking and numbs the right side of my body or I get migraines (which are new)....were your symptoms constant? I had an EEG about a year ago which was clear. Does this always show up on that? I test positive for ALL antibodies, Hashi and Graves and my docs have no clue what to do with me, but I am having a tough time breathing again (like air hunger sort of) and feel like I am walking on wobbly clouds or something....very strange.

Thanks so much for sharing your stories!


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## bgirl130

I am experiencing everything you just described except I had an abnormal EEG. It is not constant. Sometimes I am fine, then I feel like my heads on fire (like in tracks deep in my head) and I have eye issues, and sometimes I look like I am having a stroke. It seems to be worse with stress, heat, or if I am tired. Numbness will be a foot today, the whole right side tomorrow, and if I get upset it is from my lip to my mid chest. Air hunger, yawning, and a feeling of choking is common. My antibodies remain high. To be honest it's really scary because you feel like you could just give out at any time. I printed out everything on H.E., a list of my symptoms, and a copy of my labs and gave them to my neurologist....which helped me get the proper diagnosis. What helped even more was that after my thyroidectomy I ended up on steroids because my throat was swollen shut. Two days on steroids and every one of my symptoms disappeared. After doing the research I have started the gluten free diet, and I want to start Selenium. I am scheduled to start steroids but my kidneys are acting up so I am waiting and hoping things don't get worse before I can be treated. Also, vertigo is a huge issue for me.....I feel like I am walking sideways sometimes or like someone is shaking the world beneath me when I try to drive. It is very frustrating to say the least.


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## CheleRose

bgirl, thank you so very much! I will keep you posted on what I learn tomorrow as well. My Hashi antibodies lowered after getting my vitamin D higher ( was at 5 now 24). I am sure I will get new blood tests tomorrow, so let's see if that was a fluke. Have you checked your D?

Phil, have you ever checked into this one? I mean sheesh, this is just terrible what we all suffer through.

Hang in there, I am sorry about your kidney's! You sure are going through a lot.

Chele


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## CA-Lynn

Wow - what a history!

I wonder if it wouldn't be worth tracking down a good neuroendocrinologist, perhaps at a major medical university. If you haven't done so yet, just google the terms "neuroendocrinologist California" and you should be able to pull up a lot of info.

Good luck to you.

Lynn


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## CheleRose

Lynn,

That is a great idea!

Chele


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