# Question about fever in thyroid disease



## jumpinjiminy (Nov 27, 2010)

What causes it? I've searched and searched online and all I can find is that it's part of thyroid disease. But nowhere does anyone go into what causes the fever.

I'm currently on my second day of a low dose steroid treatment, but the fever has only come down very slightly since yesterday (which is the hottest it's run in quite some time).

I'd like to find out if fever from thyroid disease will respond to steroids or not.

This fever doesn't respond to anything so far, except a very slight reduction with Tylenol or aspirin.


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## Andros (Aug 26, 2009)

jumpinjiminy said:


> What causes it? I've searched and searched online and all I can find is that it's part of thyroid disease. But nowhere does anyone go into what causes the fever.
> 
> I'm currently on my second day of a low dose steroid treatment, but the fever has only come down very slightly since yesterday (which is the hottest it's run in quite some time).
> 
> ...


Since your history is elsewhere's and memory does not serve; I need to know are you hypo or hyper? Are you on antithryoid med or thyroxine replacement? And, why are you on steroids?


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## tina (Sep 17, 2010)

For about a year before I was dx with Graves my "normal" temp was around 99.0. Not really a fever per say but just slightly warmer than the average person. Within the last few months before my surgery, I would be so hot that it woudl drive me crazy. My endo said that it is a normal part of thyroid disease, especially Graves, since my body is running at a faster pace than a normal person without thyroid issues. Hope that helps?


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## jumpinjiminy (Nov 27, 2010)

I am suspected to have hashi's encephalopathy, with normal thyroid tests so far (free T's and cortisol results yet to come in). I'm assuming with the TPOab's, there's probably some thyroid damage going on as well.

I do have almost all the symptoms of hypothyroid, with blasts of hyperthyroid mixed in here and there. Although with time, I can say the hyper blasts feel more like my normal self than over the top nervous energy like they used to. And the hypo times feel so much more run down than they used to.

Sputtering along . . .

Being treated right now for the brain inflammation, fever and fatigue with steroids pack as a trial to see if it helps anything. And I suspect there might be some worn out adrenal gland issues to go along with it all. I could tell a difference in my energy level and ability to focus within hours of starting the steroids. But the fever is taking a little longer. It's only been a couple of days. I probably just need to give it a few more to get fully into my system.


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## Andros (Aug 26, 2009)

jumpinjiminy said:


> I am suspected to have hashi's encephalopathy, with normal thyroid tests so far (free T's and cortisol results yet to come in). I'm assuming with the TPOab's, there's probably some thyroid damage going on as well.
> 
> I do have almost all the symptoms of hypothyroid, with blasts of hyperthyroid mixed in here and there. Although with time, I can say the hyper blasts feel more like my normal self than over the top nervous energy like they used to. And the hypo times feel so much more run down than they used to.
> 
> ...


Thank you so very much for refreshing my memory. As soon as I saw HE, I said, "oh,yeah!" We have a lot of posters and I do try to track but.........???

I truly think that w/ this on-going fever thing that it could be very wise to alert your doctor. After all, your immune system is being depressed by the steroid and he/she may want to run a WBC on you.

Please let us know and I apologize for my poor memory! As you know, I am very interested in your circumstances "and you!"

Hugs,


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## jumpinjiminy (Nov 27, 2010)

Thanks, Andros. My WBCs have tested repeatedly in the normal range, as have all other typical blood labs on the cbc w/diff. He has me on a low dose (24 mg first day dropping by 4mg daily). I don't think it's high enough to suppress immune system activity. But it was enough to give me a little energy boost.

The treatment for HE calls for much higher doses of steroids.


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## lainey (Aug 26, 2010)

Just curious---has anyone tested you for Lyme disease??

http://www.canlyme.com/patsymptoms.html


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## GD Women (Mar 5, 2007)

"I'd like to find out if fever from thyroid disease will respond to steroids or not"

How high is high? And what time of day was it taken?

There are many causes for fever. Even stress can cause fever.

Some of us it is normal to have a slight fever or low fever. Its just natural for us.


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## jumpinjiminy (Nov 27, 2010)

They have tested me for almost everything, including Lyme's. This is now officially a fever of unknown origin. I've had it for at least three years. It comes and goes. It runs between 99 and 101. These last three days it's been over 100. It appears to be a pattern right before my cycle starts, but I'm also having a new flare up too. This fever started over two weeks ago, after having been gone (and neuro symptoms improved immensely) for almost a month straight.

It was just a couple of weeks ago that antiTPO antibodies were found. I think the number is around 300 or so.

I take the temp every time my face starts feeling flushed and hot. It happens all day and night. It's a spiky fever, jumping up and down, but always elevated these last two weeks. It's usually lower in the mornings, but still elevated above normal. When I have no fever, my morning temp is usually lower than normal.


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## lainey (Aug 26, 2010)

Okay, so the good news is, if you have had it this long and an underlying cause has not been found, the cause is usually considered benign:

http://emedicine.medscape.com/article/217675-followup

I really don't find much research that supports fevers like this as part of thyroiditis.

That said, the prednisone should take care of Hashimotos' encephalopathy if that is indeed what you have.


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## CA-Lynn (Apr 29, 2010)

Many different autoimmune diseases are characterized by low grade fevers, fatigue, flu-like symptoms, etc. It seems to go with the territory.

Still, I could go for a nice walk and come back with a temp of 99, so no biggie.


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## jumpinjiminy (Nov 27, 2010)

lainey said:


> Okay, so the good news is, if you have had it this long and an underlying cause has not been found, the cause is usually considered benign:
> 
> http://emedicine.medscape.com/article/217675-followup
> 
> ...


It was a low dose trial. It's not intended to take care of the HE at this point. It's to see if my energy level improves and if some of the symptoms start going away.

It's helped the fatigue. But I don't think it's high enough of a dose to help the rest, is what I'm guessing. HE could be the cause of the fever. There is definitely something autoimmune going on.


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## GD Women (Mar 5, 2007)

Several types of thyroiditis exist, and the treatment is different for each. Some do carry a slight fever. I have found quite a few sits that backs this up.

The site lainey posted is very good.


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## jumpinjiminy (Nov 27, 2010)

The concern is, they suspect whatever is causing the fever is also causing the neuro symptoms. They were pretty severe. I should have gone to the ER. Maybe some treatment would have been started back then instead of waiting four months to see what happened.

I'm starting to feel a little down about all of this, as I sit here and worry about how much of my mental and physical capacity will be left before somebody attacks this thing with some heavy hitters. How much of this will be reversible if they let it continue to go on?

It doesn't appear this little trial is going to work on the inflammation or fever. It did bring up my energy level, but I was hoping for a bit more of an effect than that - like knocking out the fever and inflammation.

I would like it gone for good. :sad0047: This is the closest I've been to depressed in a long time. Maybe it's just one of those precycle hormone swings and will be gone when I get up in the morning.


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## lainey (Aug 26, 2010)

>>It was a low dose trial. It's not intended to take care of the HE at this point. It's to see if my energy level improves and if some of the symptoms start going away.

It's helped the fatigue. But I don't think it's high enough of a dose to help the rest, is what I'm guessing.<<

It's common to prescribe this as a "pack" where you take a high dose for several days and then taper off. Or, you can do a continuous low dose and then taper off.

Steroids are for inflammation and to calm immune reactions, not for fatigue. Anyone who has taken them can tell you that the extra "energy" you can get from them as a side effect is insidious and uncontrollable.

How much of steroids and for how long? You're making it sound like you're done already when you only started a couple of days ago. While they do act quickly, how could they have solved the problem yet?


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## Andros (Aug 26, 2009)

jumpinjiminy said:


> It was a low dose trial. It's not intended to take care of the HE at this point. It's to see if my energy level improves and if some of the symptoms start going away.
> 
> It's helped the fatigue. But I don't think it's high enough of a dose to help the rest, is what I'm guessing. HE could be the cause of the fever. There is definitely something autoimmune going on.


If you have HE (Hashimoto's Encephalitis), why is the doctor not treating it aggressively?

As per all credible articles I have read?

http://neuro.psychiatryonline.org/cgi/content/abstract/18/1/14

http://thyroid.about.com/od/relatedconditions1/a/sreat.htm


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## jumpinjiminy (Nov 27, 2010)

Apparently my symptoms and the positive TPO antibody test isn't enough for the neuro to bring out the heavy artillery. The BIG flare is over, and so is the chance to get a positive LP.

The flares I'm having now are not as debilitating. The neuro won't treat it without more evidence, preferably wait six months, redo the EEG and see if it comes up abnormal yet. He offered a referral to a neurologist specializing in immunology, and I've been waiting since before turkey day for them to call me back with that referral number. I've called their office three times asking for it.

The GP is the one who prescribed the steroids - starting with 24 mg dropping down to 4mg in a one week pack. I have one refill on it. It was a trial. That's all. It wasn't intended to treat the HE except in the sense that I'm having a lower level flare up. The hope was, a low level flare up, a low dose might be all that is needed He just wants to get me feeling better. So do I.

It's not enough, and is mighty disappointing.

As to why they aren't treating it aggressively, it's because the neuro isn't convinced 100% that's what I have. It's enough to make me want to scream. Communications with this doc have been extremely frustrating. He doesn't even know all the problems I'm having because he wants to explain some benign possibility for the vertigo while I'm trying to tell him there are so many more things going on. Then he gets irritated if I try to tell him more of what's going on. See? Can't give him all the info. But he's in charge of making that call.

I think my GP is getting irritated. It's been four months since the big blow up, although I suspect this has been brewing in my brain for several years now at least. I'm getting irritated. How long before the demyelination that happened this summer is permanent? How much mental function is permanently gone now? I have no clue. But I want it stopped. NOW. This is so frustrating, I could just cry. Wait, wait, wait, wait, wait, and more wait. I don't want to wait six months to see if my EEG comes up abnormal. Who wants to wait until they have more brain damage to get treated?!


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## Andros (Aug 26, 2009)

jumpinjiminy said:


> Apparently my symptoms and the positive TPO antibody test isn't enough for the neuro to bring out the heavy artillery. The BIG flare is over, and so is the chance to get a positive LP.
> 
> The flares I'm having now are not as debilitating. The neuro won't treat it without more evidence, preferably wait six months, redo the EEG and see if it comes up abnormal yet. He offered a referral to a neurologist specializing in immunology, and I've been waiting since before turkey day for them to call me back with that referral number. I've called their office three times asking for it.
> 
> ...


Have you been through all of these tests?

Misdiagnosis is Standard

What is of particular concern is that the experts found that ALL PATIENTS had originally been misdiagnosed. For example: 
•Viral encephalitis -- 25%, 
•Degenerative dementia -- 20% 
•Creutzfeldt-Jakob disease -- 15% (Creutzfeldt-Jakob disease is a rare, degenerative, invariably fatal brain disorder, sometimes erroneously referred to as "Mad Cow Disease" in humans) 
Laboratory and Test Abnormalities in Hashimoto's Encephalopathy/SREAT

A number of test abnormalities were observed, including: 
•Increased liver enzyme levels -- 55% 
•Increased thyroid-stimulating hormone (TSH) levels -- 55% 
•Increased erythrocyte sedimentation rate ("sed rate") -- 25% 
•Cerebrospinal fluid abnormalities suggesting inflammation -- 25% 
•Magnetic resonance imaging abnormalities consistent with encephalopathy -- 26%


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## jumpinjiminy (Nov 27, 2010)

I've had everything but the spinal tap.

VNG - slight abnormalities
EEG - normal
BAER - slight abnormalities on the symptomatic side
MRI brain and c-spine - normal
All blood labs normal except: complement 3 was 3 points below normal range
TPOab 5x higher than normal range
Opthalamologic exam - normal
Visual field test - normal
EKG - heart rate and blood pressure variability high and low all within normal range
Nerve conduction tests - normal in upper extremities

That's all they've found, except he noted tremulousness of the hands and head, brisk deep tendon reflexes, myoclonus of the head and face, mood swings, anxiety, and mild proximal weakness of the LE which was asymmetric.

I have not been cognitive tested and am wondering if that would help. But to be honest, I'm sick of getting tested and just want treated at this point.

He says he's not seeing an organic brain problem. My body is going crazy inside, but it's not showing enough outside for him to make a diagnosis with the testing that has been done.

Had I gone to the ER when I was suffering the ataxia and extreme weakness/muscle fatigue, fasciculations, vertigo, nausea, and aphasia, those things would have been documented as objective signs. But I didn't, so they weren't, and now he doesn't have enough 'objective clinical evidence' to call it anything based on the TPO tests.

Falling through the cracks. And my fear is I will be suffering from dementia long before any of these tests are convincing enough to start taking this seriously.


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## lainey (Aug 26, 2010)

>>Had I gone to the ER when I was suffering the ataxia and extreme weakness/muscle fatigue, fasciculations, vertigo, nausea, and aphasia, those things would have been documented as objective signs. But I didn't, so they weren't, and now he doesn't have enough 'objective clinical evidence' to call it anything based on the TPO tests.<<

Keep in mind that TPO counts can extend well into the thousands--so there is "elevated" and then there is "high" when talking about these numbers. It is assumed that to some extent the level of autoimmune activity has a direct relationship to the level of antibodies.

Well yes, of course you realize that the doctors would want to make a diagnosis based on what they themselves have observed, not just what a patient reports, because as always there is a certain amount of conjecture involved.

Unless of course you are a physician.

Ergo, the lack of aggressive treatment.

A spinal tap actually would be revealing according to this article: http://neuro.psychiatryonline.org/cgi/content/abstract/18/1/14

This article gives a good synopsis of the treatment, length of time and time to improved outcome: http://www.medscape.com/viewarticle/410552_3

A week long pre-pack at the dose you described might result in minor improvement, but a longer term course at a higher dose would probably have more effect.


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## jumpinjiminy (Nov 27, 2010)

I guess I'll have to wait until I have dementia before all the objective clinical evidence makes an appearance then. Because it isn't here yet.

The only big flare up I had was precipitated by a soak in a sauna, which caused the inflammation to go absolutely wild in my CNS. I don't care to repeat the experience so they have enough inflammation to show on a spinal tap.

It should have been done in the very beginning. But because neuros have a habit of 'wait and see', that time has passed and it would probably not show anything at this level.

There isn't enough inflammation. All I have right now is some fever, paresthesias, mild muscle twitching and cramping, blurring vision, and intermittent loss of hearing. Oh, and memory trouble with brain fog.

The only thing they have to go on is what I report at this time. Like I said, I will be completely retarded before they have the clues they need to treat.


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## lavender (Jul 13, 2010)

Wow, it sure sounds like you are going through a lot. I know it can be tempting to give up when we feel awful and the docs don't seem able to help us. But, I think it is important to keep fighting and speaking up for our needs. I like the sound of the neurologist specializing in immunology, and I hope you can get the referral soon. Sounds like this is your best bet for someone who can help you sort this out.

I thought it was interesting that you said your inflammation went wild after a soak in a sauna. Even though a soak in a warm tub does wonders for my fibro, I feel awful after sitting in a hot tub. It seems to bring on this whole cascade of symptoms, and I no longer use them. Seems like I am goldilocks, This water is too cold, this water is too hot, but this one is just right.

Sending you a BIG HUG!


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## jumpinjiminy (Nov 27, 2010)

Thanks for the cyberhug. I do need one today. I don't know why he's dragging his feet on this referral.

Yes, the sauna. The week before the sauna the only neuro symptoms (that I was aware of then) were paresthesias. They had almost completely disappeared the day before the sauna. Five hours after the sauna, it felt like I had icy/hot all over my legs and feet. By the next evening my legs felt like they had 20lb weights strapped above the knees and like my knees would buckle after standing for 15 minutes. By the next day I was walking like I was drunk, had lost coordination of my body in space, and more. The whole thing started this cascade of neurological problems that are still coming and going today. When I have the fever, they're more prominent and might spread into new areas. When I have no fever, they start disappearing.

I'm not sure what happened with the heat, but I don't care to go back in and get it revved up like that again. I'm still kicking myself for not going to the ER then. Instead, I was referred to the neurologist (my fault, I was having a panic attack and couldn't explain everything to the nurse without bursting into tears) and waited four days to be seen. By then, most of the obvious movement issues had resolved to the point nobody else could see it, but inside I was still struggling to maintain balance and coordination. So my neuro exam came out normal.


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## lavender (Jul 13, 2010)

I noticed problems with the sauna about 3 minutes after leaving one. I went out to meet with some friends, and got instantaneously fatigued. Could barely keep my eyes open to drive home. Felt awful with overwhelming muscle pain for days until I got in to see my massage therapist who worked it all out. I was in the sauna after a water aerobics class so I could never be sure if it was the sauna or the class, but when I have tried to get into a sauna since then, I get the same overwhelming fatigue and racing heart. Someone told me I needed cooler water. Goldilocks am I.

I know what it's like to not have docs believe you. It seems like when I am in their office, suddenly my fever disappears and my heart rate goes down. I have actually tried to make myself sicker the morning before I go to see a doc just so they can see what I am going through at home. Unfortunately, even when I have these symptoms my doc has blown me off. So, I am trying to get in to a new doc who will listen to me and not just blow me off as some mental patient.

I know I avoid the ER at every cost. I was totally shocked when I went this spring and they kept me. I called my doc that morning, and although they suggested I go, they thought it was nothing big, and even told me to drive myself! Boy, am I glad I called the squad then! I have felt bad for months myself and really have no idea how to know if something is bad enough to need that kind of emergency care.

So, stop kicking yourself! It doesn't help! We all do the best we can as we are learning how to take better care of ourselves and navigate the medical system.


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## jumpinjiminy (Nov 27, 2010)

Funny thing, I was in the sauna a half a dozen other times this year and never had a reaction like that. I did feel fatigue afterward, but thought of it as relaxed. Lol. I slept really good after a sauna, something that was not easy for me normally. And it did wonders for all of the tight muscles.

I will still kick myself for not going to the ER. Although, when I went to the university hospital ER in the big city for the flashing lights and eye pain, they sort of patted me on the back and sent me home anyway too. Not much good it did that time either.

A person can really suffer with this nervous system stuff before a neurology exam shows up abnormal. Really. There is so much that goes on under the surface they can't detect with their methods. It's quite aggravating.

My vision is so blurred to day. I don't think it's ever been this bad for this long. It's been blurred for a couple of hours to the point where I could hardly read, but never for an entire day in both eyes.


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## Andros (Aug 26, 2009)

jumpinjiminy said:


> I guess I'll have to wait until I have dementia before all the objective clinical evidence makes an appearance then. Because it isn't here yet.
> 
> The only big flare up I had was precipitated by a soak in a sauna, which caused the inflammation to go absolutely wild in my CNS. I don't care to repeat the experience so they have enough inflammation to show on a spinal tap.
> 
> ...


I truly feel awful about this. I know you need medical intervention and a definite diagnosis before that can happen.

Not happy w/ the "wait and see" attitude. Not at all!

Sending prayers and hugs,


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## jumpinjiminy (Nov 27, 2010)

Heh. It's too bad prednisone isn't a black market drug. Then there wouldn't be a problem.

:tongue0013:


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## jumpinjiminy (Nov 27, 2010)

Wait a minute. The fever dropped tonight all of a sudden. I think it might be working finally.

hugs4


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