# Anti-Thyroid at 1890



## jeff reid (Jan 31, 2014)

I have several questions regarding test results that I received. First, my neurologist ordered an anti-thyroid test that came back at 1890 (normal at 0 - 34). I have been on thyroid replacement for some 10 years with the last test for TSH at around 4.5. I mentioned the high number to my doc who said the only thing of import was TSH. When I pressed, he made me believe that he never heard of an anti-thyroid test. Is there anything to be achieved by pursuing this?

Second, my neurologist has yet to personally review things with me but his assistant let me know that I've been diagnosed with small fiber neuropathy, hashimotos, porphyria and has sent my file to a mitochondrial hospital in D.C. for acceptance. Does anyone know how these things might relate? And why would a neurologist order a anti-thyroid test ?

Thank you for your time,

Jeff


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## Andros (Aug 26, 2009)

TPO Ab
Mild to moderately elevated levels of thyroid antibodies may be found in a variety of thyroid and autoimmune disorders, such as thyroid cancer, Type 1 diabetes, rheumatoid arthritis, pernicious anemia, and autoimmune collagen vascular diseases. Significantly increased concentrations most frequently indicate thyroid autoimmune diseases such as Hashimoto thyroiditis and Graves disease.
http://labtestsonline.org/understanding/analytes/thyroid-antibodies/tab/test
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Substances not found in normal serum (scroll down to autoantibodies)
http://www.thyroidmanager.org/chapter/evaluation-of-thyroid-function-in-health-and-disease/
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TPO and thyroglobulin
http://onlinelibrary.wiley.com/doi/10.1111/j.1699-0463.1994.tb04888.x/abstract
http://www.wikigenes.org/e/gene/e/7173.html
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Understanding Thyroglobulin Ab.
http://www.labtestsonline.org/understanding/analytes/thyroglobulin/test.html
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Thyroglobulin Ab and cancer
http://qjmed.oxfordjournals.org/content/59/2/429.full.pdf
(Copy and paste into your browser)

With TPO that high, I urge you to get an ultra-sound of your thyroid plus lab tests for Thyroglobulin Ab and Thyroglobulin.

Cancer is a strong consideration which must be looked into.

Am providing some information which I hope is useful.

When you read the links above, you will see that the presence of TPO Ab is only "suggestive" and must be further investigated.

Please let us know what you decide to do.

And welcome to the board.


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## jeff reid (Jan 31, 2014)

Thanks for the info. Sorry I'm so slow to respond but really out of it lately. I just left my neurologist who says he wants to start me on something called ivig for hashimatos encephalopathy while still moving ahead with plans for mitochondrial testing. Have you any experience with ivig?

Thanks, jeff


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## joplin1975 (Jul 21, 2011)

Maybe this thread would help? http://www.inspire.com/groups/encephalitis-global/discussion/hoshimoto-encephalitis-and-ivig/

Are you only being treated by a neurologist? Has someone with specific thyroid expertise not been brought into the mix?


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## jeff reid (Jan 31, 2014)

I have a GP still described as above ( I was hoping to get him to read some literature on TPO, Hashimotos,ect, but to no avail) and still clinging to the TSH as the end all for all. My youngest had his first TSH register 20 and I visited an endocrinologist where I learned a bit about the tests. My insurance doesn't require a referral so I may just schedule an appointment.

However, I learned a bit about the Hashimotos encephalopathy and it seems to be a autoimmune encephalopathy that is called hashimotos for the only reason that it usually presents with an elevated TPO. I just had a neurologist until last week. Now I have added a cardiologist, neurosurgeon,

gastrologist and what the heck give me an endo guy so they play as a foursome and discuss my case.

Thanks for the info, Jeff


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## Andros (Aug 26, 2009)

No ultra-sound? If not, it could be a serious omission.


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## jeff reid (Jan 31, 2014)

Well someone did mention an ultrasound but I was just waiting for the results of an echo cardiogram that I thought might cover that area.

I notice you have Lupus. I feel for you as I read up on Lupus a while ago. The reason I read up on it is because in 2008 I had a hematologist, or maybe it was an oncologist, due a bunch of tests to find a reason for why I had two TIAs and a pulmonary embolism. They couldn't find anything except a lupus anticoagulant which they later discounted. Does lupus fit into the thyroid picture ?

Thanks, Jeff


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## bigfoot (May 13, 2011)

I'm actually totally surprised your neurologist even knew about Hashimoto's Encephalopathy, its treatment, and how to pursue it. Kudos to him/her! IMHO, from the limited reading I've done, it's very under-diagnosed, likely often mis-diagnosed, and not many docs are familiar with it. The few case studies and accounts make for some interesting reading. You might see if you notice any parallels between those cases and what you are going through. My understanding is that they treat H.E. (aka "SREAT") with a simple combination of prednisone and thyroid medication (typically T4, but I bet a combo of T4/T3 would work), trying to work it into remission. Longer-term, some folks have to wind up on a on small maintenance dose of prednisone to keep things in check and prevent flare-ups.

At times I have wondered if I indeed have H.E., as I now take a small (5mg) amount of prednisone (and have before) along with my thyroid medications, and that usually seems to help quite a bit with signs & symptoms. So far, no docs have mentioned it or been open to its suggestion. And I've been to a neurologist, cardiologist, gastroenterologist, etc. In fact, I only found out that prednisone seemed to help after taking it for a different autoimmune G.I. condition, and all of a sudden I was feeling great, like my old self. I don't know if they have tried using Low Dose Naltrexone (aka "LDN") for H.E., but that might be worth looking into, too. It is supposed to help calm various autoimmune issues.

Your one doctor thinking that TSH is the end-all, be-all test is a big, huge, flashing red neon sign. You absolutely need to check TSH, Free T3, and Free T4 at a bare minimum to get a picture of what your thyroid hormones are doing. Run, don't walk, away from this doctor if you can help it! Or, if you really like them, rely on other more knowledgeable doc(s) for treatment and monitoring of your thyroid issues. The TPO antibodies and Thryoglobulin antibodies are important to check, as is Thyroid Stimulating Immunoglobulin or "TSI" (not the same as TSH). Reverse T3 is a hotly-debated topic, but might be worth testing, too. And a thyroid ultrasound is crucial in getting a baseline of where you stand. Anything less than all of this, and you don't have the pieces of the puzzle.

Ultimately, I would consult with the specialists to get an idea of what they think, but keep in mind that if it *is* H.E./SREAT, they may not be familiar with it. Your neurologist might suggest an EEG of the brain and/or an MRI, or even neuropsych. testing, but from what I've read, those aren't really accurate for diagnosing H.E., and it can be missed. Since treatment is relatively straightforward, it almost begs the question of "why not try it?" instead of going through years of testing and remaining symptomatic. I suppose it depends on how badly this is affecting your day-to-day activities and functioning.

Do keep up updated and good luck with the appts! hugs3


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## jeff reid (Jan 31, 2014)

Wow ! Thanks for the info. I really appreciate your help. I had an MRI today and really looking forward to the results. I so hope it is H.E. , as H.E. seems to reverse all symptoms upon correction, but my issues started around 10 years ago and H.E. shows itself with usually an acute onset. I don't want to look at the mitochondrial possibility as some of my symptoms would portend a rather poor prognosis.

Thanks for pointing out that my neurologist is thinking out of the box. I'm in pretty bad shape which caused me to begin thinking very negatively about the care I've gotten but, after looking at whats occurred from a third person perspective, it really has been pretty darn good.

My first question for the neurologist would center on why he wants to start treatment for H.E. with IVIG instead of t3,t4 and steroids.

Thanks again, Jeff


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## bigfoot (May 13, 2011)

Yep, I think that would be a great question for him.  Perhaps this is a newer treatment for H.E. that has cropped up recently.


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## Andros (Aug 26, 2009)

While I know little about this, I want you to know I am reading the posts and that I care........................; and thank God for our friend bigfoot!! He has been through the gamut so he knows!


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