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Hashimoto's Encephalopathy?


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I've had severe hashimotos since I was 16! And suffered from horrendous hives and facial swelling to the point of hospitalization. I used toget hives from a flare now I just loose my mind literally. My hair falls out and I don't know my children's names or where I am, where I'm going or where I've been. In the worst case when my tsh was in the high 60s I could not even speak even though I knew the words in my head. Could read or even find my way out of my own house. Very scary. I never considered it could have been encephalitis but I suppose it possible. Next time I get symptoms I will try Motrin and see if it helps. This could prove the theory at least in my own case. I have a lot of experience with the disorder and treatment but not sure of the relationship to pandas. I can tell you that only the brand name drug works! The generic gives a very inconsistent dose.

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I think my son was tested for thyroid and it was normal but not Dd. its very rare for kid to have thyroid problems but they do happen. Dd is now in full remission. We will be testing again in nov. I'm having my adrenal glands tested as well for some new symptoms I'm having. Interestingly low adrenal causes anxiety and depression....worth checking in the kiddos. I don't have those symptoms but have some funky things going on.

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I've read here and there over the years about a connection between Hashimoto's and mercury toxicity. T.Anna, has your son been tested for heavy metals? Mercury can come from amalgam fillings, fish, and vaccines (15 would certainly be in the window when they got too much mercury in the childhood vaccines). A genetic mutation in the methylation pathways could cause a problem with detox and allow the mercury to build up and wreak havoc.

 

JoyBop, you might also consider being tested for mercury levels. Do you have amalgam fillings? An integrative doctor is the best bet for figuring out whether mercury is an issue for you. It can be hard to detect if you're not detoxing well.

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DS15's test showed the following:

- Complement C4, Serum

45 high (normal range 9-36)

- Antithyroglobulin Ab

Thyroglobulin, Antibody 4.5 high (normal 0.0-0.9)

- Antiotensin-Converting Enzyme

ACE 85 high (normal 12-68)

- Sedimentation Rate-Westergren

50 high (normal 0-15)

- Comement, Total (CH50)

>65 high (normal 22-60)

- Thyroid Pereoxidase (TPO) Ab

32 High (normal 0-26)

 

These results seem to be in line with H.E but DS doesn't have many of the clinical symptoms. His ACE rates are also very elevated as is his SED rate.

 

The irony, he is in better spirits and mood lately. Singing again, but still very stuck in OCD. We will try oral steroids tomorrow to see if it helps. We think that the minocycline was helpful too.

 

T.Anna

DS15

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Mama2alex, I believe that DS has had all heavy metals tested through blood test. We saw an integrative neurologist yesterday and she will be studying his labs. He never ate much fish and doesn't have any fillings, vaccines I was told no longer contained mercury?! But we'll see what she says. I think I can get him to do a urine test, but the stool sample prob won't happen.

 

There have been many kids diagnosed with HE recently, it almost seems as though it was in some way related to the initial PANS. All these are kids who still have severe OCD like DS.

 

I don't really care what they call it, I just want to hear some success stories : )

T.Anna

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If he is 15, then he was vaccinated before the CDC ever announced they were going to phase out the multi-dose vials which contained Thimerosal (mercury). Once they announced in 1999, they did not recall the mercury containing vaccines, but used them up and phased them out over several years. The last of the mercury containing vaccines expired in 2003. Even now, there are still trace amounts in some vaccines and the full amount in the flu shot (unless you ask for the singe dose vial).

 

You can't determine mercury toxicity through a blood test. You need to do a "challenge," which means giving the person a medicine that binds with heavy metals, such as DMSA or DMPS, and then testing the urine. If there are methylation problems, even this test isn't accurate. The methylation defects need to be resolved with supplementation before testing.

 

If you decide to do the urine challenge, most DAN! docs know the right way to do it. I do think it's worth investigating further.

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Yes, she mentioned the DMSA, but she is also very aware about DS's limitations because of OCD and is trying to work around things as much as possible.

 

Unfortunately, we'll have to see what we can do with supplements with things the way they are at the moment. I think it will take more of a comprehensive autoimmune encephalitis protocol to help heal DS (as is evidenced by the elevated SED and ACE numbers).

 

T.Anna

DS15

Edited by T.Anna
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