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does anyone have any recommendations? we are in Northern Virginia. One of my PANS kids has some abnormal thyroid labs. her TSH has been elevated slightly for 6 months or longer.

I am posting this here hoping to find one that is familiar with PANS, as Hashimoto's encephalitis can look at a whole lot like PANDAS.

My kids have been extremely responsive to steriods for their neuro & psych symptoms. They have never been checked for any thyroid antibodies.

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My DDs TSH has been elevated since last fall. All of her other thyroid numbers have been consistently normal (negative for Hashimoto's, celiacs, all ratios normal). The "gold" test you can do is to take his/her basal body temp. For 5-7 days in a row, take the temp under the armpit first thing in the morning, before the child gets out of bed. A normal temp is 1 degree lower when you use under the armpit vs. under the tongue, so normal = 97.6

 

If you're hypothyroid, you often have a morning body temp that's lower than normal. Google for more precise numbers, but it's an easy home test. I did this for my DD and her temp was normal, so it helped me let go of the fear that something was being dismissed by both her LLMD and pediatrician. But of course, I can't let it go entirely. Other glands that can effect TSH are arednals and pituitary. So we did a cortisol test. Quest unfortunately screwed it up. You send in 4 saliva samples, from 8am, 12pm, 4pm and 8pm. They reported all the samples as being taken at 10am. So it ruined the ability to see if DD had a normal curve to her levels. But one of her levels was elevated regardless of what time of day it was taken, so rather than re-do the test, we're trying adrenal support and will re-assess in a few months.

 

My pediatrician had no problem ordering thryoid panel (Hashimotos, celiacs, T3, Reverse T3, T4, TSH, IgA levels). So you may not need to see a specialist unless the panel has concerning results.

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I've seen a lot of posts on thyroid recently and up until now haven't paid much attention. Don't really know much in that area. My daughter's last lab results show her low in Thyroxine T4 Free Direct (normal is .93- 1.60 she is .77). TSH is normal. Should this be addressed? Or is she fine since her TSH is normal?

 

powpow- sorry, don't mean to hijack your thread.

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Hypo/Hyper thyroid could be caused by iodine deficiency. Dr. Brownstein book covers iodine in detail and how it impacts the thyroid. Similar to KPU you need to do a Iodine loading test and collect urine over 6 to 24 hours. Temp upon waking that indicates normal thyroid function should be between 98.2 and 98.8 via mouth. Another indication of thyroid issues is the tongue that appears scallop along edges, slightly swollen.

 

http://www.drbrownstein.com/Iodine-Why-You-Need-It-p/iodine.htm

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I've seen a lot of posts on thyroid recently and up until now haven't paid much attention. Don't really know much in that area. My daughter's last lab results show her low in Thyroxine T4 Free Direct (normal is .93- 1.60 she is .77). TSH is normal. Should this be addressed? Or is she fine since her TSH is normal?

 

powpow- sorry, don't mean to hijack your thread.

lfran is the resident thyroid guru, so hopefully she'll chime in. But my understanding is that TSH stimulates the thyroid to produce more thyroid hormone. This is stored in the body as T4 and then converted into T3 for active use. A low T4 would mean a low storage level. I'm not versed enough to say what a low T4 might mean but you can find a lot of info at stopthethyroidmadness.com

 

In addition to SFMom's comments about iodide, selenium deficiency and B1 deficiency can also effect thryoid function.

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I can post more later but what is the actual tsh number? And do you have any other thyroid labs?

And I've been learning about a mthfr and thyroid connection. Do you have mthfr issues too?

MTHFR has not been checked on this child. Both myself and another daughter (PANS) were normal on that.

 

in Nov TSH was 5.58

January it was 4.63

July it was 4.46

 

so it is getting lower (lab range is 0.5-4.3)

 

it was originally checked because she had fatigue (still does) and she complains of this weird tongue pain, around the edges. She has some definite OCD tendencies , so it is hard to tell if the tongue is something she has focused in on or if it is truly painful.

 

She is 8, very fit and has been treated for PANS (tics and fear) sucessfully with steroids and zithro.

 

tics and fears are barely present now.

 

she also had 5 cavities appear in 6 months! anyone know anything about that?

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Will post more later as en route to work. The standard lab ranges for tsh are considered too high by most mainstream specialists. I always feel lousy unless my tsh is below 2. My doc wants it even lower but 2 is okay by me. This is VERY common. My ds12 is being treated for thyroid to bring his tsh below 2. We r going slow but have noted some interesting improvements on thyroid meds. More later.

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Our Dr. is saying at 2 or below as well. We are currently using a combo of Armour, Iodoral, Selenium, B's for me. My numbers were stuck at around 3, early morning temps were low and tongue was still swollen even after a year of Armour at 60 m.g. We added the Iodoral, Selenium, Bs to help bring the number lower. Fatigue is much better, temp is normal throughout morning, tongue is slightly better and we are waiting to retest in the fall to see if number has dropped. It is slow going. Kids are on low dose Iodoral, Selenium, B's, no armour.

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I have has hashimotos since I was a teen. I currently take 350 Mcgs of synthroid. I have founds endos to be pointless and my PCP has always done a much netter job of managing my very complicated case. I would imagine pediatricians wouldn't have that same expertise as children often don't get thyroid problems. Do you see a family doc or ped?

 

Just FYI the disease can cause a huge variety if symptoms, as any autoimmune disease can. When I was a kid I got terrible hives all over my body to the point of angiodema and needing hospitalization. As I aged I now only get brain dysfunction. I will not be able to find my car in a parking lot, not know where I am or where I was going (almost like mini amnesia moments) and not rembering where my kids are. My first symptom is always verbal processing. Ex. If I wanted to ask someone to open the door I might say close the window, or simply not be able to find the words to say at all. It's very easy to manage thyroid problems once they are identified. You have to do bloodwork every 6 weeks until optimal dosage of thyroid replacement is made. The worst my tab ever was was in the high 60s and I was hospitalized post pardum.

 

I'm not sure there is a PANDAS link there or not but please let me know if you discover one.

 

The thyroid antibody test can be ordered by any doc.

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Here's a good place to start. http://thyroid.about.com/od/gettestedanddiagnosed/a/testdiagnose.htm

The only thing an endo did for me was an ultra sound right in the office exam room. They will look for a goiter and nodules ect. Th one thing I can tell you is that the generic form of synthroid never worked for me. Synthroid is the only thing that works. It's a very unstable med with a very shirt shelf life. It's been documented very thoroughly that the generic tablets deliver a very inconsistent dosage where as synthroid is very consistent. It's a very easy disorder to manage with just a little fine tuning in the beginning. And that is coming from someone with severe disease. Most people I know are on .05 mcg or .25. I'm on 350, they don't even manufacture a dose that high so I have to take a couple different prescriptions to make up my dose. You do have to be careful not to take with antacids or dairy products I take mine at bedtime where it won't bind with anything else making it ineffective.

 

I would do all the tests initially but once things are under control you o my need to keep an eye on tsh free t3 and 4. Keep in mind that your chide normal might be slightly outside the expected normal range. So e docs won't treat this minor differentiation without symptoms.

 

Please let me know of you find a connection. With the PANDAS. Is be fascinated!

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