For PANDAS Parents

[P_Mom]

Some new info. to consider.

 

My most helpful and appreciated mentor for me through this PANDAS journey has recently filled me in on some additional info. regarding PANDAS. This is a Mom who had a daughter in the original study at the NIMH in the late 90's. She has been through it.

She informed me that her daughter suffered thyroid dysfunction during her PANDAS years and had to take thyroid meds. She said her symptoms were so severe, particularly anxiety, that when the treatments wouldn't quell the anxiety, they looked into her thyroid. She explained to me that the thyroid originates from the brain/brain stem during development in the womb, and then migrates down and settles in the neck, thus retaining cells from the brain, and being yet another area where the PANDAS autoantibodies attacked, causing the dysfunction and additional symptoms. What is interesting is she explained that although her daughters thyroid numbers remained in the normal ranges (kinda like the strep titers can), the docs felt certain that her thyroid was involved and prescribed thyroid medication, which her daughter responded to. In her daughters case, she suffered from hypothyroidism, one of two dysfunctions...the other being hyperthyroidism. I posed the question to her if this was unique to her daughters case...she answered to me that thyroid dysfunction is considered to be common among PANDAS kids, yet it is not normally recognized! Yikes!

 

Just thought I should put the consideration out there....

 

By the way..her daughters thyroid has recovered and functions normally now. Her daughter is actually off all meds at this point and is doing well....just some lingering anxiety issues.

[Indigo]

Did she have IVIG treatment as well or something else? Thanks for the info, will pass along to my doctor.

[P_Mom]

She received 2 separate sets of PEX treatments...the first one cleared her daughter of symptoms...then, she got her daughter the pnuemococcal vaccine, and her PANDAS came back in full force. Her daughter also took many antibiotics, and, because her symptoms were so severe, they had to do meds. (not SSRI's, she said they made her daughter worse)

She never received IVIG, her daughter was in the study at NIMH and assigned to receive PEX.

[Kiera]

Question - if the thyroid function tests are in the normal range (as are my ds's) then how do you know if they're hyper or hypo thyroid to treat? Or do you presume them to be hypo and treat with thyroxine and see what happens? Just not sure how they determined she was hypothyroid if levels were normal?? Thanks.

[peglem]

OMG! I think my daughter is suffering from thyroid problems and she seems to cycle from Hypo to hyper. She sometimes tests for high TSH levels, but T3 & T4 are usually normal- but her symptoms are thyroidian (I just made that word up, but I like it). Her doc has given me a referral to an endo... However, we've been through this before, so I'm worried the endo will not treat because the labs are not bad enough, instead of considering her symptoms.

 

I found a good article that I've not thoroughly gone through, but I was debating whether to share it here, because I thought this was a separate issue from her PANDAS. There is another mom on here, who was undx'd PANDAS as a teenager who was helped with thyroid medication even though her thyroid labs were not out of whack. I don't know why I have so much trouble remembering who she is...she has been very helpful to me.

 

I was wondering if medication could be causing the thyroid problem (I think my daughter was neg for the antibody associated w/ hashimotos) and found this...

 

http://www.thyroidmanager.org/Chapter5/5a-frame.htm

 

I see that rifampin affects the thyroid and wonder if that is why it helped so much.

[lfran]

You might want to take a look at this site. I went and heard them speak about thyroid issues and they were very comprehensive.

 

They also have a very thorough literature review on Lyme, which is how I found them.

 

http://aitrk.holtorfmed.com/thyroid-disorders.html

 

 

OMG! I think my daughter is suffering from thyroid problems and she seems to cycle from Hypo to hyper. She sometimes tests for high TSH levels, but T3 & T4 are usually normal- but her symptoms are thyroidian (I just made that word up, but I like it). Her doc has given me a referral to an endo... However, we've been through this before, so I'm worried the endo will not treat because the labs are not bad enough, instead of considering her symptoms.

 

I found a good article that I've not thoroughly gone through, but I was debating whether to share it here, because I thought this was a separate issue from her PANDAS. There is another mom on here, who was undx'd PANDAS as a teenager who was helped with thyroid medication even though her thyroid labs were not out of whack. I don't know why I have so much trouble remembering who she is...she has been very helpful to me.

 

I was wondering if medication could be causing the thyroid problem (I think my daughter was neg for the antibody associated w/ hashimotos) and found this...

 

http://www.thyroidmanager.org/Chapter5/5a-frame.htm

 

I see that rifampin affects the thyroid and wonder if that is why it helped so much.

[Christianmom]

Does anyone know what the correct tests are to test thyroid function? Does Labcorp run them?

[peglem]

Does anyone know what the correct tests are to test thyroid function? Does Labcorp run them?

I don't know all of them, but Thyroid Stimulating Hormone (TSH), T3 & T4 are pretty standard and can be run by lapcorp or sonora quest. There are others for thyroid antibodies.

[writergal]

I have a son with PANDAS and it is very interesting to hear about the thyroid possibly being an issue as well.

 

I was diagnosed a few months ago with hypothyroidism myself- by my ND. As a 20 something I was on synthyroid for about 6 months with my MD before my blood tests normalized. And now almost 20 years later I can look back at the symptoms I've had through the years and want to scream. I've had cold feet almost my whole life as well as other assorted thyroid type issues that were never diagnosed (after the first time). Instead I'd get blood work and my doctor would say my numbers were within the normal range. Also when I hit my 40's I suddenly gained about 15 pounds that just refused to budge- fortunately I started doing some reading on my own and when my ND looked at my numbers she told me that yes, the numbers were within the normal range but she suspected I might have metabolic syndrome as well as hypothroidism. She's slowly been adding the naturethyroid by an additional 1/4 gram each month and my symptoms are starting to stabilize. And something else that is really interesting. I went off my naturethyroid for 2 months while doing a specific body cleanse- dumb but just wasn't finding time to properly take my meds. My neck started to get thick and fat looking- definitely showing some thyroid issues and after a month or so back on my naturethyroid it went back to normal. No more fat neck. Yeah!

[DebC]

Following are the tests I was told that I should be tested for:

 

THS

Total T4

Free T4

Total T3

Free T3

TPO Antibodies (important for autoimmune issues)

TGB Antibodies (important for autoimmune issues)

Reverse T3

Vitamin D Levels

 

The TPO and TGB Antibody tests will look for an autoimmune attack on the thyoid, per what has been explained to me. I currently have a 1" nodule on my thyroid so just had all of these tests run. I've been telling my doctor for over 2 years that my thyroid is off but the basic tests came back normal. Doctors will push back on doing the antibody tests if the other tests come back normal, so you have to advocate for yourself and say that you want those two tests run. My TPO test in August was supposed to come in under 35 and was at 80. Therefore, there is definitely something going on. I had a biopsy done and hurthle cells are present so I am currently pursuing the advice of several surgeons to see if removal is necessary or whether they can determine if the cells are benign or malignant without going in (first appointment today and 2nd opinion on 10/11). I think it's interesting that thyroid issues seem to crop up in PANDAS families. Our PANDAS daughter had thyroid levels run in August as well and so far hers are normal.