autoimmune thyroid in "non PANDAS" child

[kimballot]

My "non PANDAS" dd16 has had elevated TSH - first discovered about 8 months ago. She has been on synthroid for the last 1 month and after 1 month on synthroid her TSH is at normal levels, but Thyroid Antibodies labeled as "thyroid peroxidase (TPO) AB is 56, which is high (ref range 0-20).

 

DD has some PANDAS symptoms (very brief - and no one else would ever put this together) when sick or after immunizations.

 

I will get her into Dr. B. I am also thinking we should do igenex lyme testing. Wondering if anyone else has experience with this and can offer suggestions/ avenues I should be exploring. Thanks so much. I don't know what I would do without this forum!

[JuliaFaith]

My "non PANDAS" dd16 has had elevated TSH - first discovered about 8 months ago. She has been on synthroid for the last 1 month and after 1 month on synthroid her TSH is at normal levels, but Thyroid Antibodies labeled as "thyroid peroxidase (TPO) AB is 56, which is high (ref range 0-20).

 

DD has some PANDAS symptoms (very brief - and no one else would ever put this together) when sick or after immunizations.

 

T4 was high on testing so son was put on thyroid med. (Armour 30 mg) for hypothyroidism (10 mos. ago). About 3 months ago it was increased to 60mg. Now he is testing high on TSH (before it was normal) so was put on 'Nature-throid' 65 mg a day. Have heard that lyme can cause all of this but not sure why with 11 mos. of treatment tests are showing worsening of the thyroid not better. Hopefully will know more at visit next week. He is seeing an ND lyme doctor. Will try to post any additional info. that I learn at this visit.

 

Just an FYI, he was having some 'flare-ups' recently along with exercising a lot more so not sure, if anything, the exercise has to do with it. Have heard that exercise can cause 'flu-like' symptoms for people with thyroid issues. Best wishes for your daughter.

Edited October 9, 2011 by JuliaFaith

[DebC]

I'm heading down the same road myself. My levels are normal except for my TPO antibody level which is at 80 and should be below 35. I am suspecting Hashimoto's Disease as I also have a nodule of 2 cm and a huge autoimmune history on my side of the family. However, I am looking at surgery within the month as the nodule biopsy showed the presence of hurthle cells which are malignant 17% to 20% of the time. I've seen a surgical oncologist for a first opinion and will see a thyroid surgeon/thyroid disease specialist on Tuesday. I'm hoping that she will be the best option for removal as she will have a team of additional specialists to continue treatment once the removal is complete. After that, we will be looking at synthroid as half or all of the thyroid will be removed depending upon what is found once they begin operating. The interesting thing is that I had resistant strep starting in May and had to continue antibiotics through July. I started having neck pain in July and kept thinking it was the strep. My rapid is currently positive but the culture is negative. We are seeing some reaction in our PANDAS daughter. I can still taste the strep and in my research have found that strep can reside in the thyroid causing suppurative thyroiditis. The surgical oncologist immediately wrote this off as not being a possibility. However, I'm hoping that the thyroid specialist will embrace this possibility. I at least want her to test the removed tissue for strep so that I can be properly treated if there is some present along with the hurthle cells.

 

We had a speaker at our September PANDAS support group meeting who said that I should be on a gluten free diet due to my thyroid issues. However, I have not begun to explore that avenue yet. We are already on a low sugar, low white flour, no hydrogenated oil, no milk, no white rice diet. The thought of limiting even more is daunting at this point.

[JuliaFaith]

We had a speaker at our September PANDAS support group meeting who said that I should be on a gluten free diet due to my thyroid issues.

My son was put on a 'gluten-free' diet first thing when diagnosed with PANDAS just to keep inflammation down as much as possible. He tested neg. for allergies to gluten, dairy etc. so still doing dairy. I also went on the diet to make things easier and my head cleared up so much and I feel so good that I'm not sure if I will ever go back. It is much easier now that we have been doing it for a while. Our grocery bill is higher though with gluten-free products and organic. The organic is to keep toxins as low as possible.

 

Will be interesting to hear what the thyroid specialist says. Have you had a deep nasal culture done for MARCoNS, coagulase negative staph, and mold growth? My son has never had strep or sinus infections and he had the staph come back positive (had it done while under for T&A)! Was treated for 3 months and hopefully it is gone now. His energy went thru the roof during/after treatment. Hope you find out some answers.

 

P.S. Have you heard of "Eating Too Many Goitrogenic Foods causing a lump"? http://thyroid.about.com/od/gettestedanddiagnosed/a/thyroid-levels-fluctuating_2.htm

Edited October 9, 2011 by JuliaFaith

[LNN]

I also have a nodule of 2 cm and a huge autoimmune history on my side of the family. However, I am looking at surgery within the month as the nodule biopsy showed the presence of hurthle cells which are malignant 17% to 20% of the time.

 

Deb,

I had to do the biopsy thing in our early Pandas days. It was a sleepless, gut-wrenching time. For me, the results were benign and followups show no issues so far. But nothing anyone says can ease your mind. I hope you can put this behind you and get back to feeling healthy. Please know you will be in my thoughts.

Laura

[kimballot]

I'm heading down the same road myself. My levels are normal except for my TPO antibody level which is at 80 and should be below 35. I am suspecting Hashimoto's Disease as I also have a nodule of 2 cm and a huge autoimmune history on my side of the family. However, I am looking at surgery within the month as the nodule biopsy showed the presence of hurthle cells which are malignant 17% to 20% of the time. I've seen a surgical oncologist for a first opinion and will see a thyroid surgeon/thyroid disease specialist on Tuesday. I'm hoping that she will be the best option for removal as she will have a team of additional specialists to continue treatment once the removal is complete. After that, we will be looking at synthroid as half or all of the thyroid will be removed depending upon what is found once they begin operating. The interesting thing is that I had resistant strep starting in May and had to continue antibiotics through July. I started having neck pain in July and kept thinking it was the strep. My rapid is currently positive but the culture is negative. We are seeing some reaction in our PANDAS daughter. I can still taste the strep and in my research have found that strep can reside in the thyroid causing suppurative thyroiditis. The surgical oncologist immediately wrote this off as not being a possibility. However, I'm hoping that the thyroid specialist will embrace this possibility. I at least want her to test the removed tissue for strep so that I can be properly treated if there is some present along with the hurthle cells.

 

We had a speaker at our September PANDAS support group meeting who said that I should be on a gluten free diet due to my thyroid issues. However, I have not begun to explore that avenue yet. We are already on a low sugar, low white flour, no hydrogenated oil, no milk, no white rice diet. The thought of limiting even more is daunting at this point.

 

Deb - Thanks for the info and I am sorry to hear that you are going through this. Interestingly, my daughter had mono in Dec. 2009 and her thyroid symptoms started after that. She also had mulitple strep throat infections througout 2010 and finally had tonsillectomy in Feb. 2011. Now we have the thyroid issue. Please let us know how things go with you. I wish you all the best-

[kimballot]

My son was put on a 'gluten-free' diet first thing when diagnosed with PANDAS just to keep inflammation down as much as possible. He tested neg. for allergies to gluten, dairy etc. so still doing dairy. I also went on the diet to make things easier and my head cleared up so much and I feel so good that I'm not sure if I will ever go back. It is much easier now that we have been doing it for a while. Our grocery bill is higher though with gluten-free products and organic. The organic is to keep toxins as low as possible.

 

Will be interesting to hear what the thyroid specialist says. Have you had a deep nasal culture done for MARCoNS, coagulase negative staph, and mold growth? My son has never had strep or sinus infections and he had the staph come back positive (had it done while under for T&A)! Was treated for 3 months and hopefully it is gone now. His energy went thru the roof during/after treatment. Hope you find out some answers.

 

P.S. Have you heard of "Eating Too Many Goitrogenic Foods causing a lump"? http://thyroid.about.com/od/gettestedanddiagnosed/a/thyroid-levels-fluctuating_2.htm

 

Juli - who did your MARoNS test? I thought my son had everything tested for sinus, but this is new for me. Fortunately, he is doing well now with IVIG, but he will not be on that forever...

 

Thanks for the info!

[JuliaFaith]

[

 

Juli - who did your MARoNS test? I thought my son had everything tested for sinus, but this is new for me. Fortunately, he is doing well now with IVIG, but he will not be on that forever...

Thanks for the info!

Our ND (lyme doctor) asked if the ENT doing son's T&A could do the test while he was asleep. It is a deep nasal culture and she asked for the following tests to be done: MARCoNS (super staph), coagulase negative staph (infection), & mold growth. Dr. (not ENT) was surprised when the staph came back positive the first time since she has to do the culture several times usually to get a positive. We figured it was because he was asleep so they could go really deep. Yuk! Lyme doctor then ordered the BEG nasal spray to treat.

 

Hope this helps. Best wishes on healing.

Edited October 11, 2011 by JuliaFaith