trggirl Posted March 15, 2015 Report Share Posted March 15, 2015 Have you checked Thyroid levels? My daughter has high CamKII and just got back blood work that shows very high free T3 and free T4. This is actually the second time we have seen this but this time the thyroid levels are very high. I have found a few studies that show a connection between CamKII and the thyroid. I am just wondering if anyone else has experienced this. Link to comment Share on other sites More sharing options...
dasu Posted March 15, 2015 Report Share Posted March 15, 2015 (edited) Thats very interesting. Our two PANDAS kids have trouble with bloodwork so we only took body temperatures and they were 1.5 - 2 degrees lower than normal. They are now on Armour thyroid. My daughter had high CamK however my son hasn't done the Moleculera labs yet. As we only started this 6 weeks and are in post IVIG its hard to determine the effect. We are hoping for a stronger immune system. Do you find evidence that hypothyroid is a factor in triggering PANDAS or is a result of it? Edited March 16, 2015 by dasu Link to comment Share on other sites More sharing options...
trggirl Posted March 16, 2015 Author Report Share Posted March 16, 2015 At this point, I am not even sure what the connection is or even if there is a connection. In my daughter's case, it is hyper rather than hypo. Interesting info about your daughter. As another side note, if you haven't tried Lidocaine for the bloodwork, then I highly recommend it. You cannot feel a thing with the Lidocaine applied to the skin. Link to comment Share on other sites More sharing options...
tj21 Posted March 16, 2015 Report Share Posted March 16, 2015 ds15 has high CamKII and normal T3/T4. All of his other Moleculera auto-antibodies were in normal range, BTW. I know there can be a correlation w/Hashimotos and Lyme and/or EBV sometimes. My TPO is very slightly elevated so we're keeping an eye on it. Link to comment Share on other sites More sharing options...
4Nikki Posted March 16, 2015 Report Share Posted March 16, 2015 (edited) Dr T gave dd a possible diagnosis of Hashimotos encephalopathy with high anti-thyroid numbers (Range <40 Anti-TG-131;Range <35 Anti-TPO 89.4) but the endocrinologist threw it out and said it was so because the autoimmune system was attacking the thyroid. I did notice the T3 Free was 5.33 with a normal of 2.5 - 3.9 and I hadn't noticed that before. It also did not appear on Dr. T's look up reference he sent me. (???) Dd was given a steroid taper and the numbers came down but I didn't look at the T3. Edited March 16, 2015 by 4nikki Link to comment Share on other sites More sharing options...
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