philamom

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4nikki- from what I've been researching (briefly) and from what our local DO mentioned, most endocrinologists wont treat if TSH is in normal range, which is way too high. Many feel TSH should be under 2.0. Immunologist has us running labs again in 4-5 weeks. Let me know how you make out at your appt.

Thanks.

Nancy- do you cut the 15mg pill in half for your daughter?

Concerned about the dosage, so I haven't started anything. Searching and Nancy- I thought 30 mg was the least amount in a pill. Did you cut the pill up- they are so tiny? Or was it compounded?

searching and ktdommer- what dosage of Armour are you using on your child? thx

Went to our local DO and he prescribed the Armour. I still need to pick it up from pharmacy. The strength was 30. Does that sound about right for a soon to be 13 yr old? He mentioned taking it once a day in morning hours, but I thought i read somewhere that it should be twice a day- that the T3 portion doesn't absorb as easily. How are you guys taking it? And does the strength sound right? Thx!

I went back and looked through dd's previous lab results and only Thyroxine T4 was off/on low (.70's). TSH was always normal, although this time it increased from 1.4 to 2.5. This recent blood test was the first time thyroid antibodies were ever checked. Llmd's office recommends seeing an encrinologist, but I really dread seeing another specialist and explaining her background. Does anyone know of a pediatric encrinologist in the Philly or surrounding area?

Hi! Does your child see an encrinologist in our area?

I replied earlier but I guess it didn't take- on iPhone. NancyD- iv antibiotics has not been mentioned yet (except from a local doc). Our llmd orders the labs ever 8 weeks. He hasn't addressed the hypothyroidism. Will call him when we return from ivig. The labs just came in few days ago though. Our immuno is suggesting the trial of synthroid. I think it's a low dose. We took our dd off abx beginning of May so we could order the advanced lab culture again (pos in 2011). Then Advanced recommended we wait another month after ivig. She had an infusion mid May. So we just ran it on Monday. She's been having lupus symptoms too, so at times difficult figuring out what's is causing what. Her ANA was 1:640 and she has immune myopathy. Nikki- her abnormal results were after a 13 day steroid burst/ivig. I will check out your results when I return home and back on my computer. Thanks llm. I'll reach out to her.

Thanks for the info NancyD. Yes, dd is positive for band 31. Was double positive when we first starting testing with igenex in 2010.

Thyroid T4 low 4.2 (range is 4.5) Free Thyroxine Index low 1.0 (range is 1.2) Thyroxine T4 Free Direct low .74 (range is .99) Thyroid Antibody: Thyroglobulin high 20.6 (range is 0 - .9) edit to add- TSH reflex normal 2.570 T4 has been abnormal since February. I believe it was abnormal off/on a couple times prior. My dd is getting an infusion today, so I am not home to check her files. Would this be a possibility of a dangerously severe depression flair we went through April-May? Edit- I don't know much in this area. Can someone explain the difference between synthetic and armor thyroid?

Dd was just diagnosed with hypothyroidism and dr wants to put her on Synthroid. Can anyone share their experience with hypothyroidism. Thanks in advance! Dd has Lyme, Bart, Pans, lupus like autoimmune dx.

We recently got coverage again under subclass defiency. Dd only mounted a response to 2 of the 14 Pneumococcal Serotypes and is low in Subclass 2 (IgG). Same results we had when first tested, a few years back.

Congrats!!!

I order it from Pro thera. It's expensive - $50ish bottle. We haven't had any relapses of c-diff since using it.

any update on this?

tiredmama- I really like Klaire therbiotic detox probiotic. We use it along with Culturelle and Florastor daily.

Fantastic! I want to ditto mama2alex on the Rothman program. Excellent, excellent program!

No connection...just mama being nervous. After infusions, I tend to see an increase in symptoms with dd before getting better. I assume due to increased inflammation at first. The hospital said that its very important that we avoid any injury that could cause an increase in brain inflammation. When I got home from the hospital, of course I started thinking...

Regarding the igenex, we get reimbursed from our insurance plan 70 or 80%. So the western blot runs us around 40 dollars I believe.

Do you think 14 days after a concussion is enough time before receiving an ivig infusion?

I'm so sorry for all your going through. I just wanted to comment about the diarrhea. If accompanied by cramping, you may want to run a stool sample to check for c-difficile -toxin a & b. Also, you may want to add in Florastor.

Hopefully he was put on doxycycline?

Ok, that is awesome! He did a great job!!