Autoimmune?

[grlsmom3]

My 14 year old daugher has been ill since May. She is recovering from APSGN and now has low TSH 0.006 and multinodular goiter on her thyroid. She is to have a nuclear med. scan with uptake in Nov and then to a ped. endocrinologist. She has fatigue, muscle cramps in her legs, hair loss, intolerance to cold and heat and constipation. She was also positive for antibodies.  TSI 159, TPO 185. US revealed thyroid gland is heterogeneous in echogenicity. The isthmus appears to be thickened but thyroid gland itself is not diffusely elongated. Her MCV was 79, Monocytes 1, Eos 6, Monocytes (absolute) 0.1    Albumin, Serum 3.4 this is improved greatly, had been 1.6 because of APSGN. Also has had enlarged inguinal lymph nodes and pelvic free fluid, and right ovarian cyst with pain. Has on and off abdominal pain and nausea but can eat and keep it down. Occasional headaches and chest pain. Pulse and heart rate and rythm are normal. Any ideas are greatly apprec. See autoimmune? continued for further info. Thank you.

[AprilAA]

Adendum: my daughter is 20 and her health had ben in decline for approx 3 years and its now critical with BP as high as 160/110. .  Labs: very high CRP levels (5.3), high serum chloride, high bun/creatinine ratio(2), low bilirubin,low free T4,lymphs as low as 8.L and recently as high as 40,low MPV,high esos, urine positive for epithelial cells, crystals,urobilinogen. The proteinaceous structures in the sinuses seem very relevant to this diagnosis (?)She snores as if unconscious where she has never snored. She does have severe scoliosis with one cerebellar tonsil below the foramen magnum. Please someone help us .

[AprilAA]

Help! My daughters life is in danger and no one will look deep.Hypertension, tachycardia and irregular, rapid weight gain, purple strai, unable to regulate body temp, skin dry w/texture changes, severe head pain (not headache ), nausea, loss of eyelashes and more. Cortisol testing done via blood normal 4.17 completed at 1750hrs. We feel certain endocrinology related. Labs are normal and than not. Two large proteinaceous dome structures found in sinus. Where in the body do we focus to get the answer? We are out of time.

[Deanna L Aftab Guy, MD]

The uptake scan is in a couple of days and that may help them start treatment before seeing her based on whether it is increased or decreased uptake or other
sorry for separate posts

[Deanna L Aftab Guy, MD]

your pediatrician needs to make the call to the endo about her labs so they can work her in sooner or decide about treatment especially if she is hyperthyroid, this cannot wait without treatment for a full 2 weeks

[grlsmom3]

I cannot find my other post about the neck nodule with your response. Shouldn't it be right below or above this one? I can't find it anywhere. It was titled Autoimmune? continued.
I have called everywhere to get her in to see a ped. endo. the earliest I could get is Nov. 14 but they are going to put us on the list to be called first if there is a cancellation. Thank you so much for your advice. Her nuclear scan is scheduled for Nov. 1st.

[grlsmom3]

Thank you for your response. I am sorry I did not make myself clear. My daughter first had the nodule in her neck near the sternoclastoid muscle and carotid artery first, back in 2005 and is still there. January 2005 TSH was 2.20-this is when they found the nodule and did blood work. We never got a clear diagnosis. APSGN stands for Acute Post Streptococcal Glomerulonephritis. This is what caused the blood and protein loss from her kidneys. The nephrologist we took her to originally thought she had an autoimmune disorder that caused the symptoms. They did a kidney biopsy June 2007 and diagnosed it as a strep infection which got caught in the kidney filtering system and caused the trauma. She is now recovering from those symptoms. While all this was going on the thyroid started to malfunction leaving us all to wonder if all of this is somehow related. May of 2007 her TSH was 0.04 , October 2007 TSH is now 0.006 Could the nodule in her neck or the strep have caused a misfire in her system triggering antibodies that are now attacking different organs one at a time? Hope this explains things a little better.

[Deanna L Aftab Guy, MD]

I am confused, your first post described a completely different case. I am assuming this is an update, now with primarily thyroid issued. Please define APSGN.
So now you describe a 14 year old girl with multinodular goiter and low tsh indicating hyperthyroidism. Uptake study will tell us if it is increased uptake as in Graves Disease or low uptake or normal as in Hashimoto's Disease. Both of these are causes of autoimmune thyroid problems. Graves is a disease that leads to antibodies made by our body that stimulate the TSH receptor on our thyroid gland rendering it active despite our body's thermostat in the pituitary (tsh) being shut off in every attempt to control things.
Hashimoto's is also an autoimmune disease caused by antibodies towards parts of the thyroid gland itself-enzymes and storage proteins. The antibodies cause damage and often there is a brief period of overactivity of the gland which is usually followed by inflammation and then resolution and scarring leading to underactivity of the thyroid. Both need assessment and treatment and both are worked up the same, a TSH, free T4, Total T4, T3 and thyroid antibody levels as well as thyroid stimulating immunoglobulin level might help.
Her TSI is elevated according to my lab, not sure your normals and her antibodies (tpo) are high as well, making it more than likely Graves. She needs evaluation immediately, do not wait till November to see a peds endo. Call your pcp or call the peds endo and see if they can work you in or have your pcp see you and discuss treatment till your endo appt. My new patients with hyperthyroidism have unstable vital signs or symptoms enough that they need treatment with a beta blocker or other antithyroid agent to prevent cardiac problems or other symptoms.
Her ovarian cyst might be coincidental or due to irregular cycling due to her hyperthyroidism.
So this answer is much different than my last one as the information provided differs much more.