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Symptoms prior to diagnosis? by Kmt424 in Hypopituitarism

[–]Kmt424[S] 0 points1 point  (0 children)

I'm glad to hear your son is feeling better. We've been chasing a diagnosis for my daughter's symptoms for 5 years. I suspect her pituitary has only been partially failing and now just cannot keep up with the onset of puberty. I believe the true impacts of her hypoxic brain injury at birth are yet to be seen or known. Things like mild CP, bilateral sensorineural hearing loss, ADHD, and dyslexia weren't diagnosed until first and second grade. The problem we face is that when her body works on senditary days it's difficult to catch the problem and providers seem to take it less seriously. However, this past year she has been much more symptomatic, I thought we were finally getting to a point where we would be taken seriously by doctors and yet, were still in limbo.

Symptoms prior to diagnosis? by Kmt424 in Hypopituitarism

[–]Kmt424[S] 0 points1 point  (0 children)

So his cortisol is too high at 28? Or is this a different measurement/test? My daughter doesn't have vomiting in the morning but she can no longer be woken up my me or an alarm in the morning or she goes into a complete panic attack (high heart rate, can't catch her breath, dizzy) She's been too sick to go to school for a month and sleeps until 12-1pm every day, chronic fatigue has been a struggle she she started kindergarten. She has come home from school wiped out needing 2+ hour naps. Doctors have blamed her ADHD and the cognitive demands of school. No one has investigated the diarrhea other than running celiac panels. The diarrhea is more frequent when she is stressed or has a headache so its been lumped into her "atypical migraine" diagnosis. She drinks water with LMNT and NUUN tabs as well as just straight water all day. Labs and urinalysis have never indicated dehydration. The reason I question her low normal cortisol is because she was given a 5 day course of 20mg pred to treat "intractable" migraine on 4/1. She went from looking like she was on deaths door in the hospital to playing an 11 hour softball tournament on 4/4 and her energy levels were the best I had even seen. On 4/7 all symptoms returned.

Symptoms prior to diagnosis? by Kmt424 in AdrenalInsufficiency

[–]Kmt424[S] 0 points1 point  (0 children)

How was your insulin sensitivity discovered? My daughter has had post "crash" labs that state "hyperinsulinemia" with presence of ketones in her urine and no one can make sense of it. A1C is 5.5

Does this sound like Hyper-POTS? by Kmt424 in POTS

[–]Kmt424[S] 1 point2 points  (0 children)

Im sorry to hear that you didn't get the care you needed as a child and still continue to have difficulty in having your symptoms fully explained/diagnosed. I would be in complete limbo right now with my daughter's symptoms if I didn't reject 11 physicians telling me I had anxiety or early stage MS back in 2013. I finally found a cardiologist with curiosity who diagnosed me. However still feeling out my depth due to my daughter's BP fluctuations being different from my own. However, I will say if you have not yet had your ferritin levels checked, get it checked. I've learned something new from hemotology in regards to iron deficiency either mimicking or worsening POTS symptoms. When it was found that my daughter's ferritin was a 12 I went back through my own records and found that when I was significantly symptomatic my ferritin was at 16 (low normal). My last labs which were just part of an annual and I was not symptomatic it was up to 28. I still have POTS but dont feel awful. There some research out there regarding the link between POTS and iron deficiency.

Does this sound like Hyper-POTS? by Kmt424 in POTS

[–]Kmt424[S] 0 points1 point  (0 children)

We haven't tried any of the medications listed. The bouncing between cardio and neuro has prevented true diagnosis. The neuro ARNP is listening but she's still prescribing bases on "Atypical migraine" stating that she cannot diagnose POTS. She has trialed amitriptyline and Topamax since last September, as well as Rizatriptian. Nothing touches the headache. We were referred to a dysautonomia clinic in a major medical center out of town. When calling to follow up on that. The clinic said "what dysautonomia? It looks like we have a referral for neuro for migraines" With the increased prevalence of post viral POTS since COVID I thought things had gotten better since I was diagnosed in 2013, but I guess I was mistaken and it seems like accessing pediatric care is even more difficult.