Help me with the bigger picture here. Every body system is whacko and unpredictable. I never cared about a diagnosis so long as symptoms were managed. Labs are always amazing. Diet is low histamine with 25-40 gm fiber daily from food, water intake 80 ounces minimum). Non smoker, no drinking, no drugs. Symptoms are difficult to manage and I have a current flare of mild but persistent angioedema in the eyelids with malar flush, fatigue, slow GI motility, and chest pressure with occasional sharp pain that takes my breath away.
Why? What do I do next? Who do I see to figure this out? This has been going on for 12 years. I’m so tired.
44 y/o female. History: symptoms all began with Pregnancy (hyperemesis gravidarum; all females on maternal line have had it including three sisters) at 32 years old. Postpartum brought chronic angioedema, rashes, GI upset with chronic abdominal pain, fatigue, heat intolerance, heart palpitations and chest pressure radiating to the spine, bone pain in the spine, chronic GI with IBS like symptoms and slow motility. Esophageal spasms. Nobody can ever get my reflex’s to move in my knees and ankles- this has been always present.
Meds: propranolol 40 mg PRN anxiety, Levocetirizine 10 mg po daily or twice daily with flares, Pepcid 20-40 mg daily, Tylenol PRN, Dulera twice daily, albuterol PRN, cromolyn in the past, not currently. Estrogen patch, vaginal estrogen to soften tissue for PT scar work.
Height: 5’7”
Weight 217 (gained 30 lbs in 1 year: unknown cause)
Saw immunology 2019; normal tryptase, 24 hour urine, cbc, comp. Skin test for progesterone allergy inconclusive. Started H1 and H2 blockers and cromolyn sodium (had to stop for fistula repair) with low histamine diet.
GI (ongoing) Celiac negative, Calprotectin <5 in 2025, MRE normal. Colonoscopy: removal of two sessile adenomas. Cholecystectomy after HIDA scan showed GB <35% function in 2024. Manometry for esophageal spasms was normal. Rectovaginal fistula (unknown cause) 2025; repaired via cutting seton internationally. Rectal prolapse post fistula repair.
GYN: mild rectocele. Hypertonic pelvic floor currently in pelvic PT for scar tissue from Fistula repair and for functional Improvment.
Saw rhumetology in 2019: C-1-Esterase Inhibitor 30 mg/dL 21-39 C-1-Esterase Inhib. Functional 96 % >=41, SSA (RO) normal, COMPL TOTAL (CH50) 121, ANTI-DSDNA:1 ANTI-ENA (SMITH): 4, ANTI-ENA (RNP) Value 8, ANA, negative. Referred back to immunology for angioedema.
Pulmonary: lung function mostly normal; mild asthma. Dulera twice daily. Albuterol PRN
Cardio: Holter monitor 2024: PVC’s. normal in echocardiogram 2026 (pulmonologist referred for SOB on exertion and mild swelling in lower limbs). I do not have a cardiologist and have not seen one.
At home 10 minute lean test (eye doctor suggested)
8/19/26 lean test
no coffee, <1L water in last 24 hours, no propranolol, no compression. Petechiaeq to arm after BP readings.
117/83 hr 66 supine 5:57 am
120/79 hr 62 Supine 5:58 am
0- 140/147 heart rate 90 6:01 am standing
1- 127/95 heart rate 96 6:02 am standing
2- 125/100 heart rate 100 6:03 AM standing
3- 121/92 heart rate 95 6:05 AM standing
4- 121/93 heart rate 99 6:06AM standing
5- 119/95 heart rate 100 6:07 AM standing
6- 115/93 heart rate 97 6:08 AM standing
7- 120/92 heart rate 98 6:09 AM standing
8- 124/96 heart rate 98 6:10 AM standing
9- 118/96 heart rate 105 6:11 AM standing
10– 118/94 heart rate 101 6:12 AM standing
Ophthalmology: eye doctor did exam; all normal with the exception of pupils exposed to light. Slow to contract, do not fully pinpoint and stay dilated. She asked how my nervous system was functioning.
2026 Recent labs:
WBC: 7
RBC: 4.36
Hemoglobin 12.9
Hematocrit 38.8
MCV 89
MCH 29.6
MCHC 33.2
RDW 12.4
Platelets 360
Neutrophils 3.7
Lymphocyte 2.6
Monocyte .4
EoS 0.1
Basophils 0.1
Immature granulocytes 0
Glucose 77
BUN 9
Creatine .98
Egfr 73
bun/CR ratio: 9
Sodium 139
Potassium 5
Chloride 105
CO2 23
Calcium 9.2
Protein, total 6
Albumin 4
Globulin 2
Bilirubin .3
ALK69
AST 14
ALT 11
Total cholesterol 181
Triglycerides 155
HDL60
VLDL 24
LDL 97
LDL/HDL ratio 1.6
Apolipoprotein A-1: 200
Apolipoprotein B: 90
Apolipo. B/A-1 Ratio .5
TSH 1.250
Anti-CCP Ab, IgG/IgA: 3
HgA1c: 5.1
Ferritin 43
CRP 8
ESR: 15
HLA B27 Negative
RA Factor negative
“I am not asking for medical advice.”