FHH or familia hypocalciuric hypercalcemia and hasimotos

Posted by lisa79 @lisa79, Feb 10 6:24pm

I have FHH. I was recently diagnosed with Hashimotos. (I have the antibodies and a growth on my thyroid) I am symptomatic and have been for years. My labs still show normal thyroid function. I am wondering if anyone else has both high and low calcium and what to do, what works and what doesn't? Do you have normal labs as well? The exhaustion is becoming unbearable.

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geevee6170 | @geevee6170 | 1 day ago

Hi everyone, My name is GeeVee, and I was recently diagnosed with Familial Hypocalciuric Hypercalcemia (FHH) after years of elevated blood calcium levels and a very low 24-hour urine calcium test. I am grateful to have found this discussion because FHH is so rare, and I'm hoping to learn from others who are living with it.

Many doctors have told me that FHH is "benign," yet I continue to experience symptoms that affect my quality of life. I'm wondering whether anyone else with FHH has experienced similar things.

Some of the symptoms I've noticed include:
inflammation or stiffness, especially during the night
discomfort in my big toes after eating certain foods (for example, cherries)
tooth or gum discomfort during symptom flares
lower back discomfort
finger or elbow stiffness
occasional heartburn
changes in urinary symptoms during symptom flares

I realize these symptoms may not all be directly related to FHH, but I'd really appreciate hearing about the experiences of others living with this condition.

I also have a few questions:
Has anyone found a physician or medical center in the United States with particular expertise in FHH?
Has anyone found anything that helps reduce symptoms or improve quality of life?
Have any of you noticed foods that seem to trigger or worsen your symptoms?

Thank you for welcoming me. I look forward to learning from your experiences.