High Calcium Untreated for Years- Doctor Blaming Cheese?
Okay, so this is just something silly to get off my chest and see if anyone's had similar odd comments, as in April, I finally went to my new PCP to ask about a potential cause for my debilitating chronic pain and fatigue. In the past, I had gone, and I was advised to: read a self-help book, limit my diet even harder (I also have PCOS), amongst other things. One of my last blood tests before moving a few years ago showed high calcium, and that doctor told me (who was 24 at the time) to "just lay off the cheese," which I felt like another comment targeted at my weight.
A lot of things from 2022-2023, while I was finally buckling from worsening cysts and chronic pain + fatigue, were framed as a personal failing to be honest about my lifestyle. When I finally moved out of that city, I was able to get a new doctor who gave me proper support on PCOS other than "try veganism," and I lost 40lbs super easily because of actual treatment (shocker).
I had completely forgotten about the calcium comment for the last few years, and didn't know it was secretly a huge factor in stripping my ability to live life from me. So, back to this April, my doctor suggested running some hormone and autoimmune labs to find something. At this point, I am prepared for them to find nothing and to be left with more shame over my inability to force functioning like I used to. Instead, she sent me a lengthy report back showing I had bad anemia, a borderline severe Vitamin D deficiency (10.7), autoimmune markers, and that pesky elevated calcium. She explained that it looked to her like hyperparathyroidism off the bat and ordered the PTH labs.
PTH came back in the "normal" range, but the notes below said that normal or high PTH + high calcium are indicative of hyperparathyroidism. I do some reading on some reputable sites (like Mayo Clinic and parathyroid.com), and the symptoms lined up creepily well. I didn't even mention the incessant thirst I've had for several years, itchy skin, and what felt like heart palpitations. I had never even heard of hyperparathyroidism before, but it did so much to explain why random bones in my body were hurting and being so tired I couldn't even think anymore. I have felt like I'm in some cognitive decline for years now.
I saw an ENT recently by referral, and he claimed it couldn't be HPT because of the normal PTH levels, but my PCP seems to disagree with him, and we are going ahead with the nuclear scan in July (long ways out, ugh).
I feel so worried it's not Hyperparathyroidism, because I've seen a lot of reports of the surgery alleviating so much pain and discomfort. I am also dealing with... anger? Over the years of previous doctors' dismissive attitude, I convinced myself I was attention-seeking or too "weak" to push through. Has anyone else felt these feelings of intense anxiety between getting tests for the diagnosis, or the anger? I'm not sure if this is an appropriate post, but I think it was shocking how emotional this process has gotten for me. I miss my old life before endocrine issues took over, I miss hiking and being able to function at a baseline.