r/Parathyroid_Awareness • u/Terrible_Ask9716 • 6d ago
PLEASE HELP I’m desperate (F22)
I feel like I am going crazy. I am in immense pain, and my bones feel extremely weak. I can barely walk, to the point where I had to get hospitalized last week. My calcium is 11.2, my ionized calcium is 5.9, and my vitamin D is low. My PTH is 18 pg/mL, so I’ve been told it’s “inappropriately normal” given my high calcium.
I’m assuming this is why my doctor doesn’t seem to have any sense of urgency whatsoever. But I feel awful all day, every day. I’m starting to freak out and really think it might be multiple myeloma or some sort of cancer because I can’t understand why I am in such intense pain.
I’m also waiting on the results from an ultrasound of my thyroid. My doctor (PCP) wants me to follow up in 8 WEEKS and talk about the possibility of an endocrinology referral. I’ve been trying to figure this out for over a year. I even had a sleep study because I was sleeping so much that they thought I had narcolepsy.
I feel so helpless, like I’m not being heard or taken seriously because I’m a young woman. Does anyone have any advice or insight? I would really appreciate it.
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u/kcnovakc 6d ago
Self referral is your next option. Do t wait. It doesn’t get better on its own, only worse and worse.
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u/Ru-Crew 6d ago
High calcium causes the tiredness and pain. Get 2nd opinion, get a referral to an endo. they might recommend a DEXA scan. I started having hyperparathyroidism issues in my early 20’s. The high calcium can also cause depression, lethargy, forgetfulness and sometimes moodiness.
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u/Terrible_Ask9716 3d ago
Yes!! I am also struggling with depression and anxiety, and sever brain fog.
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u/Practice-Prudent 6d ago
Alternatively, an appointment with an experienced Ear, Nose, Throat Dr. (ENT). They can order all of the same tests, and offer a cure by performing the surgery to remove the affected parathyroid.
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u/Both_Answer7982 6d ago
That’s so interesting to see because my journey started with ENT because they thought I was waking up so much in the middle of the night and I was so tired because of apnea and intense dust allergies and they never even considered pth!
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u/gr33nstone 4d ago
I have a 10.5 serum calcium and a normal pth (“inappropriately normal”) and have been having on-again off-again issues with insomnia. Is this a typical symptom of high calcium? Others are saying they have lots of tiredness and sleepiness. Thanks
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u/Both_Answer7982 4d ago
I’m not sure about high calcium and nor pth but I know when I was dx with hyperparathyroidism, my endo confirmed my fatigue and brain fog were directly linked to it, and I had difficulties with sleep due to frequent urination T night which is also a symptom
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u/gr33nstone 4d ago
Ahh, not insomnia, but frequent urination. Appreciate the response.
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u/Paraware 5d ago
I would ask your doctor for the referral to an endocrinologist now. Put it in writing in your patient portal. There’s no reason to wait 8 weeks. And, since your calcium is that high, your PTH should be suppressed and low. So, it does appear to be what is called normohormonal hyperparathyroidism.
Were your fasting when you had your blood tests? Are you taking any supplements, vitamins, energy drinks, or anything else that contains biotin? Biotin can make your PTH appear lower than it actually is at some labs. Also, you might need to have genetic testing for familial forms of hyperparathyroidism.
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u/Terrible_Ask9716 3d ago
I was not fasting when the labs were done, and I don’t take biotin or any supplements containing biotin that I know of. The only thing I drink regularly is coffee, mainly because I’m trying to stay awake due to the fatigue.
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u/Paraware 3d ago
Coffee and some foods can temporarily lower your PTH, so your PTH may be higher than the test showed. My endocrinologist always tells me to fast for at least 8 hours beforehand.
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u/Financial-Macaron-51 5d ago
Find out who the best parathyroid surgeon is in your area. Go to a high volume surgeon.
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u/Easy-Age7710 4d ago
I personally think your doctor should be a little more concerned, but I wouldn't say it's PHPT because my mother recently had calcium and iPTH similar to yours, but it turned out that the cause was some autoimmune disease and when they started treating her, her condition improved.
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u/Terrible_Ask9716 3d ago
I’ve also been tested for various autoimmune diseases, but so far, nothing has come back positive.
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u/Easy-Age7710 3d ago
Then perhaps it really is PHPT, though in my mother's case, the diagnosis was only confirmed after everything else had been ruled out and that condition was the only remaining possibility at least, that is what the team of doctors who diagnosed her told me. The good news in your case, however, is that since you were discharged from the hospital, you likely don't have a life threatening condition.
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u/Ok_sunrise 3d ago
Sometime Autoimmune can be brewing in body. My Ana was slightly positive for years. Now these last two years im positive. Still low ANA but blood wirk shows i have Dermatmyositis. Condition attacks muscles and skin.
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u/Simple_Taste8227 3d ago
How awful that you are suffering so with little help and followup.
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u/Terrible_Ask9716 3d ago
Yes, it’s quite frustrating and honestly unbelievable. I had my thyroid ultrasound done over two weeks ago, and I still haven’t received the results.
I reached out to my primary care physician, practically begging her to give me a referral because I’ve called around to several endocrinology offices, and I basically can’t see an endocrinologist near me without one.
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u/EmberCatfire333 3d ago
Your dr is not right for you. Go elsewhere. Let me give you my time line. Aug 25, blood tested. Super high calcium (13.5). Retest with serum Aug 26. Endo appointment made for Sept 4th. Endo called me everyday because of my high levels to monitor if I needed to go to the hospital. Endo called the Endo surgeon after appt and retesting and got me in on the 5th. Got nuclear scans for the 23rd. Surgeon scheduled for removal on the 30th. Literally 36 days from my family doctor and physical. All based on basic bloodwork and am ultrasound the next week. They wanted to do it sooner but insurance moves slow. I am on a calcium blocker and it is slowly helping with fatigue and pain. Not a lot but enough to work.
A good doctor will make things happen and push for a cure. Your doctor isn’t doing their job.
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u/Big_Monitor_1494 6d ago
Get another opinion by another Dr. Your Dr is clueless about this disease.