After 2 years of seeing doctor after doctor and finding no answers--I was finally diagnosed with HyperParathyroidism (among other things), after I researched my symptoms and pushed to be tested for it. However, the doctor who finally tested me and confirmed the diagnosis basically just says it is very uncommon and does not seem to have any type of treatment plan. I am desperate to find out what I can do--be it surgery, medication, etc. Please anyone with any information please respond!!!
I am somewhat startled to read that the physician who finally confirmed your diagnosis kind of shrugged and didn't discuss with you the option of surgery.
Was he/she an endocrinologist?
In all your research I'm sure you've learned that hyperparathyroidism is caused by overactive parathyroid glands. Overactive parathyroid glands produce too much parathyroid hormones, which in turn stimulate increased levels of calcium in the blood stream.
The excess calcium released by the bones can lead to osteoporosis and osteomalacia. Also, a person w/hyperparathyroidism can develop kidney stones, because of high levels of calcium excreted into the urine by the kidneys.
Did the doctor tell you if the cause in your case is an adenoma (benign tumor) on one of the parathyroids? Or is yours due to simply an enlargement of one or more of the parathyroid glands?
Either way, SURGERY to remove the affected gland(s) usually cures this disorder.
When performed by an surgeon who is experienced in that procedure, the operation is totally successful (we're talking complete cure) in over 95% of cases... and serious surgical complications are quite uncommon.
The surgery can be done as an outpatient procedure under local anesthetic and usually you can go home after about 6 hours in the recovery room. Occasionally, a patient may become hypoparathyroid after surgery and blood calcium levels may drop too low. Although this is uncommon, the surgeon will usually recommend calcium supplements in order to avoid this and to restore bone density.
Surgery is considered a totally appropriate treatment even in people without symptoms, but often folks with mild hypercalcemia (excess calcium in the blood) and without symptoms or complications sometimes choose to be followed medically.
For instance, if for some reason, the doctor thinks surgery for you is not an option (and I'd need to hear a good reason!) it is essential that he/she monitor you regularly to avoid later complications. Monitoring would consist of clinical evaluation and measurement of calcium levels and kidney function every 6 months, annual abdominal x-ray, and bone mass measurement after 1 to 2 years. If the disease shows no signs of worsening after a couple of years, the interval between exams may be lengthened. If you and your doctor choose long-term followup, you should try to drink lots of water, get plenty of exercise, and avoid certain diuretics, such as the thiazides.
Don't despair, this is a treatable situation and again, if you are feeling lousy and have symptoms, please discuss surgery with your doctor, preferably one who doesn't shrug!
Quincy and I posted virtually at the same time and as you can see we agree that whatever doctor you see should be an endocrinologist. If your present doc IS one, I suggest finding another one who knows about the high cure rates involving surgery.
Thank you so much for responding. I live in a rural area, and actually got more info from your post than from my doctor. I was told for about a year that I probably had 'empty nest syndrome'--my symptoms and problems chalked up to being all in my head. It was wonderful to be vindicated with a positive test for a condition that I begged to be tested for. I am scheduled for an endocrinology appt. --but they cannot get me in until end of July. I am barely functioning as it is. Thanks for your wonderful post.
Just curious, but when blood tests were taken initially (and presumably many were, from various doctors) weren't your calcium levels abnormally elevated? Or did all those doctors miss or dismiss it?
It's extraordinary how often doctors, particularly with female patients, (although men certainly are not totally exempt either) tell their patients that the cause of their symptoms is psychological:.....in their heads/depression/menopause/empty nest syndrome et al. (There, there, little girl, pop an antidepressant and don't bother me with all your foolishness). That's not to say that many times psychological issues can run parallel with, mimic and/or cause, real organic illness. Still, good for you for being so proactive and insisting on further evaluation and tests.
Let us know how your appointment w/the endo goes in July. And if you need further information about this illness, please feel free to come back here and ask...
I have been seen 8 times in emergency rooms in the past 2 years, due to outrageously high blood pressure that still is not under control. Each doctor I see--be it ER, PCM, or those DR's they have referred me to all seem to 'pass the buck'. I have seen different ER doctor's, 3 PCM's, physical therapist, chiropractors, cardiologists, urologists, etc.---all dismissed the calcium levels, cat scans, and mri's--no one put the test results all together for a diagnosis. I have been very unhappy with the local care I have access to--I finally could not waste any more of my life and went to Mayo clinic in Florida last month. The local doctors have known my symptoms these past 2 years-- the bone scans showed decreasing bone density--my hip is damaged now and strangely keeps popping out of joint, I have kidney problems resulting in almost chronic kidney infections. I am on Cipro almost continuously, and have pain in my kidneys, abdominal pain, and back/joint pain. I had lost all faith in the medical profession and was truly amazed that my doctors seemed to discount them. For the blood pressure problems they prescribed hydrochlorizide (diuretic--huge mistake). Mayo Clinic caught the problem right away, as did an urgent care center I just recently went to for emergency blood pressure problems. My primary care physician has told me such things as 'think happy thoughts' and 'envision beaches' (?) this whole time. The PCM did not feel any of these problems that have plagued me for 2 years was severe enough to impair my life. I only got referrals to specialist after making numerous appts and being a pain in the PCm's butt--I am barely functioning.--Unfortunately, I need the PCM's referral to get anywhere, so I kept on plugging along with them. My PCM has not returned my calls or responded to the faxes from Mayo, and so I have elected to return to Mayo clinic because I cannot get any help here. I want to get surgery scheduled as soon as possible so I can get back to my life, but can't get in to talk to an endocrinologist until July. Thank you so much for your post. Any info is so welcomed.
What a horror story. Just for my own edification, is a PCM a Primary Care Manager? And does that mean he/she is an MD?
He's not returning your calls nor faxes from the Mayo Clinic?????.
This is incredible. I'd fire off a letter that if he does not respond immediately and in a substantive manner to the Mayo, he'll have a malpractice lawsuit up his a** so fast, he won't know what hit him
You can't go wrong with the Mayo Clinic, that's for sure.
Who is monitoring your blood pressure in the meantime and what med(s) are you on for it presently? Thank goodness someone caught the thiazide situation. Jeez. What were your BP #s before meds? And now?
When I read "think happy thoughts" and "envision beaches" I let out such a roar of "OH PUL-EASE!" Promise me you'll never go back to that doctor.
If there ever was a candidate for hyperparathyroidism surgery, it sounds like you. You'll be okay waiting until July. The only thing I can suggest is to check in with Mayo and ask to be notified if there are any earlier openings to see the endo doc. And even then, bug them once a week anyway, since often these requests get lost, buried and forgotten.
To zuzu-Thanks for your response. I am currently on Avapro, and my blood pressure reading is 150/90. When I went to the emergency rooms in the past my blood pressures fluctuated around 210/102--while on hydrochlorothiazide. The blood pressure is just impossible to get good control over with the hyperparathyroidism. I am anxiously looking forward to having surgery in hopes that my quality of life is better. I keep wondering if taking the hydrochlorothiazide triggered my hyperparathyriodism or if it just increased an existing but minor imbalance problem?