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Author Topic: Does Anyone Have Any Experience With Hyperparathyroid?  (Read 54 times)

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Offline Teril

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Does Anyone Have Any Experience With Hyperparathyroid?
« on: May 05, 2014, 08:57:19 AM »
I began seeing a new Dr. the end of last year (2013) who specializes in various types of hormone therapy, including thyroid, to manage what was diagnosed as Hashimotos Hypothyroiditis about 20 years ago.  I chose him because he seemed to be a "non-scary" type from some info I had about him and based on a phone conversation with him before my first visit. At the first visit I took the last blood tests I had done by a Dr. (in a different specialty) earlier in the year to him.  I looked at the tests again before my appointment and noticed that my calcium level was high - 11.4. (Normal range 8.8-10.2)  My former Dr. had not mentioned that so I looked it up online and found a lot of information on parathyroid and hyperparathyroid.  I asked the new Dr. if I should be concerned with the calcium level and he said no, that the Hashmotos could cause that to be elevated.  He ran VERY extensive blood work which we discussed at the next appointment.

As with most doctors today, the actual time face-to-face with doctors is brief so the appointment to go over the blood tests basically consisted of him going over specifics on the tests fairly quickly, but explained when I asked him to repeat something I didn't catch as I made notes.  One of the things he mentioned was that I was extremely low in Vit. D so he put me on a high supplement of that along with my thyroid med.

When I came home and went over the results I noticed that the calcium was now 10.5 and not out of range for these tests which have the normal range of 8.5-10.5.  However, there was something called PTH Intact that was out of range (47.20 out of the normal range of 3.0-25.00) which the Dr. had not circled nor mentioned. I'm sure I looked that test up at the time and discovered it is the Parathyroid Hormone test but for some reason I didn't freak out then.  I don't think my Dr. not mentioning this to me was an accident; he knows about my HA, which I repeat at every visit and I think he didn't want to scare me and wanted to see how I did on the thyroid meds, Vit. D, etc. at my next blood tests which I had taken two weeks ago.  My appointment to get those results is this Thursday so last night I pulled out the test results again and spent most of yesterday reading everything I could find about especially the PTH test and NOW I'm super freaking out to the point I shook with fear most of yesterday, didn't sleep much last night, and am sitting her shaking as I write this.

My blood work (including the low Vit. D as well as kidney function tests in addition to the calcium & PTH) results fit into classic hyperparathyroid.  (A lot of good info is on the parathyroid.com site, although I tried my best to find other sites because apparently the only treatment for this condition is surgery!!)  In short, hyperparathyroid is caused by a benign tumor on the parathyroid gland.  It is also apparently considered somewhat rare so most people have never heard of the parathyroid glands (I hadn't) and even many endocrinologists don't see it much, if at all. It goes undiagnosed for years in many cases because doctors attribute the high calcium to other issues.

At any rate, the good news is that it is apparently highly treatable by having the tumor removed and the Dr. who wrote the parathyroid.com site is considered one of or "the" experts on this disease and has performed a gazillion of these surgeries which he does by a micro procedure that leaves a tiny scar.  The other good news is that I live only about two hours from his facility and people go there from all over the country to get the surgery. 

The bad/scary news is that...well this has caused my HA to shoot off the charts and I am literally terrified and am just counting down the hours until I go to my appointment and hear this inevitable news of needing surgery from the Dr.  Some glands on the side of my throat have been swollen and a bit painful for the last week so I had been obsessing about thyroid nodules, or worse, but that was the elusive "might" - this situation looks pretty certain since everything I have read says there is no other explanation for the PTH levels and/or the combination of calcium & PTH levels.  Also, I am single, live alone, have no children and no close friends in the area, the only person in my life really is my mother who is 80 and just began having some serious blood pressure issues a couple of months ago.  It would be really hard on her to go with me for the surgery and based on what I read yesterday, particularly since I do live relatively close to that center, it is the only place I would want to have it done based on the experience of the Dr.

The surgery is apparently not an "emergency" as having a malignant tumor would be, but until the tumor is removed a person gradually becomes sicker with a variety of symptoms - the most prominent is the leeching of calcium out of the bones.  According to the websites I read, without surgery people eventually die of other illnesses but that were basically caused by the hyperparathyroid; the current studies indicate 20 years after diagnosis and without surgery as the longest lifespan.

Has anyone ever had this disease or know someone who has or has ANY information that would help calm me a bit?  Thank you for reading this and for any input.  Have I mentioned I'm terrified?
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