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Old 04-03-2013, 10:36 PM   #1
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Confused about Parathyroidism

About five years ago I was diagnosed with hypothyroidism. Although treatment with synthroid seemed to work, I continued with periods of what I believed were hypothyroid symptoms. My doctors pretty much ignored this. Recently, I had some additional blood work done that showed a calcium of 10.5 and vitamin D level of 13. My doctor put me on high dose of vitamin D, reordered the calcium and ordered a PTH. Calcium was 10.4 and PTH was 105.5 and I was told I probably had parathyroidism. My doctor has downplayed these results and has said that all it needs is monitoring and that very few patients who have parathyroidism go onto to get surgery. I am very surprised at this. Since parathyroidism could explain some of the symptoms I have had, I don't understand why we wouldn't at least continue testing to ensure I really have this. I also am surprised at her statement that most patients are just monitored. This isn't what I have read online - I have read that people under 50 (I am 48) should get surgery because parathryoidism can cause bone loss and cardiovascular problems. So, I am confused. Are my lab results pretty normal and that's why she isn't concerned? Does anyone know of a good endocrinologist in Northern Virginia that I can go to for a second opinion?

 
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Old 06-17-2013, 10:17 PM   #2
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Re: Confused about Parathyroidism

Just wondering if you found another doctor more willing to investigate your test results. I had an experience much like yours (very similar numbers and run-around for awhile). I eventually found an excellent internal medicine specialist who helped me. About three years ago I had surgery and the surgeon found parathyroid hyperplasia, so removed 3-1/2 of my parathyroid glands.

By the time of the surgery, I had lost about 45 pounds, couldn't eat hardly anything, hurt all over, couldn't concentrate, and just generally felt yucky. It took a little time for me to feel better, but things have been great since. All I do now is chew one extra-strength Tums every day.

I will always be grateful to that internal medicine doc who set me on the right path after another doc had said, "just be glad you're losing weight." (yes...I was overweight and needed to lose some...I just wasn't trying!)

Your lab results aren't normal; taking vitamin D isn't going to help (I tried that at one point, too). I'd ask for another opinion. Sorry...I can't help with a recommendation for your area.

I realize your post was awhile ago. If you're still monitoring, I'd like to hear if you have an update.

 
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Old 06-17-2013, 10:46 PM   #3
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Re: Confused about Parathyroidism

Your hyperparathyroidism needs treated surgically. Your PTH is double what it should be and at your age your calcium should be under 10.1. You are at risk for serious consequences including stroke, kidney stones, cardiac arrythmias, osteoporosis, and breast cancer because of it. I would see a different internist and a surgeon. You can feel sleepy, have headaches and achy muscles from this and will feel better with proper treatment.

 
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Old 06-18-2013, 05:58 AM   #4
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Re: Confused about Parathyroidism

ladybud..I see your postings all the time and you seem to know a lot of interesting things. I am currently being treated with MCTD and just came up with elevated calcium. My vitamin D is always low so I take supplements.
Last month my calcium was 10.0 and 3 weeks later it jumped to 10.5. Doctor says wait and see. I hate that remark and am trying to find out what could have raised it so quickly. Does it usually go up fast or slowly over time? I seem to be finding different reasons for it's elevation and I'm very confused. How can I find out if it's a medication or a disease? They didn't do a PTH yet but my thyroid number is a little high 180. Everything comes back borderline and always a wait and see answer. Can you help with some of these questions? There are several people whom I consider "to know a lot" on these boards and you are one of them. I realize you are not a doctor but sometimes a patient gives a clearer picture or answer. Thank you....Linda

 
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Old 06-18-2013, 01:33 PM   #5
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Re: Confused about Parathyroidism

bwoman, I ended up going to an endocrinologist who suggested that I first take high levels of vitamin D to raise it from 13 to 30 (which was miserable). When there was no change in my PTH levels he suggested surgery -which I should be having sometime next month. Last I talked to her, my primary care doctor still said that I should be monitored. She is so convinced of this that she told me that no one would ever do surgery on me. What I found really odd about this statement is that at the time she said it I hadn't asked any doctor if surgery was an option. The recommendation to have surgery came from my endocrinologist, not me. Having two doctors give me two radically different treatment options has been confusing to me and has changed the way I view healthcare.

Last edited by Administrator; 10-12-2013 at 11:09 PM.

 
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Old 06-18-2013, 02:37 PM   #6
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Re: Confused about Parathyroidism

Nietzak - So glad to hear that you're now with an endocrine who realizes the need for surgical treatment for the parathyroid problems. I hope you have a surgeon who is experienced in the surgery.

I hear you with the frustration of having two very different opinions. I just went through this (again!) with a major foot problem (which is why I have the really ugly foot picture on this board discussion!). One doc said no way to fix but a major surgery involving several parts of the foot. Second opinion told me to do some stretching exercises!! In frustration, I asked my knee orthopedic specialist for advice; he said "get a third opinion" and gave me a recommendation for a specialist to see. After some hesitation, the third doctor (who is in the same practice as the one who told me to do stretching) finally told me NO amount of stretching was EVER gonna fix this and I needed the surgery.
I agree - very frustrating to get such varying advice from medical providers.

Good luck with the surgery and feel free to post questions for those of us who've had the surgery.

 
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Old 06-19-2013, 08:27 PM   #7
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Re: Confused about Parathyroidism

Quote:
Originally Posted by NJLinda View Post
ladybud..I see your postings all the time and you seem to know a lot of interesting things. I am currently being treated with MCTD and just came up with elevated calcium. My vitamin D is always low so I take supplements.
Last month my calcium was 10.0 and 3 weeks later it jumped to 10.5. Doctor says wait and see. I hate that remark and am trying to find out what could have raised it so quickly. Does it usually go up fast or slowly over time? I seem to be finding different reasons for it's elevation and I'm very confused. How can I find out if it's a medication or a disease? They didn't do a PTH yet but my thyroid number is a little high 180. Everything comes back borderline and always a wait and see answer. Can you help with some of these questions? There are several people whom I consider "to know a lot" on these boards and you are one of them. I realize you are not a doctor but sometimes a patient gives a clearer picture or answer. Thank you....Linda
NJLinda -- I have no experience with any link between thyroid and parathyroid issues and I don't know whether calcium levels go up fact or slowly. I do know they can jump around some. If your parathyroid gland/s are "misfiring," it makes sense that the levels could jump around.

But...if your calcium level is high (which yours is/was), I don't understand why a doctor doesn't go ahead with a PTH test, which gives another part to the puzzle. As I recall, it's just a blood test...a little pricier than some, but I don't remember it being outrageously expensive. I would push to have the PTH test if I were you.

(I'm the one who had 3-1/2 parathyroid glands removed for parathyroid hyperplasia about 3 years ago.)

 
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Old 06-19-2013, 08:44 PM   #8
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Re: Confused about Parathyroidism

My wife (38 yrs old) starting having the same issues after our 1st child in 2005 (she was 31 at the time). She lost all her baby weight and was back at 120lbs in a matter of weeks... and thought it was great. Little did she know she was entering a rollercoaster of thyroid hormones... going from high to low... eventually settling in with hyperthyroidism and parathyroid issues.

She was treated with synthetic hormone replacement, Vitamin D, Calcium, etc. for the last 5-6 years... she was always having issues with symptoms... tired, constipation, heart flutters, etc.

Last year she started getting a goiter... and ended up having her thyroid out late last year. She was very nervous about getting it out and was doing everything she could not to have that happen.. even delaying surgery 2-3 months until she was so miserable she couldn't stand it.. (it was swelling to the point of effecting her swallowing) Her thyroid lobes were almost 9cm... (I think normal are 3cm each) so it was very big.

After she had it out... she is adamant she should have done it a year or two earlier and feels like a new person. She is back to the woman I married ... we didn't realize how bad it had gotten until she had it removed.

 
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Old 06-20-2013, 05:14 PM   #9
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Re: Confused about Parathyroidism

Calcium levels do fluctuate, more so with hyperparathyroidism. Sometimes they fluctuate between high normal and high, and a 0.5 point difference is not unusual. I agree that the PTH should just be done. There is no reason to wait and see, might as well just know now whether there is a problem or not. Vit D aids calcium absorption so that may make the calcium go higher in the blood, but if PTH is high, you are losing calcium from the bones where it is needed. So PTH causes calcium to move from bones into blood and kidneys try to get rid of the excess thru urine, hence the tendency to form calcium kidney stones. I would ask to get it checked now, because if it is high, other tests will be needed plus consults, all of which take time, before treatment is decided and carried out. Thank you for your nice comments, NJLinda. I hope you get all this sorted out. Nietzak, I totally disagree with your Dr that said all you need is monitoring. This needs to be treated, and the high dose Vit D supplements may actually be making things worse. I would see a good endocrinologist who specializes in these things.

 
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