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Old 10-22-2006, 10:26 PM   #1
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Post High parathyroid levels-osteoporosis next?

Recently, external exam showed enlarged thyroid regardless of normal thyroid hormone revealed in bloodwork (I take Levoxyl due to hypothroidism) and other bloodwork also showed that my parathyroid levels are twice the high-normal range. Test after test apparently showed no pathology, so endocrinologist says it's a "fluke." Maternal grandmother had osteoporosis and I've had a dowager's hump since I was in my 20's... but, according to the endo, my bone density looks good. Anyone else experience anything remotely similar? I'm not convinced that the high PTH levels are not indicative of "something."

 
Old 10-23-2006, 12:36 PM   #2
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Re: High parathyroid levels-osteoporosis next?

Quote:
Originally Posted by kathymars
Recently, external exam showed enlarged thyroid regardless of normal thyroid hormone revealed in bloodwork (I take Levoxyl due to hypothroidism) and other bloodwork also showed that my parathyroid levels are twice the high-normal range. Test after test apparently showed no pathology, so endocrinologist says it's a "fluke." Maternal grandmother had osteoporosis and I've had a dowager's hump since I was in my 20's... but, according to the endo, my bone density looks good. Anyone else experience anything remotely similar? I'm not convinced that the high PTH levels are not indicative of "something."
Hi Kathy: I'm afraid that I don't have any experience with this, but does your insurance pay for a second opinion? There are several things I don't get, which might be cleared up by a second doc.

If you have a dowagers hump, that means you have had compression fractures, but your t-score is normal??? It's possible to sustain a fracture in the osteopenia range (-1 to -2.5 Who definintion), which might explain your docs response, but it still doesn't add up. If your PTH is that high, the doc would have to rule out several problem that cause this (kidney prob, parathyroid tumor etc.), but sounds like he hasn't done this. When you say that your test show no pathology, do you mean that they have tested you for a parathyroid tumor, or thyroid tumor, but there wasn't one? High PTH are always indicative of something, so don't leave it here, where it sounds like you're not getting proper treatment, try to get some extra help. Is your serum calcium high or low? You also need to clear up the normal thyroid bloodwork v the enlarged thyroid. If the bloodwork is normal why is the gland enlarged? Did your doc tell you what your t-score was? Normal is anything better than -1 Osteopenia -1 to -2.5 Osteoporosis -2.5 and below. This is confusing, so I hope you can get further help.

Good Luck

Last edited by DesertBloom; 10-23-2006 at 01:07 PM.

 
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Old 10-24-2006, 12:09 AM   #3
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Re: High parathyroid levels-osteoporosis next?

Thank you so much, DesertBloom, for responding to my post! To answer some of your questions, I offer the following additional information:
-- Originally, my PCP sent me to the endocrinologist because during one of my regular blood draws it was discovered that the PTH levels were high and the serum calcium levels were borderline low. She knew that my grandmother had osteoporosis and that I was concerned about the possibility that I could have it as well. Blood work was repeated with the same results, so she referred me to the endo.
-- I've not mentioned the dowager's hump to any of my doctors here in FL (I moved here from San Diego, CA about a year ago) but it was diagnosed several years ago by a chiropractor; my long hair covers it up so it is possible that no one noticed it. Until recently, after researching it on the Internet (because it's causing me some fairly severe pain right now) I thought that a dowager's hump was just a hereditary oddity. Since my grandmother also had one and had extreme osteoporosis, I am more concerned that my high PTH levels are perhaps a precursor to the disease in me and I want to do whatever I can to limit its effects. What is a t-score? Is it connected to the bone density test? No one explained the results of the bone density test except to say that it's normal for my age (56).
-- I also have osteoarthritis, degerative disc and joint disease was diagnosed when I was 31, a recent MRI revealed that I have herniated discs (T4 and T5), about 10 years ago, x-rays revealed that I'd fractured my coccyx many years before, and, like my mother, my right hip is congenitally deformed (the ball doesn't fit completely in the socket). Clinical depression was diagnosed 20 years ago and is somewhat resistant to medication; I have a stomach ulcer and mild colitis; fibromyalgia; migraine disease; chronic sinusitis and allergies; and I'm menopausal. I can't do HRT because I had a DVT 20 years ago and tested positive for the Lieden mutation, so I take the soy and Estroven to try to help me with menopausal symptoms. MSM/Glucosamine helped tremendously with arthritis, especially in my knees and other areas affected by OA.
--The endocrinologist ordered several tests, some of which were a thyroid ultrasound (and while having the ultrasound, I asked the tech to check the parathyroid glands too), 24-hour urine collection to check for calcium loss, a bone density test, and repeat blood work. The ultrasound showed no pathology... he had thought that because my thyroid gland was enlarged on his external exam, that I could have a tumor and he was surprised that the ultrasound showed nothing out of the ordinary. My PCP thinks that perhaps he was mistaken in his extrenal exam, but if he's a specialist, it seems logical that he would be an expert in determining whether a thyroid gland is enlarged or not. The urine showed no calcium loss. The bone density test was also normal for my age, the doctor said. All the blood work came back normal except for the high PTH levels and still low-normal serum calcium. The blood work included a test for ionized calcium, I believe, and that also came back normal. My PCP had ordered this test prior to referring me to the endo and it was not normal at that time, it showed that there was, indeed, a problem with the parathyroid-calcium connection. Upon telling me that the high PTH level was "just a fluke" the endocrinologist suggested that we repeat the blood work in three months. I'm scheduled to do that in mid-November.
-- There has never been any testing on my kidneys.
-- I had tried taking Cymbalta for three weeks and the side effects were harsh... I ended up with thrush and a slew of other problems, so it was thought that perhaps the odd results of the blood work might be connected to that. Without a definitive answer, doctors grab at straws.
-- I'm not sure if my insurance will cover another opinion, but it's been a while since I saw the endocrinologist, so maybe my PCP will refer me to someone else, especially if my November blood work shows the same anomalies. My insurance is with Health First, so physicians have to be associated with this network. I have Medicare because I'm disabled.
-- Something else I should add is that my body often doesn't present syptoms like "normal" people do and tests often come out negative when they are, in fact, positive. I am really sensitive to medications, too. My PCP told me that I'm a "difficult" patient because solving my various medical issues is a challenge. The specialists I've seen have been frustrated by what has perplexed them and often, have dismissed me as a patient, saying that they can't do anything for me. I know that my frustrations are even greater.

Again, thank you so much for responding to my post. I hope this information helps.

 
Old 10-24-2006, 06:28 PM   #4
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Re: High parathyroid levels-osteoporosis next?

Hi Kathy: I just wanted to tell you that I will get back to you by the weekend at the lastest, because I'm swamped right now with my med problems and a myriad of tests that I have to complete. So hang in there, and don't get worried, I'm sure it will all be figured out. If you want to read about Osteoporosis, even though your doc says you don't have it, there are many good govt. websites that could help to explain this, if you do indeed have it. National Osteo Found, Foundation for Osteo Research and Education, National Inst. of Health, are just a few you could read if you want to understand more about this problem and it's symptoms/causes/prevention and treatment.

There are two other things I wanted to explain, while I have a few minutes that might ease your mind some:

A t-score is a value used to interpret your bone mineral density results, which are based on the normal result for someone of your age, sex, etc. If you had a dexa scan to check your bone mineral density, your t-score would be listed on that report, which you could get from your doctor. According to the World Health Org. a normal value would be any score better than -1, Osteopenia (bone thinning) would be a score between -1 and -2.5, Osteoporosis (bone disease) is any score lower than -2.5. Osteopenia is a term used to describe bone loss or thinning bone; this is not a bone disease, like Osteoporosis, but a warning sign used to describe the stage of bone loss before Osteoporosis. If you have Osteopenia you should take precautions to prevent this loss from turning into Osteoporosis. The treatments for Osteoporosis are almost identical to Osteopenia treatment. There are different things you can do to help prevent Osteoporosis, so reading a good Osteoporosis website or book would help. Generally a diet with increased calcium (1200 mg to 1500 in divided doses daily) and vitamin D intake is suggested along with weight bearing exercises (3 times a week). Some doctors will put patients on various Osteoporosis drugs, if necessary, and these would depend on which is best for your particular health situation.

Widows/Dowagers hump generally occurs after a vertebral fracture causing the spine to curve or fall forward just below or at the shoulder level called Kyphosis and sometimes referred to as C curve of the upper spine. Loss of height is common when you have Osteoporosis. Some fractures go undiagnosed, because the pain can “sometimes” be temporary and can subside after a short period of time. Then there are other more severe fractures that don’t have the same symptoms I just mentioned.


Pam

Last edited by DesertBloom; 10-24-2006 at 06:49 PM.

 
Old 10-25-2006, 08:19 PM   #5
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Pam, thank you so, so much for responding to my posts. You have cleared up so many of my questions and concerns. I will definitely check out some of the sites on osteoporosis that you have listed. Thank you again!!!

 
Old 10-26-2006, 02:37 PM   #6
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Re: High parathyroid levels-osteoporosis next?

Hi, another one of your problems could be the levoxyl. That stuff was poison to me. I had chest pains and all kinds of weird symptoms and it was the thyroid meds. They switched me back to Levothroid and the least allergic and thryoid problems with. I feel 100%. I have all the weird things you have with tests that come out negative when they aren't. It is a rare type of thyroid disease. If I take asprin it is over dosed. So I sympathize with you and have osteopenia and got much worse when on untithroid and levoxyl. You might want to ask your endo to change things. Good luck

 
Old 10-26-2006, 03:56 PM   #7
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Thanks for your post. Every bit of information helps and to know that others are dealing with similar problems is a comfort. I'm not alone!

 
Old 10-26-2006, 05:58 PM   #8
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Re: High parathyroid levels-osteoporosis next?

Hi Kathy: If you go to the NOF, you can go to the site and search it for any terms you might be interested in i.e. widows hump, or t-scores plus many other things.

I hope you find this helpful, but at least it will give you a good basis for knowledge, at this point. All your thyroid/parathyroid problems are a mystery to me, but I have had a similar situation where my serum ionized calcium level was elevated (different test than total calcium), but my pth was normal. The doctor found 2 thyroid nodules, but for the moment they aren't going to do anything about it. I heard basically the same thing that you heard, and that I must just be one of those people that doesn't present anylizable blood results, and that my calcium must just run a little high from normal. I find this ridiculous, but am in the middle of trying to figure it out with a specialist at a Univ Hospital tomorrow, right near the fire in CA, so we'll see if I make it. If I can gain any good info I'll pass it along. I think you should do some research on the TSH you're taking since the other poster mentioned having many problems with it, and these are the things you need to know.

There has been a debate about TSH (thyroid surpressing hormones) for years, and whether or not it causes osteoporosis, but from what I've read the decisions seems to be split 50-50. Some Endo's won't prescirbe it due to the "so called" risk of getting Osteo from it, and the other 50% believes that's untrue, so you and your doctor will have to decide if this is and issue or not since the research is very misleading and split right down the middle.

One thing I wanted to add, is that since you have OA, spinal/disc probs that could "possibly" cause the widows hump, however the majority of health professionals believe the kyphosis (fracture curve) is mainly caused by Osteopenia (bone thinning) and Osteoporosis (bone disease). I also have OA, spinal stenosis, dener disc disease, nerve damage, and 7 failed lumbar fusion--each one fractured several months to a year or two after each surgery. The reason I bring this up is because I have real bad posture, really bent forward, but it isn't the classical hump, which I'm told is due to my back problems, but I'm NOT totally convince on that since my t-score is very low and at the spontaneous fracture level. My grandmother had it also, and her's went untreated, and she lost a lot of height and had a very prominent hump. She never complained about any pain, so I don't think she ever mentioned it to a doctor, but back in the 50's this was something they felt you just had to live with, and of course there were NO meds back then to treat it. Saddly she eventually died from complications due to a fractured hip, she didn't last long after that happened (a couple of weeks) but she did live a very long life (93), but it's sad the meds weren't available for her.

Unfortunately complications from fractures (strokes etc) are very life threatening, so we all need to do everything we can to slow or prevent Osteoporosis, because it is preventable .

Talk to you later, and hang in there...

All the luck in the world is headed your way

Pam

Last edited by DesertBloom; 10-26-2006 at 06:19 PM.

 
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