I've got something, but who knows what?

Well, I have osteoporosis/osteopenia/low Vitamin D, but nobody seems to be able to tell what exactly is going on.

4 yrs ago, I had a baseline DEXA scan at a major university, as I was going through menopause and a few weeks later got a call that I had osteoporosis, and where did they want me to send the Fosamax prescription. So, I took the pill for a year, and then I changed jobs, and decided to get a new PCP (one who was convenient to my office). New PCP suggested a Vitamin D test - level was 7. So they put me on D3, and a few months later, reading was low normal (30).
The I was diagnosed with breast cancer. I asked the doctor about AIs and osteoporosis, and they kept insisting that I couldn't possibly have osteoporosis, as I was too young (59) and ER+ breast cancer patients tend to have very dense bones. Got my test results from U, I was mostly osteopenic, with a couple of spots in my lower back osteoporotic.
Went on tamoxifen, which helps preserve bone strength.
I have had serious bone pain, so went to back dr - lots of bulging discs, lots of arthritis. Nothing they can do - referrals to PT and suggested a chiropractor. Referral to endocrinologist.

She realized I had scoliosis, so did a DEXA of forearm --3.5, which really scared me. Also did Calcium studies, parathyroid studies. They're high - and go up and down together. Parathyroid is around 80, calcium is between 10 and 11, occasionally over 11. Once, it was 12. But these aren't really diagnostic levels. D was under 10 again, even though I was taking 2000 IU per day with calcium.
I must admit, I kind of liked the idea of having a parathyroid tumor. 1. It's a diagnosis. 2. The symptoms of parathyroidism felt so right - bone pain, moodiness, depression, general aches and pains, never feeling good. 3. There is something they can do about it.

But as long as my calcium isn't over 12 on a regular basis, doc isn't prepared to refer me as a surgical candidate.
In the meantime, back on 50,000 IUs every month (D3). Back to 25.
Prescription expired - D back down to 10.
So, she puts me on 50,000 IU daily - I called for my results today -
The nurse said (could I make this up) that my readings were exactly what they had been a month ago, and they wanted to put me on 50,000 IU. So, something's wrong with somebody's paperwork, somewhere. (Charges were $475 for blood tests).

I am exasperated and frustrated. I'm moody and tired, and I want an answer of some sort.

Any ideas?

By SantaFe
Posted October 13, 2009 at 9:35 pm
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Icandothis,

Over on Grandmother's Journal there is a group of women discussing breast cancer and osteo and how frustrating the medical system is. You might get some answers, and you will definitely get some support and sympatico. Here's a shortcut to get there:
http://www.inspire.com/GRANDmother19/journal/sharing-with-tough-minded-frie nds-with-great-balls-of-fire/#replies

Like you, I have multiple and complex medical problems going on at the same time. The most important step I took in the last 18 months to deal with all this medical mischief and confusion was to hire and fire 5 different doctors until I found the right one for me. I mean I was FLYING thru docs. The incompetence and lack of caring is just criminal.
I finally called local pharmacists and picked their brains and kept getting my new brilliant doc's name repeatedly, so I feel I now have a real advocate to get me thru all this confusion. He emails me my labs, I can email him any time with questions, and when I give him new research to read, he actually reads it and is excited to learn something new and willing to experiment with me, giving me his professional opinions and experience. He also found me the right type of cardiologist that specializes in my particular heart problem.

I guess this is a long way of saying that having the right doctor makes all the difference when you've got to deal with so many different issues and need to pull all the info together. And it was really worth the effort and expense it took to find one.
Good luck to you,
Santa Fe

By millie123
Posted October 14, 2009 at 8:38 am
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I would definitely see another endocrinologist and investigate that parathyroid thing more. I would also add magnesium to your supplements. Something's not right here, but I'm like you. I don't have enough knowledge to figure it out. If you read through all the old posts, you'll find an email address for Dr. Norman down in Florida who does the MIRP surgery. Perhaps you could email him all your tests and ask for an opinion? I don't know. Where are you located?

By cm81256
Posted October 14, 2009 at 9:41 am
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I really strongly feel you have hyperparathyroidism. All the symptoms you describe are symptoms of this. The tiredness, not feeling well and your calcium levels being on the high side and more especially the high PTH levels my PTH levels are not out of range high but on the high normal side and my calcium levels are high though. I don't know but it all sounds to me like hyperparathroidism. I am not a DR but from just reading this............good luck on getting to the bottom of this.

By SequoiaHealth
Posted October 15, 2009 at 8:18 am
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Hi ICanDoThis:
One thing to remember is vitamin D is like gas in your car. The faster the car goes the more you use. It can take large amounts of vitamin D for a long time if you are using it all up. With cancer or any condition like that, you are going to use A LOT of vitaminD.

So as an example I take 5000 a day of D. My body uses 4500 and I can store 500. My blood levels slowly come-up. Once I stop the D or go to 2000 like in your case, I start having a daily deficit of 2500 and my blood levels go down again.

I would suggest going to Dr. Cannell’s site at www.vitamindcouncil.org and follow his formula and recommendations.. They are very well documented.

I hope this helps and makes some sense of it all.

If you have further questions or you would like to join our support group please feel free to email me at bebonestrong@sequoiahealth.com.

Woody McMahon

By paaatriot101
Posted November 6, 2009 at 10:24 pm
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check out the florida doctor www.parathyroid.com
You have 4 parathyroid glands about the size of a grain of rice. Like you I am only 48 but have ostopenia/ and osteoarthritis, elevated calcium levels, etc... Unfortunately in my case before we could figure out a Parathyroid issue dx It was determined I have throat cancer, somewhere under the mess could be parathyroid issues as well, but kind of a moot point for me right now, but check out the site and the doc good info there, very under diagnosed problem. Hang In there:)

By rosie5804
Posted November 7, 2009 at 8:37 am
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There is hope and treatment for you. Find a good endocrinologist perhaps at your state's University Medical School/hospital. I'm the first patient in 30 years of practice that my family doctor has seen. I take copies of my lab work to each doctor I see - the lab done by my onocologist (breast CA) showing high calcium (11.3) went with me to the rheumatologist who then did a PTH (parathyroid hormone) which was a high 247 - Now I know the cause for most of my problems -

Untreated parathyroidism puts you at risk for developing other types of cancers.

High calcium causes osteoporosis and also causes abnormal heart beats...won't my cardiologist be surprised when I see him for my six mo. check.

So far I haven't found that the glands contriubte to liver cirrhosis.

You have to keep your doctors informed.
see:
www.parathyroid.com/parathyroid-symptoms.htm

By boomerbodycoach
Posted November 7, 2009 at 12:55 pm
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What a brilliant idea! ask the pharmacists! I also ask my friends who are OR nurses! (or other nurses who work with these specialties). They KNOW who is doing a good job, who is getting their patients better, (or not). Just a thought!
mb

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