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Old 05-27-2011, 03:50 PM   #21
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Another possible cause of high calcium is vitamin D overdose, but I suppose it's pretty rare. Here's more info.
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Old 05-27-2011, 03:56 PM   #22
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Another possible cause of high calcium is vitamin D overdose, but I suppose it's pretty rare. Here's more info.
Yes but In that case her PTH would have been low. With her calcium levels at 11.5 normal parathyroids would have shut down and retired to Florida.
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Old 05-28-2011, 10:22 AM   #23
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I realize that at this point, this is only interesting to someone in the same situation, but for completeness...

After reviewing the articles that the doc provided me with, I'm more rather than less convinced that surgery is indicated (see attached). I'm also wondering once more whether we need a new doc, which would be too bad because we have a great relationship with this one.

The attached has the conclusions for 10 of the studies that the doc provided me with.
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File Type: pdf ParaThyroidStudies.pdf (38.8 KB, 11 views)
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Old 05-28-2011, 11:19 AM   #24
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Al, this is really one of those situations where the decision is not clearcut. If Lena develops symptoms progress over time, or if she is developing complications (e.g. kidney stones) then surgery would be the best choice. But it is possible to make a good case for watchful waiting. As I said previously, if that's Lena's decision, she needs regular monitoring. Kudos for taking the time to learn about the interaction of PTH and Ca++ levels!
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Old 05-28-2011, 06:07 PM   #25
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Thanks, M. Luckily, this isn't that serious of an issue, at least compared with others in the past. BTW, it's possible that the adenoma resulted for the head/neck radiation she received as part of a brain operation (doohickey threaded up through blood vessels under x-ray control).

So many say "I didn't think I was tired/cranky/had cognitive issues before the surgery, but afterward I felt so much better." A good friend (another bass player!) went through this, and reported exactly that. She now leads Zumba classes.

Lena says she feels fine now. I, on the other hand, often feel old, and would elect to have the op in a second. It even makes me want to get my calcium checked!

Getting a second opinion will involve hours of travel -- do you think it's possible to have the medical data sent to someone, and have a phone consultation??
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Old 05-28-2011, 06:38 PM   #26
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Getting a second opinion will involve hours of travel -- do you think it's possible to have the medical data sent to someone, and have a phone consultation??
Teleconsultation is very common these days. I'm not sure about the logistics of referral in your system. If you are paying for it I guess you can consult anybody you want but it would at least be courteous to involve Lena's own doc in a referral. Also, if the physician being consulted is out of state, he or she needs to hold a licence in California and there may be liability issues. As to whom to consult, I'm sure Rich_in_Tampa would be able to advise. The Mayo Clinic would be a good start, but CA is larger than many countries and there must be many experts in this area within the state. And of course you need to check what Lena's insurance would cover.

What does Lena want to do?
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Old 05-28-2011, 07:00 PM   #27
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Lena definitely wants a second opinion or consultation, and is currently leaning towards surgery. She is of course the boss on this issue.

I'm also leaning towards surgery, but would love to be convinced to watch and wait.
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Old 07-12-2011, 02:25 PM   #28
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We had a consultation with a local surgeon. He concurred that we should have surgery, so the decision will be whether to have him do it (he's done about 100 over his career -- he's 68) or someone who does many more of these ops down at UCSF. Sounds like the latter is the better choice.

I asked "Will this go above the $5,000 deductible?" Silly me, the total cost will be about $20,000. So that means it's the same cost no matter where we have it done -- it will just be more hassle to go down the bay area.
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Old 07-12-2011, 02:42 PM   #29
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I don't know anything about Lena's illness, but I imagine the past few weeks have been difficult for the two of you.

Perhaps reaching this decision and moving forward will take some of the pressure off. Keep us updated Al.
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Old 07-12-2011, 02:55 PM   #30
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This is one of those procedures I would definitely go to a center where the surgeon does a lot. I'm guessing at a specialty clinic like UCSF their surgeons may do 100+ a year rather than in a career. RIT may have more insight on this as he likely referred many over his career. I see the rare complications - usually hypocalcemia - that may resolve but sometimes does not.

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Old 07-12-2011, 03:01 PM   #31
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I don't know anything about Lena's illness, but I imagine the past few weeks have been difficult for the two of you.

Perhaps reaching this decision and moving forward will take some of the pressure off. Keep us updated Al.
Thanks, BBBamI. It's funny, but we've been able to not think about it too much during the wait for the appointment. That is, I was able to compartmentalize it by thinking "Well, it's probably going to be fine, and will simply be a bit of a hassle for a while. I don't have to make any more decisions until after we get the second opinion, so I'm not going to think about it." There were days that I didn't think about it at all.

Has that happened for you, in waiting for the next PSA test result (any day now, right?)?

- Al
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Old 07-12-2011, 03:17 PM   #32
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Al,

This is only slightly related to what you are talking about here (but more to do with high calcium), but you may want to look into transdermal magnesium. (Read "the Magnesium Miracle" by Carolyn Dean M.D.)
Amazon.com: The Magnesium Miracle (9780345494580): Carolyn Dean: Books
Below is by another guy...
Magnesium For Life | Transdermal Magnesium Chloride Therapy » Magnesium and Calcification
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Old 07-12-2011, 03:32 PM   #33
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Thanks, BBBamI. It's funny, but we've been able to not think about it too much during the wait for the appointment. That is, I was able to compartmentalize it by thinking "Well, it's probably going to be fine, and will simply be a bit of a hassle for a while. I don't have to make any more decisions until after we get the second opinion, so I'm not going to think about it." There were days that I didn't think about it at all.

Has that happened for you, in waiting for the next PSA test result (any day now, right?)?

- Al
Yes...in a way it's been that like for me as well. It seems my brain had gone into overload with everything that has been going on the past few months. Something had to give...so I find myself cautiously optimistic these days. Somehow this has taken some of the pressure off...trying to roll with flow...one day at a time.

DH had the PSA done today as a matter of fact. We should have the results in a few days.

Heh...it's a great life if we don't weaken....
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Old 07-12-2011, 04:10 PM   #34
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We'll hold our thumbs for you (Swedish version of crossing fingers).

The problem with being able to forget something is that moment when you remember again.
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Old 07-13-2011, 08:30 AM   #35
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I hope her surgery goes well. When my parathyroid tumor was diagnosed, the Endocrinologist referred me to the surgeon with the most experience since the parathyroid is not always located where it is expected to be. He ended up having the explore to find mine, but it all turned out well.
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Old 07-28-2011, 05:19 PM   #36
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An update: A surgeon down at UCSF does 200 of these operations per year (as opposed to the surgeon here who has done only about 100 over his 40-year career). My bass player friend had the surgery done by her, and was impressed. Using her will involve at least two separate seven-hour trips down to San Francisco (initial visit, preop, and op). She's in the Blue Cross network, so the cost will be the same ($7,500 total) except for the travel expenses.

I think the choice is pretty clear. If we had it done locally, and there were complications, or Lena ended up with a permanently hoarse voice, we would never forgive ourselves for taking the procedurally simpler choice.

Also, I will have much greater peace of mind knowing we are having an experienced surgeon doing the work.

The choice to do the surgery seems clear to me also, the last nail in our current doc's coffin. We will get the results of her official bone scan soon, but the other day she had a free one, and the result was -2.5 (borderline osteoporosis).
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Old 07-28-2011, 07:54 PM   #37
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I'm glad to hear you made a decision that you are happy with and I hope the rest of her bone scan results are good. I had my tumor long enough to cause osteoporosis in my wrist and hips and osteopenia in my spine. I have another bone scan next year as a comparison to see whether I need treatment or not. Hope she can get a surgery date soon and put this behind her.
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Old 08-15-2011, 01:03 PM   #38
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The ultrasound today confirmed the Sestamibi scan results, but showed three nodules on the thyroid which are "probably not cancer," so next week we get a biopsy of those, and wait for the results. Lena's mom had thyroid cancer, so...

Typical fun and games in healthcare.
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Old 08-15-2011, 01:21 PM   #39
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Good luck Al and Lena on this. My DIL had nodules biopsied 3 weeks ago, and they were not cancer- so non-cancerous nodules seem common enough.

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Old 08-15-2011, 01:34 PM   #40
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The ultrasound today confirmed the Sestamibi scan results, but showed three nodules on the thyroid which are "probably not cancer," so next week we get a biopsy of those, and wait for the results. Lena's mom had thyroid cancer, so...

Typical fun and games in healthcare.
My mother had thyroid cancer and I also worry about it; I think multiple nodules is a good sign vs. just one.

Lena is lucky to have you.
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