High Calcium and Parathyroid Disease

[TromboneAl]

Lena's had two tests showing that her calcium level is too high. We're going to meet with the doctor on Thursday to discuss further tests.

My initial research suggests that a common cause of this is a benign tumor on one or more parathyroid glands, something that can be fixed with relatively simple surgery.

Parathyroid.com Discusses Parathyroid Disease, Hyperparathyroidism, Parathyroid Diagnosis and Surgery. Parathyroid Operations, Parathyroid Treatment and Parathyroid Tumors.

We'll know more on Thursday, but to be prepared, has anyone gone through this stuff?

Thanks,

 

[Achiever51]

T-Al,
I did not have parathyroid issues, but I did have a pretty advanced tumor on my thyroid that required total removal of my thyroid gland. Before agreeing to the surgery, I went through a period of watchful waiting with periodic tests to assess my status. During that time, after consultation w my endocrinologist, I found the very best, most experienced surgeon in this type of procedure. Not to alarm you, but please be aware that any complication involving the parathyroid glands is potentially serious.

Bottom line, I'd ask lots of questions and proceed cautiously.

 

[Rich_by_the_Bay]

Hyperparathyroidism is actually fairly common. Depending on symptoms, the actual calcium level and a few other details it can be watched for long periods of time. Alternatively, the small parathyroid tumors that cause it can be surgically removed with fairly low invasive procedures. On the "good" side, quite a few patients who didn't know they had hyperparathyroidism seem to enjoy benefits from treatment (fatiigue, acid stomach, better BP, etc.).

Experience counts here, so I would seek an endocrine surgeon with lots of cases under his/her belt.

 

[TromboneAl]

Thanks, Rich.

That web site pretty much says that watchful waiting is a bad idea, especially since the surgery is so much easier these days. OTOH, the web site is for a center (in Tampa) that only does parathyroid ops, perhaps they are biased?

From http://www.parathyroid.com/diagnosis.htm:

[FONT=Trebuchet MS, Arial, Helvetica]You can see from this graph that most people with a parathyroid tumor have their highest calcium level about 10.9. This means that their AVERAGE calcium levels were in the mid to upper 10's (they have calcium levels that bounce around in the mid to upper 10's). The third major mistake we see doctors make when looking at blood calcium levels is that they will say "your calcium levels are a little high, but they aren't all too high, so we'll just watch it". These doctors will wait and see if your calcium goes any higher, possibly past some "magic" number like 11.5 (a common "magic" number we hear). Well it turns out that only 32% of the last 15,000 patients we operated on ever had even ONE calcium level that was 11.5 or higher. You can see from this graph, that most patients with a parathyroid tumor have average calcium levels in the mid to upper 10's and their highest number is usually 11 or lower. So if you are waiting for this "magic" number, your tumor will continue to grow, you will continue to feel bad (see our symptoms page), you will continue to get worsening of your osteoporosis, and you will lose the joy of life. And... while you are feeling bad and your bones, heart, and kidneys slowly get destroyed by the high calcium, chances are that you will never get to the "magic" number of 11.5.[/FONT]

​

Lena's level is 11.3.

 

[Rich_by_the_Bay]

I've checked out that center for a patient and it seems to be legitimate. It is a surgery oriented center including its medical director, as I understand it.

If it were me, I'd probably go for the surgery (esp with an 11.3) if the diagnosis were certain. Otherwise it would always be lurking in the back of my mind, and because life-long monitoring is a nuisance. But waiting is a perfectly fine decision for some asymptomatic patients.

Anyway, this condition is highly treatable, treatment is safe and effective, and risks/side-effects and treatment failures are uncommon.

 

[TromboneAl]

A few years ago, Lena got a DEXA scan via her gynocologist that showed some beginning osteopenia. Should the doctor have followed that up with a calcium level blood test?

Looks like, if we go with the surgery, we'll have to travel down to UCSF or to Medford, OR. That's a disadvantage of living in the country.

 

[Rich_by_the_Bay]

A few years ago, Lena got a DEXA scan via her gynocologist that showed some beginning osteopenia. Should the doctor have followed that up with a calcium level blood test?

No, just coincidence and incidental, IMHO. I [-]don't [/-] didn't routinely check a calcium for mild osteopenia. Usually the Ca is part of a bloated screening panel (CMP for example) - complete metabolic panel).

 

[KB]

Al,
I went through this last summer. I had some lab work that showed my calcium at 12.2 and PTH at 338. Repeat tests a couple of weeks later showed the calcium at 12.4 and PTH 499. My vitamin D was low at 12 also.

I was referred to an Endocrinologist and was diagnosed with a parathyroid adenoma which is usually benign. I had a Sestamibi scan to determine the location and size of the tumor and ended up having exploratory surgery within a couple of months. The only reason for the delay was getting into see the surgeon and then getting scheduled for surgery. It was an overnight hospital stay. My vocal cords were temporarily affected; it took a total of 4 months for them to return to normal.

Let me know if you have any specific questions I can help with.

 

[TromboneAl]

It sounds like you had the "old fashioned" surgery rather than the mini, yes?

 

[KB]

Yep. Because of the results of the scan, I had exploratory surgery, not the mini. And the surgeon said he really had to hunt for the tumor even though it was the size of his little finger. Normally the parathyroid is the size of a grain of rice. My scar is not really visible now, after less than 9 months.

 

[TromboneAl]

We met with the doctor today, and found that he was up to date on the issues involved (I guess most PCPs are not). But I was surprised that he actually doesn't recommend surgery, citing studies that show that long-term higher-than-normal calcium levels are not as damaging as thought. IOW, the surgery isn't worth the small risk.

So now I have to go through those studies and decide (that is, help Lena decide).

He suggested a second opinion, but I think that's essentially luck of the draw. If we happen to go to a pro-surgery doc he/she'd suggest removal, and if we saw an anti-surgery doc, he/she'd recommend the opposite.

If the studies convince me that elevated calcium isn't a problem, here's one strategy:

Wait five years and re-evaluate. Not to see if she gets better (she won't), but to see if there is a consensus on the advisability of the surgery.

 

[haha]

We met with the doctor today, and found that he was up to date on the issues involved (I guess most PCPs are not). But I was surprised that he actually doesn't recommend surgery, citing studies that show that long-term higher-than-normal calcium levels are not as damaging as thought. IOW, the surgery isn't worth the small risk.

So now I have to go through those studies and decide (that is, help Lena decide).

He suggested a second opinion, but I think that's essentially luck of the draw. If we happen to go to a pro-surgery doc he/she'd suggest removal, and if we saw an anti-surgery doc, he/she'd recommend the opposite.

If the studies convince me that elevated calcium isn't a problem, here's one strategy:

Wait five years and re-evaluate. Not to see if she gets better (she won't), but to see if there is a consensus on the advisability of the surgery.

If a doctor recommends no surgery, how often is he going to be wrong?

Almost never, IMO.

Ha

 

[TromboneAl]

If a doctor recommends no surgery, how often is he going to be wrong?

Almost never, IMO.

Ha

I'm not sure what you are saying, Ha, can you elaborate?

Thanks.

 

[haha]

I'm not sure what you are saying, Ha, can you elaborate?

Thanks.

Oh, only that there is institutional and economic pressure in medicine to do procedures, and kind of a can-do attitude.

A Doc recommending to just sit back is kind of like the dog that didn't bark, he is making an unexpected move.

This may be meaningless, it is just the way I would look at it.

Ha

 

[Meadbh]

Lena's calcium levels will need to be monitored. Here is a tragic case of what happened to a young man in whom hypercalcemia was missed.

Institute for Patient- and Family-Centered Care - Advancing the Practice - Jean Klein

 

[haha]

Lena's calcium levels will need to be monitored. Here is a tragic case of what happened to a young man in whom hypercalcemia was missed.

Institute for Patient- and Family-Centered Care - Advancing the Practice - Jean Klein

Wow. What happens to cause death? Is it a cardiac contraction problem?

Ha

 

[Meadbh]

Severe hypercalcemia can cause kidney failure and cardiac arrest.

 

[KB]

Al, did they check her PTH level too? My understanding of both a high calcium and PTH level is how they diagnose a parathyroid tumor.

 

[TromboneAl]

Al, did they check her PTH level too? My understanding of both a high calcium and PTH level is how they diagnose a parathyroid tumor.

Yes. PTH came in just an hour ago and it was high. So definitely a tumor.

So far my review of the studies suggests a significant increase in quality of life and bone density, with surgery so I'd lean toward the surgery although it will be very difficult logically.

 

[KB]

My endocrinologist did a bone density scan right before my Sestamibi scan, as a baseline. She was able to run all my results through a computer program and show the possible impact of my osteoporosis and osteopenia, and it was a very low impact. Thus, we elected to not treat the osteoporosis at this time. I have osteoporosis in my wrists and hips, and osteopenia in my spine. I may have had my tumor for years....they couldn't really say.

I'm still taking Vitamin D daily, in a reduced dose. The Endocrinologist checks my level every 3 months and alters the dose. I started on a Rx dose of 50,000 IU daily and now take 2,000 IU daily. Also taking 1600 - 1800 mg of calcium daily.....that will be rechecked in a few months.....actually it will be 12 months after surgery..

Hopefully Lena will get this taken care of soon. I was quite concerned about delaying my surgery and the Endocrinologist said the damage to the bones is very slow so a couple of months wouldn't make a difference.

BTW, I did feel better within a couple of weeks after surgery. More energy....I didn't realize the impact the tumor had until post-op.

 

[Tigger]

Another possible cause of high calcium is vitamin D overdose, but I suppose it's pretty rare. Here's more info.

 

[TromboneAl]

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.

 

[TromboneAl]

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.

 

[Meadbh]

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!

 

[TromboneAl]

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??