Life After Parathyroid Surgery

Life After Parathyroid Surgery

I had parathyroid surgery at age 69 at the Norman Parathyroid Center in April of 2018.  The surgeon found that I had 6 parathyroid glands instead of four, all of which were enlarged (rather than having tumors).  He removed four glands and cut down the remaining two glands to remnants. 

Subsequently I plunged into the world of low PTH and low calcium.  Apparently he didn’t leave enough tissue or he damaged what he left.

Up to this time I have refrained from leaving a review on their website.  I have never complained about the surgeon’s work – as he said, it’s sometimes difficult to determine how much tissue to leave in a case like mine.   However, I have been unhappy with their aftercare.  I’ve long considered what I want to post that will be helpful to others in my situation.

The positive aftermath of my surgery is that I no longer have the problems associated with high calcium – and I had many of them during the ten years my doctors said that my calcium was “high, but not high enough to worry about.”  In the year since my surgery I have had a few really good days in which I felt “Normal”, as in the years before high calcium.  I treasure those days.

The negative aftermath of my surgery is very low PTH production and often very low calcium levels, at times resulting in brain fog, muscle weakness (wobbly legs), feelings of agitation, tingling of face and fingers, foot neuropathy (heat, pain, pins and needles sensation), feelings of apathy (seldom experienced prior to surgery), and fatigue.  My surgeon told me (in an unguarded moment) that having low PTH and low calcium “is a miserable life.”  My outlook is that misery is an attitude, not a condition.  I would say that my life situation is sometimes difficult, often challenging, fairly frustrating – DANG HARD! at times, but not miserable.  In short, it’s become a workshop in which I’m gaining self-discipline, body awareness, determination to maintain a positive attitude, education, and more good days.

I am currently taking at least 6 calcium tablets a day (two at a time for a 500 mg/dose each time) and two doses daily of calcitriol at 0.25 mcg/dose.  I had unrecognized celiac for most of my life, and as a result have diminished intestinal absorption capacity, so I crush the calcium tablets.  It helped a lot to do that.  I no longer take Citracal (brand of calcium) recommended by the Norman Center as it is sometimes cross-contaminated with gluten during production, and I’ve had some bad reactions to it.  The Kirkland brand is described to be gluten free as far as both ingredients and production processes.

 I am one of ten siblings.  Six of us have had parathyroid surgery for tumors or enlarged glands. I was the third to have the problem addressed.  A seventh is considering surgery. The Norman Center claims that only 1% of their patients will have problems like mine owing to surgery by their doctors. I have no reason to doubt this. Two of my sisters went to Tampa to have surgery there after I did.  They requested not to have my surgeon on their teams.  Their surgeries came out fine.  (I’m not claiming any correlation between those last two statements.)

My complaints about the Norman Center are these:  

 1) These docs are SURGEONS.  They deal mainly with surgery, not with its infrequent negative aftermaths.   Because they are just surgeons, they don’t really know how to deal effectively with low PTH and low calcium problems. Having said that, it appears that nobody knows definitely how to deal with it effectively –meaning having a normal life again. It is a long, challenging process to figure out how much calcium to take, and what other medications might be helpful if they can be tolerated. 

2)  Even though only 1% of their patients have problem outcomes, if they have performed about 20,000 surgeries as they claim, that means that at least 200 of their patients are dealing with what I’m dealing with – and the surgeons had not cared enough to come up with a plan to help these patients connect with other doctors who have the interest, time, and expertise to help out.  I believe that this should be as important to them as removing tumors SINCE OUR PROBLEMS ARISE OUT OF THEIR ACTIONS.  

 3) My surgeon said he was “devastated” by the results of his work on me.  I came to believe that he was more concerned about how my problem could affect his reputation than about concerned over how my problem was actually affecting me.  He didn’t ever apologize.  I can take that. 

  

 4) The people at the Center were slow to recognize that my low calcium was lasting over many weeks.  I guess they thought it would level out somehow.  

 5) When I finally went to a local endocrinologist to get more timely help, she put me on 0.5 mcg of Calcitriol.  My surgeon then told me that if I took that amount for 6 months, I would never get off it.  He encouraged me to cut it down or stop taking it as quickly as I could.  I followed his advice, and that’s when I developed neuropathy in my feet.  

I have a few more complaints.  But those are enough. 

 I have some recommendations in case you are contemplating parathyroid surgery. 

1)      If your surgery ends up causing low PTH and low calcium, DO NOT LOOK FOR OR DEPEND ON ADVICE FROM THE SURGEON.   Rather, you should quickly seek out treatment by an endocrinologist who has the interest, time, and expertise to help you.  Don’t ask me who that would be.  There is a physician list on the Hypoparathyroid Association website, but those I contacted in the four states near mine said they were accepting only kidney failure patients, didn’t actually deal with hypoparathyroid issues, or were no longer in practice.  I don’t know how to explain their presence on that list.  I am currently working with a doctor who may fit the description of having the interest, time, and expertise to help me.  I drive 150 miles each way to see him.  It  seems to be worth it so far.

2)      Begin educating yourself right away.  This will mean digging through some hard to read medical reports, learning about the things that influence calcium absorption and what you can do to improve it.  

3)      Education will also mean paying attention to your body.  If you take the “normal” amount of calcium for a routine day, but you put in four hours of hard physical labor, you are going to be calcium deficient the following day.  Plan accordingly.  I recently hiked to Phantom Ranch at the bottom of the Grand Canyon – 7.4 miles down and 7.4 miles up and out two days later.  I ate a LOT of calcium, and didn’t have any low calcium symptoms – or high calcium symptoms, amazingly. This condition doesn’t mean the end of fun times.  Also educate yourself about side effects of medications that a doctor suggests before you take it.  Two doctors suggested that a small dose of hydrochlorothiazide would be helpful, but it caused my blood pressure to drop so low that I can’t use it. 

4)      Get yourself willing to give up some things to be healthy.  I’ve said Good-bye to Dr. Pepper and many other sodas because of their high phosphorus content.  You can read up on problems associated with high phosphorus that comes when PTH and calcium are low.

5)      Don’t expect your General Practitioner to know much about dealing with this problem.  While I was in the process of figuring out how much calcium and how much Calcitriol was the best balance, my calcium level went way high.  My GP’s loud advice:  Quit taking so much calcium!!!

So, I’ve written more than I intended.  It’s been a good exercise in getting these thoughts out of my brain and letting them rest somewhere else for a while.       

My sister, who was first to have the surgery - and kept telling me that I had all the symptoms of high calcium and should have surgery too - asked me if I was sorry I had followed her advice.  I am not sorry to have had the surgery.  I do wish it had turned out differently, but quite a bit of the time I feel better with low calcium than I did with high calcium.  I sometimes get a bit discouraged, but then I ponder on an African saying.  “Life has meaning only in the struggle.  Triumph and defeat are in the hands of the gods.  So let us celebrate the struggle.”

I work hard to celebrate the struggle.