High Calcium Level Post-TX

[Deanne]

Did you have trouble with your calcium levels after transplant? Mine are still running high. They said early on that this is fairly common, but I think they expected it to drop by now, 2 months post-TX. They put me back on Sensipar a few weeks ago and it dropped for a week, but then bounced back up over 10. They added a PTH test to my labs this morning and said they want to see if I have calcium deposits in my parathyroid. If you had calcium issues, did you find the answer or did it eventually drop into the normal range?

[Charlie B53]

You need to have a long talk with your team.

Abnormally high calcium can be an indicator of any of 3 fatal conditions, or NOT.  But the tests should be done in a hurry as time for treatment could be critical.

Then again, some of us have what is 'normal for us' high calcium levels.  Often running near the maximum 'normal' limits, and sometimes, like my last three monthly tests, just over those limits.  My results have been like this for almost 30 years.  I have only started PD just about 1 year ago.

I may be possible that my high calcium has contributed to my kidney failure.  I don't know and at this point it really doesn't matter.  It's just another one of those things that make you say, "Huh?"

[MooseMom]

Deanne, have your had your lab results back yet?  Any change in your calcium levels?

[Deanne]

Calcium is still over 10. 10.1 last Thursday and 10.6 yesterday. They think it's because my PTH is high, so they tested that, too. It came back at 158 and I'm on 30 mg of Sensipar. I did some internet reading, of course. It says it can take several months for it to calm down, so I hope they'll be patient and not be too quick to suggest removing parathyroids - the other potential solution that I saw. It sounds like removing parathyroids post-transplant can cause big problems, like rejection episodes.

I also saw online why they're concerned about it. A high calcium level can cause the demise of the transplant. I didn't see how long this would take though - if it's an immediate concern or if it's a long-term concern, and I didn't see how high the calcium level would need to be before it causes damage.

[MooseMom]

Oh man, I hate having to wait to see if a certain med is going to work or not.  I hope the sensipar will help.  If it does indeed bring down your calcium to an acceptable level, will you have to keep taking it?  How does that work?

My CA was slightly high when I had my last tx neph appointment, which was almost a year ago.  At the time, I was taking a calcium supplement twice a day, so she cut it back to only once a day.  I have my next appointment in about 3 weeks time, so I'll be on the look out for that particular lab result. 

I don't remember...did you have high PTH/calcium before your transplant?  Or is this a new problem?

[Deanne]

I've been back on Sensipar for about a month, so I probably need a higher dose if that's what will do the trick. Luckily, I hadn't gotten around to getting rid of my pre-transplant meds and I had 2.5 bottles of 60 mg tablets left. I'm down to 1.5 bottles left now. Insurance doesn't want to cover Sensipar now, so when I run out, I guess my transplant neph will either need to do battle with the insurance company or find another solution. I see my tranpslant neph tomorrow.

On dialysis, my PTH was higher than healthy peoples' PTH, but it was controlled within dialysis guidelines. Shortly before transplant my neph was starting to readjust my Sensipar and Calcitirol meds. She said it was a balancing act, and the meds had to be tinkered with somewhat regularly to keep calcium and PTH within the targets.

From what I've been reading, it all works itself out in the long run after transplant for about 95% of patients, but it can take a year.

[MommyChick]

Hello Deanne!
I hope you were able to get some type of results back as far as your CA levels go. I actually had the same problem, I am now 6 months post TX. My first week went great as far as feeling good after having a transplant, but after that first week things really turned on me and I started to get really sick. I came to find out my parathyroids decided to totally go crazy on me. I knew I had higher CA levels after transplant, but for whatever reason after my first week it hit me really hard and I got pretty sick. I had to stay in the hospital a lot longer then I planned!
I had my transplant in Oct. and by Dec. I had almost all of my parathyroids removed. I was amazed at how much better I felt once they removed them, not to mention all my numbers got better. Now I was also told that high levels of CA can ruin your kidney over time and I had waited over 8 years to find this kidney so that was a little worrisome for me. I had them removed because I didn't want to take a chance at ruining my only kidney. (my TX surgeon also did my parathyroid surgery, so I had faith in all of his decisions)
Everyone is different though, so you should really talk to your doctor and see what they are thinking and really discuss all options.
Wishing you the best of luck!

[MooseMom]

MommyChick and Deanne, is there something about getting a tx that makes the parathyroids go wonky?  Might the meds do something to these glands that make them produce too much PTH? 

[MommyChick]

MommyChick and Deanne, is there something about getting a tx that makes the parathyroids go wonky?  Might the meds do something to these glands that make them produce too much PTH?

My PTH was always high while on dialysis, so I don't really know. My doctor said it was a combination of all the years on dialysis and now having a fully functional kidney that the body goes a little wacky and doesn't know what to do. With my kidney though mine was way to high for comfort so I insisted on getting my parathyroids removed sooner then later and honestly for me it really changed how i felt after it all.

I actually had to take more meds. after TX just to keep my parathyroid in check and once it was removed I could stop all those medications.

[Deanne]

My transplant neph said he's happy with my PTH level. It's 154 with 30 mg Sensipar. He's taking me off vitimin D supplements. They had me on it to protect my bones and I have osteopenia from my past prednisone experience. Vitimin D can increase calcium and my biopsy showed I already have calcium deposits in the new kidney. He said this is what made my creatinine level increase, and it isn't likely to go back down. I'm thankful they're taking action quickly before any more damage is done.

MommyChick, it's a good thing you had your parathyroids removed so quickly! From what I read online, if PTH levels are a problem on dialysis, it's best to get them removed before transplant to eliminate the potential for problems later.

[MooseMom]

Good to hear, Deanne!

[Deanne]

I'm freaking out a bit. I've been off Vitamin D for a week and my labs today show my calcium level is higher than ever at 10.8. My creatinine is rising again, too. It was 1.53 on Monday. It dipped to 1.35 today, but for the last couple of weeks it's been 1.2. My nurse called to remind me to drink water. I told her I'm drinking three liters a day and she said that was enough. I think they think I'm lying about the amount I drink, but I'm not! I have a 700 ml bottle with measured lines on it. I use my Fitbit to log every time I empty the bottle. I target 1400 ml before lunch, 1400 before dinner and then I only have 200 ml to drink in the evening so I'm not up every hour during the night. I often go over 3 liters, since I don't usually count extra stuff, like milk in my cereal, a cup of coffee, etc.

What else can raise calcium levels? I'm not on calcium supplements or vitamin D supplements. The tx neph said he's happy with my PTH level at 150. I did a web search, of course, and didn't see much that helps.

[jeannea]

Make sure you're reading labels. You mentioned cereal. Many cereals, juices, etc. are fortified with extra calcium. Vitamins labeled Women or Over 50 usually have extra calcium.

[obsidianom]

I doubt it is anything you are eating. My only thought is perhaps this is parathyroid related as 150 is still way above normal for the average person. It may be the gland is enlarged for the secondary hyperparathyroidism from the original kidney disease. Now that you have a working kidney it may be the gland is just too large and pumping out too much hormone which raises the calcium levels. This is just conjecture on my part. At least if this is what is ocurring it may run its course or in worst case you may need to have parathyroid removal. I would be interested in Hemodoc's take on this as he probably is more experienced in this area then I am. I am more of a surgeon then internist as he is.   

[Deanne]

I don't think it's food-related, either. I don't think I eat that much dairy and I only have cereal a couple times a week, so even if it is fortified (doesn't say it is on the label), I don't have very much of it. I don't buy anything that says it's fortified with calcium and the vitamin I'm taking is one the neph prescribed - just a basic multi-vitamin with no extra anything.

I talked to the nurse and she said she's going to talk to the neph about it to see if they want to change anything or send me to an endocrinologist. I don't really want to go down the path of parathyroid removal unless I absolutely have to. I read online the PTH issues almost always resolve themselves in time and parathyroid removal can trigger rejection events. I don't know where that line is. It only took two months for calcium deposits to show up in a biopsy and it has affected my creatinine level. At what point are the calcium deposits more dangerous than taking potentially risky action?

[obsidianom]

Read this article. It is helpful to know there are safe options for dealing with parathyroid issues even after  or during kidney transplant .  If it is the parathyroid like in this case in the article , they CAN manage it, even surgically and safely.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3989746/

[obsidianom]

=Nephrol Dial Transplant. 1997 Nov;12(11):2393-6.

Parathyroidectomy after renal transplantation: a retrospective analysis of long-term outcome.

Schmid T1, Müller P, Spelsberg F.

Author information

Abstract
BACKGROUND:

Advanced hyperparathyroidism refractory to active vitamin D continues to be a problem and frequently forces the nephrologist to resort to parathyroidectomy. One particular aspect is persisting advanced hyperparathyroidism after renal transplantation. Published information on this point is fragmentary.

DESIGN:

Retrospective analysis.

PATIENTS:

Between 1983 and 1995 a total of 456 patients with renal secondary hyperparathyroidism were subjected to parathyroidectomy (PTX) of whom 103 were transplanted or had at least a history of renal transplantation. The present analysis concerns 37 patients who had a functional renal graft at the time of PTX and were followed for up to 13 years. PTX was performed after an average of 36.7 months after renal transplantation.

OUTCOME:

Thirteen patients experienced rejection and became dialysis-dependent. Twenty-four patients had stable function of the renal graft. Seven patients died during follow-up. Hypoparathyroidism post-PTX developed in 4/37 patients, but could be overcome by replantation of cryoconserved parathyroid tissue. FREQUENCY ESTIMATE: A total of 2632 renal transplants were performed in the catchment area. As a minimum estimate 3.91% of patients with a functional graft required PTX.

RECOMMENDATION:

Parathyroidectomy should be considered early in cases with advanced secondary renal hyperparathyroidism, since renal transplantation does not necessarily guarantee reversibility of parathyroid overactivity

[obsidianom]

As a final addendum, the newest research shows parathyroidectomy DOES NOT EFFECT graft survival. So you can relax about that if it is necessary.
This is from a long article on the subject.

"On the other hand, recent data lessened this conviction, showing that no difference in the long-term graft outcome was evident between KTx patients who were submitted to PTX as compared with a comparable group of patients who were not [53]."

[Deanne]

Thank you obsidianom! That's very reassuring. I so love that we have doctors and others here with a wealth of knowledge and experience!

[RichardMEL]

This is an interesting topic. thank you for raising it!

I too have had high, but not massively high, CA levels post-tx. On our scale I've been 2.6 - 2.65ish in that range, whereas normal is 2.2ish-2.55 or so.. so it's not massively over, but it's also not really desireable.

I did do a course of 30mg sensipar a couple of years ago, but it didn't seem to affect it much (unlike pre-tx) and then it was declared I shouldn't be on it post-tx - or rather it's "not authorised" for govt subsidy - only for those on dialysis (but I digress). docs didn't think it was worth going owith anyway given the lack of real impact it was having.

my PTH has been around the 20-23 level (200-230ish for US types) which is high, but the senior nephs seem to not be overly concerned.. they've said in some cases it can take years for this to settle down but they have mentioned the dreaded parathyroidectomy or similar.

I can't help thinking, obviously, the two are linked and that cutting out the PTH glands would be a hammer solution to one that perhaps is best treated by going back to the Calcium and working on that (my K and PO4 are perfect).

I think with where I am at, and an adjustment is pending on my anti-rejection meds (lower to hopefully remove totally damn cyclosporin) that there could also be an effect on PTH levels following this change, so we'll keep an eye on it.

So anyway, keep updating this thread as it is of interest to me.