PTH Questions

[wreepete]

My questions concern the effects of Kidney failure, IE; PTH levels.

1. Do all people who's kidneys fail, have high PTH's as well as the other effects of a high PTH's?

2. Does everyone get calcification of the bones and organs.

3. Does it always progress to the point of having to be in a wheelchair at some point, if you have it for a long enough time?

4. Knowing that everyone is different, how long does it take for the calcium to be drawn out of the bones to form calcium deposits, bone loss, etc...?

Recently I began having more symptoms of ESRD such as a high PTH, high Phosphors level etc... and my understanding is that the side effects are not preventable, that we are only capable of slowing the process down.

5.Do I understand this correctly?

I have been told that we are looking for me to start dialysis after I have my gallbladder taken out (scheduled for July 7).  My Neph. and the DaVita center that she works with is working on getting the NxStage machine as well as getting me set up for Home Nocturnal Dialysis.  Those are the choices I made after researching the web and forums like this one.  Because NxStage isn't usually used for Nocturnal Dialysis, I may have to chose one or the other, but am crossing my fingers that I can get approved to get both.

I appreciate any feed back in reference to the above questions and any other info anyone wants to share regarding the subjects I have mentioned.

wreepete

[Epoman]

My questions concern the effects of Kidney failure, IE; PTH levels.

1. Do all people who's kidneys fail, have high PTH's as well as the other effects of a high PTH's?
If your Phosphorus is high or your PHxCA product. Then they can't give you drugs like calcitrol or some other drug that helps lower your PTH. Many people never have PTH problems because they follow a diet and are able to control their pth levels with drugs.

2. Does everyone get calcification of the bones and organs.
Yes, but it varies GREATLY in people, for example I have an enlarged heart but I have NO blockages, and I have been on dialysis for 13 years. But my PTH was 3,000+ (due to cancer, we later found out) and my bones are toast. I have 2 broken hips for 5 years now. But my heart is fine, big but fine. (I had a angiogram).

3. Does it always progress to the point of having to be in a wheelchair at some point, if you have it for a long enough time?
Well if your PTH level is high it will pull all of the calcium from your bones and if you fall, you may break a bone. And indeed you can end up in a wheelchair. Read my bio to see how I broke both of my hips. But some people unlike me are on dialysis 30 years and are still walking. But I tell you what, you do not want to end up getting calcium deposits in your joints like I did, it is the worst pain, it feels like a knife is stabbing you in that area. So bottomline is get your paras removed or keep your product down so they can lower your pth with drugs.

4. Knowing that everyone is different, how long does it take for the calcium to be drawn out of the bones to form calcium deposits, bone loss, etc...?
Well again everyone is different. I was on dialysis 7 years and then was stuck in a wheelchair, BUT some people are on dialysis for 30 years and are still walking. With this disease so many things can happen to you and some bad things happen to others well some things will never happen at all.

Recently I began having more symptoms of ESRD such as a high PTH, high Phosphors level etc... and my understanding is that the side effects are not preventable, that we are only capable of slowing the process down.

5.Do I understand this correctly?
Not at all, your PTH level, phosphorus leve, bone lose, calcification, are ALL controlable. Think about it for a second EVERYONE experiences bone loss as they get older, everyone gets calcification of the vessels, it's part of gettinfg old. If you ARE able to get nocturnal dialysis then you will not have these problems, You will have hardly any diet restrictions and you will be able to drink so much more. In fact I have been told some patients have to ADD phosphorus to their treatment becasuse the phosphorus level gets to low. If you can at the very least fight for NxStage. I start July 10th, but for me the damage has already been done. The doctors say my bones are like an 80+ year old women.

I have been told that we are looking for me to start dialysis after I have my gallbladder taken out (scheduled for July 7).  My Neph. and the DaVita center that she works with is working on getting the NxStage machine as well as getting me set up for Home Nocturnal Dialysis.  Those are the choices I made after researching the web and forums like this one.  Because NxStage isn't usually used for Nocturnal Dialysis, I may have to chose one or the other, but am crossing my fingers that I can get approved to get both.

I appreciate any feed back in reference to the above questions and any other info anyone wants to share regarding the subjects I have mentioned.
There are other threads on this site about this subject, do a search and you will find even more answers. search "PTH"

wreepete

[Panda_9]

Nocturnal does allow you to have a less restricted diet but you still have to be sensible. You cannot drink more because the effect on the heart is still the same if you drink alot. Its best if you try to keep it under 2.5L gains between treatments. But we are all human and its not easy.

[goofynina]

New Years, 2004,  i believe i broke the record by gaining 15 kilo's.... i am not bragging but i must say i will NEVER EVER EVER do that again, i couldnt breathe, walk, bend over,  it was humiliating,  Believe me,  i was the talk of the clinic, and to this day, i believe i am still the top gainer,  what an honor huh     Funny thing is they didnt take me to the hospital,  i ran 7 hours though, then the next time around i had to run 6 1/2.   Never did that again but i was always gaining between 5 - 7 kilo's of fluid between runs.  Now on PD,  i am slowly losing, thank goodness,  i dont even have the desire to drink as much as i did when i was on hemo, but i am allowed to drink a little more which is great come special occasions.  And as for eating,  i can actually eat cucumber and a little bit of tomatoe and not get high potassium like i did when i was on hemo,  but then again,  i get my labs done this week YIKES

[Panda_9]

Holy crap goofinya you must be thirsty!! Most Ive gained is 7kgs, but it was because I was being non compliant. Had trouble with dialysing, missed treatments, then when I finally got incentre for Dx, the nurse dialed in 800ml total instead of 800/hr. I have never been so pissed off with a Dx nurse before!

[goofynina]

nope, not thirsty, just in the mood to PARTAY!!!!  who says shots of tequila dont add up, lol,   i believe we had an extra day off due to the holiday too.  Dont quite remember,  I just remember all the whispers when i walked into the room,  or shall i say "floated" into the room, lol,   but like i said, i learned my lesson,  had my lectures and never did that again!!!!

[angieskidney]

can this be stickied since this pertains to every patient and is a very good reference point? Thank you Epo for your well worded answers

[Epoman]

can this be stickied since this pertains to every patient and is a very good reference point? Thank you Epo for your well worded answers

STICKIED 

[RichardMEL]

OK I am a little confused, so thought I would post to this thread with my question

I have read a few threads in here (doing a search) about high PTH levels and just about all of them talk about LOW calcium in combination with high PTH being a problem.

Well, my calcium has been high (2.72 right now) while potassium is OK (4.1) and umm Phosphate is 0.93. Anyway one of my nurses who has been following my figures with interest (she says she has an interest in the chemicals side of things). Anyway they had me on a low calcium bath and that took my calcium down to 2.59 which the doc said was "OK" but then the boss of the unit took me OFF the low calcium bath and the calcium went back up to 2.72. A note in my folder from another doc said that using the low calcium bath could actually lead to even higher PTH levels?!! blah. So anyway we got a PTH test done and the figure is 13.4 (I think that might be 134 for the North Americans - the nurse told me "high for normal people is 6.9" so I think there may be a factor of 10 involved here somewhere - kind of like the measure we have for haemoglobin.

So anyhoo the nurse today told me that maybe I'd need a parathyroidectemy at some stage because the PTH was high, but reading in here it seems a figure of 300+ is when you start worrying (so I hope that is 30+ in our figures)....

so my question basically becomes... high calcium + high PTH? What's that mean? It was suggested perhaps I should cut down on my Caltrates (I was on 4/day, now on 3/day) but that all seems a bit counter to what I'm reading here. Am I misunderstanding something or do I just have a different set of things to worry about?

[AlasdairUK]

I'm not an expert on this, but my general understanding it is a triangle between phosphate , calcium and PTH. Calcium and phosphate bind together to give you strong bones. When your PTH is high it will pull the calcium from the bones into your blood causing calcium deposits in your tissue and your bones will become hollow and weak.

If your calcium level is too high then your bones will become brittle so you need to try keep it at the upper limit (2.5). With your phosphate being so well controlled I would take less calcium binders as you seem to have scope to increase your phosphate level to decrease your calcium. 

50% of dialysis patients will have thier PTH removed after 10 years.

[RichardMEL]

Thanks for that succinct response...that makes more sense to me That explains why the nurse was saying I might need to take less Caltrate (suits me! I hate those suckers!).

well will chat to the doc and see what he says.

[brenda]

When you PTH is high and no calcium is getting to your bones and then it is lowered quickly you can get what is called "hungry bone syndrome". Thats when your bones have been so starved for calcium that they start acting like sponges soaking it up once the PTH is suppressed. Calcium can go very low. And it can be very painful. My PTH right now is over 2700 but my calcium & phosphate are perfect. And yes, I have had parathyroid surgery, they removed 4 but I have more, somewhere?

[angela515]

Usually with high PTH you will have high Calcium also.

[goofynina]

I am taking Sensipar to keep my PTH low, from my last test results, my calcium is low too, does anyone know what causes calcium deposits? i have gotten more in my stomach, they hurt like hell 

[angela515]

Out of whack PTh, Calcium and phosphorus causes calcium deposits.. your labs may be good now, however because they were out of whack, the process has begun and cannot be stopped until you either have a transplant and everything goes to normal, or you have your parathyroids removed. I have calcium deposits in the form of sores on my skin on my hands, very painful as well so i know what your going through to some extent. Supposedly since my levels are fixed now they will go away within a month or two, we shal see.

For 5-6 months I was taking Sensipar to control my PTH levels also, but the sores never went away b/c the process was in motion already.

[goofynina]

I also have one sore on my hip not big, but its just there, has the doctor ever given you any type of ointment to put on your sores?  Or do you just have to let them heal on their own,  i am worried that these calcium deposits in my stomach are going to stop me from ever having a transplant cuz of where they are located and how big they are, damn, i just cant win 

[angela515]

No ointment... and for 6 months now they haven't healed, so I don't really have much positive outlook on them healing now just because everthing is fixed.... although they tell me they will. I plan on puttin triple antibiotic ointment on them and just keep them clean for a few moths to see if it helps any.

[brenda]

Maybe good news for me, we shall see. They have located my 5th parthyroid. I had a nuclear imaging as well as a MRI so I don't know yet which one showed the location. It is just below the bottom of my ribs and a little to the left. Haven't see the neph yet so I don't know what the plan is from here. Also he is working with the drug rep to get me Sensipar. It's a very long process. 

I don't know for sure, this is just what the neph told me. He said the one thing I never wanted was to get calcium deposits. He told me they are very hard to get rid of ever once getting them and they don't really have a cure except to individually remove them.

[angela515]

Brenda, hopefully they can get it out of you, b/c Sensipar is only a temporary helpful tool, it isn't a solution to the problem.

[brenda]

I totally understand every scenario of this PTH problem. The problem is how they want to go about it. Just saying, "yes Dr" isn't an answer either. I'm not like that I need to know that they will find me the best option and not just do it this way or that way because that's all the knowledge Calgary has. I have read a lot about laser surgery and know now that it is available here in Canada. Just not in Calgary. So send me where things are easiest for me. Not whats easiest for them. After all patient care is what it's supposed to be all about.

[angela515]

Brenda, surgery is going to be your best option... as for the type, Idunno about laser, but I don't think they can do that for the type of surgery you need... however I'm not a Dr so I don't know for sure... but I totally understand about getting whats best for you done... hopefully you can see some other Dr's than what your seeing.

[MattyBoy100]

My PTH level is high again and that is after being on and off and on Sensipar again.  The Doc says my Parathyroids have to come out and it is being done in December.  He said they would take out all the glands (4 I believe) and then they chop one up into a smaller piece and re-insert it about an inch deep into one of my thighs.

Is this normal and has anyone heard of this?  The Doc also said I would have to stay at hospital until my calcium levels had stabalized and he suggested it would be about 4 days.

For those of you who have had the op, how long did it take for your stitches etc to heal?  I know everyone is different so just tell me how long it took on an individual basis.  I don't want to have a lot of time off work but am also worried that with this piece of gland being put into my thigh, I may not be able to get up and about again as quickly as I would like.

[angela515]

I had this done, but when they went in, the decided only to remove the glands on one side because once in they noticed only those were enlarged. However, the plan WAS to remove them all, and they re-insert a small piece into your arm... never heard of doing it in the thigh so Idunno what to tell ya.

I had my neck sliced open twice in the same week due to them having to go back in, it healed pretty fast though. Good luck!! 

[MattyBoy100]

Well everyone, this is my lucky week.  I am going in to hospital on the 5th December to have my parathyroids taken out.  I spoke to the surgeon briefly and he said I would have to stay in for a week for calcium levels to stabilize.  I'll let you all know how I get on.

[KT0930]

We'll be thinking of you, MattyB. Best of luck!