Cathy, I’ve had such bad reflux ect. that I’m in the same boat as you. It’s like having morning sickness all day long and I take a bag or container with me, and is by my bedside because it gets so bad sometimes that I vomit. My neph. just said if it keeps up I need to see a gastro… doc. My appetite is waning too.
My son who had severe headaches for which at first nothing could be found also had soaring cortisol levels. They thought he might have Cushings but found that the pain in his body was making the Cortisol levels high and dx. Pseudo Cushings. A trip to the endocrinologist might be in order for you!
I’m with others on this. You need to get things cared for. I think it’s especially important in younger pts… to seek help because one will hopefully be on dialysis a very long time, or get a txp… Lin.
HI everyone
Went to dr on 6/20/06 and had a real good talk. As for my #'s (pth) the # from the last test was a 4 and the very next one was 1800. The dr said that it had to be a mistake. I have to tell you all after to two trip to my new dr , I’m almost happy. I’m not ready to jump up and down yet. But this dr seems like he will listen to my ideas and thinking. The dr seems like we might be able to work on this as a team. Which I felt this was about, that my input was listened too.
bobeleanor 
You have to watch it with PTH. It needs to be collected in a chilled vacutainer and then it has to get to the lab within 30 minutes and remain chilled during that time. Any mishandling in this regard can really change the numbers. It’s also hard for us to interpret as patients, because it’s not an absolute. It’s all tied up with calcium and phosphorus and vitamin D. Everything works together.
Pierre
Saw my Dr (well not my dr, a sidekick) yesterday and he said I may need my parathyroids out :?
I know its a common thing, but Im not keen on removing bits of my body. Because he was so concentrated on that, I forgot to get my script book filled arrghhh it is such a pain. If you dont get them then and there you could be waiting weeks to get them done.
Lin. if you are getting bad reflux, are you on any tablets for it?? I get reflux, indigestion, and ulcers, and I am on the max dose of omeprazole, which keeps it under control. I know if I even miss one dose, the symptoms return and I do start to feel sick. There are many medications available for this. I would be getting onto them asap.
I’ve been on 30mg of Sensipar for a few months now. I guess I expected miracles, but it is not working. I’m sure they are going to want to yank my parathyroids out.
What are all the determining factors that decide when the parathyroids must come out?
Here are some interesting articles about hyperparathyroidism:
– http://familydoctor.org/251.xml
– http://jama.ama-assn.org/cgi/content/full/293/14/1818
Here’s info on parathyroidectomy:
I’d ask your doctor how high PTH usually is when he/she recommends surgery and do all you can to manage your diet to see if that will bring the PTH under control without having surgery. From what I’ve observed, doctors usually recommend hyperparathyroidectomy when the PTH level cannot be brought under control by non-surgical means. I have known a few dialysis patients that had parathyroidectomies, but in my experience it wasn’t very common. I haven’t worked in dialysis for 10 years, but if it’s more common today, I’d have to wonder what patients are getting in food (ingredients, hidden additives) that they don’t realize could be affecting their calcium/phosphorus balance.
Parathyroids and dialysis don’t mix at all, they’re not friendly… :lol:
If the medicines don’t work you will get to other serious problems, but should you wait and just delay time without doing anythinmg? I think not…you don’t want to end up how some of us do…canes, crutches, or the wheelchair…
I’ve had the surgery years ago and its not a big deal! In matter of fact the excess bone pain is gone now and I stopped using crutches…you’ll feel alot better and be able to manage calcium and phosphorous with ease…
For those of you long term dialysis patients I’d recommend to have the surgery done. It will save you heaches, money, and time …
I am trying to understand is parathyroid surgery for patients whose pth is high, plus phophorous and calcium? Or does just the pth have to be high to need the surgery?
My PTH is high, but my phosphate and calcium are normal. I may need them out, not sure yet til the doctors decide.
As far as I know, parathyroids are only removed if blood phosphate levels are totally uncontrollable in any other way. As I mentioned before, you can’t just look at the PTH number in isolation. It seems to me that this happens to people on PD a lot more than to those on hemo - certainly among my acquaintances anyway.
Pierre
The doc said I still probly will need them out despite my calicum and phosphate being normal. He said if its not sorted out your body will keep leaching calcium from the bones and you’ll end up with osteoporosis. My bone turnover activity is high as well, which is another concern. Had a good chat with my home training nurse yesterday and he is going to get onto it and see whats happening.
I’m on Sensipar for the pth, and was on Pepsid for the reflux, but neph. told me to take Prilosec for two weeks and it worked too, but afterwards came back just as strong. Now he’s recommending that I see a GI doc… He sais that often taking meds, especially long term may mask a serious problem. Lin.
Amba is your pth very high or just higher than the normal pth range? In our case phos. and cal. are normal, pth stays higher than normal range, but is not at the max level, and we have low bone turnover (adynamic bone disease due to oversupressing with zemplar) so we can not take anything to bring the pth down. Have begun to feel some bone pain after yrs of dialysis. Been off zemplar for 2 yrs now, but the ratio still has not come up high enough. Neph says in our case he is not concerned with the accelerated pth level, only looks at the ratio. Do you all understand ratio? He says long txs may help the situation… there is no other option other than that. Machine co. rep said the longer txs help with bone pain. This is what we were told.
Hope to read the articles shared here when we have time. Sure there are clear answers, but still don’t understand it. Neph told us even the experts are not sure how to balance everything.
Back when I still had my parathyroids…though my calcium and phosphorous showed normal in lab work it was still a problem that the calcium was not getting into the bones. In other words, the bones were not absorbing calcium, but once I had parathyroid surgery my bones sucked the calcium like a sponge!
Gus wrote:
Back when I still had my parathyroids…though my calcium and phosphorous showed normal in lab work it was still a problem that the calcium was not getting into the bones. In other words, the bones were not absorbing calcium, but once I had parathyroid surgery my bones sucked the calcium like a sponge!
How high did your pth get…was it excessively high or just accelerated? Did you have high/low bone turnover? Did the bone pain go away completely?
I can’t recall numbers but it was high and my kneck was sore, had so much bone pain I can barely walk, had to use a cane, crutches…bones were weak and were brittle enough to break.
After surgery the bone pain did go away, it was a matter of weeks until all pain went away. Still there is some residual pain but not like the enormous pain I had before surgery.
Also had neck pain here. Woke up one morning and neck was stiff and noticed crunching sound. Also was sore on one side where years ago had had a sprained muscle. Orthopedic x-rayed neck and said it showed 2 deteriorating disks. The conditon is called spondylosis sp? We had never heard of it previously so looked it up. It sounded about right. He said all ppl get this with aging. How/if it is related to kidney condition he did not know. It has not gotten worse and some days seems better. What was your neck problem like…did it improve?
Condition here is not like yours to the extent that need a cain, can barely walk. Just feel a noticeable difference in bone strength. Someone described it as walking funny, like a chicken walks or something like that. How long did you have bone problems before you got so bad off you needed a cain/crutches?
I wouldn’t self-diagnose or make any assumptions. Just because we have ESRD and we are on dialysis, it doesn’t mean we can’t get all the other ills of life. One might be arthritis, for example.
Pierre