I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Rerun on February 06, 2006, 07:43:56 PM
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They put me on a new (they said it was new) medication that basically turns off your Parathyroids. Too late for those of your poor people who have already had them ripped out of your neck.
Sensipar - http://www.sensipar.com/consumer/index.jsp
If your Doctor (Local Idiot) wants to take out your Parathyroids, ask him/her to look into this.
I just started it, so I don't know if it works yet. :-\
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They put me on a new (they said it was new) medication that basically turns off your Parathyroids. Too late for those of your poor people who have already had them ripped out of your neck.
Sensipar - http://www.sensipar.com/consumer/index.jsp
If your Doctor (Local Idiot) wants to take out your Parathyroids, ask him/her to look into this.
I just started it, so I don't know if it works yet. :-\
Thanks, too late for me :'( My PTH holds the record for dialysis patients it should be no higher than 300
Ready for this...... Mine was 3,500+ OFF the scale. Which is why I am now in a wheelchair. So trust me anyone who is listening if your PTH gets out of control and medications won't control it. Get those parathyroids removed, but just make sure the surgeon gets them all the first time or you will need a second surgery like me and increase your chance of them cutting one of your vocal cords by mistake LIKE THEY DID ME. >:(
But you can read all about that saga of my life when I get to it in my bio in the "Introduce Yourself" section.
But good luck Rerun what is your PTH btw?
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I'm not sure what my PTH is. I love dairy products, but have cut out all cheese. I have a small glass of milk every morning and saver every drop. I'm not giving that up.
Once your parathyroids are out, can you drink milk? In other words, does it matter what your Phosphorus is anymore?
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I'm not sure what my PTH is. I love dairy products, but have cut out all cheese. I have a small glass of milk every morning and saver every drop. I'm not giving that up.
Once your parathyroids are out, can you drink milk? In other words, does it matter what your Phosphorus is anymore?
Here's the thing and remember every person is different. My PTH was so high that after they took out my parathyroids for about 4-5 months after my surgery I ate everything I wanted like a pig. I ate so much cheese, chocolate, you name it I ate it and my PH never went about 4 :o but the bad side to the story was my calcium was hard to keep above 6 and when your calcium gets too low it starts messing with your heart, it could stop. Plus I felt vibrating in my legs. The dietician warned me it won't last and to enjoy the foods whiile I could and she was right after a while my PH started to rise but the good thing is my calcium was back to normal.
Now bear in mind though they took out my Parathyroids and Thyroid (Due to cancer they found on my Thyroid). So it will be different in your situation but to answer your question, yes you still need to control your PH. All removing your parathyroids does is stop any further bone density loss. Unfortunately for me it was already too late. :-\
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The doctors only found out about my parathyroids, when i fell and broke both my knees. x-rays showed you could see through my hip the bones they where so thin. The Docs where talking about platting my hips. 1990 that happened I was on CAPD at the time. I now know they did not used to check the parathyroids levels. So they took three and three quarters out. The Parathyroids are supposed to be the size of a grain of rice. All four of mine where larger than a pea. Never found out how high the results. But my bones have now gone back near to normal and you can no longer see through my hips on the x-ray. I went to the hydro pool for 4 years, my bones where to weak to use the bike or weights. 4 months on zimmer frame. 2 years with 2 elbow crutches. One year with a walking stick. Now no sticks. The consultant did say I could end up in a wheel chair, but still fighting, just now winning that renal agreement.
Kevno
(A renal patient, never just a renal patient)
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I had my parathyroids out too. It was the worst operation I ever had and the longest hospital stay I have had to date (including a transplant). My phosphors is still terrible I usually run above 10. I just can not seem to remember to take those binders. I have no trouble taking the rest of meds I never miss a dose but the binders are a completely differant story. I had the same problem with my calcium epoman it took forever to come back up and still runs a little low at times. I have not had any broken bones but I feel generally weaker since I have been on dialysis. That could be from lack of exercise too I have to admit I have been a couch potato lately.
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My Doc wants to give me new drugs for my PTH. I presume it is Sensipar but he said if it doesn`t work, my glands will have to come out. I`ve been warned about this not being the best option cos if I get a transplant then my parathyroids will work as normal. Is this true. I`ve noticed the back of my shoulders hurt and my knees hurt everytime I stand up from a sitting position. My unit have said to keep an eye on this. Why, what is happening, are my bones deteriorating??? I also had torn ligaments in my feet and they are still not healed up properly though it has been 4 months now since this problem was first diagnosed. The docs just say they will heal up in time but they hurt when I stand up after sitting for a while and when I get up in the morning.
I`m so new to all this and there`s so much the medical profession don`t explain unless you know what you`re talking about!!!
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My Doc wants to give me new drugs for my PTH. I presume it is Sensipar but he said if it doesn`t work, my glands will have to come out. I`ve been warned about this not being the best option cos if I get a transplant then my parathyroids will work as normal. Is this true. I`ve noticed the back of my shoulders hurt and my knees hurt everytime I stand up from a sitting position. My unit have said to keep an eye on this. Why, what is happening, are my bones deteriorating??? I also had torn ligaments in my feet and they are still not healed up properly though it has been 4 months now since this problem was first diagnosed. The docs just say they will heal up in time but they hurt when I stand up after sitting for a while and when I get up in the morning.
I`m so new to all this and there`s so much the medical profession don`t explain unless you know what you`re talking about!!!
Well I couldn't control my PTH and after 7 years I broke BOTH of my hips and am now in a wheelchair 5+ years later, the bones will not heal, metal pins hold me together. :( My PTH was 3,500+ before I had the parathyroids removed. GET THE PTH DOWN, I AM WARNING YOU! Do what ever you need to do, or we can have wheelchair races together. :(
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I have been on Sensipar for about 6 months, And i have jut received some results back today. My PTH is now normal, as is my phosphate, the only problem with this drug is that it lowers your calcium, but all this means is you have to control it with moe calcium tablets. :)
So if possible get on Sensipar its the best option!!!!
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Sensipar is not doing anything for my PTH. It is in the 1100 range as of the last blood draw. I am scheduled for parathyroid surgery in November.
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Sensipar is not doing anyhting for my PTH. It is in the 1100 range as of the last blood draw. I am scheduled for parathyroid surgery in November.
hey... how long have you been taking it for?? and how high was it and for how long was it high?? im thinking maybe the damage was already done.
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You know, oh well, as far as any damage is done. I am not going to worry about it too much. Scheduled surgery and hope for the best.