High PTH and extreme Bone Pain

[Red from Canada]

Hi All,  I have had a high PTH (156) for a while now, am on Sensipar which doesn't seem to help much.   In the last week, my legs have become so painful that I can't walk up or down even 2 or 3 steps.  My arms are also painful.  Ha anyone had this and will the parathyroidectomy make it better?  I am in tears with the pain.

[Romona]

Mine was high for awhile. I took rocaltrol until recently. I don't know how long it will stay down. I know what you mean about the bone pain. My doctors aren't encouraging removal of the parathyroid adenoma I have. I had a transplant and he said it might affect my tranplant.

[Red from Canada]

Thanks much for your response, Ramona.  I have been just doing some reseqrch and found a site called Parathyroid.com.  With kidney patients it is called "secondary parathyroidism", and I think I read that with a transplant, it can go back to normal.  I hope that is the case for you, as this pain is incredible.  I have many stairs in my home and I really don't want to move.

[-Lady Noir-]

Sorry to hear that Red. My partner had extremely weak bones when his PTH was high, but i don't think he had pain, until he chipped both hips! That must be awful to put up with 
Have they considered a parathyroidectomy for you?

[-Lady Noir-]

Mine was high for awhile. I took rocaltrol until recently. I don't know how long it will stay down. I know what you mean about the bone pain. My doctors aren't encouraging removal of the parathyroid adenoma I have. I had a transplant and he said it might affect my tranplant.

Oh! Funny you say that, my partners Neph said they wouldn't give him a transplant unless he had a parathyroidectomy. Suppose it depends on when you have the PTH issue

[sullidog]

They told me my pth was 934. I don't notice. Is it possible to have no symptems of high PTH?
Troy

[-Lady Noir-]

I'd say so. Basing that on my parters experience. No symptoms of high PTH, no symptoms of kidney failure. Nothing.

[jamoman]

i had the bone pain when my phosperous was high, parathroid didn`t give me any symptoms.

[Romona]

Parathyroid.com has tons of info. My neph was hoping it was secondary. My endocrinologist still says it is secondary even after finding the adenoma. As far as I know, it doesn't just go away. I think the levels effect everyone differently. My phosphorous is very low and my calcium is normal high. I had the parathyroid issues before transplant and now after.

[hotnspicyazgirl]

I had a high PTH back when I had my first transplant....I had such SEVERE bone pain that I fell to the floor in heap and couldn't stop sobbing...this was at my docs office. They called the ambulance, and when the ER docs took xrays..every single rib in my body was broken. They immediately scheduled me for surgery to remove part of my parathyroid glands. It was agony before they did that.
I hope you get some help for this soon!!
Deanna

[Romona]

I got my PTH results yesterday. Since they stopped rocaltrol it went from being in the 60's to 100. This happened in less than two months. The pain is coming back and stomach issues too.

[kitkatz]

My PTH sits in the 500s. I had parathyroid surgery, too.  It just sits there.

[suzyq73176]

My PTH was very high last year.  So high infact that I ended up with calciphylaxis.  This isnt something to take lightly.  It started as severe leg pain for me as well.  I had trouble with steps and would have to drag myself up them.  It hurt so bad I took to spending most of my time on the couch.   Then i began to notice small skin lesions on either thigh which steadily grew.  They looked likea very dark scab.  By this time I had also started a bedsore from the couch on my back.

I was finally admitted to the hospital.  I had to have the lesions debreded which basically left me with three gaping wounds as deep as a softball in both thighs.  They had to pack them daily and remove the packing so they would remove the dead tissue.  They then removed my parathyroids.  They attempted to remove them all but missed one.  And now that one has caused my levels to rise again.  The removal made me feel no different but it improved my numbers for th time being.

[tyefly]

Well     I too have been having leg pain...upper thigh.....when climbing my stairs......   and now I find out my Pthis 498.....  they started me on some meds......  I cant beleive all the problems with CKD......   and  now bone pain which I have never had before and wasnt even sure what it was....all of these things that keep coming up I keep thinking that its just me getting old...... but that is what I thought with all my symptoms before I found out I had CKD.......  this is terrible...... skin is getting bad too....... this is terrible .......   

[Sunny]

Bone pain, muscle pain, joint pain, I have it all. I'm 50 going on 70. Talk to your doctor about this, to see if things can get under control.

[Zach]

Here's more info on PTH:

http://ihatedialysis.com/forum/index.php?topic=2395.0

http://ihatedialysis.com/forum/index.php?topic=12188.msg209635#msg209635

http://ihatedialysis.com/forum/index.php?topic=16367.msg286547#msg286547

[MooseMom]

Well     I too have been having leg pain...upper thigh.....when climbing my stairs......   and now I find out my Pthis 498.....  they started me on some meds......  I cant beleive all the problems with CKD......   and  now bone pain which I have never had before and wasnt even sure what it was....all of these things that keep coming up I keep thinking that its just me getting old...... but that is what I thought with all my symptoms before I found out I had CKD.......  this is terrible...... skin is getting bad too....... this is terrible .......

Oh tyefly, you're right...this is terrible.  It's a wonder that any of us are alive, what with all the things that go wrong with CKD.

[aharris2]

Red, High pth rips the calcium out of your bones. Apparently it hurts, bone pain is a symptom of high pth.

In my brother's experience, parathyroidectomy put an end to the high pth and subsequently an end to the bone pain.

With parathyroidectomy, a small portion of one gland is left in place (or relocated) because parathyroids do serve a purpose in bone health. First, the measurement of pth level is not necessarily the same from country to country. Here in the US, a pth level of 150-300 pg/ml (picogram/milliliter, pico is one trillionth) is not considered high and is sufficient to prevent the development of adynamic bone disease.

Leg pain is also an early symptom of calciphylaxis. The pain is extreme, excruciating, marginally controlled with very aggressive treatment with narcotics. Happily it is very rare. Suzyq, congratulations on surviving calciphylaxis. The current survival rate is 20%. My brother also developed calciphylaxis 7 years ago, 6 months after starting dialysis. At that time, his pth was not elevated at all. It was in the 150 to 300 pg/ml range. His also started as extreme, agonizing leg pain (and hand pain) followed awhile later by the lesions on both his legs and hands. The pain is from tissue death - the same as the cause of pain in a heart attack. The dead tissue eventually manifests as gangrene, dry if you are lucky, with the appearance of thick leathery dark scablike tissue - dead tissue.

[-Lady Noir-]

With parathyroidectomy, a small portion of one gland is left in place (or relocated) because parathyroids do serve a purpose in bone health.

My partners remaning parathyroid was relocated to his forearm. Trouble is, they may have accidentaly take out part of the thyroid gland. Or so his notes suggest..