High pth dilemma

[cherpep]

My pth has been running pretty high.  The doctor gave me some samples of the Sensipar.  After the first month, it went from around 900 to 700 - not down far enough.  For the past month, I've doubled up on the Sensipar, still using the samples from the doctor.  I'm awaiting the current blood test numbers. 

At this point, even if the numbers are reduced, I don't know that I can continue using the Sensipar.  I just called around to pharmacies, and my portion - after the insurance company pays - will run from $275-350 (depending upon the pharmacy) per month.  The doctor also said it will most likely be necessary for me to take another drug (don't remember the name), but he checked with some pharmacies and found that my portion would be around $250.  So, if the drugs are effective, the minimum amount I will need to pay per month will be $525.  Honestly, I cannot afford that on top of my Fosrenol, midodine, yadayadayada. 

So.. it looks like the only other alternative is to have the surgery.  I read many great posts on here about the surgery - what to expect, etc.  I don't know if I'm not looking in the right spots, but I was wondering what the downsides are AFTER the surgery.  Once it is done - are there any ill effects to not having that gland anymore?   Did the reducing of the pth increase the levels of anything else?  What are the realistic complications I should consider?  Am I gonna need to take a lot of medication afterward anyway? 

I did check the parathyroid website, but I found it confusing and it didn't really give me the answers I'm looking for.  I need some realistic cold-hard truth.  I'm calling on the many experiences of the IHD members.  I know you guys have the answers for me. 

Thanks in advance!!



TOPIC MOVED to appropriate section - Bajanne, Moderator

[jbeany]

I had mine done in September.  My PTH was over 2000.  I was constantly nauseous.  I had two enlarged parathyroid glands - -one on the left that was as big as a cherry, the other on the right just barely enlarged.  There are 4 parathyroid glands altogether.  They will only remove some of them, not all of them, so there won't be any replacement meds you need to take after the surgery.  It's an overnight stay in the hospital, at least.  The surgery itself isn't really that big of a deal, but if your PTH has been high long enough, the sudden drop in PTH levels drastically changes your body chemistry.  Your bones, which have been releasing calcium because of the high PTH, will suddenly start sucking it back in.  It's called "hungry bone syndrome."  It causes your calcium levels in your blood to drop.  This can be serious.  The initial symptoms are numb lips and a tingling sensation in your hands and feet like your extremities have "gone to sleep."  Worst case scenario is difficulty breathing and even a chance of seizure.  You will be kept in the hospital until they see that your calcium levels are reasonably stable.  Over a month later, my calcium levels are still running low - 7.8 when it really should be more like 8 or 9.  It's an easy fix, though.  I'm on Oscal vitamins twice a day, and whenever I feel that tingling in my lips or hands, I just chew a couple of tums.  I've also noticed a bit of dizziness when my calcium is lower - that thing where you can't stand up too fast or you get lightheaded for a minute happens a lot when I need to chew more tums.

My surgeon, unfortunately, only removed the seriously enlarged para, and not the second one.  He ran blood work during the surgery, and after the first gland was removed, my PTH dropped from 2000 to 249, so he didn't do the other one.  (Ideal numbers would be 50-100.)  3 weeks after surgery, my PTH was back up to 436, so I'm back on IV hectorol.  Did your doc discuss that option with you?  I'm on home hemo nxstage, and I dose myself with it 2 times a week, right into the machine, or even straight into the needle access at the end of the run, just before I use the syringe to rinse back the excess blood in the arterial needle.  The hectorol comes from the center, and is charged directly to Medicare just like Aranesp, so I don't have to pay for it.

I'm scheduled to recheck PTH in 2 weeks, to see how my current dose is working.  So far, though, even the drop from 2000 to 400 has resulted in a big improvement in my health.  The constant nausea went away the day after surgery.  My phosphorous levels dropped so much I've gone from 4 or 5 1000 mg Fosrenal binders a day to barely 1/2 a tablet with only 2 meals a day.  I'm able to eat a lot more high phos foods now without any problems (well, except the weight gain from pigging out on cheese and peanut butter.)  Once I got through the wobbly effects of the low calcium, I've had more energy, too.

The scar, while not lovely, isn't too bad.  It's a line at the base of my throat, about 3 inches horizontally.  I did buy a tube of Mederma scar treatment, and I've been using that.  It does seem to help - I'd recommend it for the price - about $15 for a tube that will last the entire 3 month treatment.

[Zach]

The following is from the Clinical Practice Guidelines for Bone Metabolism and Disease in Chronic Kidney Disease from the National Kidney Foundation (U.S.A.)



GUIDELINE 8B. VITAMIN D THERAPY IN PATIENTS ON DIALYSIS (CKD STAGE 5)

8B.1 Patients treated with hemodialysis or peritoneal dialysis with serum levels of intact PTH levels >300 pg/mL (33.0 pmol/L) should receive an active vitamin D sterol (such as calcitriol, alfacalcidol, paricalcitol, or doxercalciferol; see Table 28) to reduce the serum levels of PTH to a target range of 150 to 300 pg/mL (16.5 to 33.0 pmol/L). (EVIDENCE)
http://www.kidney.org/professionals/kdoqi/guidelines_bone/Guide8B.htm

But too low a PTH is bad as well:

GUIDELINE 13C. ADYNAMIC BONE DISEASE

13C.1 Adynamic bone disease in stage 5 CKD (as determined either by bone biopsy or intact PTH <100 pg/ml [11.0 pmol/L]) should be treated by allowing plasma levels of intact PTH to rise in order to increase bone turnover. (OPINION)
http://www.kidney.org/professionals/kdoqi/guidelines_bone/Guide13C.htm

[cherpep]

Thanks jbeany!!!!  That's exactly the kind of information I was looking for, but could not seem to find.  Thanks so much!  I'm gonna have my hubby read your entry too - he's very concerned.  Thanks also for the hectorol info.  I'll definitely discuss that option with the dr.  I am also on NxStage. 

[aharris2]

Rolando had it done about 7 months ago. There appears to be no significant downside. Like jbeany, we have to watch calcium levels and do supplement with 500 mg of calcium twice a day and additional when he is symptomatic as described by jbeany. They will leave a portion of one parathyroid to address the issue of adynamic bone disease that Zach mentioned.

There was a brief hospital stay until the "hungry bone syndrome" subsided. We were told to expect a week, but went home after 4 days. He was in substantial pain for several days, but that seems to be the exception not the rule.

The pluses:
It will stop the osteoporosis it is currently causing you (known or unknown).
It will stop bone pain if you are experiencing it due to the stealing of calcium from the bones.
It will normalize the calcium/phosphorus/pth metabolism.

Rolando had a very slow to nonhealing fracture of the lower left leg. It happened in Oct '07. Doctors were suggesting amputation. We, together with Rolando's nephrologist were pretty much certain that the bone wouldn't heal until that metabolism was normalized, so we patiently waited. 3 months after the removal of the parathyroids, the leg stabilized. 2 months after that, the bone was showing structure. 1 1/2 months later (NOW),  the cast is coming off and a leg brace is being fitted!

Jbeany, we hadn't really thought about it, but since the surgery I have noticed that Rolando, too,needs much less Fosrenal and Renagel to keep his phosphorus at reasonable levels.

[cherpep]

I just shared these responses with my husband.  His exact reaction was - "Wow - that's great information".  I love this community!!!  You guys are the greatest!!!  I don't know how anyone survives dialsysis or any other life challenge without this community.  This information truly has been quite helpful.  I welcome more. 

[jbeany]

Sounds like Rolando did have a rough time with it.  I only spent one night in the hospital, and had hardly any pain at all.  I got a vicodan right after I woke up in the room, and then switched to regular tylenol after that.  The bandages sticking to the swelling skin on my neck bothered me more than the actual incision.

[twirl]

cherpep
I pm'ed you about my surgery, like you wanted
and glad to do it
anytime you need me, I am here
I had an awful time
I asked a couple of members to pm you who I think had it easier
I would send you left over sensipar but then I get busted
sensipar made me sick
I am horrified about the part of the drug money you have to pay
OMG
call Obama on that one
when I was on D for 18 months - I had to get on medicare
that really helped
you know, you may pay for all those drugs and in awhile still need the surgery
most patients are in the hospital for 3 - 4 days
they will want you to do D in the hospital before you go home
so I think I was just a problem waiting to happen
please consider all your options
who in the hell could afford to add a bill of over 500 dollars a month
we know
we are paying Bubba's rent and it is hard but worth it
you do what you do for your children
I know this is a difficult time and I am concerned for you
reread what the benefits are that 2harris wrote
and remember
I will do anything I can for you
cheryl

[Bajanne]

This is one of the many reasons I love my IHD family.  Look at the help members are able to extend to each other.  INFORMATION IS POWER!!!
One thing this thread does is remind me that I have to be more consistent with my phosphorus binding.
hope everything works out for you, cherpep.  You know my caring thoughts and prayers are with you whichever way you go.

[twirl]

cherpep
I thought about you during the Aggie game yesterday
thinking about the game was too painful 
you are too young to have all the problems that will occur if you do not get the surgery
Rerun is under control with medication
Sensipar gave me problems
my numbers are better
just consider everything
if you do not get the surgery, how will be you in a year from now
take care
chertwirl

[cherpep]

My husband and I did a lot of talking.  You guys have been extremely helpful.  At my next Dr. appointment, I will discuss getting the surgery.  It sounds like, in the long run, I will be better off.   I really appreciate everyone's openness and honesty. 

Twirl - you are so sweet!!  Thank you for caring so much about me and all the IHD family.  You are a treasure. 

[502Blues]

Ive had my parathyroid taken out in 2001, and have been on  30mg sensipar for a few yrs now, my pth stay at a pretty stable range. i dont have any side effects or anything