labs today...pth still high..

[angela515]

So today at my monthly lab appointment, I was told my PTH levels ae still high, in the 500's, so depending on this months results i'm wondering how long before they will wanna do something about my PTH levels? I am currently taking Sensipar for that, 90mg a day... I also take Hectorol and Renegal as my other meds to help control calcium, phos and all that contribute to PTH and such...I don't miss my meds, and I try to monitor my diet the best i can. I guess i'm just wondering how long do they let ya go with high pth levels before wanting to do anything about it? back a few months ago my levels were 800's and 900's and they found out my parathyroid gland is larger than its supposed to be.. they wante to take them out, but then at the last minute they changed their mnds, so idunno whats going on.

[meadowlandsnj]

So today at my monthly lab appointment, I was told my PTH levels ae still high, in the 500's, so depending on this months results i'm wondering how long before they will wanna do something about my PTH levels? I am currently taking Sensipar for that, 90mg a day...

My PTH just came back as 1201.  I was just started on 60mg of Sensipar last week.  From being in the 200's it really spiked this month so we'll see next month or my next blood work what it is.

Donna

[Epoman]

My PTH was in the high 3,000+'s am I am in a wheelchair to prove it. 

[strateup]

My PTH ran in the 1200 to 1300 for several months, partly poor diet, partly not taking binders correctly, and partly overactive enlarged parathyroids.  I had the parathyroidectomy done and my PTH levels returned to normal.  Unfortunately my bad habits were still there and in time my levels started increasing again.  The doc put me on sensispar, phoslo renegel, and fosrenol, basically, as the doc calls it, everything known to mankind.  I have gotten better with the binders, still horrible with the diet, but my PTH is back down into the 200's.

[strateup]

My PTH was in the high 3,000+'s am I am in a wheelchair to prove it. 

Epoman        Your the guy the unit always uses as the example of what could happen.

[Zach]

There is hope when you are able to follow the renal diet.  It took just over 12 years on dialysis before I needed a parathyroidectomy.


Here is a good illustration of the glands:

[kitkatz]

Mine are gone.  Good pciture there. Good to see what went bye bye.

[angela515]

My PTH was in the high 3,000+'s am I am in a wheelchair to prove it. 

Yes, I read your story.. how awful. My question for you Epoman is I notice when you talk about your PTH levels, you always say how it got you put in a wheelchair, what I never see you say and what I wonder is, while your levels were high, did you ever get sores anywhere on your body? That's my big issue right now, little sores all over my legs and a few on my top side of my arms and in my ears... they just appear out of nowhere, and when I asked what they were caused from they tell me from my PTH levels being high.. 

I wonder if there is anything I can do to help get rid of the sores? I hate them... they take months and months to go away, IF they go away at all... I have had a few of them for 4 months now with no signs of them getting smaller and going away yet... grrr. 

There is hope when you are able to follow the renal diet.  It took just over 12 years on dialysis before I needed a parathyroidectomy.

Thanks Zach. I follow my renal diet, I mean I am not perfect as I am sure nobody is, but I clearly stopped drinking milk for this purpose, and it's very rare I have cheese, if I do it's very small, like a sliver slice... my sandwhiches no longer get cheese put on them, and little things like that, so I do try to watch my diet as best I can. I always always take my binders, and only reason i don't forget those is because my parent's always make sure to ask me when we sit down to eat, "You got your pills??", and I always do... I also make sure I got samples of Sensipar and Hectorol on hand because I have a hard time getting those 2 refilled, so when I run out and I am waiting approval, I got the samples, so I dont miss those...

My ankles already have screws in them, 2 in each one, my ankles are fused together... but luckily my surgeon was aweomse and I can still walk even though it was told before the surgery I wouldnt be able too. Lately my ankles have been hurting me, mostly my right... I think nothing of it sometimes, but sometimes I wonder.. myabe my PTH levels are causing some bone problems, since they were already a problem anyways? Today I could barely walk on my left knee when I woke up, I wrapped it with an ace bandage... these are many issues I am bringing up to my dr on the 28th.

One last thing... After transplant, my PTH and everything goes back to normal, right? If so, does that mean the sores should stop.. and any damage that MAY be caused to my bones now, will be stopped?

[meadowlandsnj]

My PTH ran in the 1200 to 1300 for several months, partly poor diet, partly not taking binders correctly, and partly overactive enlarged parathyroids. 

I was taking Renagel but my doctor switched me to Fosrenal about 2 months ago so maybe the change in medication is contributing to my raised levels.  I'm going to go back on just the Renagel and see if it works.  Maybe Fosrenal doesn't work with me as well as the Renagel did.  I'm not a milk drinker so milk and dairy is not the problem.   

Donna

[gizmar]

I know they watch PTH levels prety closely.  You're on a prety high dose of Sensipar (sure hope you have a fantastic drug plan - that stuff is huge money)  I thought I was bad with 60 mg and 7 renegel a day.  When my PTH level is higher I usually know why and it's usually (always) diet related.  I cut out high phosphorus foods - milk, cheeses etc. and voila - quick change.  I tend to eat a lot of yogurt and that spikes my phosphorus.  Are you itchy all the time?

[angela515]

I know they watch PTH levels prety closely.  You're on a prety high dose of Sensipar (sure hope you have a fantastic drug plan - that stuff is huge money)  I thought I was bad with 60 mg and 7 renegel a day.  When my PTH level is higher I usually know why and it's usually (always) diet related.  I cut out high phosphorus foods - milk, cheeses etc. and voila - quick change.  I tend to eat a lot of yogurt and that spikes my phosphorus.  Are you itchy all the time?

I love my drug plan, it is a life saver. I have a Medicare part D drug plan and b/c my only income is from SSDI i qualify for extra help. SO I dont have a premium to pay, and my co-pays are $5 and $2, except right now I have no co=pays b/c with my plan I have reached the "catastrophic" level and until Dec 31 everything is 0.. then Jan 1 my co-pays start again. I seen how much the Sensipar is without insurance, 920.00/mo.. crazy.

I try to watch my diet.. I have cut out milk, except on my cereal... I dont eat ice cream, I rarely have cheese... I always take my binders... im gonna start writing down what I eat so I can go back and look it over later on see if I can fix it up better than what Im doing if my numbers are still high... I should find out next week what this months labs say. *crossing fingers*

As for being itchy... i am itchy, not all the time though... i remember a lil over a yr ago when i was on hemo.. one time i was sooooo itchy, my phos was 13.0    I hope to never be that high again ever.

[Zach]

... im gonna start writing down what I eat so I can go back and look it over later on see if I can fix it up better than what Im doing if my numbers are still high..

That's a great idea angela.  Good Luck.   

[angela515]

Well, my PD nurse just called to tell me my hemoglobin was 13.4 so I can lower my Epo to 5000 units 3 times a week... the rest of the results I will get in the mail on my Report Card. 

However, I asked what my phosphorus levels were..... I almost fainted when she told me.... 4.1!!!!...omg... yay... I have NEVER been in the normal range for over a YEAR. I'm thrilled.