? about an elevated parathyroid hormone

linda1814
on 12/2/11 7:31 am
 My friend who is a PA said that there is a mnemonic device that is used in school to remember what your PTH can affect .... stones, bones, abdominal groans, and psychiatric moans".

Mine was at a normal level until just after my 2 year mark and suddenly seemed to shoot up.  
I saw an endo and he had my switch the brand of calcium citrate I was taking after doing a little test by dissolving the brand I took and another one in water and seeing which one was dissolved better after 15 minutes.  So I switched from Kirkland (Costco brand) to Citrical.  He also put me on Potassium Citrate three times a day to increase the citrate in my urine.  You'll probably have to do a 24 hour urine collection.  I also increased my calcium to have an extra dose and increased my D2 to 150k iu a day.  

Schedule yourself for a Dexa scan if you haven't already.  I had one relatively early post-op as a baseline and I expect to have another one soon if I can get insurance approval ... or I may have to fight for it.  You don't want to leech calcium from your bones.

What's your supplementation schedule like?  

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Stephanie C.
on 12/2/11 7:45 am - nashville, TN
I did the 24 hour urine collection last week for the urologist. Do you think I'll need to do it again for the endo? I have been using the Sam's Club brand calcium but I have no problem switching to Citrical. I basically take the Vitalady supplement schedule but no K2 yet and no copper. I have doubled the Vitamin C per my urologist. They are calling me in the potassium citrate and I have been adding the real lemon crystals to my water to add citric acid as well. I haven't scheduled a Dexa scan yet. I have good insurance but is it a fight to get one at my age (34)?
  
linda1814
on 12/2/11 8:00 am
Request the results from your urologist so that you have them for your appt for the endo.  I ALWAYS request a copy of ALL labs, no matter how big or small, from any doctor that I see.  These doctors don't know the special requirements that we have and they only usually look at the last lab results in front of them.  They don't track our levels well enough to notice trends.  You should keep a spreadsheet on your own so that you know what is working and what isn't for you.  I'll try and look for a link since I got mine from here.  

I think because of your malabsorption, your dexa scan should be covered.  I don't know how often insurance usually pays for them but no matter your age, you should get a baseline.  I had great insurance when I had mine done at 36 or 37 without any problems.

See if your endo can give you a sample of Citrical maximum.  Drop a tablet of that in a glass of water and at the same time, drop a tablet of the Sam's Club one in another glass.  After 10 - 15 minutes go back it, stir it up and see which has larger particles that haven't dissolved well.  You are taking calcium citrate, right?  Not carbonate?  I had been taking 1800mg and bumped it up to 2400mg.  

Did they say anything about oxalates?  I haven't researched any correlation between high oxalates and PTH levels but high oxalates and stones are correlated.  Stay away from black tea.  It was my go to drink ... hot and cold... after surgery.  It is a really high oxalate food.  

I wouldn't worry too much as long as you follow through and always keep current on your labs.  Stones suck.  Mine haven't been too terrible yet painwise but I've gotten kidney infections for them since I am often symptom free.  So be really careful if you develop a fever or get severe chills.  

Good luck and let us know here how things work out for you... people are always interested in what works on lowering PTH levels and preventing stones.   

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Stephanie C.
on 12/2/11 12:07 pm - nashville, TN
When I was in the hospital he did mention something about oxalates. I was on a morphine pump at the time, so I really don't remember too much of what was said. I don't drink tea. Just occasionally hot tea in the winter, but I haven't had any since last season.

I do take Citrate. I know to star away from Carbonate. I have a spreadsheet to track my labs and they have all been going in the right direction so far. I was supposed to have them drawn again yesterday but I had to reschedule for 3 weeks from now. I am hoping something drastic hasn't happened since my last labs. Those numbers are 6 months old.

I will call to get my numbers from the urologist on Monday. The stones do suck. Like you, I never have any symptoms...until they are too far gone. The first time I had stones I ended up in the ICU septic. This time I ended up in the hospital 10 days
  
linda1814
on 12/2/11 4:10 pm
 Yeah that was me... I didn't want to mention it at first since I don't want you worrying for nothing since I figured it was unlikely.  My infection also traveled to my blood stream while I was across the country on business.  I went into the hospital one night after work and after they ran my tests, they called my hotel at 5 am and told me to come back in immediately so that I could start on IV antibiotics. 

Take care!

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J G.
on 12/2/11 2:19 pm
Stay away from black tea.  It was my go to drink ... hot and cold... after surgery.  It is a really high oxalate food.  

Linda, just wondering about tea...  Is decafe black tea okay?  How about green tea, regular or decafe?

Thanks, Jenny
linda1814
on 12/2/11 4:07 pm
Hi Jenny, 
In anything that I've read online, it sounds like all black tea regardless of the caffeine content.  Green tea and herbal teas are ok.  Something interesting from the second link:  "Vitamin C gets metabolized to oxalate" and can encourage kidney stones to form if you ingest too much."  

I read that green tea and oolong tea have less than 2 grams of oxalates per cup while black tea has 240 grams per cup.  A low oxalate diet is usually defined as less than 50 grams per day.  I haven't followed this yet but I don't know what I am waiting for.  I keep meaning to pick up a book from the library that Sue recommended - www.amazon.com/More-Kidney-Stones-John-Rodman/dp/0471125873

http://apjcn.nhri.org.tw/server/apjcn/Volume11/vol11.4/Charrier298.pdf
http://voices.washingtonpost.com/checkup/2008/08/kidney_stones_hold_the_iced_te.html



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newyorkbitch
on 12/2/11 8:06 am
 What is your PTH level now?  How about calcium level?

Why would taking antibiotics prevent you from taking calcium and vitamin D?



What types of calcium and D are you taking now and how much every day?

Simple explanation:  if you don't have enough calcium in your blood,  your body starts to leech it from your bones.  The byproduct of this process is the overproduction of PTH.  So even if your blood calcium level is normal,  if your PTH is elevated,  you are likely calcium deficient.  Vitamin D is a key factor in calcium absorption,

You must take calcium CITRATE and a lot of it,  and you must take Vitamin D in dry form, and a lot of it.  Much much more than any doctor will ever think is appropriate.  I take 50,000 units ever day - lots of people around here do that.


Stephanie C.
on 12/2/11 12:21 pm - nashville, TN
I don't know what they are right now. I will be asking for a copy of what the urologist has Monday and I have an appointment with my surgeon in 3 weeks for my year and a half check up.

I have been on 6 different antibiotics since October. I didn't stop the vitamins at first but my PCP and urologist suggested that I should temporarily to make sure they weren't interfering with the antibiotics since they were not responsive. I am off antibiotics now and back on vitamins.

I take Vitalady's D. One 10,000 sublingal and one 50,000 dry capsule for 60,000 total per day. The calcium is citrate. I have been taking Sam's Club brand of Citrical but I am going to switch to the brand name Citrical. I am taking 2,000 calcium right now. I am also going to order some K2 to see if that helps.
  
newyorkbitch
on 12/2/11 12:35 pm
I take generic calcium citrate,  not brand name,  does fine for me.

How long have you been back on this regimen?


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