Damn PTH

I haven't been posting much of late - I'm not off living the post-DS life, and having too much fun to post - my job is keeping me super busy these days.

Most of you know I've really struggled with deficiencies over the past five years, despite careful adherence to my supplement regime.    My calcium and D are the biggest issues, which has resulted in hyperparathyroidism.     On my five-year-labs, my copper and K's came back low, and my PTH has now skyrocketed up to 198.    My serum calcium and protein were both quite low (7.8 and 5.6 respectively) and my albumin is right on the border.     Guys and girls, I eat protein ALL DAY LONG.   I have been to three endo docs, none of whom offered much in the way of assistance.   I've tried Vitamin D infusions, transdermal calcium, sublingual vitamins - you name it.   I do credit the sublingual D and A for getting my levels up at least out of the basement....but my calcium?    Ick.   The PTH thing has me running big-time scared.    It just won't go down - 6,000 mg of calcium a day, and my PTH is climbing?  

It was recommended to me that I look into the Post-Bariatric Metabolism clinic at the University of Michigan Hospital, as their endocrinologists specialize in calcium/D/osteoporosis issues in just the bariatric population.   I excitedly made an appointment there and traveled the four hours to Ann Arbor.    After hearing my tale, looking at my labs and DEXA and related information, the endo looks at me, and says, "Well, it's obvious you are having problems absorbing calcium."   OMG.   DUH.

He said, "We don't see too many duodenal switch patients anymore."    Anymore???    I told him, "I think you have me mixed up with the BPD crowd, " and explained the difference to him.    He asked me if I counted calories, I laughed, shook my head, and said, "Noooo......"   He asked me if I weighed and measured my food, and I'm sorry if he took me as disrespectful, but I laughed again, and said "Nooooooo...... "   I said, "Look - I count my protein and keep an eye on the carbs.   That's it."    He said, "Well, then how do you know much protein you are taking in?"   I said, "Three eggs is 21-24 grams of protein, 3 oz of meat is about the size of a deck of cards, a can of tuna has 18 grams, a protein shake made with 1 1/2 scoops of protein...." I think he got my point.

I mentioned to him the relationship that K and copper have in calcium metabolism, D levels and osteoporosis, and how they assist in regulating our  levels.  I don't think he had a terribly strong familiarity with the role that these micronutrients have.     I told him I'd send him some more studies.   He said, "These aren't from vitamin websites are they?"    I said, "No, these are peer reviewed studies.   Every bit of research I do or receive is valid research, not health food claims."   He backed down, and said, "Well, I can tell you're really on the ball here."    I've just begun taking more calcium and a greatly increased dose of my K2 in the MK4 form, so hopefully that will help raise those levels a bit.

His big concern is that my secondary hyperparathyroidism has now turned into tertiary hyperparathyroidsm and he ran some more specialized tests.   If it is tertiary, he will send me to a nephrologist.     Prolong hyI have been having problems with random, acutely severe joint pain that is associated with hyperparathyroidism, and I'm scheduled to see a rheumatologist on November 21.    He also questioned whether this is a condition that possibly could have preceded my DS, but we will never really know because my surgeon did not order D and PTH levels pre-op back then.   

We have decided to try a course of liquid Calcitriol first, to see if that will raise my D level.   I will have my D and PTH, etc. retested in one month, and I'm due to see him in two.    On my own, I'm increasing my copper and K dosages, whether he has any familiarity with them or not.   This is my fourth endocrinologist, and I feel like I'm starting back at square one.

Please swing some chickens!

Chickens swinging & feathers flying, Julie!

Thank you for sharing your journey! It's awesome info for ALL of us to have & be aware of. Don't you just hate it, though, when you have to educate the doc, even specialists? Drives me crazy.

My B-i-L is being treated at the Cancer center in Ann Arbor, world class stuff. Even the best can be in the dark...Kudos - the NEXT DS patient will again benefit - this time from your teaching this doc some valuable DS information.

 Lindy - my dad is being treated there too....he is 73 years old and was diagnosed with a very aggressive form of prostate cancer seven years ago.....he's still kicking, and even though he has to be on chemo for the rest of his life, he's still getting out there and living life.  I credit them for enabling to do that.

The last thing the doctor said before we shook hands is, "We will learn about this together."    That was heartening.

Julie,
I really feel your frustration and concern. I don't have any ideas but just hope it all gets worked out for you.

Remind me...you've done enzymes to increase absorption?  And those also did nothing?  (You've tried so many things, I'm confused.)

 Tried enzymes for a year.    Did nothing.   Actually, my D is now higher than it's ever been - up to 37, yet my PTH is still climbing.   So, it's the calcium I'm not absorbing.    I guess the enzymes don't do much for calcium absorption.

Oh, Julie, I'm so sorry you didn't get more favorable news from the new endo in Ann Arbor. I can understand why you're so frustrated. It's sad when you have more knowledge to offer than the professionals you're paying to see for advice. No one can ever accuse you of not trying hard enough to find answers. I just hope and pray that those answers will come soon! Swinging my big Chessie dog for you and sending well wishes your way! 

Warmest wishes,
 
Lisa

Swingin', Julie, hon.

1.  What's hyl?  Prolong hyI have been having problems with random, acutely severe joint pain that is associated with hyperparathyroidism

2.   Is Calcitriol dry?

3.   Did the transdermal calcium help any?

4.   Do you think the MK4 is better than MK7?

hugs, Jenny

 LOL - I'm not sure what I was typing there, Jenny.   I think it had something to do with the fact that I was typing and eating lunch at the same time.    I think the beginning of the sentence was meant to say "I've been"

Actually, the calcitriol is an oil suspension that I take in drops.   It has been known to work though, in D resistant people.   I put it under my tongue and let it absorb sublingually.

The transdermal ca might have help my blood calcium, but from what I've read further, it doesn't do much for your bones.  The calcium absorption needs to occur in your gut.

Yes, the MK4 is supposed to be more effective than the MK7.

Julie, did you have ionized calcium drawn this time, or just serum?

Serum calcium isn't very reliable if albumin is low.  Back in the day I guess they used to estimate ionized calcium based on knowing serum calcium and albumin levels...there's a formula that is used to correct it, but I bet an actual ionized calcium would be a lot better.  I know the formula but I wouldn't dare pretend to be an expert--LOL.

Maybe it wouldn't be a bad idea to go see a nephrologist.  The kidney folks have all sorts of bone problems.

Did anyone ever think that phosphorous ever had anything to do with it?  Can you rattle me off your phos level when you get a chance?

It's just very odd because in theory, the calcium should be higher with hyperparathyroidism.

I don't think the calcitriol is a bad idea.

While we're at it, do you know your BUN and creatinine levels?

Did you ever have your urine tested for protein?