Hello, I'm new, having some DS issues and I'm scared :(

[barrelracinbroke]

And again, THANK YOU EVERYONE!!

 

[DianaCox]

• "my basic labs have pretty much stayed in check" - more details please - WHICH labs? This is what an actual DS basic list entails - please compare and tell us which ones you're missing:
  • You need to get all those other tests done ASAP
  • JUST BASIC LABS. CBC'S, CMP'S, AND THIS LAST ONE HAD A VITAMIN D-25 (CAME BACK AT 50.8), AN IRON SERUM (CAME BACK AT 89), BILLIRUBIN (CAME BACK AT .10), FERRITIN (CAME BACK AT 26) AND THYROID PANEL (TSH OF 1.96) INCLUDED. DEFINITELY NOT THIS DETAILED. I'M CALLING DR. K'S OFFICE TOMORROW. SHOULD I SEE HOW SOON HE CAN GET ME IN AND ASK HIM TO RUN THESE LABS OR HAVE MY PCP RUN THEM SOONER? HOPING DR. K CAN SEE ME THIS WEEK.
  • The numbers don't mean anything without the normal ranges included. But clearly, a lot of things are missing. If your PCP is cooperative, let him/her order the labs off the PacLap list.
• "Multiple vitamin with iron from Bariatric Advantage. Sometimes I take 2 pills, sometimes 3" HIGHLY unlikely that this is remotely adequate, especially if that's the ONLY vitamin you're taking.
• THAT IS THE ONLY VITAMIN I TAKE
• "I did have osteoporosis stemming from hyperparathyroidism. My PTH levels were off the charts. I had a parathyroidectomy" - I sure hope this parathyroidectomy was actually medically necessary. Lack of calcium, vitamin D, magnesium, vitamin K can lead to hyperparathyroidism - meaning your parathyroids were doing what they were supposed to do - leach calcium from your bones to KEEP YOU FROM DYING of low blood calcium. This mistaken diagnosis has been made over and over by endocrinologists who don't understand the DS, which is why we are SO adamant about patients KNOWING and UNDERSTANDING their surgery and how it works, and how to discuss it with their doctors!
• I WAS DIAGNOSED WITH HYPERPARATHYROID PRIOR TO DS. BUT WAS "TOLD" I JUST HAD SLIGHTLY HIGH CALCIUM AND NOT TO WORRY ABOUT IT......
• Maybe you DID have actual primary hyperparathyroidism - did they remove ALL of your parathyroids, or did they leave some?

• "I had taken 1200mg a day of calcium citrate (Citracal Max)" - Please confirm that you know that a 630 mg dose of calcium citrate in the form of Citrical Max is TWO pills.
• YES, I TAKE 6 PILLS A DAY OF CITRICAL MAX RIGHT NOW. Good - no more than two at a time, at least 2 hours between doses, right?

• Get your kidney function tests redone.
• THESE WERE JUST REDONE ON THURSDAY OF LAST WEEK. SHOULD I GET THEM DONE AGAIN? HE WAS GOING TO RUN ANOTHER URINE TEST NEXT WEEK. BUT WASN'T CONCERNED AT ALL ABOUT THE BLOOD TESTS IN THE METABOLIC PANEL. If they were just redone, that's probably fine - I would assume he would know if any other tests needed to be redone, including a more intensive look at your kidney function like IVP, CT scan, etc.

• "I had lowered my calcium this week back down to 1200mgs thinking the citrate was what the raise in urine PH might be from??" NONONONO! Calcium in your gut binds to oxalates in your food, to prevent them from getting into your blood. And high pH means your urine is TOO ALKALINE - low pH is high acid! Do NOT cut back on your calcium citrate! If anything, you may need a prescription like UroCit to INCREASE your blood citrate levels.
• OK, I WILL CONTINUE THE 1800 MGS (6 PILLS A DAY) OR SHOULD I TAKE MORE? BLOOD CALCIUM LEVEL WAS 9.7 WITHIN RANGE.
• Blood calcium levels are not affected by taking calcium until it's too late - calcium levels depend on osteoporosis indicators, in particular PTH - with your parathyroidectomy, I don't know what they should be measuring to determine whether your calcium intake is adequate.

• Get a stool culture.
• IS THIS SOMETHING DR. K CAN DO AS WELL? SHOULD I WAIT OR DO IT NOW?
• You could ask your PCP to order it

What fixes are likely necessary:

• I'm betting your D3 levels are in the toilet - after seeing your levels, you likely will need to start taking a buttload of DRY (water miscible) D3, 50K to 100K IU/day (disregard the RDA which is 2000 IU - it is meaningless for us).
• OK
• You should get BOTH kinds of vitamin K as well (K1 and K2), also in water miscible form, from or comparable to what Vitalady sells (not sure what's happening with her as she transitions her business to the new buyer)
• OK
• Vitamin A? Mine is still fine without ever supplementing, but YMMV
• IT'S IN THE MULTIVITAMIN I TAKE BUT NOT SURE OF MY LEVELS
• Start taking a good probiotic or two
• I ACTUALLY DID START TAKING ONE 2 DAYS AGO, FORGOT TO MENTION THAT. IT'S JUST A CVS BRAND. ANY RECOMMENDATIONS?
• I'm currently taking one Primal Defense Ultra in the AM, and a Culturelle at night - but the main thing is to take a lot of bugs, and include Saccharomyces boulardii.
• Zinc and magnesium levels are probably low too
• OK
• Coke (WITH sugar??) is bad for your bones too
• YES.... ADDICTION. AND IT'S STOPPED NOW.
• What are you eating with respect to protein?
• PROBABLY NOT THE RIGHT KIND. MOSTLY STEAK AND CHICKEN, SOMETIMES, SALMON OR SEAFOOD.
• Nothing wrong with that - but HOW MUCH per day? 80-100 g?
• How much fat are you eating?
• I asked about fat, not carbs
• I DO EAT A LOT OF CARBS. :/ Nothing wrong with that, since you are underweight, so long as they include mostly complex carbs and not just sugars, and avoid wheat and lactose in dairy, which can cause gastrointestinal distress.

 

[barrelracinbroke]

• "my basic labs have pretty much stayed in check" - more details please - WHICH labs? This is what an actual DS basic list entails - please compare and tell us which ones you're missing:
  • You need to get all those other tests done ASAP
  • JUST BASIC LABS. CBC'S, CMP'S, AND THIS LAST ONE HAD A VITAMIN D-25 (CAME BACK AT 50.8), AN IRON SERUM (CAME BACK AT 89), BILLIRUBIN (CAME BACK AT .10), FERRITIN (CAME BACK AT 26) AND THYROID PANEL (TSH OF 1.96) INCLUDED. DEFINITELY NOT THIS DETAILED. I'M CALLING DR. K'S OFFICE TOMORROW. SHOULD I SEE HOW SOON HE CAN GET ME IN AND ASK HIM TO RUN THESE LABS OR HAVE MY PCP RUN THEM SOONER? HOPING DR. K CAN SEE ME THIS WEEK.
  • The numbers don't mean anything without the normal ranges included. But clearly, a lot of things are missing. If your PCP is cooperative, let him/her order the labs off the PacLap list.
  • Yes, he is cooperative. I will have him order these. All of the above values came back within range. But, some of them looked to be low on the ranges. Should I post the results on the labs forum on here?
• "Multiple vitamin with iron from Bariatric Advantage. Sometimes I take 2 pills, sometimes 3" HIGHLY unlikely that this is remotely adequate, especially if that's the ONLY vitamin you're taking.
• THAT IS THE ONLY VITAMIN I TAKE
• "I did have osteoporosis stemming from hyperparathyroidism. My PTH levels were off the charts. I had a parathyroidectomy" - I sure hope this parathyroidectomy was actually medically necessary. Lack of calcium, vitamin D, magnesium, vitamin K can lead to hyperparathyroidism - meaning your parathyroids were doing what they were supposed to do - leach calcium from your bones to KEEP YOU FROM DYING of low blood calcium. This mistaken diagnosis has been made over and over by endocrinologists who don't understand the DS, which is why we are SO adamant about patients KNOWING and UNDERSTANDING their surgery and how it works, and how to discuss it with their doctors!
• I WAS DIAGNOSED WITH HYPERPARATHYROID PRIOR TO DS. BUT WAS "TOLD" I JUST HAD SLIGHTLY HIGH CALCIUM AND NOT TO WORRY ABOUT IT......
• Maybe you DID have actual primary hyperparathyroidism - did they remove ALL of your parathyroids, or did they leave some?
• They only found a small tissue that was working properly and they put it in my arm. So, I still have a small piece of tissue that still functions properly.

• "I had taken 1200mg a day of calcium citrate (Citracal Max)" - Please confirm that you know that a 630 mg dose of calcium citrate in the form of Citrical Max is TWO pills.
• YES, I TAKE 6 PILLS A DAY OF CITRICAL MAX RIGHT NOW. Good - no more than two at a time, at least 2 hours between doses, right?
• As of now, yes, Lol. I was taking 3 pills 2x a day.

• Get your kidney function tests redone.
• THESE WERE JUST REDONE ON THURSDAY OF LAST WEEK. SHOULD I GET THEM DONE AGAIN? HE WAS GOING TO RUN ANOTHER URINE TEST NEXT WEEK. BUT WASN'T CONCERNED AT ALL ABOUT THE BLOOD TESTS IN THE METABOLIC PANEL. If they were just redone, that's probably fine - I would assume he would know if any other tests needed to be redone, including a more intensive look at your kidney function like IVP, CT scan, etc.
• No, he says that since they're considered "in range" there's no reason to look further. I think I'm going to take my results to a nephrologist. Would they know about the calcium citrate to lower oxalate in urine and be able to direct me? Or is that a Dr. K thing?

• "I had lowered my calcium this week back down to 1200mgs thinking the citrate was what the raise in urine PH might be from??" NONONONO! Calcium in your gut binds to oxalates in your food, to prevent them from getting into your blood. And high pH means your urine is TOO ALKALINE - low pH is high acid! Do NOT cut back on your calcium citrate! If anything, you may need a prescription like UroCit to INCREASE your blood citrate levels.
• OK, I WILL CONTINUE THE 1800 MGS (6 PILLS A DAY) OR SHOULD I TAKE MORE? BLOOD CALCIUM LEVEL WAS 9.7 WITHIN RANGE.
• Blood calcium levels are not affected by taking calcium until it's too late - calcium levels depend on osteoporosis indicators, in particular PTH - with your parathyroidectomy, I don't know what they should be measuring to determine whether your calcium intake is adequate.
• Ok, I'll still close to my endo regarding my PTH levels and such. They've been within normal range since the surgery.

• Get a stool culture.
• IS THIS SOMETHING DR. K CAN DO AS WELL? SHOULD I WAIT OR DO IT NOW?
• You could ask your PCP to order it
• ok

What fixes are likely necessary:

• I'm betting your D3 levels are in the toilet - after seeing your levels, you likely will need to start taking a buttload of DRY (water miscible) D3, 50K to 100K IU/day (disregard the RDA which is 2000 IU - it is meaningless for us).
• OK
• You should get BOTH kinds of vitamin K as well (K1 and K2), also in water miscible form, from or comparable to what Vitalady sells (not sure what's happening with her as she transitions her business to the new buyer)
• OK
• Vitamin A? Mine is still fine without ever supplementing, but YMMV
• IT'S IN THE MULTIVITAMIN I TAKE BUT NOT SURE OF MY LEVELS
• Start taking a good probiotic or two
• I ACTUALLY DID START TAKING ONE 2 DAYS AGO, FORGOT TO MENTION THAT. IT'S JUST A CVS BRAND. ANY RECOMMENDATIONS?
• I'm currently taking one Primal Defense Ultra in the AM, and a Culturelle at night - but the main thing is to take a lot of bugs, and include Saccharomyces boulardii.
• alright, I'll get these as well
• Zinc and magnesium levels are probably low too
• OK
• Coke (WITH sugar??) is bad for your bones too
• YES.... ADDICTION. AND IT'S STOPPED NOW.
• What are you eating with respect to protein?
• PROBABLY NOT THE RIGHT KIND. MOSTLY STEAK AND CHICKEN, SOMETIMES, SALMON OR SEAFOOD.
• Nothing wrong with that - but HOW MUCH per day? 80-100 g?
• I have no idea. Sorry. Right now, I'm not eating much food at all. Trying though.
• How much fat are you eating?
• I asked about fat, not carbs
• Only what's in animal fat. I'm sorry, I'm not sure how to answer this correctly. I eat a lot of carne asada and chicken.
• I DO EAT A LOT OF CARBS. :/ Nothing wrong with that, since you are underweight, so long as they include mostly complex carbs and not just sugars, and avoid wheat and lactose in dairy, which can cause gastrointestinal distress.
• I don't eat a lot of sugar or dairy. Mainly pasta, potatoes, rice and mexican food type carbs.

 

[DianaCox]

Regarding food:

• OK, that's new to me - why on earth would they move a small piece of parathyroid tissue to your ARM? Can you explain?
• You should mention the kidney stuff to Dr. K, but I think that's mostly a nephrologist thing. What you should remind the nephrologist is that you don't absorb calcium well, as well as other nutrients and meds.
• Pasta gives many of us terrible gas - most wheat flour products, and often rice as well (I can eat SOME rice, but not too much)
• By fat, I mean freely using butter, mayo, sour cream, salad dressing, bacon, eggs, heavy cream, etc. Start adding more of that to your diet, and enjoy!

 

[barrelracinbroke]

The parathyroid thing may be relatively new. They put the healthy tissue in your arm because they claim it has the proper blood supply to help it continue to function properly. So far, it has worked well. I hope it continues to.

I don't eat much fats, lately anyway. I've had a lot of stress in my life lately and I'd lost some weight to begin with so, I didn't have a lot of cushion to have this start to happen.

Do you think there's any chance I could just have a "bug"? Is that why you mentioned a stool culture? Problem is, I've been this way for a couple of weeks now. So, I'm obviously frightened that I'm going to just wither away. I hope Dr. K is willing to see me. I don't know where else to turn. I know not many regular docs know about our DS problems. I will let him know about my kidney concerns and also see a nephrologist.

My mom just came over to sit with me since my husband had to go to work. And she's trying to get me to eat some chicken and mashed potatoes, I'm having a super hard time even getting it down.

 

[barrelracinbroke]

Can our intestinal flora get out of whack and cause us more bowel movements? Is that why you mentioned a probiotic as well? As I said, I was quite sick a couple of weeks ago and things just haven't been right since. Now I just don't want to eat at all. I'm trying hard.

 

[Elizabeth N.]

You could have a plain old bug. You could also have a horrible bug that needs the latest and greatest antibiotics long term to fix. This is why a culture would be appropriate.

Yes, our gut flora can get phenomenally out of whack, and probiotic therapy can help a lot.

Have you ever taken Creon to improve absorption?

What kind of protein supplements are you using?

 

[barrelracinbroke]

Ok, Thank you. Dr. K's office opens at 9am, I'll be calling them the second they open.
I will get a better probiotic today.
I've never taken creon, didn't know what it was until I came to this site. I will be asking Dr. K about that as well.
I'm not taking any protein supplements.

 

[DianaCox]

Talk to Dr. K about Creon - it is a prescription medication comprising the enzymes that are kept apart from our food in order to make the DS work - sometimes, supplementing with these enzymes, so more of what you eat is absorbed, can get you past a period of time when you are for some reason not absorbing as much, or eating enough.

Yes, your intestinal flora can get out of whack when you're sick, especially if you take antibiotics.

 

[barrelracinbroke]

I'm on my way to Dr. K now!! He's a couple of hours away but I couldn't believe it when he himself got on the phone with me, not even being a current patient and said to get in there right away.
I can't thank you all enough for the referral to him and I will update you when I can. Thank you so much!! And I will talk to him about Creon definitely!

 

[Larra]

@barrelracinbroke hopefully you are hitting the road and not reading this and will read it later, but I'm just so glad you called him promptly this morning and that he will help you. Things may look bleak today but I am sure you can be helped, and you are obviously willing to learn more and do your part.
Please come back here when you get home and let us know how everything went and what the plan is going forward.

 

[DianaCox]

Regarding the parathyroid autotransplantation: http://endocrinediseases.org/parathyroid/surgery_autotransplantation.shtml

"Parathyroid autotransplantation involves taking parathyroid tissue and placing it into the muscle of either the neck or forearm. In cases where the autotransplant is made of hyperactive parathyroid tissue, it is usually placed in the arm for easy access in the future if it were to grow and overfunction. If some of the tissue has to be removed, this can be done very safely under local anesthesia without the risks of reoperating in the neck. Autotransplantation is usually done in re-operative cases or in cases of total parathyroidectomy for four gland hyperplasia. The parathyroid tissue is usually cut into 1 to 2 mm pieces and is placed in small pockets within the muscle. While the gland does not function immediately, it will develop a new blood supply and will typically start working within 4 to 6 weeks. The patient will need to take both calcium and calcitriol (Vitamin D) pills and occassionally intravenous (IV) calcium until the autotransplant starts working."

Really interesting!

Looking forward to hearing the update after your appointment with Dr. K.

 

[Munchkin]

Another thing you can do in ADDITION to oral meds is patches. The patches absorb through the skin so your malabsorbtion doesn't come in to play since they never hit your stomach/intestines. Try the multivitamin and the calcium/D3 patches for starters. Go to PatchMD and be sure to get the 40% off coupon too.

 

[DianaCox]

Is there any REAL data for any of the patches, Pat?

 

[Elizabeth N.]

Very glad you connected with Dr. K! He will probably mention things like Creon, protein supplements and, if you are in dire enough straits, TPN. There are lots of things to try before looking at further surgery, barring unforeseen medical issues that might make it necessary.