Osteoporosis, Kidney Stones or Morbid Obesity?

Spiky Bugger

Well-Known Member
Those are my current choices.

And while the stones ARE directly related to the DS, the osteoporosis—which my mom had—might be merely exacerbated by the DS.

So...what would YOU do?

1-take forteo to hopefully minimize borne breakdown but make kidney stones worse?
2-do not take forteo and maybe not get kidney stones but for sure get more fractures?
3-Reverse the DS, for sure gain some weight and maybe resolve the kidney stone and osteoporosis problem?


I should have made this a poll, but I’m not doing that because I’m mad as hell that the Lab Corp geniuses gave me the WRONG specimen container and I must now do a NEW 24-hour urine collection.
 
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Sheanie

Well-Known Member
Aw, hell no. Wrong container? What the hell.

Those choices all are bad. But, why is Forteo your only drug option? What about Prolia or another non-bisphosphonate?
 

southernlady

Administrator
Staff member
Oh, hell. I’d be mad as hell at having to redo the urine collection.

As far as your options, see if there is a different option than forteo. If there isn’t, I’d take osteoporosis for $200, Alex.
 
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k9ophile

Well-Known Member
I also have this DS trifecta. Just my opinion, yet I'd never consider reversing my DS. It took me a good three months to even begin to feel human and I'd be scared of a repeat recovery. As for you mother's history, I have the same. Maybe we should have picked different parents. Yes, having to collect urine again, I would put into the slightly irritating file. I had a five hour glucose tolerance test that collected blood and urine every hour for 5 hours. I should have only needed to be poked with a needle 6 times, but ended up with at least a dozen attempts on both arms. Pee into a plastic hat for 24 hours then pour into a big jug? Piece of cake.

I wish there was more glitter and unicorns to deal with this crap. There isn't, so I pull up my old lady yet slighter smaller panties (compared to pre-DS size) and deal with it. Again, best wishes for a resolution and solution you can live with.
 

Spiky Bugger

Well-Known Member
Aw, hell no. Wrong container? What the hell.

Those choices all are bad. But, why is Forteo your only drug option? What about Prolia or another non-bisphosphonate?
I have been REPEATEDLY advised that only FORTEO builds new bone. (I’ve read that the COMB protocol does, too...but it calls for fish oil...and we have trouble absorbing any oil.)
 

Spiky Bugger

Well-Known Member
Oh, hell. I’d be mad as hell at having to redo the urine collection.

As far as your options, see if there is a different option than forteo. If there isn’t, I’d take osteoporosis for $200, Alex.
Even though...osteoporisis causes permanently crippling broken bones and immobility and stones “only” cause temporary mortal pain of the jumping off bridges variety?
 

Spiky Bugger

Well-Known Member
I also have this DS trifecta. Just my opinion, yet I'd never consider reversing my DS. It took me a good three months to even begin to feel human and I'd be scared of a repeat recovery. As for you mother's history, I have the same. Maybe we should have picked different parents. Yes, having to collect urine again, I would put into the slightly irritating file. I had a five hour glucose tolerance test that collected blood and urine every hour for 5 hours. I should have only needed to be poked with a needle 6 times, but ended up with at least a dozen attempts on both arms. Pee into a plastic hat for 24 hours then pour into a big jug? Piece of cake.

I wish there was more glitter and unicorns to deal with this crap. There isn't, so I pull up my old lady yet slighter smaller panties (compared to pre-DS size) and deal with it. Again, best wishes for a resolution and solution you can live with.

Oh...the urine collection thing is slightly irritating...the having to reschedule three doctors’ appts and delay thec start of whatever treatment I choose...that just added salt to the wound. (And I’m sore from PT and have a runny nose...but, yes, I am bitching a tad more than necessary.)
 

Larra

Well-Known Member
Or take the fish oil with some digestive enzymes, sort of a partial, temporary reversal, and see if that helps?
You have a very complex medical situation, I can't speak from your experience, only from my own. I would not reverse my DS for anything...she said, having no knowledge of what the future holds.
 

hilary1617

First time at the rodeo.
Is there no medicinal stone-preventative to take in concert with Forteo? Sorry you are having such a rough time. I suspect DS or no you'd probably have osteoporosis, not sure reversing it would prevent stones. I do know it would put you at risk for all of the comorbidities of obesity and that's not a risk I would take...
 

Spiky Bugger

Well-Known Member
Or take the fish oil with some digestive enzymes, sort of a partial, temporary reversal, and see if that helps?
You have a very complex medical situation, I can't speak from your experience, only from my own. I would not reverse my DS for anything...she said, having no knowledge of what the future holds.
Brilliant...or at least potentially brilliant, response!

So, the COMB protocol. A one-shot deal with no announced plans for replication attempts. (Because there's no money in it?)

I take more than recommended of everything but fish oil.



Table 1
Combination of micronutrients (COMB) Protocol for Bone Health.

COMB protocol for bone health
(1) Docosahexanoic acid or DHA (from Purified Fish Oil): 250 mg/day
(2) Vitamin D3: 2000 IU/day
(3) Vitamin K2 (non-synthetic MK7 form): 100 ug/day
(4) Strontium citrate: 680 mg/day
(5) Elemental magnesium: 25 mg/day
(6) Dietary sources of calcium recommended
(7) Daily impact exercising encouraged


Table 3
Pre and Posttreatment bone density.

Pretreatment result (Mean ± SD) Posttreatment result (Mean ± SD) P value
Femoral neck (z-score) −0.51 ± 0.74 −0.24 ± 0.81 0.03*
Total hip (z-score) −0.27 ± 0.82 −0.06 ± 0.84 0.12
Lowest hip site (z-score) −0.61 ± 0.71 −0.27 ± 0.81 0.006*
L1–L4 spine (z-score) −0.85 ± 0.98 −0.39 ± 1.07 0.006*
Lowest spine site (z-score) −1.40 ± 0.95 −0.67 ± 1.07 <0.001*

*Significant value.



I stopped takng math when math involved imaginary numbers and exclamation points. That isn't math. But I still do WORDS! So, here are some words from that study:

"A major proportion of the patients had an increase in BMD of more than 3% within the first year of therapy alone. There were no reported side effects with the use of this therapy among those taking the intervention for the year and the literature suggests long-term safety with each of these agents—this might contribute to greater compliance with the subgroup of patients who are reluctant to use pharmacologic therapies. For those who completed the course of therapy, the acceptability was high."
 

Spiky Bugger

Well-Known Member
Is there no medicinal stone-preventative to take in concert with Forteo? Sorry you are having such a rough time. I suspect DS or no you'd probably have osteoporosis, not sure reversing it would prevent stones. I do know it would put you at risk for all of the comorbidities of obesity and that's not a risk I would take...
Urocit-K—it decreases acidity of urine, lessening the chance of stones. The “wax matrix delvery system” may not be totally compatible with the oddities of the DS rerouting. I have to check on that.
 
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