Post by Simba on Dec 20, 2014 20:21:11 GMT -5
I have found that as DSers we have an interesting uphill road to travel, especially when/if our PO issues really have nothing to do with the DS but due to medical proferssional assumptions, laziness, and plain ignorance it just comes down to "that complication comes from your DS". This can be very dangerous, medical professionals will just stop looking, symptoms are addressed (sometimes) but root cause is unknown. I have heard this so many times. Let me share part of my story.
Anyone who is diagnosed with metabolic bone disease should think long and hard before having a malabsorptive procedure and should not be taken lightly. I knew going into the DS that it could be disasterous for me, but we have to look at the big picture, long story, but before this becomes War and Peace I will try to be short.
My metabolic bone disease was established before DS, with my high PTH, etc. Even though this is brought up repeatedly in office visits, that I had metabolic bone disease before, it is still blamed on the DS? Again with that? Seriously can't you come up with anything else, I am so sick to death of that one especially? and this is every time, this is a form of insanity. Oh and an oldie but goodie is "DS is the same as gastric bypass" really I am quickly looking for the exit door. I have gone through so many endocrinologists, multiple bone endocrinologists, etc. I have to say the worse specialists I have encountered are by far endocrinologists for various reasons. For them not being able to blame the DS (I won't let them get away with that) they are at a loss.
I was also severly anemic before my DS. But still the DS was blamed? Again? this is getting real old. all right well here is another one, my TSH is depressed (since I am on dessicated) so that is the reason for my metabolic bone disease? So my depressed TSH causes my metabolic bone disease? the metabolic bone disease I had years before I had my thyroidectomy? No wait sorry it is your DS? Wait, you didnt just say that did you? You are joking? So even though I had my thyroidectomy the year AFTER my DS and I had metabolic bone disease before my DS it is still the DS? This is just absurd. Absurd as it may be, true it is.
Why am I sharing this? Because we only know what we know, there is so much ignorance, the DS is easy to blame, it may very well be the DS but it may not be, in my case, the DS didnt cause any of these (but malabsorption does make it more challenging). If I didnt have pre-DS blood work to show this, it would just be "that complication comes from your DS". keep asking questions if something doesnt make sense, and everyone should do their research, get 2nd, 3rd medical opinions, if needed, that gut feeling. I guarantee that 10-15 mins you spend with your dr will not be enough if you totally rely on him/her. As a well informed patient you can come in with concerns, questions, options etc.
Anyone who is diagnosed with metabolic bone disease should think long and hard before having a malabsorptive procedure and should not be taken lightly. I knew going into the DS that it could be disasterous for me, but we have to look at the big picture, long story, but before this becomes War and Peace I will try to be short.
My metabolic bone disease was established before DS, with my high PTH, etc. Even though this is brought up repeatedly in office visits, that I had metabolic bone disease before, it is still blamed on the DS? Again with that? Seriously can't you come up with anything else, I am so sick to death of that one especially? and this is every time, this is a form of insanity. Oh and an oldie but goodie is "DS is the same as gastric bypass" really I am quickly looking for the exit door. I have gone through so many endocrinologists, multiple bone endocrinologists, etc. I have to say the worse specialists I have encountered are by far endocrinologists for various reasons. For them not being able to blame the DS (I won't let them get away with that) they are at a loss.
I was also severly anemic before my DS. But still the DS was blamed? Again? this is getting real old. all right well here is another one, my TSH is depressed (since I am on dessicated) so that is the reason for my metabolic bone disease? So my depressed TSH causes my metabolic bone disease? the metabolic bone disease I had years before I had my thyroidectomy? No wait sorry it is your DS? Wait, you didnt just say that did you? You are joking? So even though I had my thyroidectomy the year AFTER my DS and I had metabolic bone disease before my DS it is still the DS? This is just absurd. Absurd as it may be, true it is.
Why am I sharing this? Because we only know what we know, there is so much ignorance, the DS is easy to blame, it may very well be the DS but it may not be, in my case, the DS didnt cause any of these (but malabsorption does make it more challenging). If I didnt have pre-DS blood work to show this, it would just be "that complication comes from your DS". keep asking questions if something doesnt make sense, and everyone should do their research, get 2nd, 3rd medical opinions, if needed, that gut feeling. I guarantee that 10-15 mins you spend with your dr will not be enough if you totally rely on him/her. As a well informed patient you can come in with concerns, questions, options etc.
