I am 19 years post op DS with DR Rabkin . I need help with issues I am having at present . Secondary Hyperparathyroidism. Do I need to have a endocrinologist to handle this?

My hematologist suggested this since he follows my Iron and gives me the IV iron which works great.

Also what is the best osteoporosis med to take?? I am on Prolia which is expensive and my primary care Dr ordered it.

I was 264lbs pre DS and am 156 now.

I do have dental issues, and autoimmunine issues (may not be DS related)

Is there any other long term DS patients out there????

Hi, I am 8.5 years post-op. I've needed IV iron infusions 2x now and am likely going to need them again now. I see a reproductive endocrinologist (trying to freeze my eggs) who put me on synthroid for hypothyroidism. I also have fibromyalgia. I never lost nearly as much as I wanted to with DS but also started grad school within 6 months of getting the surgery and then lost both my parents within 3 years of each other and starting school. So it's been a challenging 8 years!

I'm now refocusing on losing weight and my health (both physical and mental health!) and making that my sole focus for the next 6 months as I was laid off. I'm working out, going to therapy, counting calories, and seeing a slew of doctors. Happy to be a sounding board and cheerleader to you as you navigate things!

On 10/24/2022 at 11:49 AM, jvktt64@gmail.com said:

I am 19 years post op DS with DR Rabkin . I need help with issues I am having at present . Secondary Hyperparathyroidism. Do I need to have a endocrinologist to handle this?

My hematologist suggested this since he follows my Iron and gives me the IV iron which works great.

Also what is the best osteoporosis med to take?? I am on Prolia which is expensive and my primary care Dr ordered it.

I was 264lbs pre DS and am 156 now.

I do have dental issues, and autoimmunine issues (may not be DS related)

Is there any other long term DS patients out there????

On 10/24/2022 at 11:49 AM, jvktt64@gmail.com said:

I am 19 years post op DS with DR Rabkin . I need help with issues I am having at present . Secondary Hyperparathyroidism. Do I need to have a endocrinologist to handle this?

My hematologist suggested this since he follows my Iron and gives me the IV iron which works great.

Also what is the best osteoporosis med to take?? I am on Prolia which is expensive and my primary care Dr ordered it.

I was 264lbs pre DS and am 156 now.

I do have dental issues, and autoimmunine issues (may not be DS related)

Is there any other long term DS patients out there????

I'm almost 18 years out. I've used Reclast since 2013. But it hasn't helped my Dexa much. We're trying Forteo (the co. offers a very inexpensive price if you speak with them). You might want to reach out.

I had tooth issues early on. Then last year, I needed 2 root canals. But I doubt those are DS related.

As for the Secondary Hyperparathyroidism, I believe an endocrinologist and nephrologist would be helpful.