15....15 years and a little...Long term vets a tad of input may be needed

* Nicole *
on 10/16/20 6:51 am

Hey DSrs

Im around but quiet, dealing with alot craziness but nothing bad(none of it Covid). I have no regrets and truthfully most days my DS isnt even on my mind. Cause well life is "normal".

Now for my long term vets lets talk labs. I FINALLY found a family dr that listens. So I got indepth labs done for the first time in sorry to say 10 years. Ive had basic pulls and random checks but not a really deep pull.

For the most part everything is good. Yes even my D (103), yeah its a smidge over the high end of normal. So I take 1 D less a week now (50,000 iu 6 days a week instead of everyday). My labs truthfully are great besides 3 of them which all are a hair below low end normal. Thoes being my E, K and LDL (and total cholesterol in general). My diet is mainly meat and veggies. Some fruits. I do have to watch potassium levels of foods I eat, as I sodium waste and cannot let things get out of balance. But hey add more salt.

With the E, my alpha is 5.1 (according to my lab 5.5 is low normal) my gamma is 0.2 (0.0 is low normal so its a hair above). I never really supplemented it before but have started to. Even though I do eat many things rich in it (veggie wise).

My K is 0.15 nmol\L (.22 is low normal) again I eat plenty of veggies ri***** Ive started supplementing. I get retested on thoes in a few months.

Now Im actually more concerned about my cholesterol being so brutally low. Our body and brain does need cholesterol, its just in excess its not good. So my total is 104 , yeah I said it my total is 104. My LDL is a measly 38, which everything Ive read below 40 isnt too ideal but so few people deal with low cholesterol there isnt much info out there.

Opinions vets?

The kicker with this....and I point blank looked at my dr and said at the follow up. Look at thoes labs and look at me....dont match do they. And she agreed that you wouldnt think they were right. Im 5'9" and 228lbs(dont look it) in a size 12 jean but cant wear normal jeans as they arent big enough for my legs now, lol, damn weight lifting. So Im finally going to get testing done for the multiple connective tissue disorders that we think are at play.

DS Aug 15th,2005 @ goal, living life and loving it.

"An Arabian will take care of its owner as no other horse will, for it has not only been raised to physical perfection, but has been instilled with a spirit of loyalty unparalleled by that of any other breed."

lightweightds
on 10/16/20 7:56 am

Hi Nicole,

Hope this message finds you well. I don't have an answer to your question, but happen to notice you had recently posted it and have been trying to talk to someone who has had DS in helping make the decision. Wondering if you are available to talk.

* Nicole *
on 10/16/20 9:59 am

Im glad to chat a bit with the info I know and my experiences. But all in all the choice is yours. But glad to chat

DS Aug 15th,2005 @ goal, living life and loving it.

"An Arabian will take care of its owner as no other horse will, for it has not only been raised to physical perfection, but has been instilled with a spirit of loyalty unparalleled by that of any other breed."

Janet P.
on 10/22/20 3:48 am

Hey Nicole - we're all so different but glad you have finally found a doctor - I've been through so many over the years (I'm almost 18 years post op). The cholesterol is confusing. How's your fat intake? If you don't get answers here try locating a bariatric nutritionist who may have some ideas. I realize the DS is such a specialized procedure and not many doctors do it anymore.

Janet in Leesburg
DS 2/25/03
Hazem Elariny
-175

* Nicole *
on 10/23/20 4:28 pm

Yeah most bariatric folk round my area dont have a clue about the DS. Even new dr didnt know but was so open to learning and listening. Including what labs I really needed.

But as for fat, Im full fat everything. I drown eggs in butter when I cook them, which I eat 4 each morning. I add butter to steaks, everything. I do not limit myself with fats at all. Maybe I need to eat more taco bell again, lmao.

DS Aug 15th,2005 @ goal, living life and loving it.

"An Arabian will take care of its owner as no other horse will, for it has not only been raised to physical perfection, but has been instilled with a spirit of loyalty unparalleled by that of any other breed."

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