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kim h

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loss of vit D....anyone else?
Nov 20^th, 2012 at 1:19am

hi everyone, i was just wondering if any one has had a drop in vit D after stroke or surgery? my daughter MM and DS..etc, had 2 stroke's nearly 2 years ago, surgery 14 months ago and in the last 12 months has had a big drop in vit D.. we have spent extra time in the sun etc but it's still dropping to the point of now we have to do a big hit of supplementing.. Tongue

the doctor's are now questioning if she is having trouble absorbing other vit and minerals as well and thinking they will have to start her on thyroid meds (no problem with thyroid) to help... Roll Eyes

anyone else out there that has any thing like it? ...or is it just my daughter ... and her special thing! Wink

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azhurds

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Re: loss of vit D....anyone else?
Reply #1 - Nov 20^th, 2012 at 10:17am

My daughter who has Down Syndrome and is 5 has low Vitamin D. We just had her retested a few months ago and her levels were in the normal range but we still are suppose to give her Vitamin D just not a high dose. I never thought much about it and that it was her special thing but now that you mention it who knows. It would be interesting to see what other people have to say. I know when it was mentioned to me one of the concerns with low vitamin D is a thyroid disease and since she already has a thyroid issue they just wanted to rule everything out. The doctor did say the thyroid disease is really rare and don't have much concern. My husband and I started laughing and said um we have have a child with Down Syndrome and she has a rare brain disease and also has Alopecia and she has not had hair on her head in over 2 yrs. The doctor just smiled and nodded his head and then said ya I see your point.

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mg12061

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Re: loss of vit D....anyone else?
Reply #2 - Nov 20^th, 2012 at 12:39pm

My daughter also has DS and MM. She has hypothyroid and has been taking levothyroxine since she was 2. Hypothyroid is actually something that people with DS are more succeptible to haveing. My daughter was tested for vitamin levels a couple eyars ago because she was diagnosed with Celiac disease another thing individuals with DS are more succeptible to having. It was low and she was put on a suplement. Celiac and thyroid are things that individuals with DS shoudl be checked for regularly. The symptomes for both can be easily missed. Especially if they are having difficulty absorbing vitamins. I hope this helps.
Mary Grace

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kim h

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Re: loss of vit D....anyone else?
Reply #3 - Nov 20^th, 2012 at 10:07pm

kim h wrote on Nov 20^th, 2012 at 1:19am:

hi everyone, i was just wondering if any one has had a drop in vit D after stroke or surgery? my daughter MM and DS..etc, had 2 stroke's nearly 2 years ago, surgery 14 months ago and in the last 12 months has had a big drop in vit D.. we have spent extra time in the sun etc but it's still dropping to the point of now we have to do a big hit of supplementing.. Tongue

the doctor's are now questioning if she is having trouble absorbing other vit and minerals as well and thinking they will have to start her on thyroid meds (no problem with thyroid) to help... Roll Eyes

anyone else out there that has any thing like it? ...or is it just my daughter ... and her special thing! Wink

my daughter has checks every 6 month for everything ..... nothing has moved except the vit D i was talking to a MM friend not DS she has had a drop since her strokes as well! very interest i think!

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kim h

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Re: loss of vit D....anyone else?
Reply #4 - Dec 6^th, 2012 at 5:07am

kim h wrote on Nov 20^th, 2012 at 10:07pm:

kim h wrote on Nov 20^th, 2012 at 1:19am:

hi everyone, i was just wondering if any one has had a drop in vit D after stroke or surgery? my daughter MM and DS..etc, had 2 stroke's nearly 2 years ago, surgery 14 months ago and in the last 12 months has had a big drop in vit D.. we have spent extra time in the sun etc but it's still dropping to the point of now we have to do a big hit of supplementing.. Tongue

the doctor's are now questioning if she is having trouble absorbing other vit and minerals as well and thinking they will have to start her on thyroid meds (no problem with thyroid) to help... Roll Eyes

anyone else out there that has any thing like it? ...or is it just my daughter ... and her special thing! Wink

my daughter has checks every 6 month for everything ..... nothing has moved except the vit D i was talking to a MM friend not DS she has had a drop since her strokes as well! very interest i think!

after a few day's of different posts, there is now 9 other people with this and not with DS any one else???? could this be a side affect of MM???? Shocked

and if it is ... could Vit D be part of the treatment of MM????

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Mayhem MM.com Sponsor Offline diagnosed 1996 Posts: 92 Rochester, USA, NY, New_York Gender:	Re: loss of vit D....anyone else? Reply #5 - Dec 15^th, 2012 at 10:55am I have low D levels and take mega-supplements.
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russan1959 Junior Poster Offline I love YaBB 1G - SP1! Posts: 55 Palatine, USA, IL, Illinois Gender:	Re: loss of vit D....anyone else? Reply #6 - Dec 17^th, 2012 at 11:42am Me too. Mega supplements of Vitamine D. I wonder what % of the genreal poulace have this condition.
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mc823923 Junior Poster Offline My dauaghter Annamarie lives with mm Posts: 83 Baton Rouge, USA, usa, 345, 271, LA, Louisiana Gender:	Re: loss of vit D....anyone else? Reply #7 - Dec 17^th, 2012 at 5:23pm My daughter also has DS and had hypothyroidism which changed to hyperthyroidism and then Graves Disease. She had her throid removed in September and also has low Vit D, Phospheros and calcium.
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kim h New Poster Offline I Love MM.com! Posts: 13	Re: loss of vit D....anyone else? Reply #8 - Dec 25^th, 2012 at 7:26pm i'm starting to wonder % too i think i might draft a letter to the stadford uni to find out more on this... does anyone have any contacts there, i'm in australia and there is very little infomation here! i have got the web sight for the uni just not shore where to send it to
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mg12061

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Re: loss of vit D....anyone else?
Reply #9 - Apr 11^th, 2013 at 7:40am

I was just reading a post in the guest book about someone wiht low d levels and it really got me thinking. Kathleen tested low for vitamin D also but we related it to the celiac disease since most people with celiac have low vitamin levels especialy D. But it could be related in some way to MM. Wondering if the low levels are related as "cause or effect" of MM. This thread should be maybe bumped up once in a while just to get responses. Very interesting...
Mary Grace

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grandmaduck62 New Poster Offline I Love MM.com! Posts: 3 Port Neches, Texas Gender:	Re: loss of vit D....anyone else? Reply #10 - Apr 25^th, 2013 at 6:11pm Hi, I was diagnosed with moyamoya at 58 in 2008. I have been on Dr prescribed Vitamin D supplements for the last 3 years. Every time I stop my D goes way down. Huh I thought it was just me
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