Vitamin D3 deficiency and HMS

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Re: osteoporosis, osteopaenia, Vitamin D deficiency?

Postby anna » Sat Feb 26, 2011 1:10 pm

Thanks, Eloise for the info
hi, hms sufferer, diagnosed at age 45!!!!!
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Re: osteoporosis, osteopaenia, Vitamin D deficiency?

Postby lil_miffy » Thu Mar 17, 2011 7:54 am

Iv started taking Adcal this week after my recent bloods showed my vit d levels are quite low.
My gp perscribed them. I take 2 a day (lunch and evening). ITs the lemon flavoured chalky chewable/suckable ones. I find they are fine taste wise but Iv been downing movical every day for the past 18months (which tastes like sea water) so probably immune to the foul taste of meds now.

I have noticed my acid reflux is back which went away after i came off topirimate so im hoping it doesnt get too bad.
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Vitamin D3 deficiency and HMS

Postby trekster » Fri Sep 30, 2011 11:44 pm

i was on high strength D3 sometime ago which eased my depression. It also helped with the pain.

Was wondering how many D3s to take because im a bit confused as to how {mod edit - dosage information removed. Please note that this is included in the ban on quoting medication doese} units would be
described on an OTC bottle?

At the beginning of this year my bendiness was mostly hidden by the D3 treatment so im thinking
of trying again.

Has anyone found that a D3 deficiency once treated has improved their pain and fatigue levels with HMS?
Alexis

Aspergers, Fibro, OCD, C-PTSD, insomnia, dyslexia, raynauds, mild carpel tunnel, gluten and dairy intolerance
part time wheelchair user.

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Re: Vitamin D3 deficiency and HMS

Postby nemonie » Thu Oct 06, 2011 1:57 am

Vit D deficiency by itself can cause bone and muscle pain, so treating the deficiency can improve pain levels. A lot of us bendies tend to have low vit D levels and are often prescribed vit D supplements. Have you had your bloods checked lately to see if you need to supplement your levels?
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Re: Vitamin D3 deficiency and HMS

Postby trekster » Sun Nov 13, 2011 2:52 am

Forgot to ask the rhemy to check my blood levels but have got a better dose from the physio.
Alexis

Aspergers, Fibro, OCD, C-PTSD, insomnia, dyslexia, raynauds, mild carpel tunnel, gluten and dairy intolerance
part time wheelchair user.

HMS diagnosis 27/9/11

Feel free to PM me about adult autism social groups in the Bristol and Bath area.
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Re: Vitamin D3 deficiency and HMS

Postby fancypants » Sun Nov 13, 2011 6:07 am

Gosh, that's all interesting. I was deficient about 18 months ago. I haven't been retested though. I have been supplementing but I must check.

Be careful on Vit D, it's one of the ones we don't eliminate & is toxic if you have too much. Do you get much natural sunlight? I'm lucky we've moved to a new spot & I get more sun now so I might even be able to stop supplementing...won't know until I'm tested though.

All the best.
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Re: Vitamin D3 deficiency and HMS

Postby DeeNJai » Mon Nov 14, 2011 8:43 pm

I have been put on Calci-chew D3 Forte since 22 October because I was very low on D3 for some reason. I have just had my blood tests done to check everything to see if anything has changed since the last tests on 28 September.
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Re: Vitamin D3 deficiency and HMS

Postby Turbogirlie » Fri Dec 02, 2011 1:54 pm

This is interesting - I feel loads better for being outside & especially in the sun, knew about VitD but always cautious about taking supplements as figure you can have too much, as stated in the posting above.

So how do you get your bloods tested? Do you ask your GP for a specific test? I had surgery in June this year, and had bloods done for the pre-op which were all 'normal'.

Although my step mum swears by Evening Primrose Oil, which I may try, she took it for the menopause as didn't get on with HRT, & is still taking it, 25+yrs later and has no aching joints or creaks/cracking...
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Re: Vitamin D3 deficiency and HMS

Postby LazyHaze » Thu Feb 02, 2012 12:21 pm

My dad told me to try taking vitamin D3 to see what happened, he listened to a program on radio 4. I've been taking it for about 2 weeks now, I haven't noticed a huge yet difference, as it's only early days but I think my energy levels are climbing slowy
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Re: Vitamin D3 deficiency and HMS

Postby RainbowsButterflies » Thu Feb 02, 2012 12:30 pm

I had my Vit D levels checked in November and they were just about OK. GP advised me to spend more time outside (I thought we could only produce it April - September in the UK) and increase dairy? I've started taking multivitamins as I figured a top-up wouldn't hurt.
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Re: Vitamin D3 deficiency and HMS

Postby Rosie » Thu Feb 02, 2012 1:50 pm

Hi all

I had mine checked a few weeks ago at Stanmore and have now been told I need vit D injection, and the chewy tables as well, and further blood tests to see if my levels have increased. I don't know whether the vit D problems with peeps with HMS is to do with our bodies not producing enough, not absorbing enough or what! I presume that we can absorb it or tablets would be pointless.

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Diagnosed HEDS December 1st 2005. DD1 (20) HEDS and scoliosis (now corrected by surgery), diagnosed June 2006. DD2 (18) mild HMS. Son (11) some hypermobile joints, poor muscle strength and seems to be developing scoliosis as well, woopee!
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Re: Vitamin D3 deficiency and HMS

Postby trekster » Fri Feb 03, 2012 12:29 am

When i start getting generally achy (ie not a sublux but a general ache) and/or depressed i start back on my D3 tablets.
I have a deficiency as my previous rhemy Dr A felt that our levels should be at 80 or above (that was before my HMS
as he missed it). Dr W could have a different viewpoint on it, but will ask him if i can get the levels checked again
and how much of my D3 tablets i should be taking.
Alexis

Aspergers, Fibro, OCD, C-PTSD, insomnia, dyslexia, raynauds, mild carpel tunnel, gluten and dairy intolerance
part time wheelchair user.

HMS diagnosis 27/9/11

Feel free to PM me about adult autism social groups in the Bristol and Bath area.
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Re: Vitamin D3 deficiency and HMS

Postby RainbowsButterflies » Fri Feb 03, 2012 12:41 am

80 or above - that's interesting... Mine was 50 and I was told it was OK.
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Re: Vitamin D3 deficiency and HMS

Postby trekster » Fri Feb 03, 2012 12:45 am

I was told at the time that 80 is the ideal level, ie above OK. Hope that makes sense, the rhemy that told me moved on so I'm not seeing him again.
Alexis

Aspergers, Fibro, OCD, C-PTSD, insomnia, dyslexia, raynauds, mild carpel tunnel, gluten and dairy intolerance
part time wheelchair user.

HMS diagnosis 27/9/11

Feel free to PM me about adult autism social groups in the Bristol and Bath area.
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Re: Vitamin D3 deficiency and HMS

Postby Eloise » Fri Feb 03, 2012 10:18 am

Just be careful trying to find a number to compare. There are varying different forms of vitamin D that are tested for, differing units, and each lab will have their own reference range depending on the technique and machines they use.
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