Sticky Blood-Hughes Syndrome Support
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Vit D

Hi I have been told by GP my vitiam D is very low even after taking daily supplements for over a year and a boost for 7 weeks first test was 33 and now after boost its dropped slightly to 30 does anybody know what else I can do to get it back in range ?


17 Replies


I think you should have a talk about this with your Specialist of HS/APS and SLE(Lupus) as we are not medical trained here.

I hope you have a Specialist of autoimmun illnesses and not only your GP to ask this question.

Best wishes from Kerstin in Stockholm


Thanks x


Hi, I take supplements prescribed for my Vit D defiency which on the whole keeps me stable.

The sun helps in the summer (when its not raining of course!)

I cant think of anything else - I would speak to your APS specialist for help on this. x


Thanks I will do when I get my next appointment through unfortunately they keep canceling due to lack of staff x



I took over the counter supplements on advice from my GP when it was slightly low at 49. After 6 months the next test came back at 28!

I’m now on prescribed Vit D (cholecalciferol) monthly for the rest of my life.

You need to speak to your Dr about what’s best for you next.



I have taken this for over a year and then a booster for 7 weeks and mine has gone like yours dropped very Low none of this makes sense why this would happen x


That’s a question for your doctor, none of us would be able to answer that sorry.


I hope you bring this up at the next appointment sooner rather than later, some people do need a very high dose to get back on track. I know I need quite a whack of it to keep my levels within range.



Thanks Mary I will do especially as I am very tired all the time and have no energy ,



The best form of Vit D is sunlight/light. You might benefit from UV light boxes which are used to treat depression that occurs during the winter months. Those in mind are not used for sun tanning which are dangerous: rather the UV rays are used to counter low Vit. D and depressive illness during the winter months.

Treatment of vitamin D deficiency with UV light in patients with malabsorption syndromes: a case series:



Cystic fibrosis (CF) and short bowel syndrome (SBS) patients are unable to absorb vitamin D from the diet and thus are frequently found to be severely vitamin D deficient. We evaluated whether a commercial portable ultraviolet (UV) indoor tanning lamp that has a spectral output that mimics natural sunlight could raise circulating 25-hydroxyvitamin D [25(OH)D] levels in subjects with CF and SBS.


In initial pilot studies, two SBS subjects came to the outpatient clinic twice weekly for 8 weeks for UV light sessions of 6 min each. In a follow-up study, five CF subjects exposed their lower backs in a seated position to the sunlamp at a distance of 14 cm for 5–10 min depending on the skin type five times a week for 8 weeks. Blood samples for 25(OH)D and parathyroid hormone (PTH) measurements were performed at baseline and at the end of the study.


In our study, with two SBS subjects, the indoor lamp increased or maintained circulating 25(OH)D levels during the winter months. We increased the UV lamp frequency and found an improved response in the CF patients. Serum 25(OH)D levels in CF subjects at baseline were 21 ± 3 ng/ml, which increased to 27 ± 4 ng/ml at the end of 8 weeks (P = 0.05). PTH concentration remained largely unchanged in both population groups.


A UV lamp that emits ultraviolet radiation similar to sunlight and thus produces vitamin D3 in the skin is an excellent alternative for CF, and SBS patients who suffer from vitamin D deficiency due to fat malabsorption, especially during the winter months when natural sunlight is unable to produce vitamin D3 in the skin. This UV lamp is widely available for commercial home use and could potentially be prescribed to patients with CF or SBS.


With good wishes,



Thanks for the info


Hi, when mine was 32 my GP gave me 20,000iu capsules to be taken 3 x a week for three months and then a maintenance dose of 2000iu daily. I was also given an injection but those capsules did the trick.

Perhaps you could ask for something similar?


thanks my Gp has all ready given me 5000, 7 days a week and that was for 7 weeks but its gone down instead of up ,

no idea why .


I found Vitamin D drops which are supposed to absorb better. You might try that. Good luck!!


I will give it a go thanks.


I suggest you talk with your Specialist about this before you take other "drugs". Should probably be investigated why it still drops.

Best wishes from Kerstin in Stockholm


will do thanks x


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