Vitamin D deficiency

[Barbara17]

Hell everyone. Following my visit to dermatology at the beginning of the month the consultant has now written to me confirming I am deficient in vitamin D. My reading was 22 nmol/L and seemingly 50 nmol/L is ‘adequate’. So, do I just go out and buy a supplement or is this something my doctor would prescribe? I’ve looked online and a lot of tablets seemed to be based on fish oil and I’m sure I’ve reacted badly to that in the past. Does anyone take a vit D supplement at the moment? Any help would be appreciated. Thanks.

[grannyjogger]

Like many people on this forum I take Adcal D3 which is a combination of calcium and vitamin D. This was prescribed by my rheumatologist and I get it on prescription along with my other meds from my GP.

[lipsticklisa in reply to grannyjogger]

One thing no one ever tells you is that Vitamin D is fat soluble. Take it with fat to get the best absorption. I had trouble for years until someone told me this. Now my supplements work great. Vitamin D in check.

[Hidden in reply to lipsticklisa]

Hello. How exactly do you take your Vitamin D? What fat do you use? This is interesting since I had never heard of this. I’ve been talking Vitamin D forever, but they do not seem to work. Maybe I’m just taking them wrong.

[PMRpro in reply to Hidden]

I take mine near a cup of tea or a meal - even the small amount of fat in the milk is enough.

However - what dose are you taking? The AdCal type supplements are nowhere near enough to raise a deficient level to normal, they are barely enough to maintain them when adequate in the absence of other sources.

[Hidden in reply to PMRpro]

Thanks for responding. I’m currently taking OTC VitD3 5000 IU once a day. It’s labeled as High Potency.

[PMRpro in reply to Hidden]

Every day? That should certainly get your levels up albeit maybe slowly - unless you have an absorption problem.

The NHS recommendation is 60,000 IU per week for 8-10 weeks - you are taking 35,000 IU so a decent level should be achieved in maybe 4 to 5 months. My GP here in Italy gives 25,000 IU per week as a single dose for 4 months and says it is felt this is more efficient in the long run.

[Hidden in reply to PMRpro]

Interesting. I will try taking them with fat. I’m vegan, so this should be interesting. Off to the kitchen to find some fat. 😂😂

[PMRpro in reply to Hidden]

Olive oil?

You being vegan may be the reason for very low levels - there is next to no vit D in plants and if you are not making any from sunlight then if your body stock of vit D is exceptionally low it may take a very long time at fairly high doses to fill up the empty bucket.

[Hidden in reply to PMRpro]

You’re right. I rarely go out in the sun due to my Lupus, so my levels are really low.

[PMRpro in reply to Hidden]

Has your GP not provided high dose supplements? And done any checks as to WHY your levels are so low?

[Hidden in reply to PMRpro]

No, he has not. I will request a prescription during my next visit. Also, I’ve only been vegan since Jan. 2018. We’ve only recently noticed my levels as low as they are. My levels have always been low, but since going vegan they’ve dipped lower. Definitely will request high dose supplement. Thank you so very much! You have been a huge help! 😇🤗

[PMRpro in reply to Hidden]

Hope it comes right.

Google "is dekristol vegetarian" and the first link that should come up is from medicinesresources.nhs.uk. It is a download and I can't work out how to give you a direct link! But it explains which vit D preparations are suitable for vegetarian or vegan patients. A German language link says the manufacturers say Dekristol is suitable for vegans as it is made with peanut oil - so is unsuitable for patients with nut allergies!

Out of interest - why did you become vegan? My granddaughter went veggie first about 18 months ago and then decided to go the whole hog and went vegan. Since then her asthma has improved out of sight and she has lost a load of the pred weight. She was allergic to dairy as a baby - developed eczema then - but seemed to have outgrown it. It seems NOT!

[PMRpro]

If you are deficient your GP should be able to prescribe high dose vit D3 which will bring the level up fairly quickly. The usual NHS recommendation is for 60,000 IU per week either as a single dose or 3 x 20,000 IU on different days to be taken for 8-10 weeks before checking the blood level of vit D again.

However - many doctors will refuse to prescribe it on cost grounds and tell you to buy OTC tablets. Most chemists will stock ones that are suitable and they aren't horrendously expensive - and many are not based on fish oils.

The AdCal that grannyjogger mentions is only 400 IU of vit D together with calcium and you must not take more than 2 a day otherwise you will have too much calcium. They are only suitable for maintaining an adequate blood level and are not enough to get a deficient vit D level up to where it should be. For that you need just vit D3 tablets with NO CALCIUM.

1000 IU tablets are also labeled as 25 micrograms - and you need to take at least 2 a day for several months. Some doctors will tell you to take more. I would take 5 a day to get the level up and then 2 a day as a maintainance dose as that is what our local health service vit D guru says.

First of all, speak to your GP, a 2 month course of the high dose sort is best. If not, get some from the chemist. The pharmacist will advise you.

[Lisalou19]

Hello there

I take the combined calcium and vitamin d, prescribed by my doctor . It seems to be a pointer in bloods, that an immune problem could be present with a low vitamin D level.

I’ve been taking it for 4 weeks now. Not sure I feel any better but hopefully the internal functions are working better

X

[Lupiknits]

I can't for the life of me remember exactly what it was, but the moment my GP was notified of my VitD levels ( 3 months after blood tests) I had to chomp through quite a large number of prescribed tablets within 24 hrs. Pretty much equivalent to an old fashioned packet of school board chalk. Not an experience I'd care to repeat.

Since then I've taken otc VitD in the dosage Pro suggests. My levels are now good enough.

[HelenL75]

I was diagnosed with a vitamin D deficiency today and our lupus nurse is organising a prescription but said if needed it can go on repeat with my GP not sure what they have prescribed yet and can’t be fish based as I have an intolerance to fish - good luck in getting it sorted H

[Barbara17]

Thanks everyone. I’ll try and get hold of gp tomorrow.

[Apple68]

Hello Barbara 17,

I had this problem, mine was 30, so I went and saw my GP, and she gave me 5 weeks worth

of tablets, taking one tablet a week. Now I have finished the course, I wonder if I need a follow up blood test. I expect I will have to see her again to check.

Please don't self medicate, see the GP first. Hope you will soon be feeling better

[Kath1]

The hospital prescribed adcal d3 to me. It is a chewable tablet of calcium and vitamin D, meant to be fruit flavoured but doesn't really taste of anything. I take 2 a day and it is not unpleasant, just part of my routine now. I now have them on repeat prescription with my GP

[Wolf1]

Hi. My rheumatologist prescribed Fultium D 800IU. My levels were only 3 and initially had to take liquid - not in capsule for approx two weeks. Then on to the capsules one a day for life. Xx

[Lainey60]

Yeh as above I’m on fultuim 800 one a day for life.

[Coppernob]

I an taking 5000iu D3/ day, sourced from prohealth in the states. Not expensive even with shipping and customs.

[Joy_1]

Hi Barbara

Many of us are deficient in vitamin D the UK regardless of whether we are in good health or not.

I have to take vitamin D every day. And even though I am a food scientist I am unable to supplement my diet enough naturally to get the amount I need on a daily basis.

I get my Vitamin D on prescription thankfully.

The Prof at my Rheumatology Unit has said that "below 30 is deficient, 30 to 79 is low, above 79 is normal' - now this is in reference to those of us with chronic autoimmune conditions.

Joy

[Djlr]

Vitamin D3 2000 to 5000 mg- daily over the counter is the best way to get your vitamin D level up. The prescribe 75,000 vitamin D2 does not work well and is not the correct vitamin D.

Yes over 50, is where you should be with your vitamin D level. It will make a big difference in your lupus symptoms and your resistance to viruses.

Mine went from an average of 32 all the way up to 60 to 70 just using the vitamin D3 over-the-counter.

[Djlr]

I forgot, it must be in capsule form not tablets .

[Barbara17]

Hello again and thanks to you all for very helpful info. I’ve not managed to contact gp yet! Still struggling to get past receptionist who tells me they have not received letter from hospital! Strange that I received the copy last Tuesday!!! So I will phone again on Monday . . . . .

[Ericanemec]

No I do not anymore, some people's bodies are not able to process the vitamin D in the blood and I am one of those people.

[Ericanemec]

Also, I was prescribed a plant based vitamin D3 from my doctor. No help.

[Barbara17]

Gave up trying to contact gp by phone and wrote to her, enclosing copy of consultant’s letter. Receptionist phoned me back and said gp could not accept this until she had done her own blood test!!! So I’m going for another blood test tomorrow and will get results next Tuesday. Depending on outcome of this second test I may or may not get a vit D prescription as Lothian Health Board have guidelines and I may not comply. I pointed out a LHB consultant had said I should get a supplement but seemingly that is not good enough. I will keep everyone posted!

[Howec15]

I vitamin D deficiency, My dad and 2 of my sister's also have this condition. My Dr runs a vitamin panel on me every 6 months, more often if he suspects Something is off. When they ran my vitamin panel they also found out that I am deficient in B's,and C. I was prescribed Vitamin D 50000iu 2× a week and after getting my D back to normal level, 50,000 once a week. The B vitamins, I was getting injections and told to take over the counter B complex too, they recommend chewable or liquid because your body doesn't get all the benefits from the tablets. I hope this helps some. I recommend that everyone request a complete Vitamin panel at least every 6 months, it is the only way to make sure all vitamin levels are good.