hi I was wondering if anybody had any information or experience with Vitamin D?
On a recent blood test my Vitamin D and D3 was normal but my D2 was below 5. From what I can see it’s a severe deficiency and I’m not sure what I should buy? I take D3, but I’m struggling to find D2.
I only got the result yesterday so do you think my rheumatologist may call me next week about it? It may be contributing to how I feel. I woke up yesterday barely unable to move and I hurt all over. Severely exhausted. I’ve had other bad results in the past with other bloods and noone has called so I’m not banking on hearing from them and don’t really want to leave it if it’s making me feel worse.
Why would the other two be normal and that one be so low? The other two were in the 80s. Weird. Anything I can do specifically for D2? Foods etc? I get hives and burning itching skin in the sun so I don’t fancy upping my sun exposure.
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Tonkie
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If you are taking vit D3, that is said by some to be the more effective form. Vitamin D2 is sourced from plants, and vitamin D3 is derived from animals so if for some reason you prefer a plant-based product, vitamin D2 is a better choice for you unless you look specifically for vegan D3 which is derived from algae. Most D3 is vegetarian but not vegan. Additionally, your doctor may recommend vitamin D2 as the best option for you if you have chronic kidney disease.
Thanks this has been interesting reading. D2 may be better for me then. But think I need to get a prescription? I’ll be looking into that this week, I feel terrible at the moment. My diet is pretty good and I eat a variety of foods. But maybe I can up the salads a bit more 🙈 I put spinach in most of my meals due to anaemia, I thought that would suffice but maybe not. I’ll give the GP a call this week and see if they can prescribe something. Xx
You can't get vit D from food - not easily at least, means half a pound of wild salmon a day! So more salad won't make a difference.
Vit D is the one vitamin I approve of using a supplement for. You can buy vit D and it isn't very expensive. I take 2000 - 4000 IU a day - I know without it my vit D slowly drops to a very low level, probably because I am on pred all the time and it depletes it. If the GO is willing to prescribe you high dose vit D to get your levels up, go for it, but I suspect if the report says total vit D is OK, they will say no. I honestly don't think you need to worry if D2 is low and D3 and total vit D is OK but topping up might help the symptoms you describe.
Vit D is back in the news again with some experts banging on that people are taking it without needing it and it isn't the magic solution some have claimed in the media. What is certain is that if YOU are deficient it will help but if you have a good level, it is unlikely to improve your health.
I am hoping it’s the cause of some of these issues as the methotrexate always made me so tired. Maybe they won’t be bothered about results if my other two are fine? I can’t really find any info about just one being low.. it’s vitamin D as a whole that is described. I still dont really understand how one can be low and the others aren’t. Weird! I’ll speak to them next week and see if they think it’s worth taking something. I don’t want to take more than I need to x
Or maybe I’m reading results wrong 🙈 I wouldn’t put that past me either. I just want some energy for my kids 🙁 I don’t want to hassle the GP if I’ve read it wrong 🤣
I can say that MTX can cause overwhelming fatigue - I lasted 4 weeks on it before I stopped for a foreign trip. After 4 weeks without I felt so much better I never went back on it but it was months before all the fatigue had improved - difficult to say when the illness causes fatigue anyway.
It sounds as if you have flared without the MTX - so don't get too hung up on whether it is D2 or D3 they are measuring.
Hi Tonkie, I was similar to you when I was first undergoing all these investigations and it showed a severe vitamin d deficiency my GP put me on a high dose of vitamin d tablets for the first I think about 3 months or so and now I'm on a daily maintenance dose that I will have to take for the rest of my life. I would definitely suggest bringing it up with your rheumatologist or GP as they would be able to provide you with what's right for your blood results. It definitely would be causing the fatigue etc however I would also say that even once i started the vitamin d tablets I still had fatigue afterwards but guess that's just the connective tissue disease for me.
My GP did say originally that they thought vitamin d would of been the main reason for all my symptoms but that wasn't the case. I hope you manage to get it sorted and that you have some relief from your symptoms asap 💕 xxx
Thanks Haylz. I’m hoping it is the cause of my fatigue, then maybe I won’t feel as shocking back on the methotrexate. I think I’ll call the GP if I don’t hear back from rheumatology as the last two days I’ve felt absolutely terrible. My skin has flared along with my joints. I’ll do anything to feel a bit better. Started methotrexate again last night so here’s to a fresh start and the road to recovery 🤞🏻
I get you, i do really hope you get some relief from it as it can cause a lot of problems without any of the added stuff you're dealing with. I'd definitely recommend doing that better to be safe than especially if you're in that much pain already, bless you.
Ah fingers crossed that also helps you, i know it's hard to find the right treatment that works for you.
Anytime 😊 always here if i can help in any way 💕 xxx
Thankyou. I’ve had a miserable week.. the rheumatology nurses said that if I get stable again on MTX they’d change me to something that doesn’t cause that much fatigue and nausea. But when I went for my appt I asked my rheumatologist if I could when everything is under control and she said no 😞 so I’ve just been left with no hope. Feel terrible without the drugs.. feel terrible with them. At least I’m not swollen and looking diseased on them, so I guess it’s the lesser of two evils. Just came out feeling really hopeless. Then typically two days after seeing her I’ve woken up yesterday feeling horrendous it’s hard to move. Always the way! Xx
Sorry to hear that, it sounds like you've been having a rough time of it lately. Hopefully now with the added vitamin d supplement it'll give you some relief. I know what you mean definitely the lesser of 2 evils even though you still feel rubbish. It's so hard isn't it.
Definitely get back onto them nothing worse than feeling horrendous and helpless straight after appointments. Have you got the Rheumatology helpline number? In case you can't get hold of your normal rheumatologist that is. Sending hugs 💕 xxx
Hello Tonkie, I do hope that you find some relief soon 🫂🦋🌺
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High strength
I don’t know much about vitamin D but I’m prescribed a monthly concentrated dose(2xampules take as one dose) because I have denosumab but told now I need it as need to stay out of the sun.
Be proactive & ask your Rheumy team. If they feel any change is needed they will prescribe it. Don’t try to work it out yourself - that can confuse things.
I had vitamin D deficiency. The rheumatology nurse phoned me to tell me and wrote to my GP asking him to prescribe and monitor. I made an appointment with my GP to discuss and he phoned and said I just need to buy it myself and don't need him to monitor. The rheumatologist did another check for it around 12 months later and mine is still low, but has improved. So over the counter stuff does seem to work. After that 12 months later check the rheumatology nurse said to take it all year round (so not just in winter like my GP advised), and also to get a minimum 1000 dose (which I now get from an online pharmacy), rather than the cheaper options from budget stores that I had been buying.
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