low vitamin D !: I recieved a copy of a letter sent... - LUPUS UK

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low vitamin D !

larissa profile image
22 Replies

I recieved a copy of a letter sent to my doctor from st Thomas.They have requested that he prescribe me vitamin D and Calcium . Mine is 22 !? how low is that ?

Anyway, i heard from somewhere that vitamin D is connected to having energy ? is this true ? I am hoping it improves my energy ( fingers crossed )

Have any of you been in this position before ? and if so did you notice any improvements ?

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larissa
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22 Replies
Danielle2419 profile image
Danielle2419

Hey there i was also diagnosed with low vitamin d last year at the age of 17

my level was 16 am currently on Adcal D3

1500mg/400IU

Tis must be helping the normal level should be 60 so i guess we have alot of catching up to do lol try eating and drinking stuff also with vitamin d in it if you like yoghurt i brought this new one just today its called calin+ its got calcium and Vitamin D with 100% RDA so a bonus all round.

larissa profile image
larissa in reply to Danielle2419

Thankyou , i will keep an eye out for the yoghurt . What shop did you get this in ?

Danielle2419 profile image
Danielle2419 in reply to larissa

Hey you can buy it from any suermarket store in tescol at the moment its on offer £1 for 4 pots they come in flavours of vanilla and strawberry .x

jani4063 profile image
jani4063

Hi Larissa, my vitamin d was at 24 which is very low, it is common to have low vit d with autoimmune disease, I take vitamin d and calcium and on my last test my levels were up to 84.....don't feel any better unfortunately.................but i think its definately worth taking the supplements as it may help, vitamin d deficency has been linked to fatigue, joint pain, and numerous other ailments

Jani

x

larissa profile image
larissa

I am awaiting a prescription , so will start asap . How often do people with autoimmune diseases need to have vitamin D checked ? x

Danielle2419 profile image
Danielle2419 in reply to larissa

Each time i go for a check up with my rhuemy to discuss lupus i get all my tests done there vitamin included.

Nightjar profile image
Nightjar

Hi Larissa, If you look up VitD (google, drmercola, drbriffa etc..), you will find it is important for many reasons, including support of the immune system. The supplement should be VitD3 (not D2). Anything over 50 is considered OK. I started taking 500iu/day but didn't get a good level until taking 1000iu - my level now is 76 (saw my impressed consultant yesterday). You may need to take 2000iu to start with, until higher level - talk it over with your GP.

I take Co-Enzyme Q10 for fatigue. It was recommended for mouth ulcers but has been found to also help with fatigue. I take 60mg/day =less fatigue and less problems with mouth. I get both these supplements from Higher Nature (buy online).

I have noticed that too much sugar makes me fatigued, so sadly ..less cake and no milk chocs. Dark chocolate is fine though ..luckily! Hope you get help to up your levels. Take care. xxx :)

sasha12345 profile image
sasha12345

l was told 5000iu is ok but it all depends on how low your vit d level was yes its vit d3 you need to take l am seeing consultant end of month and hoping my level as gone up if so they will adjust the amount l take ,,l do feel better with taking vitd3 keeping my colds at bay was getting a bad cold one after the other so far keeping fingers crossed not had a cold for 8weeks thats so good for me hope it will start to help my aching muscles and joints ,xx

janiceray profile image
janiceray

Taking these tabs calcichew -D3 will also help with your Bones to help stop Crumbling and thinning in the near future .

take car xx

Catangy profile image
Catangy

Hi,

I had an overlooked by my GP (twice)) low vitamin D which was picked up when I went to see a GP in Glasgow who also ran a private clinic called the Essential Health Clinic anyway whilst there he discovered that my vitamin D was only 9 he was so concerned that he called a doc in America who reported his lowest at 7 anyway to cut a long story short he prescribed 5000 iu of vitamin D and we found that very quickly my levels came up to where they should be (probably around 2 months) so by the time of my follow up appointment they were at much more acceptable levels I will add that I was also taking really good quality omega 3/6 capsules which were very expensive at £20 for 60 tabs but the combination had me feeling better than I had in years.

As with all these things you things you tend to think I'm well well now so I don't need to keep up topping up and as I was paying for private treatment this seemed a good idea at the time NOT!! Please keep getting checked as I had seen documented that there are links to low Vit D and some cancers which unfortunately I was been diagnosed with, of course I'm no doctor and I'm not saying that was the cause but sometimes I can't help but wonder if only I'd kept getting my vit D checked.

Glad to say I am well at the moment and my cancer is in remission for the second time around.

Keep well and keep chasing your doc if you are continually unwell we know our bodies better than others do even if we can sound like a broken record sometimes, I used to be so worried about upsetting people by arguing my point but now I stay calm focused and take a lot of deep breaths to get my point over ( not easy for a redhead lol)

Regards Cat x

Jianna24 profile image
Jianna24

I have been taking D3 after reading all the research about Lupus and D3 connection, also the connection of D3 and K2. I have to buy my D3 as the only prescription I can get has sucrose and some also have soya.

Jaxqueline profile image
Jaxqueline

I too take Calcichew which I think really helps. They were v surprised that my Vit D was so low because fortunately I can tolerate sunshine and had just come back from Turkey and even that didn't boost the Vit D.

Tinalou profile image
Tinalou

I am on prescription pro D3 20,000 IU, must say I don't feel any better for it lol but if its helping that's good

serenigirl profile image
serenigirl

i have low vit d and im on adcal and calicotrol dont feel any better

chrisj profile image
chrisj

Funny you should bring this one up Larissa....

I saw the rheumatologist yesterday and she said I needed vit D+calcium. I had to go to hospital once a month for 4 months last year to take doses of pure vitD, not available outside of hospitals I was told. I definitely felt better for it but the sypmtoms have come back.

I asked the doctor yesterday if it was me worth buying vitD pills myself and she said no need I'll get your gp to prescribe them..will have to wait a week for the script to get through the system and it seems I'll be taking them for the rest of my life..I feel more tired and have more muscle aches when levels drop, the supplement helps with that. Hope you find it the same :)

Minimum profile image
Minimum

I just want to say thank you for bring this up larissa, all of the reply's it has explained so much about why I have been put on Vit D.

Thank you all. xx :D

larissa profile image
larissa

Thankyou all, now irealise how important vitamin D is and shall make sure i am re checked in the future x

nicky1234 profile image
nicky1234

last year i was so ill i thought this is it i am dying ,

so went to docs i told him i suspect cancer,

he had 2 letter's from my rhummy

one said i had vit D vit B6 and animic

the second said they are concerned i am not being treated.

but the first letter was over 12 months old

i must admit i hardly go the docs but surly they should have said something

in a letter of phone call.

about 2 weeks after i saw the doc i recieved a letter from the hosi

saying i must get help in this and that they are concerned i am not being treated

for the problem. and that they sent of a copy of my letter to my doc.

so thats 3 letters my doc got.

i will say my doc is usually excellent and in the 23 years this is only mistake.

ps taking the treatment made a massive difference i started to feel human again :) xx

happynewyear profile image
happynewyear

Hi last sumer my level was 14.I took 1000 iu vitamin D3 daily & by the september the deep bone pain had eased a lot to my surprise. My level now is 22 so I have started taking 5000 iu vitamin D3 daily as 22 is still low. I dont know how long my vitamin D levels were so low for ... only that ' my bones had hurt so much for so long'

Andromachi profile image
Andromachi

Hello, I took 6,5 kilos and I asked about it my endocrinology. She gave to me tests about D. Its' only.....9,4 units. We must have 40-100. I started with vitamin D 1200 mg, but no calcium. It;s dangerous for us to fall

LeopardGizmo profile image
LeopardGizmo

That's REALLY low. It should be over 100, apparently. GPs always seem to put us on AdCal, but you may find that you need something with a higher dose than that, especially at the beginning. As well, they never tell you that you shouldn't take AdCal within 3 hours of the hydroxychloroquine -- hydroxychloroqine action is interrupted by antacid medicines -- of which AdCal is one. You can get D3 tablets or spray (under the tongue) in 1000 or 2000 iu at a good pharmacy or health food store. If you want to know more, I found this article REALLY useful and went on to buy the Vitamin D for Dummies book.

dummies.com/health/nutritio...

Hnewman2 profile image
Hnewman2

I had mine done recently and its 61 which I was told is normal?

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