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Vitamin D loading dose hasn't reduced symptoms - what's next?

29 replies

Thatsafinememory · 17/06/2023 20:02

Has anyone else experienced this? I've just finished a seven week loading dose of vitamin D but have just as much pain and exhaustion as before. I'm gutted because I'd heard anecdotes of it being like a miracle cure!

My level was 21 before starting and I'm getting my bloods done again this week. I was expecting to be prescribed a daily dose now but as my symptoms haven't improved will I be given another loading dose instead?

If you've been deficient in vitamin D how long did it take to raise your levels and reduce symptoms - or does it sometimes not work?

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Babdoc · 17/06/2023 20:17

It is possible that your symptoms are not all due to your vitamin D deficiency. If your repeat level is normal, you may need to investigate other diagnoses.

Thatsafinememory · 17/06/2023 20:23

@Babdoc yes that's true, and I do have another diagnosed chronic condition, but I'm just so disappointed that there's no improvement at all. I was so looking forward to having some energy!

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WhoWants2Know · 17/06/2023 21:05

Did you take any magnesium with the loading dose?

Thatsafinememory · 17/06/2023 21:18

@WhoWants2Know no, the doctor didn't mention that, she just prescribed the weekly vitamin D tablets. I had no idea it could help, I'll have a Google...

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ArcticSkewer · 17/06/2023 21:19

so what was your loading dose?

Are you also hypothyroid or is it something else?

isthewashingdryyet · 17/06/2023 21:21

How much was the loading dose ?
it needs to be really high numbers and not just 100 iu at a time

it is often misprescribed

get your levels checked and then review against the amount you have taken

worldwidetravel2017 · 17/06/2023 21:25

I hear you

My body is falling apart
& has been ever since glandular fever last year

My vit D was a bit low but not low enough to warrant prescription
Dr recommended a dose
Ive been taking it daily

At least a month already

Hes guna askme 2 blood test in 2 months time to see if numbers gone up - i don't feel any better 4 it though

Melroses · 17/06/2023 21:28

I take mine with K2 and magnesium and some Boron & zinc.

bonfirebash · 17/06/2023 21:32

Mine was 9, and I was on a loading dose of 20,000
Now I take 4000IU a day
Don't feel any different to be honest except my shin pain has gone

Thatsafinememory · 17/06/2023 21:40

Thanks so much for everyone's replies.
@ArcticSkewer @isthewashingdryyet the loading dose was one tablet a week of 40,000 IU for seven weeks and I took the last one yesterday. Bloods being taken again on Tuesday so I'll know then if it's raised my levels but even if it has it's not reduced my bone pain (mostly in legs) or made me less exhausted.

I have ulcerative colitis and was just at the docs for review. I mentioned my pain being so bad that I now take painkillers every day (which I hate doing) and increasing tiredness and she said it sounded like vitamin D deficiency, which I thought unlikely as I'm outdoors loads and eat well so I was amazed when my level was only 21. Then I got really excited about there being a solution! So am feeling particularly gutted right now and feeling a bit sorry for myself.

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Thatsafinememory · 17/06/2023 21:42

@bonfirebash yes! the bloody shin pain! It's so painful and such a weird pain. 9 is really low, what have you raised it to with the supplement?

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isthewashingdryyet · 17/06/2023 21:44

Okay, that was the right amount

You mention IBS, are you sure it isn’t Coeliac disease as that would explain the malabsorption?

Get that added to the blood tests next week, as it is easy to screen Coeliac from a blood test these days

Some people do need a double prescriptions loading dose, so two lots of seven weeks

you may even need an injection eventually to get your levels up

isthewashingdryyet · 17/06/2023 21:47

Just re read properly, it’s UC not IBS. Ask for the injections as you are probably malabsorbing with the UC

OhcantthInkofaname · 17/06/2023 21:47

Thatsafinememory · 17/06/2023 20:23

@Babdoc yes that's true, and I do have another diagnosed chronic condition, but I'm just so disappointed that there's no improvement at all. I was so looking forward to having some energy!

Are you getting enough calcium at the same time as vitamin d? They really correspond with each other. Are you also being exposed to enough sunlight? If you're unable to absorb vitamin d through the gut the skin is a good source.

Thatsafinememory · 17/06/2023 21:54

@isthewashingdryyet I've got ulcerative colitis, an Irritable Bowel Disease, not IBS (similar though!). Had UC for 30 years and it can cause malabsorption, which the doc said is probably why my vitamin D is low. Coeliac has been ruled out by blood tests. That's interesting about some people needing injections. I'm being impatient I know, suppose the doctor will decide after she sees what my level is now. But if my level is normal I'm worried she'll not believe me about having no improvement in symptoms.

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Thatsafinememory · 17/06/2023 21:55

@isthewashingdryyet x-posted, sorry!

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MoreCoffeeAndCake · 17/06/2023 21:57

Have you had iron levels checked?

Vitamin D should be taken with fatty food to help absorption - might help if you get out on a second loading dose.

bonfirebash · 17/06/2023 22:00

Thatsafinememory · 17/06/2023 21:42

@bonfirebash yes! the bloody shin pain! It's so painful and such a weird pain. 9 is really low, what have you raised it to with the supplement?

"Normal" according to my GP which from past experience could be anything from half dead to fine (currently changing GP...) Grin
They won't tell me my blood results over the phone, or put them on the app and i don't have time to make an appointment to go in

The shin pain has gone and I figure the dose I'm on now should keep my levels up
It's because I work inside all day and avoid sun being a red head

Thatsafinememory · 17/06/2023 22:01

@OhcantthInkofaname I definitely get as much vitamin D through the skin as it's possible in North East England, I'm outdoors for a few hours every day and love the sunshine. I eat healthily but try and follow the FODMAP diet as it helps my UC - this means avoiding lactose so maybe that has affected calcium level, though I drink plenty of lactose-free milk. Would they test calcium level at the doctor's usually?

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isthewashingdryyet · 18/06/2023 06:13

If you are malabsorbing Vitamin D, then you could also be malabsorbing other vitamins and minerals. Ask them to check B12, folate and ferritin when you get the blood test, as the anaemia associated with a deficiency of these can be a bit like Vit D deficiency
Calcium isn’t worth measuring as you body just uses your bones to get calcium from.

ArcticSkewer · 18/06/2023 07:11

It's the UC.

Your GP can ask for specialist advice as you may need higher doses or a different mechanism so you can use the vitamin d properly.

You are probably right and it won't have increased your levels that much, hence the continued symptoms.

namechangealerttt · 18/06/2023 07:12

I have been feeling exhausted for years. Every couple of years I raise it with the doc and get a basic blood test which shows nothing, I am never low in iron.

I got a private blood test done by post once because the gp would not do a wider blood test panel. that showed I was low in B12 which has similar symptoms as being low in iron. You need to supplement with methylated B12 because it is absorbed better, but if you are going to get this tested don't start supplementing before hand. If it is really low they inject doses. B12 supplements have been the only thing that has marginally helped me.

I just started co-q10 this week, so not sure of this has helped me or not.

I have also read this week that being low on folate can also be an issue, but once again something to do with absorption so methylated or 'active' folate is required. I have ordered it online so I haven't started taking it yet.

Just treating myself like a guinea pig

ArcticSkewer · 18/06/2023 07:16

namechangealerttt · 18/06/2023 07:12

I have been feeling exhausted for years. Every couple of years I raise it with the doc and get a basic blood test which shows nothing, I am never low in iron.

I got a private blood test done by post once because the gp would not do a wider blood test panel. that showed I was low in B12 which has similar symptoms as being low in iron. You need to supplement with methylated B12 because it is absorbed better, but if you are going to get this tested don't start supplementing before hand. If it is really low they inject doses. B12 supplements have been the only thing that has marginally helped me.

I just started co-q10 this week, so not sure of this has helped me or not.

I have also read this week that being low on folate can also be an issue, but once again something to do with absorption so methylated or 'active' folate is required. I have ordered it online so I haven't started taking it yet.

Just treating myself like a guinea pig

I have that issue with folates as well. The methylfolates are amazing ... I do vit b complex supplements and they really help.

hanahsaunt · 18/06/2023 10:22

My vit D 24 and I had six weeks on 50,000 units and then straight to 800 units daily (20ug so off the shelf in Boots - the high strength one,). It hasn't been magic (other things going on) but definitely better than before. I think that there can be a lag between finishing the loading and feeling better but I do suggest cracking on with daily maintenance dose.

Thatsafinememory · 18/06/2023 10:33

Thanks @hanahsaunt. Seems I need to be more patient! Were you at 24 before or after the loading dose? And when you say better than before, do you mean you have more energy now?

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