Any experiences of vitamin D deficiency?

[lolalois]

I've been tested and am very low in vit D at 24 (75-200). Have just started taking a supplement but don't seem to have the usual symptoms. Mainly, my sleep has deteriorated over the last couple of months, and about 1 or 2 nights out of 5 I'll take forever to get off. Apparently, whilst this isn't a common feature, lack of vit D can affect sleep. I also get really low mood, but then who doesn't when you're tired?

Any experiences would be much appreciated, could do with a bit of reassurance.

[PainForLife]

hi lolalois - I can sympathise I've have severely low Vit D for about a year now (it is 5) & it's not correcting. I've had 2 injections plus take supplements twice a day. will be getting my third injection next week. my personal experience has not been gud as I've been immobile for 2 years now. i also suffer from low mood & insomnia & now R.A so am always in pain.

Ur's doesn't sound dat bad & I think it will improve with taking d supplements as it does for normal individuals - I'm just not normal Lol :)

[MrsjREwing]

I must get tested again, mine is often low. I am not sure what my symptoms are for low vit D as I have a sleep disorder, sleep apnea and a genetic condition, so symptoms overlap.

[lolalois]

Sorry to hear about your experiences, they don't sound too good. I wonder if vit D deficiency tends to get picked up if there are other conditions going on. I've got a thyroid problem too, and I think vit D deficiency is fairly common with an under active thyroid.

At least I'm not alone in my experiences, which don't sound as bad as either of yours, but the low mood is difficult at times, however rational and upbeat you try to be. Fingers crossed the supplements will work for me, the dr said to just get over the counter, but am taking fairly high doses (5000iu).

Do either of you have any idea how long it takes to feel some improvement?

[MrsjREwing]

I never noticed a difference, though I was on those huge chewable tablets, the injections sound better.

[RockinD]

I was horrendously low in Vitamin D before the NHS got its act together and devised protocols. I raised my levels myself by taking 5,000iu gelcaps which I
bought on line.

At one point I had an injection of 300,000 units and my levels went DOWN. I then found out they had given me D2 instead of D3.

I'm not conscious of feeling any better or different, but I n ow have textbook results.

[BestIsWest]

Hi Lola I've just been tested too and mine was 8. I have problems with my bones (and joints and sleeping and lots of other symptoms) and have had my calcium and parathyroid hormone tested too. Both were high and it looks as though I have hyperparathyroidism which can cause a lot of symptoms - I'm waiting to see an endocrinologist to find out more. Might be worth getting these tested too?

[lolalois]

I've had most of my levels tested, calcium, magnesium, iron etc were fine, so I don't think it's hyper parathyroid. Out of interest, what kind of sleep problems did you have? I struggle to get off at night, sometimes I think it's because of palpitations, other times I just can't go off. It's not every night, but 2-3 times a week and I feel awful the next day. I've never had sleep probs before, and apparently there is a link between D and sleep, but there's not many experiences online to draw on.

Are you taking supplements while you wait for an appt?

[straighttohellymelly]

Did your GP test it right away or did you have to ask? I have an underactive thryroid and have been taking vit d as I have heard it can be low, but GP hasn't tested it. I also have palpitations when trying to get to sleep.

[thereinmadnesslies]

I've got a Vit D deficiency but I'm also hypothyroid so I'm not entirely sure which symptoms are due to which conditions. I felt pretty crap before I started the meds, feeling somewhat better now but still not amazing. I've been prescribed Fultium D3 800 IU capsules, I'm taking 1 per day.

[lolalois]

I went to the GP about the palpitations and she ran loads of tests. As far as I can tell, 800 iu is a very low dose if you're deficient, I think you need at least 5000 iu to get your levels up. I'm not sure if my thyroid might be slightly over medicated but am going to try to get the D up before I change anything else.

[BestIsWest]

I am usually knackered so go to sleep immediately but wake around 3 am. I am on 2 x D3 20000iu per week. This is week 2. I also have osteopenia and a history of fractures, cannot squat, weak thigh and buttock muscles, all low vit d symproms. I have heard depression can be a symptom too,

[sashh]

Another one on D3 here - mine was 7, feel so much better on them, more energy.

[lolalois]

Bestiswest, do you have any side effects of a high dose of D3? I was told to take 1000iu a day, but all the evidence online points to really large doses being needed to get the level up. Am feeling really quite rubbish so want to get it sorted ASAP and am thinking of taking much higher doses. Are you feeling any better yet?

[happygilmore]

My levels were very low (14, D3 was 11.2) and I was feeling very ill with it. Could barely walk, waddling, beyond exhausted, couldn't lift etc etc

What unit of measurement was your test results in? As the normal range for my test would have been above 50 (nmol/L)

Initial treatment was 40000 IUI daily for 2 weeks, since then I've taken 4000 IUI daily. My levels are normal now.

1000IUI is not going to get your levels back up to normal, I don't know what your doctor is prescribing you that for. You need around 4000 a day for a maintenance dose, especially as there is none from sunlight in this country until approx April now.

The vitamin D council is a good site - www.vitamindcouncil.org/

[BestIsWest]

I've only been taking them for just over a week and haven't noticed any change yet.

[lolalois]

My result was 24, range 75-200 so I seem quite deficient. Dr didn't prescribe anything, just told me to get some OTC from health food shop. Has anyone else had sleep probs when deficient?

Sounds like it'll take a few weeks to get the levels up.....

[happygilmore]

What unit is that measurement in? I don't recognise it (not to say it's wrong of course!!)

Taking 1000 IUI a day will not get your levels up, they'll probably fall further. You need to be taking the kind of levels I put in my post to get any improvement (or go on a nice sunny holiday abroad!!)

[happygilmore]

A lot of Drs still aren't very clued up on Vit D unfortunately. I was a classic case but was missed for nearly a year. I did have sleep problems too, felt exhausted but didn't sleep well. My main problem was severe bone/muscle pain/weakness though.

[happygilmore]

this link is quite good too

www.imperialendo.com/for-doctors/vitamin-d-guidelines

[lolalois]

The result was in nmol/l (not that it means much to me!). I was. Just thinking that I could do with a nice sunny holiday for 'medical' reasons! If only.... Can't afford to at the moment.

Although the sleep bothers me the most I do feel weak, and get bone pain especially in the night when I can't sleep. I keep reading about higher doses, will definitely push mine up, was just concerned about side effects to start with, but haven't seemed to have any and I'm up to 5000iu D3 a day in liquid form.

It's a funny one because it doesn't feel like a remotely good reason to be off work, Dan what with having had thyroid problems this year I feel like I must be boring those around me to death with my health problems! But yet they do make you feel really pants.... I'm thinking the higher the dose the quick this will be sorted so will aim to get up to 10000iu I think.

Thanks for this link, I'll have a look now, and thank for responding, much appreciated. Do you feel good now?

[BestIsWest]

Thanks for links happy. Do you feel better now? Has the pain and weakness cleared up now?

I went to my doc with a long list of aches and pains (hips, legs and feet especially severe) and symptoms such as indigestion and headaches. I already knew I was osteopenic after a Dexa scan last year. I also asked to be referred back to Fracture clinic because I felt damage from some breaks last year wasn't healing (I'm still limping badly).

The consultant I saw there looked at some recent blood test results which showed high end of normal calcium and a few other things and sent me for pth and Vit D blood tests. PTH was sky high and vit D rock bottom. So it seems I am hyperparathyoid but whether it is primary or secondary I don't yet know.

The Doctor said that this will have been going on for years and looking at the list of hyperparathyroid symptoms I have been to the docs with nearly all of them over the last 10 years. I don't know yet if the vitamin D levels are a cause or a symptom.

[BestIsWest]

Sorry Lola I seem to be hijacking your thread. One of the things I was asked about was whether I could get up easily from a chair or squatting position as this is a key symptom of vitamin D deficiency apparently. How are you with this?

[lolalois]

No worries on the hijacking front, it's useful to share experiences. I'm ok on the getting up front, although my BP is low so sometimes a bit dizzy. Do you have any sleep probs? I don't generally seem to get typical symptoms of anything, so I'm probably not the best person to ask to be honest.

[happygilmore]

Sorry to take so long to reply!

I have had a few other health problems so although I don't feel right now, I think I do feel a lot better for having had my Vit D levels sorted, if that makes sense.

I had bad sleep too, I also just remembered my hair was falling out. Very weird.

Lola, I really think you need a higher dose than that to get your levels on. Your GP should prescribe you ergocalciferol, I really dont think 5000 IUI will get your levels up quickly. Like I said, I took 20000 x2 daily for 2 weeks, then a week for 40 weeks. My GP told me that is the standard treatment (in the NW, with a high asian population so slightly more clued up on vit d than some other places). A lot of GPs still do not know about vit D deficiency, even though my GP sees it quite a lot he still didn't test me for it (I had to pay to have it done privately!)

I hope you feel better soon. My DH's levels were low too, and he saw dramatic improvements as soon as he started the very high dose. Incidentally, you're unlikely to get any symptoms from taking high dose vit d supplements unless you have one of a small number of conditions e.g. hyperparathyroid. Vit D council website has more info.

[tb]

Vit D deficiency also has an effect on the heart. I was very low about 9 mcg/l or 23 nmol/l when the 'normal' level is 30mcg/l, and was given 3 ampoules to take, 1 every 2 weeks. It's still just on the low side, and so I've been given another to take, but 2 months after the first one.

Disclaimer - live in France, so practice may be different.