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.

That protocol of 40 000 daily is quite an unusual one, the 5000 daily is fairly common. I had 40 000 daily for 10 days then 40000 weekly and got very ill. I would be wary of it. If you google it, it is very hard to find that protocol apart from manchester region. Most areas do for example just 40000 weekly, without the daily part. There are also some protocols for a mega starting dose eg 300 000 but I'd also be a bit wary unless under an endo, not a GP.

I also have thyroid probs and low vit d. I got vit d really high but it has since slumped (stopped pills over summer, relied on sun, mistake!). I had a lot of symptoms of bone pain, but I did a lot of exercise and think I'd knackered my bones a bit. Now I take a 40000 weekly dose. This is not prescribed, I just buy it online. Adcal is not v good for you unless you've got a calcium problem, but that's the tablet I got moved on to

Wrt thyroid, what's your t4 and t3? I wonder if you are a bit undermedicated. The vit d might help your thyroid meds work better

That protocol of 40 000 daily is quite an unusual one, the 5000 daily is fairly common. I had 40 000 daily for 10 days then 40000 weekly and got very ill. I would be wary of it. If you google it, it is very hard to find that protocol apart from manchester region. Most areas do for example just 40000 weekly, without the daily part. There are also some protocols for a mega starting dose eg 300 000 but I'd also be a bit wary unless under an endo, not a GP.

I also have thyroid probs and low vit d. I got vit d really high but it has since slumped (stopped pills over summer, relied on sun, mistake!). I had a lot of symptoms of bone pain, but I did a lot of exercise and think I'd knackered my bones a bit. Now I take a 40000 weekly dose. This is not prescribed, I just buy it online. Adcal is not v good for you unless you've got a calcium problem, but that's the tablet I got moved on to

Wrt thyroid, what's your t4 and t3? I wonder if you are a bit undermedicated. The vit d might help your thyroid meds work better

Also noticed they are not prescribing. Google your area and they will have a protocol. On your levels they should be prescribing! The benefit of this is you should also be monitored for calcium and have repeat vit d tests to check levels. Vit d will also be free of course if hypo.
Vit d deficiency is bankrupting the nhs, because so many of us are deficient and they buy ridiculously expensive treatments. That's why they try to fob you off. It must be d3, colecalciferol

Recently diagnosed with osteopenia (early stage osteoperosis) after a Dexa scan. I have gluten intolerance that means I do not absorb certain nutrients well.

Have Vit D deficiancy found after a blood test a few months ago. My GP and consulatant diagnosed Adcal-D3 which is a vitamin D and calcium supplement. Also had gonadotrophin and thyroid tests all clear.

Had lost of aches and pains in bones and joints as well as badly disturned sleep for years. I have lost 4 cm of my height as well.

So glad to have found this thread! Was going to start a new one, but this one has information from others who are going through similar experiences.

Blood tests have came back as low in vitamin D3, ferritin, calcium and a problem with LFTs...

Anyhow, I've had to collect a prescription today for calcium supplements - the chewable ones twice daily.

I'm only 31!!! I'm not supposed to have soft bones! I feel really really down about all of this, tbh. You associate these problems with being in your 60s, not your 30s...

Has anyone arranged private tests?

They're hot on this in Australia; I get tested annually. My doctor reckons if you work full time, even in a sunny place like Australia, you will be deficient in vitamin D, just not outside long enough for the sun to have an effect. I take 2 1000IU caps a day.

I have incredibly low vit d (was tested at a level of 8) and have osteomalacia (rickets ffs) as well as osteopenia, this is in addition to joint issues and fibro. Tbh, I've felt a bit better since I've been on my supplements (fulitem 1200 daily), but its just something I have to accept, a side effect of EDs.

Its frustrating to know that mny bones can't take much and that I'm physically weak, but my new cons is pretty good.

I've had joint pain and stiffness in my lower back since my ds1 was born (he's now 17!!!) and tend to walk with a waddle! Since before Xmas it has got considerably worse - I have been in a lot of pain in my hips, my walk has got worse and having difficulty climbing stairs and getting on and off trains.

have been to gp this morning who dismissed vit d defiency out of hand, said it doesn't cause hip pain and wants me to try anti inflammatories "to see if it settles down" and if not then have an xray. I think I am going to have to have a private test which I can't really afford and have started taking a supplement.

I feel sure that my pain and waddling is due to vit d

I also have an underactive thyroid and type 2 (controlled by diet and blood sugar stable for last few years).

Low vitamin D goes hand in hand with underactive thyroid and is one of the things that can stop thyroid replacement working optimally. If your GP was up to speed, he would regard monitoring your vitamin D levels as an essential part of the treatment of your thyroid – and would also be keeping an eye on vitamin B12, folate and ferritin!

New clinical guidelines developed by the National Osteoporosis Society

www.nos.org.uk/document.doc?id=1352

Another one with low vitD, I can't remember the exact value. I was tested as part of a battery of tests before I was diagnosed with Fibro - apparently low VitD is one of the signs (possible cause?) of Fibro. I was told to take vitD supplements, wasn't offered injections or vitD on prescription.

thanks rockin - have also had very low ferritin the past due to fibroids - think I had to push gp for testing this.

god its so frustrating when you know there is something not right - it took me ages to get my underactive thyroid diagnosed (about 10 years ago) - the problem with thyroid started after ds 2 who is now 12.

I have booked a private vit d test for next week - can't really afford it but also haven't got the energy to go back to another gp and argue my case!!

having googled nsaids not entirely happy to take them tbh! was px diclofenac last year took two and was totally spaced out. this time a different one because I think some controversy re diclofenac

well I have got results of (private) blood tests back and my vit d is insufficient at 39. I still have lots of pain in hips and lower back, walking oddly and finding it difficult to walk up steps and get off train etc.

Returning to gp on friday with results.

gp did give me vit d/calcium but dismissed that my symptoms could be linked to it. I am baffled and frustrated tbh.

As my research shows that if levels were 30 or under then they would! Surely its all on a continuum and the levels are based on statistical norms.

yes it could be something else but why rule it out completely as it looks as though my levels were plummeting downwards.

my symptoms are

deep pain in hips, stiff and pain in lower back, hips and legs, difficulty walking up and down stairs, gettting on and off train/bus, walking like duck/penguin, difficulty getting in and out of car, pain in buttocks (alot of my padding has disappeared), and tingling in right arm/thumb and face.

Hi all, I have also been diagnosed with low vitamin D this week, after 3 years of rib pain, depression, general muscle aches, difficulty walking after sitting for a while and finally breaking my wrist after a very low impact fall last March. I spoke to my GP who advised that due to low Vitamin D it is causing my parathyroid level to increase making my bones soft. Does anyone else have this parathyroid issue? GP has prescribed 2 x 800 vitamin D tablets daily and will retest in 6 weeks. I'm 39 and would like to know if anyone had had any improvement on these supplements and any other help you could give :-)

See my post above for treatment guidelines from the National Osteoporosis Society. Do you know what your levels were, and is 1600iu a day enough?

I would like some advice as to how to talk to the third gp in the practice about my vit d insufficiency.
Brief history had stiffness, pain in hips, difficulty walking up stairs, getting off train etc got really bad before Xmas and carried on after Xmas. Saw gp who px NSAIDs and sent me for blood test ESR. Brushed off my suggestion that it could be vit d defiency.

Got my vit d tested privately and was insufficient at 39 mm/ol. ESR test normal.

Went back to another gp waving my vit d test results to be brushed off again and a px for a small dosage of vit d - 800 iu.

I have been supplementing myself with an additional 4000 iu per day. No change yet.

I believe that I have all the symptoms of osteomalacia. I am in a lot of pain.

So I have a further apt on Monday and want to ask where we to go from here as arthritis has now been ruled out and symptoms still present.

I really don't understand why two gps have said my symptoms are not indicative of vit d defiency. As if the test had come out 9 points lower I would be a prime case of osteomalacia (adult rickets) and presumably if I had not taken action my levels would have continued to go downwards.

I was vit D 'insufficient' last winter (level 31 with same normal range 75-200). I had problems with sleep too, and felt so generally ill that I secretly thought I was dying. :(

I took D3 supplements, but on the advice of a wholefood shop man whose opinion has been useful in the past, took liquid at 2000 iu per day not the 5000 iu recommended by the GP. He said 2000 was the max amount that the body can reliably absorb and retain orally, and that people taking higher amounts sometimes find their levels falling because the body treats the mega-dose as 'waste' to be eliminated. It worked for me, and my level was up to 135 within 4 months, and I felt much better.

It's hard to know, retrospectively, whether vit D insufficiency was a cause or symptom of other problems. My thyroid function was also low but 'sub clinical', I was diagnosed with hypermobility syndrome and my osteo-arthritis dramatically worsened.

My sleep problems and palpitations went as my vit D levels got back to normal. One thing to check OP, is whether you're taking any herbal sleep remedies? Ones containing high doses of valerian can cause palpitations for some people - and they did for me.

Miranda, if your parathyroid hormone is high and your vit D low you should have your calcium levels checked to rule out Primary Hyperparathyroidism.

Just thought I would update on this - I have been taking 5000 iu of Vit D now for approx. 12 weeks and all of my symptoms have gone. Feeling good!

I feel vindicated but also angry that I was dismissed by my GP.

My GP was brilliant. Tests were done by rheumatology in the middle of loads of tests but GP got results and started me on tablets within a week. I'm now up to4 months and a lot better.

It was all mixed in with my hypermobility syndrome and SPD so not clear which was which but my hands are 95% ok now and I'm a lot less tired.

Unfortunately I still have quite a few things it wasn't causing so I'm not completely fixed or even diagnosed

just book marking awaiting vit d results