Vitamin D deficiency

I will feel even better when the sun comes out!

There is the possibility of PMR another auto immune disease which is often muddled with CFS. That tends to have very painful shoulders and hips, pain moving and terrible fatigue. Taking steroids for a day or two has an almost magical effect on improving the pain, which confirms PMR. It tends to be people over 50 who get it though. The symptoms are also like vit D defficiency. 

Hi, 

Your post interested me, because your symptoms are very similar to those I had at the beginning of my illness, which was eventually diagnosed six years ago as fibromyalgia and has now been named as vitamin D deficient osteomalacia. 

I too suffered with six weeks of diarrhea, although this has never been my bowel's tendency, which ended with muscle weakness so bad I couldn't even type. The GPs I saw all shrugged and told me it was probably a mild viral thing and they could see nothing wrong with me or my blood work (no D testing back then). 

To answer your question, after vit D treatment began a couple of months ago, some of my symptoms, especially the rib pain and tearfulness, did get worse before getting better, but that awful bruisey feeling has mostly gone now. 

I hope you are feeling better and well on your way to the long, slow recovery from D deficiency illness.

All best wishes.

:-)

Jaybelle,

How long did you have the pain get worse before it got better? A week or two?

Thanks!

Hi. 

The bruised feeling in my ribs started to improve after about three weeks or so. The deeper pain in my feet and hips took seven months to begin to resolve. I still (8 1/2 months since beginning treatment) have pain in my elbows and hips. It does seem to be improving slowly, but I have to say that there were times while I was taking the high dose D supplement when it seemed to get worse before getting better.  

All best wishes, 

:-)

Hi Lini, 

NHS guidelines suggest treating vit D deficiency with a supplement of 50,000IU/wk, but your dose, even if daily, only amounts to 14,000IU/wk. Is this the dose your doctor suggested? It might be worth asking him/her why, as it seems very low to treat deficiency, and much lower than the official guidance. 

Your symptoms are very familiar to us! Hopefully time and a good hefty dose of D will help your skeleton to heal and reverse the osteomalacia that is giving you such bone pain, muscle weakness, reflux and brain fog. 

I'm two months in to treatment and still waiting for appreciable change to my pain and fatigue, but I understand that this could take up to a year. 

All best wishes.

:-)

 

I take 2000iu per day too. My vit D measurement was 26 when I started on that dose, I am not sure if that would be counted as vit D deficient or not.

A serum vit D level of 20 - 30 ng/mL  is regarded as insufficiency - one step up from deficiency. The official guidance seems to be that we should all have levels of >30 ng/mL blood. I don't know how long you have been treated for, but have you had a follow up blood test to see if your levels are going up? 

All the best,

:-)

Sorry it was 26 nmol/L not 26 ng/mL. I also checked I was actually given 800 iu per day not 2000iu. I am having another check soon. 

My bad, should have given nmol/L - yes, 26 is the lower end of insufficiency, almost into deficiency. I wonder why your doc only gave you 800IU/day? You could arm yourself with the recommendation of 50,000IU/wk with an official NHS source from a google search (sorry, can't put links in these replies as they get deleted) if your level has not substantially improved on your current dose.

Wishing you all the best! 

It seems that although GPs have been told to routinely consider vit D deficiency and screen for it now, they are still inexperienced in understanding just how painful and debilitating the illnesses resulting from vit D deficiency are! I guess it's a whole new medical revoution. Maybe in a couple of years, it will all be obvious, when they have had a chance to see enough patients with the correct diagnosis of vit D deficiency and not ME/CFS/Fibromyalgia and all those other 'Can't think what else is wrong with you' diagnoses with no real cause or treatment.  

The annoying thing is it is very easy to do a vit D blood test and not expensive. Perhaps they should encourage pharmacies to offer it occasionally. People may be willing to pay to have one done even, if it were easy enough and handed them on a plate, if the NHS cannot afford the time and money. 

My doctor checked my vitamin d but the lab sent it back refusing to test it as my calcium levels were normal. He protested and it came back at 15 I think it's ridiculous. If a patient or doctor thinks vitamin d could be the cause they must investigate 

I really don't understand what say the lab had. They are given some blood for a particular test and they should just test it. I would not have thought that the people doing the tests would be bothering to do checks against your calcium. What if you were just having a vit D test, they would not have known your calcium results. They should just send the results back to the surgery. It sounds a bit strange. 

All I know if I did a vitamin d blood test and my doctor informed me that the lab refused to test it.  I had previous blood work that showed my calcium levels were fine. I think it's just funding the nhs won't test unless they have too 

Osteomalacia often causes low serum calcium (hypocalcemia), and it is up to different health authorities to decide on the protocol for vitamin D testing. Some may have decided not to look at vit D unless there are clinical or serological signs of it. I guess it's back to fighting tooth and nail for doctors to take our symptoms seriously. In my case, I had hypocalcemia causing a raft of neuromuscular symptoms as well as the symptoms of my vit D deficiency - yet my doctor simply referred to it as a vitamin deficiency. I had to force him to confirm or deny that I was suffering from osteomalacia - a term I had come up with from my own research. 

I have now come to the end of my ten week course of high dose vitamin D, and have to say I feel almost as awful as when I fell into the GP's surgery back in Feb. I'm going to order some 5000IU tablets and keep my weekly dose to at least 40K IU/wk until I have had my scheduled check at the end of June. 

All the best. Let's hope for some sun, eh?

I can believe funding may have something to do with it, but as they had already incurred the cost of a nurse taking your blood it seems a bit stupid. My pharmacy was doing free vit D tests recently so it can't be that expensive a test. The NHS can do mad things though.

I wish vitamin d testing was done locally here. People seem to think it's older people stuck in nursing homes that get osteomalacia. Well I'm 19 and (was until this) a full time college student walking outside everyday 

Oh no. I must say i haven't noticed much difference in pain and I've been on the high dose tablets for about 6/7 weeks. I hope the Drs sort you out and you start feeling better too. I have other issues that made me cover up in the first place so I'm learning to find clothes that expose me to the sun. No more jumpers and jeans for me  

I am sure if you start taking vit D supplement things should improve. 

I should have said it can take about twelve weeks for things to start improving.

My knees are stronger so walking has become easier but the pain has become terrible. My dr explained the pain would get worse before it gets better but I think it's because my body is run down atm that the pains worse 

Do you think you might have something else as well as vit D deficiency? Perhaps an auto immune disease?

Doctors think I have cushings disease and I've been seeing an endocrinologist for tests but so far haven't had anything back in relation to that 

Cushings would not have the pain type symptoms you are talking about I would have thought. Cushings type symptoms can be caused by taking steroids, are you on any tablets? You tend to get a moon face with Cushings.

No I'm not on any tablets but my blood work shows high cortisol. They think I have cushings which would explain the muscle pain. And I've been diagnosed with osteomalacia which causes my bone pain. My dr described osteomalacia to my partner, he said, imagine I beat you up and smashed every bone in your body, that's what the pain is like, it would take a health person about 3 months to heal, he then said because my vitamin d is so low it would take me more like 6 months to heal 

Osteomalacia can be caused by vit D deficiency, it particularly affects the elderly nowadays, it used to be called rickets in the good old days. In fact rickets virtually died out in the twentieth century and then we all started sitting inside with our x boxes and electronic games and it is on the increase again. They reckon half the population of UK is vit D deficient, they say vit D is the new vit C! 

Yeah osteomalacia is what I have, it really sucks 

Have you had a bone biopsy? What dosage of vit D are you taking? You should be OK after a few months.

No I haven't had a biopsy. I think it's roughly 5,000 but not sure as the packets in the bathroom 

That sounds a good dose. My vit D reading was 26 and I have been taking vit D, 800 with calcium and I built up to vit D reading of 54 in three months. That included sitting out in the sun.

Oh that's good. I really hope mines gone up. It was 15.3 

Hi Jaybelle- you are correct and a month ago I went to my GP as I was feeling no better and he has given me a seven week 40,000unit dose of 20,000units twice a week. I have began to feel a tiny bit better and also take magnesium, vit k2 with the vit d3. I have also been in the sun when it's out and taken time off work (3months) as I am still so fatigued and bone pain in heels, knees and shin still there. however, my pains in sternum, ribs and chest are almost gone. I am trying to stay positive and join in with activities when I have energy, but I tend to literally run down like a battery within three hours and need to rest again to recover.

I am staggerred by how unwell I have become after being such an active person all my life. Terribly depressing.

That's more like it! 

I think I'm making progress too, although it often feels like one step forward and two steps back. 

I found out this week that a colleague has been through vitamin D deficiency illness (after having her second child) and she's been like a biscuit tin full of sparklers as long as I have known her, so there must be hope! 

I had tests for calcium and magnesium that came back fine.  My vitamin d test was taken at the same time and has come back as 38, I am told it should be 50 or above. I am starting on a high dose of cholecalciferol for 6 weeks then a maintenance dose before having it checked again.  It has taken over a year to finally find what may be causing the many symptoms i have, like so many others.  I think the previous doctor thought i was just paranoid and put everything down to depression, making me feel like i was a hypochondriac.  Thankfully, i persevered and have found a good doctor who seems to be on track to making a difference to the misery i have experienced.

Yes- you were right, I meant to reply but I was too fatigued at the time to do so. The good news is I am now at level 54 after 9 weeks of 40,000 iu of D3 and feel about 80% well now. I have carefully sat out in the sun on good days for 15-30minutes to get more Vit D.

My fatigue has lessened dramatically but i do still get tired and sleep alot and my bones still ache but no where near as bad. I have been off work for 3 months to recover.

Overall, I am building up my Vit D reserves with a maintenance dose of 2000iu per day and I will retest in mid winter as I  intend to stay well and NOT get so poorly again- it is a horrible deficiency.

Thanks

Hi lini38837 ;

Were you on 40,000 IU D3 each week for 9 weeks?

Was your vitamin level of 54 below normal range before you started?

Glad you are doing better.

thanks

What's a bone biopsy and is available on the NHS?

You can have a Dexascan to check your bone density. They are available on the NHS. Have you had one?