Vitamin D Deficiency

Thanks for the reply, I appreciate it

It's been almost a month since I finished my treatment and I have felt very little difference. I had a small boost during my treatment but otherwise much the same. Did you have good and bad days? Also, did you find the fatigue was worse after a hard week at work for example? Finally, any differences in your vision? I've had a really hard time describing how my vision has changed since the beginning of this but it certainly has. I'm having a hard time believing that the vitamin D is my issue, I'm so worried that I actually have chronic fatigue and the vitamin D has just been something on the side. I am extremely low at the moment (I know depression can be a side effect of vitamin D) and really can't find anyone, in person, that can understand or relate to this.

Yes, I also had visual problems. I had periodic episodes of double vision although this seems to have stopped now. I can't emphasize enough that just having reached a 'normal' blood level of vit D indicates nothing about the underlying processes of osteomalacia, which take time to resolve. Your bone pain symptoms demonstrate that you do have significant osteomalacia, and you must allow time for this to be corrected: a good intake of vitamin D will allow your body to change the net movement of calcium and phosphorus into your bones, rather than out, until you reach a state of balance. 

There are lots of people who have contributed on here who have complained of just your symptoms. D deficiency serious enough to cause osteomalacia is awful. It causes a host of different, debilitating symptoms including depression, tearfulness and panic in some, that take time to resolve. Don't panic. Just keep up a good D intake and do what you can in terms of exercise - when you can - to begin to build up wasted muscles and encourage bone building. If you don't feel you can manage work, you must speak to your doctor about being written off sick until you feel better. 

I would recommend you have a look at the books or lecures available on Youtube of Professor Michael Holick who is a world leading researcher and physician specialising in vitamin D. When successive GPs proved almost useless, he provided the information that I might be looking at a long recovery - he wasn't wrong! 

Wishing you all the best. 

 

Very good info thanks

Iv had muscle n bone wasting from an antibiotic when I'd deficiency in potassium at time n was wondering all time is it possible to build it back up I didn't think you could but you've answered that for me thanks, gives bit of hope.

Again, thank you for your reply.

It has been very helpful and reassuring.

You would need to know whether any bone demineralisation was caused by osteomalacia (which is supposed to be reversible) or osteporosis, which may not be reversible. If the latter, I understand there are drugs that can help to preserve bone strength, but they are controversial. In both cases, gentle load-bearing exercise can help. Wishing you all the best. 

You can buy your own vitamin d in spray form n even test online. Don't depend on docs get yourself right they can only deal with you if your on the ground with rickets if you get my meaning they wait till your actually diseased b4 they see it n treat.

Thankfully not all doctors are like that.

Re: Rickets/Osteomalacia... they only deal with rickets if and once you've broken a bone. The great NHS, eh?

Hi Jane,

I'm glad to hear your symptoms relieved themselves so quickly. Could you describe anymore of your symptoms and their severity? I believe I have had my b9 and b12 tested; they were in the normal range. It was just my Vitamin D that was very low at 14.

Thanks for your reply,

James

On several really bad days work had to take me indoors in their wheelchair due to lack of strength. Some days my vision was so poor i dare not drive. Pins and needles in fingers. Numbness in toes and one leg. Exhaustion to the point of collapse and sleeping up to 18hrs a day at worst. Memory to the point of not knowing peoples names that i had known for tears. Total confusion to simple questions. Really uncomfortable head sweats. Largely all gone barr head sweats. Lack of bladder control several times.

James my vit d was 15 so not so different.

Jane, there are anecdotal reports all over the internet about people having visual disturbances with D deficiency. I certainly did; I don't seem to have double vision now that I am out of overt osteomalacia. It's interesting that this does not seem to be mentioned in the medical literature, but so many symptoms that go alongside D deficient osteomalacia aren't. I can only suggest we mention these symptoms to our family doctors or specialists (if lucky enough to get a referral) until the profile of actual D deficient symptoms is raised. 

I did and my gp seemed to accept it as part of the problem. The optician did, though may have been being polite ?

That's a good sign that vitamin D deficiency is starting to be taken more seriously. My GP sadly wagged his head at me and my optician obviously thought I was nuts because I didn't have double vision the day I went for my eye test! 

We need to educate ! <3>

Too true. The number of people showing up on patient.co.uk saying there is nothing wrong with me, why can't I function (by the way I have low vitamin D) shows that many, many people are seeing doctors who are still unaware of the impact of and disorders associated with D deficiency, and, signficantly, the time it can take to resolve.  

Totally agree. When you consider i have been treated off and on for depression since i was 14 and i'm now 53 i say respect to my Dr for taking me seriously mri etc ! Reading some comments i realise how lucky i am !

Wow, it is astonishing how much the effects of vitamin D can differ from person to person. My fatigue certainly hasn't been that bad but sometimes, throughout the day, I must sit and regain so energy in order to feel well again. I also suffer from depression and am lucky that I have been taken seriously by one of the doctors. Two of my least favourite symptoms have to be the fullness in my head and the vision problems. Although all of my symptoms are caused by Vitamin D deficiency and my Vit D was very low, I still cannot shake the thought that I may have chronic fatigue and my life will be ruined. However, I must mention, I have been diagnosed with mild OCD in the past which may explain the constant rumination over my health.

James it may not help but at one point i said to my gp i would cry if only i had the energy. I dodn't have the energy then and thankfully after a couple of months i did begin to feel better but that was weeks after completing the treatment. Before mri results came it looked like ms.

I do still tire now but nap rather than being "unwakeable".

Hi,

Been to the doctors again today after going home from work due to my tiredness. I asked about what I should do next in terms of alleviating my symptoms and general recovery. He was not especially helpful, however, he did tell me that it was important I got plenty of rest. What helped your recovery, was it just simply time?

Finally, did you get any information on your calcium levels? I discovered that my calcium levels have remained normal despite my low vitamin D. I find it strange that my bones ache, yet my calcium levels have remained normal.

Thanks

James

Yes my calcium levels were fine except for one spike which had levelled by the following week.

Have you had your thyroid levels checked ?

Hi James, 

most people's calcium levels remain relatively normal despite active osteomalacia. Calcium is an essential electrolyte, and the body works hard to maintain its levels in circulating blood. This doesn't relate to the levels in bone, however, which are under the control of vitamin D. If your vit D is too low to maintain the balance between osteoblasts and osteoclasts, calcium deposition and removal, the net movement will be calcium moving out of bone, despite the normal blood levels. 

If your bones hurt, you have the key clinical sign of osteomalacia which is almost always caused by vitamin D deficiency and will take time to resolve, even after your blood levels of vit D have risen into the desirable range. 

If you find a quick fix for vit D deficient osteomalacia, let us all know, but in over a year of research I have found nothing more than keeping up vit D levels through supplements/sun exposure, good rest, good diet, gentle load-bearing exercise to encourage bone density and muscle rebuilding. You should eventually turn a corner, but it might not be yet.

:-)

Thank you for your replies,

Again, you have been very helpful and reassuring. Although my Vit D levels are now back to normal (137) I feel I am only getting worse, particularly my leg pains. Is this normal (if I can use that word haha)?

James

Yes, James, as explained above, it can take MONTHS to resolve the pain, weakness, fatigue and depression associated with osteomalacia and up to a year. It did for me - I had several episodes when I was getting worse pain, and didn't even turn a corner until 7.5 mts after beginning treatment. Several people on these forums complain of the pain being more acute for a few months after treatment, before beginning to resolve. So all this sounds completely par for the course. If you are still concerned I would suggest you see your doctor. 

Apologies for essentially asking the same questions over and over, but this does concern me a lot. I have been to see my doctor, but he has just said rest, rest, rest.

Unfortunately, I'm extremely impatient and am not used to long term illnesses as I've never been particularly ill my life. I believe my constant worrying is not helping the situation either.

I appear to be quite the hyperchrondriac! I'm not one for sitting around. I feel particularly guilty having time off of work, especially as this is an illness where, on the surface, I appear perfectly fine!

I really do appreciate your responses!

Yep they're just trained in disease n only recognize disease not when disease is forming or prevention. Obviously if your low they'll give u supplements but you need to do your own research too. As patient mention ed earlier her doc was unconcerned about it n didn't give her high enough dose. Some docs are great others r not n some just don't know. It's only when you've experienced something yourself you truely know what it is. I guess there is worse diseases n they are more concerned with them than a bit of low vit d. I think there's more of an awareness now. Iv very negetive experiences with doctors unfortunately. I always seem to get labelled as psychological when in fact there's something wrong

Best to change docs when this happens coz every time u get sick they think it's in your head which is crazy!

Well said Melissa. We need to remember however we can change gp.

I am extremely lucky with mine.when he was requesting bloods,i asked which. He told me and i asked him to add vit d which he did.

When the problem came back as d he said he was glad i'd asked and said he would be more aware next time. How many would say that ?

UPDATE:

The muscle aches seem to be reducing; there is less pain throughout the day and it seems to have gone back to being an ache exclusively in the morning.

The fatigue and other symptoms persist.

UPDATE

So, my initial Vit D level was 14 (March 2016). After a brief but intense treatment, that rose to 137 (May 2016). Now it has dropped down to 68 (July 2016).

I am being referred to a Chronic Fatigue Syndrome specialist as my GP believes that this is the cause of my aches, weakness, fatigue, the spaced out feeling and vision problems.

I fear for my future.

James i have just been put on a maintanence dose of 800iu a day for 2 months as my tiredness and muscle weakness was returning.

How are you getting on ?

Continuing to get worse and the doctors are continuing to not take me seriously. My muscles aches have also returned and my tiredness is getting worse.

My second blood test came back with a reading of 137, my most recent came back with a reading of 63 meaning it's more than halved! My doctor believes I have chronic fatigue syndrome, although the I don't want to accept that diagnosis just yet.

Going back on Wednesday to have a discussion about other possibilities, although I'm going to insist on being put back onto vitamin D tablets as my levels are clearly not being maintained.

I spoke to an occupational health nurse at my workplace who told me that GPs have very little knowledge on Vitamin D. This seems accurate to me as my doctor believed that after 2 weeks on medication I should have been feeling 100% better!

The most debilitating part of this illness for me is the fatigue and the constant spaced out feeling I'm experiencing. I was wondering how the experience has been for you? What have been your worst symptoms?

Again, thanks for the reply, I'm beginning to lose hope although I'm pleased to hear you are feeling better.

Don't give up BUT if needs be change your gp or practice

I'm in the process of changing doctors surgery, however, I think it may be a fair assumption that I have chronic fatigue syndrome due to my mild sore throats and I seem to randomly crash sometimes. I can't find any correlation, but one minute I'll be feeling alright (not well though) and the next I'll have a headache, and feel weak all over.

I don't care what's wrong with me any more, I just want a definite diagnosis so that I can move forward and makes some steps towards recovery. I miss being well, I haven't been since January of this year.

Glad to hear you are changibg gp. That is a positive srep !

Have you ever had glandular fever James ?

I have not had glandular fever, I've been tested. I have also never had the flu!

Vitamin K2 is what helps keep Calcium in your bones and not in your bloodstream