Vitimin D, can it have this effect?

[SistersofPercy]

We had a discussion over on AIBU last week about being pale and someone mentioned vitamin D if you don't get in the sun much. Now, I don't go out a great deal it has to be said and if I do I avoid sunlight.

I have Hypermobility and scoliosis so take 30/500 codeine, Diazepam and Nortryptilene daily for this. It's tended to leave me pretty lifeless as well as the painkillers affecting my bowels (TMI, apologies)

Anyway, just over a week ago I started to take vitamin D supplements. This week my bowels are as normal and regular as they were before the painkillers, my joints are a lot less clicky and I have double the energy. I've been in the garden all morning, pottering and moving plants around etc, something I've put off for the last 4 months because I didn't have the energy.

Whats going on here? Have I found something I was lacking with the Vit D or am I just having a good week lol

nonet So sorry to hear about your diagnosis.

You are right, Vit D is thought to have effects associated with both the onset, also the progression of Multiple Sclerosis. Much research has been done and is ongoing. That does not mean that lack of vitamin d definately is the primary cause, or that it definately will help in managing the disease. It may be one of the factors. However to my mind, since you may have a deficiency, and it is fairly straightforward to put that right and it may help with your other symptoms , why not do something about it. Nothing to loose but a definate possibilty of benefit for you.

 You presumably must be under the care of your own medical professional, talk to him about your intention to up your vitamin d level. As you probably see on here, I am a believer in testing  your level,  then taking whatever action you see fit , with respect to raising your blood level, then checking that it has worked, with another test, about 3 months later. 

Your doctor may organise the tests for you, if not, you can get it done privately, but in an NHS lab. I have posted many times on here vitamindtest.org It does cost £28 per test.

Oily fish, i.e. wild salmon will have some vit d, farmed salmon only about one fourth of the wild salmon level. You would struggle to get a significant amount of vitamin d from your diet, possibly a little in meat, depending upon how the animal was kept/supplemented etc. I have mentioned dark green leafy veg several times. They do not contain vitamin d, but a very important co-factor, magnesium , in the chlorophyll molecule.In addition to all the other nutritional benefits, folate, vitamin K etc. Greens are very important to human health.

  The incidence of MS rises the further you go from the equator,  where UVB is strongest and vitamin d levels are higher. A country like Gabon( on the equator ) for instance has,essentially, no MS. It may be that other photo products in the skin may, I stress may , be helpful or protective.  So , a bit of sunshine on your skin could possibly be very beneficial,   do not burn, ever,  but a gradual build up to a few minutes regularly, when possible, on a large area of skin, without sunscreen may be helpful to you as well. 

    As you will see in my earlier posts,  ancestral blood levels were around  120 -140 ,     and many vit d researchers recommend  100 - 150  as the level to aim for. You will likely need several thousand units daily to achieve these levels,  although some people need less, some more.  That is why I believe testing is a sensible thing. Rather than just guessing.  

 I hope this is helpful for you,  sorry again that you have that diagnosis. Here is a website which gathers together evidence, research etc concerning vitamin d and its effects on MS <a class="break-all" href="http://www.vitamindwiki.com/Overview+MS+and+vitamin+D" rel="nofollow" target="_blank">www.vitamindwiki.com/Overview+MS+and+vitamin+D</a>  . 

Again, please consult your own medical professional before taking any interventions on your own.

BTBH

BTBH, thank you for your reply, again very informative. I will speak to my GP or the MS nurse at the hospital about testing.

Am still waiting for the start of my physio appointments (discharged for hospital 4 weeks ago) but have heard nothing yet. There was no mention of vit D levels or testing while I was in hospital; I will raise it and if they are non-committal I'll get my own test done as you suggest.
Thanks for the link too, will have a read through.

I don't know if the experts are coming back to this thread but I'm just a bit nervous about a couple of links I've just found contraindicating taking it with auto immune disorders. Has anyone heard of this?

lucretiab You may be thinking of sarcoidosis, an autoimmune disorder. It is very rare.
In this disorder, cells take in vitamin D, (from the bloodstream ) convert it to the hormone form, which then leaks out into the bloodstream when it shouldn't. The end result is that you could , in about 10% of cases ,have a higher than necessary level of vit d hormone ( 1,25dihydroxyD3) in your blood. Which could lead to increased calcium absorption when not required, which could lead to calcium deposits where they are not wanted, i.e. arteries etc.

Many , if not most, cases of sarcoidosis affect the lungs, but could affect other parts of the body, lymph nodes. Granulomas ( nodules ) of immune cells form. It is not known what causes this condition, although it is suspected that there may be a trigger such as viral infection etc. Most cases of sarcoidosis resolve on their own.

If you have sarcoidosis , or any other serious disease, then, as would be prudent, consult your own medical practioner about taking anything.

Most people should have no issues at all supplementing with Vit D, if they wish to. About 1 in 300 might have an allergy to the filler in the tab or cap, or spray, in which case change your method of delivery. If you do have any kind of reaction , then stop and reconsider. It is very unlikely though.

BTBH

I’ve been taking 1,000 IU regularly every day for the last couple of weeks or so. I am feeling better, in that some of the “brain fog” has lifted. I think it’s a cumulative effect: I feel a tiny bit better, so I achieve a tiny bit more, and so on. I have heard anecdotes from people with anaemia finding noticeable improvement soon after taking iron supplements. I would guess that taking vitamin D supplements would have more of an effect given that vitamin D is involved in more systems.

I’d forgotten that I’d posted on this thread. I’d forgotten to order the blood test as referenced above. I will order that test tomorrow, take the test, then increase my daily dose. I value how much my mood and energy levels have improved in a very short time.

BTBH - Has there been much research of vitamin D levels in older people? I’m now wondering whether symptoms that I regarded as the “normal aging process” in terms of intellectual diminution/depression might actually be more to do with a decreased physical ability to metabolise essential nutrients.

BTBH sorry to bother you I sent you a pm in relation to this topic if you get any free time to help with a query

Yes, older people are less able to metabolize essential nutrients and should supplement with lots of things.

Most of the daily recommended vitamin levels were set to prevent the known ailments of yesteryear e.g. vit c - scurvy on sailing ships.

In the UK winter we do not get enough vit D. the sun is lower, the days are shorter, the days are colder so we cover up more. People often think that sunburn is related to temperature - its not. you don't get sunburned in a sauna but you can be sunburned on a ski slope. So think radiation levels i.e. exposure time (day length), exposure surface (short skirt/sleeves), intensity (height of sun in sky). The factors affecting burning are the same ones that help us produce vit D.

An awesome nutritionist was explaining this to me once. We now all take Vit D3 between Oct and March and we have all noticed how we seem resistant to colds. The other health benefits of this fabulous vitamin should not be underestimated.

W x

better Ive finally got my results back...they have said my levels are 62 which Im assuming is ok? (it said 50-100 was within normal range).

I don't know if you remember but they've just diagnosed me with RA but lots of my symptoms are similar to Vit D Defiencency. Consultant said I couldn't possibly be lacking in Vitamin D as Ive recently been on holiday.

ihearttc - I came back from the Canaries in January started on Vit D & had a very quick benefit - it was visible enough for my colleagues to notice & comment

Interesting thread! I've been taking Vit D for about a year now, after blood tests (for tendon pain and being generally knackered) showed very low levels. I live in grey, pissing N.I. but had recently come home from a sunny holiday when I was tested. I started on a very high-dose prescribed supplement, and since that ran out I've been taking 50 micrograms most days.

Results seem to be: I feel much less tired and have fewer foggy-brained days than before. Tendon pain hasn't gone. It may not be as bad as it was, but I'm not counting that as a results. However Wendy makes an interesting point about colds. On several occasions in the past year my dh and two dds have been stricken with really nasty colds, and I have escaped them every time. I'd thought it was just luck, but perhaps it was the supplements.

iheartttc, 62 is fairly low. I would supplement. Also, just because you have been on holiday doesn't mean you aren't lacking. I live in very very sunny Los Angeles and my dd who has the whitest skin on the planet and rarely remembers to put on sunscreen (despite my constant nagging) measured low on her last checkup. She now supplements. Some of it is how much time you spend uncovered in the sun, but some is also dependent on how your body metabolizes the sun and makes Vitamin D. They are still figuring out the nuances of this and why some people need more than others.

wanda yes there has been quite a lot of research about vit D and older people.

Elderly people do tend to have lower vitamin d status, than that found in younger people. It has been proved that older skin is less able to convert sunlight to vit d, it is up to 75% less efficient at doing so. It is thought that this is one reason. Another reason is thought to be that older people are less mobile , so will just not be outside in the sunshine , making vitamin d.

One of the reasons for a lot of this research is that older people suffer more fall and fractures, therefore investigators want to find out why and also how to prevent. Lack of bone and muscle strength are obviously candidates. Vit d is part of the bodily system which maintains those features.

 Another avenue of research is brain function. It appears that vit d , is intimately involved in clearing the brain of debris, such as amyloid plaque found in some dementia. Macrophages, ( a type of white blood cell )  seem to operate more effectively when vit d levels are higher.  Please see my earlier post about  Alzheimers.   This is ongoing research. The results are not surprising , when one considers that Vit D  can affect   10%  of all your genes.  Parkinsons and other neurological disorders seem to be linked as well. Lots of evidence!

 You are right ,  nutrition is very important.  Vitamin D is an enabler,  allowing your cells to utilise those ingedients that are present, i.e. your nutrition , I have mentioned this in several previous posts. 

Glad to hear that Vit D is helping you , even in such a small dose. Don't forget, the brain contains a lot of fatty acids , you need DHA EPA, omega3 etc , these are essential fatty acids. Meaning you cannot make them inside your body , you have to consume them in your diet.

BTBH

I am thought to have Fibromyalgia/CFS but no diagnosis yet. I have almost all the symptoms of vitamin D deficiency listed on thes page. I tried the betters test (I think that's right) and although I can't say my sternum feels any more than tender the bit on my shins is really painfull. I also have tingling and sometimes burning in my fingers and toes and so spoke to my GP about vit d and b12 testing. He's happy to do a b12 but said to supplement vit d myself with a cod liver oil capsule.

GP didn't feel my vits could be very low as all my other bloods were fine and a bone density scan 18 monthsish ago was fine.

In the meantime I have bought vit d 1000iu. The bottle says 1 a day, do not exceed stated dose. I thought I would take 2 a day for a couple of weeks then drop to 1.

Is this enough? What else should I take? I'm also on anti depressant for anxiety. Any advice welcome.

Eva50 My recommendation would be to get yourself a new GP as your current one has clearly not updated his/her medical knowledge in many years. Vitamin D isn't just about bone density.

You absolutely need to test your Vitamin D levels. Someone posted a link earlier in the thread for getting it done privately. The vitamin D council recommends 3000-5000ie a day for vitamin d supplementation. But really you should get your levels checked so you know what's right for you.

*3000-5000 iu a day.

Been to GP today and asked for my vit D to be checked along with a bone profile. Bearing in mind a previous vit D test showed a level of 8, I am borderline for osteoporosis and have a history of calcium and parathyroid problems and have just had parathyroid surgery, he agreed but said that the labs will often refuse to process vit D requests from GPs.

Has anyone else encountered this? It seems ridiculous to me.

Sofia thank you. I would love to know what my levels are but the GP was not for testing and I don't have the money for a private test at the moment. I don't want to wait until I do to start taking the tablets as I am so hopeful that this may be the answer. I have had these symptoms for about five years and gave up my job last year as I could simply not cope anymore. I am better than I was but, I think, only because I pace myself. I will order some 5,000 tablets from Amazon and hope for the best. B12 to be tested next week (my Mum had B12 injections for years).

bestIsWest exactly the same problem!

BestIsWest....Really are NHS labs allowed to refuse to perform tests ordered by a doctor? Can't imagine how the lab would be able to determine what the seriousness is of the issue. Seems to me that there is a serious case for a lawsuit there. I do question whether your gp is telling you porkie pies.

Sofia, there are several other tests that can only be ordered by a consultant - for RA, rheumatic factor can be asked for by a GP but anti CCP can only be requested by a consultant in several health authorities (I know this because I can't have ones as my symptoms weren't quite right..... my brother has the highest anti-CCP recorded in Sweden or possibly europe but I can't have mine tested as the consultant won't agree)

The GP wrote 'Vit D please' twice on the blood test request form so we will see what comes back. I will be taking it further if I don't get a result.

Wow, sorry I didn't realize. I guess it's just a really good reminder how important it turned out to be for my ds that I moved back to the USA or his mitochondrial disease might never have been diagnosed.

Just heard back from the GP, My vit D was 57, so they did test on this occasion.

Just want to say, after reading this thread and all the good advice from BTBH I have been taking 3000iu D3 a day, along side a daily menopace tablet,
I can honestly say I feel more 'awake' and have energy to do things!
Also my legs, particularly thigh bones hurt a lot less,