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

Calm that's what I was thinking

I wonder if we could get an 'encouragement' group going on MN not a pressure group as we aren't doctors and we could be advising something bad - but so many of us on here are:

tired
badly diagnosed
diagnosed with long term conditions
depressed
fed up
no energy

I mean it wouldn't fix everything for everyone - but it wouldn't hurt

Goodness me I sound like a forever living sales rep!!

on second thoughts it's a crap idea

Mind you after 20 yrs of ME/CFS I have started a very small amount of exercise after 7 months of Vit D (plus other supplements)

Sofia that's very interesting thank you. I have sleep problems and suffered with pnd and anxiety and my vit d levels were tested as being very low. Because of this thread I've started my high dose again from the beginning. And my sleep has been much better. Tis time I will keep up a maintenance dose. 20 000iu once a week are the tabs I have. I'm hoping that's ok for maintenance in one go.

Reading this thread has encouraged me to try it. The D3 from Amazon is that the right one?

Katy Can I ask what else you're taking?

B12, Zinc & folate - all prescribed in the last year as a result of 'normal' blood tests that when questioned weren't that 'normal' after all

The nerve pain I have had has almost gone (reoccurring near to my B12 injection despite oral spray supplements)

My mental health is better more positive

I sleep better & less

My bone & joint pain is no longer everywhere - I still have it in several points but not globally

I can do things without spending days in bed afterwards, I can see a point when I may have spare energy again

I am starting B12 injections next week to go with my foliate and Vitamin D prescription.

Thank you for starting this thread.

WaggieBee...I kind of missed the bit where your username is supposed to be anonymous :)
You should get your levels tested for several reasons.

1. there is a "sweet" spot (I won't say it, because the uk and us use different units for measuring.) and they think vitamin d works most efficiently if it's in the "sweet" spot. They don't yet quite know why.
2. For some reason (they don't yet know why) some people process/synthesize vitamin d very poorly and need super high doses to just maintain normal levels.
3. If your dad is a scientist who works on vitamin d and nags you to supplement even though you have white skin and live in los angeles and spend lots of time in the sun, you can have levels that are above the "sweet" spot and testing will help convince your dad that you therefore don't need to supplement. :)

Could I also add, that my ds has mitochondrial disease and has to supplement with high doses of numerous other vitamins, and co-enzymes etc. and it sounds like some of you are describing mitochondrial dysfunction issues that may benefit from more than just Vitamin D. (My ds takes high doses of L-carnitine, CoQ10, Riboflavin and supplements with Magnesium, D, multi and two different kinds of fish oils....and just starting B5 for acne).

Yes, D3 from Amazon. SwansonVitamins is a reliable brand. I get mine from Costco (Kirkland brand).

rummikub It may not be quite so advantageous to take your maintenance dose weekly, much better to take a smaller dose daily , or perhaps double the daily dose every other day. The reason for this, is that the half life of D3, in your system is about 24 hrs, after 24 hrs, half of the amount you have just taken becomes 25hydroxyD3, I.e. the storage form which is not nearly so accessible to your cells, when used in an autocrine manner. See my earlier post. You may very well be seeing improvements in your symptoms due to those autocrine responses of your body, why not allow the best opportunity for them to happen by keeping the mix of native and storage form of vitamins closer to that which would have prevailed in our evolution, when vit d would have been synthesised by our skin almost every single day. See the work of Prof. Hollis for a more detailed explanation.

Hope this is useful

BTBH

Yes that makes sense BTBH thanks. My prescription is for 20,000 iu from the GP so I not sure how receptive they'd be to changing my dose.

Plus I have lots of the 20,000 iu tabs left!

Would it work if I take 20,000iu every 3 or 4 days? So the amount of useable D3 available by day 3 would 5000iu. Then I top up again on day 4.

I think sometimes if someone has very very low levels, they will give super high doses to do a quick boost. I also think that that may be an old fashioned way of dealing with it and these days just taking 3000-5000iu a day is probably better. It's really not an expensive vitamin to take. I think I pay $10 for a year's supply. There are lots more on my ds' list that are WAY more expensive.

Just to back up everything that BTBH says....my father references Prof. Hollis' studies frequently and his papers give a biochemical explanation for how it all works.

Hi just in case BTBH is still checking this thread!

My vitamin D level has come back as 61 which is normal according to the Dr, just wanted to check what you thought? TIA

Thank you Sofia. That makes sense.

rummikub Yes, it is good if you can reach a pretty good blood level fairly quickly, which you would do , if you took , 20,000 IU every 3 or 4 days. When you reach your desired level, it would be best to have a daily dose, of less. The aim would be to maintain a good blood level, at a reasonably constant level, throughout the year. Individual responses tend to vary quite a bit. A regular test , maybe in spring will help you discover what is best for you. Make sure your prescription is for D3 , not D2,( which is less effective )

girliefriend

Your level of 61 is at the bottom end of the "normal" range, at least in my NHS area lab. ( 50 - 167 ) . It is midsummer now, so I expect you have been making some vit D since late april, before that time it is very likely that your level would have been lower. Probably dropping from its peak , in early October last year. Could your symptoms be due to low Vit D ? , well yes they could. Is it advisable to get your level up ?, in my mind, yes, particularly since you are describing symptoms which might be caused by a lower level than your body requires.

It is safe and easy to do that.

Your doctor is right in saying that your level is normal, i.e. many many people would be measured at that level in this country at this time of year. That does not mean that your level is optimal, or that all those other peoples level is optimal. Your level is about half that enjoyed by your human ancestors , for millions of years.

 Don't forget,   Vitamin D is an enabler,  it enables your cells to function normally, to create products, proteins, signals to other cells, etc etc. You also need all the other required inputs to your cells for this to happen,  in other words your diet.  You should be consuming plenty of veg, fruit etc, with a wide range of vitamins and minerals. Don't forget at least some dark green leafy veg, which is most important, as the chlorophyll in them contains magnesium, a known co-factor of vit d.  

Is vitamin D guaranteed to cure your problems , well no, but at least you will be giving your body a fighting chance !

  With your level now , of 61,    if you took 2000 IU  per day  you could expect to reach about 110  in 3 months.   However, in winter if you took an extra 1000 IU ( total 3000 IU ) ,   that would compensate for the lack of sunlight. Also extra 1000 IU on top   would not be unreasonable ,  because you are trying to help a current health problem and not simply trying to maintain a staus quo with regard to your health.  

Hope this is helpful.   Good luck 

BTBH

I want to also point out that the blood levels are measured using a different scale in the USA and the UK. They are close enough that one can mistake them, but make sure that if you are reading an article or paper that you don't mix them up. The USA measures in ng/ml and a good measurement according to the Vitamin D Council is 40-60. The UK measures nmo/Liter and a good measure should be around 100-110.

Good point Sofia ! The conversion factor is 2.5 Just multiply the American ng/ml number by 2.5. To get the. UK equivalent nmol/L. The rest of the world uses. nmol/L. as well. It's just those pesky Americans trying to confuse us ... ! Actually the majority of Vit D research is done over there, so we shouldn't complain, although worldwide research papers are now being published, hundreds, if not thousands per year.

nmol /l actually means - billionths of the molecular weight in grams (of Vit D )per litre of fluid (blood).

ng/l actually means - billionths of a gram ( of Vit D ) per millilitre of fluid (blood)

BTBH

Whoops .... typo - missed out the m

ng / ml - actually means - billionths of a gram ( of Vit D ) per millilitre of fluid ( blood )

Great thread - this has encouraged me to start the vitamin D3 supplement that has been sat in my bathroom cupboard for ages

BTBH thank you. Yes I'm on vit D3. I will have a chat to my GP. I'm just hoping they won't quibble and say I'm now within range rather than being at an optimum level.

rummi You might find the docs reluctant to write prescriptions for several thousand units, daily. It is because that is not a recognised NHS treatment regime. Anyway - it would be cheaper to get them from say Amazon, oil filled caps , or possibly asda tabs at 1000 IU per tab ( if you have to pay for prescriptions ).

    Just out of interest ....     the cost of manufacture of VitaminD3  is  only  about  £5  per gram.    That translates to 10, 000 doses of 4000 IU or  0.1 milligram.  i.e.  probably about enough for 1 person for 25 years. Incredible isn't it.    All the extra costs are due to packaging, splitting doses marketing,transport, company profits etc etc. 
You should be able to find them at a really good price,  just a few pounds for a years supply.  As  Sofia says ....    try and choose a reputable supplier. 

BTBH

I will look into it BTBH. I think I agree with you re my GP. I get free prescriptions as I have no thyroid. So my body is in turmoil and finding it hard to get into an equilibrium. And my consultant said they just want you to be on the minimum dose they can get away with of thyroxine. I was shocked at that as I had thought that everyone was different and had differing optimal levels to feel human.

Ooooh, I think Vitamin D supplementation is extra important in people with thyroid issues....you should google it....

I had noticed a link between thyroid issues and vit d deficiency when i was googling all stuff related to thyroid. By the time I knew that it was too late, I'd already had the the op. no choice, lump found.
So am i right in guessing that vit d supplementation is important to help with thyroxine utilisation?

Googling now. There seems to be a link between thyroxine and bone density. I was wondering wht the consultant was testing for bone issues when I had blood tests.

www.msn.com/en-gb/health/healthieryou/sun-deprived-britons-lack-vitamin-d-say-health-experts/ar-BBljGvt?ocid=iehp
sorry not sure how to add a link .
I noticed this today. I am very interested as I have recently been diagnosed with MS and read that there may be a possible link. I live in UK (Midlands). I am pale skinned and don't go out in the sun unless covered from neck down (I burn easily), and don't eat fish or green leafy veg so I suspect my intake of Vit D is very minimal. I have found this thread an eye opener and have started to take supplements in the last couple of days. Very interested to see what if any effects it has on my general health. I currently have aching joints and muscles, insomnia, restless legs, occasional muscle spasms, poor vision and extreme fatigue.
Thank you for such an informative thread.