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Vitamin D deficiency advice..

Messages
11
Hi All,

I've just had some blood test results back and my doctor has flagged that my vitamin D levels are extremely low, 26nmol/L (healthy range 75-200). I have not been tested for Vit D levels before.

I have reason to believe 26nmol/L is probably much higher than my average over the last few years as I have spent a fair amount of time in the sun in the weeks prior to this test.

My Doctor has prescribed 90 days of 3,200IU capsules, then re-test.

-I am not well versed in what Vitamin D actually does, but I have been suffering with a variety of cognitive and mood symptoms (*including severe fatigue, but do not think I actually have CFS).. I'm interested in information and personal experiences of benefits (if any) I can expect to see by correcting my vitamin D levels?

- Having started the supplements 2 days ago, I have had extremely intense nightmares each night. Is this normal, and any tips on avoiding!?

-I seem to feel very on-edge and anhedonic shortly after taking them, it makes it impossible to relax. It seems to take most of the day to gradually decrease to a manageable level... again any advice welcome to reduce this!

-any other Vitamin D advice or stories welcome!

Thanks
 

pamojja

Senior Member
Messages
2,384
Location
Austria
Vitamin D3 at high doses gave me initially some more energy. However, I needed in average 8.000 IU for the last 8 years to keep mine up in a seemingly more advantageous range, in average had 60 ng/ml serum 25(OH)D3 (30-100 range).

Disease-Incidence-Prevention-by-25(OH)D-Level.jpg


Note the title of this graphic is a bit misleading. There weren't any randomized double-blind studies. Just an association of serum levels with incidence, which doesn't prove causation.

Higher vitamin D3 will use up many cofactors. Like Vitamin A and K2. I had to remedy a severe Magnesium deficiency after starting D3.
 
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Neunistiva

Senior Member
Messages
442
Hi. I had my levels tested and I was at 20 nmol/L. I am bedridden and get no sun. but I eat plenty of fish and eggs. Go figure.

I have ME/CFS, and I never got tested before for vitamin D levels. However I live in a very sunny region so I am sure before I got stuck indoors that it was fine. I don't think my ME/CFS is connected with vitamin D in any way. However, I do hope to feel at least a bit better after supplementing, 20 nmol/L is really low.

as I have spent a fair amount of time in the sun in the weeks prior to this test.

It is possible to be in the sun and not produce any vitamin D. It all depends on the angle of the sun, time of the year, air pollution, whether you are wearing sunscreeen, your skin color, etc. I learned a lot about vitamin D from this http://www.mayoclinicproceedings.org/article/S0025-6196(13)00404-7/fulltext

I am taking 1000IU in a form of drops and don't have any side effects.
 

pamojja

Senior Member
Messages
2,384
Location
Austria
It is possible to be in the sun and not produce any vitamin D. It all depends on the angle of the sun, time of the year, air pollution, whether you are wearing sunscreeen, your skin color, etc.

In fact, the lowest I ever measured was after 6 week on a South-Indian beach with at least 2 hours sunbathing each day, I didn't use suncream since I don't get burned and thought the sun would suffice: 27 ng/ml, to convert to mmol/l multiply by 2,49.
 

jason30

Senior Member
Messages
513
Location
Europe
Higher vitamin D3 will use up many cofactors. Like Vitamin A and K2. I had to remedy a severe Magnesium deficiency after starting D3.

Yes, Vitamin D, Calcium, magnesium and k2 are synergists.
K2 helps with the absorption of vitamin D, so you mostly see those 2 in a bottle.

When you take vitamin d and get side effects, the first thing you need to check is magnesium! They even say that you always need to take vitamin d and magnesium together.
 

Johnskip

Senior Member
Messages
141
Yes, Vitamin D, Calcium, magnesium and k2 are synergists.
K2 helps with the absorption of vitamin D, so you mostly see those 2 in a bottle.

When you take vitamin d and get side effects, the first thing you need to check is magnesium! They even say that you always need to take vitamin d and magnesium together.
more magnesium will bring up vitamin d with b Co factors
 

charles shepherd

Senior Member
Messages
2,239
Some basic information and useful links from the MEA on vitamin D deficiency: symptoms, investigation, prevention and treatment:

Vitamin D and ME/CFS
Link to recent BBC news item on prevention:
http://www.bbc.co.uk/news/health-36846894 >>>>

Everyone should consider taking vitamin D supplements in autumn and winter, public health advice in England and Wales says.

It comes as a government commissioned report sets the recommended levels at 10 micrograms of the vitamin a day.

But officials are concerned this may not be achievable through diet alone, particularly when sunlight, which helps in vitamin D production, is scarce.

Low vitamin D levels can lead to brittle bones and rickets in children.

Dr Charles Shepherd comment on the BBC item:

We often flag up the fact that people with ME/CFS, especially those who are partially or totally housebound, are at increased risk of developing vitamin D deficiency - mainly due to the lack of exposure to sunlight (which helps with vitamin D production) but this may also be compounded due to lack of foods that are good sources of vitamin D in their diet (i.e. oily fish, eggs, fortified breakfast cereals).

This new advice from Public Health England, which recommends that everyone should consider taking a vitamin D supplement during the autumn and winter months, is therefore very relevant - because vitamin D is essential for good muscle and bone health. So any deficiency of vitamin D in ME/CFS could add to the problems of muscle weakness that is already occurring.

On a personal basis, I will now be following this advice and taking a vitamin D supplement during the autumn and winter months.

Link to the most recent MEA statement on vitamin D and ME/CFS and our June 2016 MEA website poll on the subject:

http://www.meassociation.org.uk/201...-in-this-months-mea-website-poll-1-june-2016/

All aspects of vitamin D, and vitamin D deficiency, are covered in the MEA information leaflet on vitamin D:

http://www.meassociation.org.uk/shop/management-leaflets/vitamin-d/

Summary of key points relating to the vitamin D (25-hydroxyvitamin D) blood test:

The (UK) National Osteoporosis society (NOS) guidelines (UK, 2013) and the Institute of Medicine (US) classify vitamin D results as follows:

  • 25-hydroxyvitamin D of less than 30 nmol/L is deficient
  • 25-hydroxyvitamin D of 30-50 nmol/L may be inadequate in some people
  • 25-hydroxyvitamin D of greater than 50 nmol/L is sufficient for almost the whole population.
Low blood levels of 25-hydroxyvitamin D may mean that you are not getting enough exposure to sunlight or enough vitamin D in your food to meet your body's demand or that there is a problem with its absorption from the intestines.

Occasionally, drugs used to treat seizures, particularly phenytoin (epanutin), can interfere with the liver's production of 25-hydroxyvitamin D.

High levels of 25- hydroxyvitamin D usually reflect excess supplementation from vitamin pills or other nutritional supplements.

More info on the vitamin D blood test: http://labtestsonline.org.uk/understanding/analytes/vitamin-d/tab/glance/


Summary of research into vitamin D and ME/CFS from the MEA purple book:

Consider vitamin D deficiency in adults with restrictive diets and lack of access to sunlight.

A retrospective study of serum 25-OH (hydroxy) vitamin D levels in 221 ME/CFS patients found moderate to severe suboptimal levels, with a mean level of 44.4nmol/l (Berkovitz et al 2009).

Vitamin D deficiency often goes unrecognised and can cause bone or muscle pain and muscle weakness. It can co-exist with ME/CFS.

Levels < 25nmol/ml may be associated with symptoms.

NB: Low serum calcium and phosphate and an elevated alkaline phosphatase are consistent with osteomalacia.


Dr Charles Shepherd
Hon Medical Adviser, MEA
 

Johnskip

Senior Member
Messages
141
yes you need vitamin d but if you can and I know some of us can't but I think getting vitamin d through sun foods and cod liver oil is a better way than supplementation
 

Johnskip

Senior Member
Messages
141
I'm not turning people away people do what they want and what they believe I just suggest like doing your own research of the magnesium advocacy group by Morley Robbins like I did and this is what I believe in after supplementing d with low d results for a decade and all it was was toxic!!!!@
 

Neunistiva

Senior Member
Messages
442
@charles shepherd Are those units maybe supposed to be ng/mL? U.S. uses ng/mL and Europe uses nmol/L where under 75 is defficient.

We often flag up the fact that people with ME/CFS, especially those who are partially or totally housebound, are at increased risk of developing vitamin D deficiency - mainly due to the lack of exposure to sunlight (which helps with vitamin D production) but this may also be compounded due to lack of foods that are good sources of vitamin D in their diet (i.e. oily fish, eggs, fortified breakfast cereals).

I got tested recently and my levels of 25-hydroxyvitamin D were 20 nmol/L! (less than 75 nmol/L is deficient). I am bedridden and light sensitive, but I eat oily fish for at least 8 meals per week and I also eat eggs (not sure how many on average). I didn't eat any foods that are fortified with vitamin D, but I did take supplements of 400IU but obviously it wasn't enough.

I wholeheartedly recommend any housebound or bedridden patient to get tested, it's a simple blood test.

yes you need vitamin d but if you can and I know some of us can't but I think getting vitamin d through sun foods and cod liver oil is a better way than supplementation

Cod liver oil is a supplement. As you said, most of us can't get enough sun and research has found most people can't get vitamin D from food, and that was my experience as well:

[URL='http://www.mayoclinicproceedings.org/article/S0025-6196(13)00404-7/fulltext']Vitamin D for Health: A Global Perspective[/URL] said:
Very few foods naturally contain vitamin D; examples of foods with ample vitamin D stores include wild-caught salmon and UV-exposed mushrooms.7 Foods fortified with vitamin D usually contain 100 IU per serving. An analysis of the vitamin D intake of children and adults in the United States revealed that they were unable to achieve the RDA for vitamin D from any dietary sources.

I don't think you should turn people away from supplements without any objective reasons.
 

Johnskip

Senior Member
Messages
141
we are in this together and obviously no one is enjoying our condition I am here to HELP that's all from previous real life experience
 

duncan

Senior Member
Messages
2,240
We often flag up the fact that people with ME/CFS, especially those who are partially or totally housebound, are at increased risk of developing vitamin D deficiency - mainly due to the lack of exposure to sunlight (which helps with vitamin D production) but this may also be compounded due to lack of foods that are good sources of vitamin D in their diet (i.e. oily fish, eggs, fortified breakfast cereals).

What makes you assume that the vitamin D deficiency seen in so many pwME is due to these factors? My understanding is that persistent infections can reduce levels as well. If the latter is true, perhaps any sustained immune dysfunction or autoimmune issue might be at play.

I also wonder about the effect of vitamin D supplementation, i.e., are we just raising our lab values with no true impact on our bodies?
 

Neunistiva

Senior Member
Messages
442
Obviously not all European countries, like mine.
You missed my point, I was talking about numbers denoting sufficient and deficient being mixed up. Geographical location is irrelevant.

I also wonder about the effect of vitamin D supplementation, i.e., are we just raising our lab values with no true impact on our bodies?

Supplementation of vitamin D absorbes the same way as food does (some supplements, like B12, actually have much better absorption that food) . "Lab value" is how much viramin D is in your blood, how could that have no impact on your body?

Deficient vitamin D levels have been connected with adverse health outcomes so it's a pretty clear-cut case in favor of supplementation

http://www.mayoclinicproceedings.org/article/S0025-6196(13)00404-7/fulltext'
 

duncan

Senior Member
Messages
2,240
"Lab value" is how much vitamin D is in your blood, how could that have no impact on your body?
The same way other vitamins (of course D is not a true vitamin) can get into your system and just get peed out. The same way abx can be in your blood and not reach a targeted organ. Or perhaps it's a synthesis issue - I don't know. I, however, DO know that simply because your blood work demonstrates the presence of a foreign substance, that does not necessarily mean that substance is doing the job it is supposed to do.

I can't subscribe to the purported cause of D deficiency in us - it reminds me of the old claims that MS is due to lack of sunshine. I just don't know if there is enough data to comfortably make that default assumption. There is also the further consideration that chronic disease sufferers also report low levels of Vitamin D. It's easy to think it simply boils down to not getting out enough - but I dunno. I know that is not the case for me, anecdote that I am.

We have several oddities in many pwME I am not sure of the reasoning for. Abnormal Co2 levels, for instance. We are told that could be due to hyperventilation. I've personally had three well-regarded ME/CFS experts suggest that to me as an explanation for my Co2 levels. Bull. That's like saying our abnormal BP rates or HR when we stand are due to stress - a nonsensical claim that many cardios still make despite evolving insight into ANS dysfunction.

btw, having said all that, I still take D supplements, because, eh, who knows?
 
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Johnskip

Senior Member
Messages
141
The same way other vitamins (of course D is not a true vitamin) can get into your system and just get peed out. The same way abx can be in your blood and not reach a targeted organ. Or perhaps it's a synthesis issue - I don't know. I, however, DO know that simply because your blood work demonstrates the presence of a foreign substance, that does not necessarily mean that substance is doing the job it is supposed to do.

I also don't subscribe to the purported cause of D deficiency in us - it may be akin to claiming MS is due to lack of sunshine.

We have several oddities in many pwME I am not sure of the reasoning for. Abnormal Co2 levels, for instance. We are told that could be due to hyperventilation. Bull. That's like saying our abnormal BP rates or HR when we stand are due to stress - a nonsensical claim that many cardios still make.
vitamin d is a hormone
 

Neunistiva

Senior Member
Messages
442
The same way other vitamins (of course D is not a true vitamin) can get into your system and just get peed out. The same way abx can be in your blood and not reach a targeted organ. Or perhaps it's a synthesis issue - I don't know. I, however, DO know that simply because your blood work demonstrates the presence of a foreign substance, that does not necessarily mean that substance is doing the job it is supposed to do.

If it goes from your stomach into your kidneys and gets peed out, it didn't really end up in your blood, did it?

Look, I am no expert, but I did read the metanalysis I linked, and I suggest you do the same. Vitamin D supplements were shown to increase blood levels. Increased blood levels were connected with positive health outcomes. Too high or too low blood levels were connected with negative health outcomes.

It seems pretty clear cut to me.
 

duncan

Senior Member
Messages
2,240
Perhaps you are correct, @Neunistiva . As I said, I take supplements in the hopes it does make a difference. I personally have not seen any, but I am one data point.

But there is no way anyone can sway me into believing the primary cause of our deficiency is lack of sunshine. I think it runs far deeper than that.
 

PennyIA

Senior Member
Messages
728
Location
Iowa
I would have to state that I've tested VERY VERY low on Vitamin D and taken rx for it for years, and while my test values go up? The symptoms aren't improved. I also have a doctor who stated that Vitamin D3 Oil is more 'bio-available' whatever that meant, and it raises my levels better than the gel cap I get from the pharmacy.

Still not convinced I see an energy improvement or otherwise while on them. Though, given the link to magnesium and the fact that I can't tolerate magnesium supplements but NEED espom salt baths to make my life manageable (go through around 120 pounds of it a year); my issue might be that I'm lacking enough of it as a co-factor, but I haven't found a way to supplement appropriately in a way I can tolerate (well, besides the baths, which is probably insufficient).