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Hospital wouldn't test me for vitamin D

(53 Posts)
Karmaone Mon 11-May-15 20:37:12

I asked my doctor to test me for vitamin D, iron, thyroid etc. When I rang for results, I was told that they hadn't tested my vit D levels as bone marker results were normal. Can someone explain this to me please! Thanks.

TenerifeSea Mon 11-May-15 22:00:02

How strange. You can have low vitamin D independently of any bone disease. Are you having any particular symptoms?

duende Mon 11-May-15 22:03:14

my GP told me that even if she requests a vit d test, the hospital can still refuse it. apparently it's an expensive test and they tend to only do it calcium levels are low (or something!).

If you have good reasons to think you may be deficient, could you perhaps have this one test done privately?

Karmaone Mon 11-May-15 23:12:48

Thanks both. I do have some of the symptoms like aching joints and tiredness. This could be due to menopause perhaps. I know I don't get enough exposure to the sun and wanted it done. How annoying!

FiftyShadesOfSporn Tue 12-May-15 06:40:06

You can get a private test done through www.vitamindtest.org.uk/index.html

Ni idea how reputable they are; appear to be associated with City Hospital, Birmingham.

I am considering this.

Bettertobehealthy Tue 12-May-15 10:52:11

Quick self test for Vitamin D deficiency.

If you have had a low vitamin d level for a long time , it can affect your bones, if you lose calcium. The condition is called osteomalacia. The symptoms include painful bones. This condition is very often mis-diagnosed as fibromyalgia.

A quick check would be to press on your sternum ( breast bone ) with a moderate force. Does it feel tender/painful. As if you have injured that area a few days ago? Try the same thing again, on the front of your shin bone about 3 - 4 inches below your knee. Again with a moderate force , a few pounds, you should not feel pain. If you do feel pain in either of these checks then a vitamin d test is very advisable.

The symptoms of osteomalacia , are due to the demineralisation of the bone , causing the bone protein matrix to expand pressing onto the bone outer layer.

IF you are not in the extreme deficiency stage, i.e. with no osteomalacia, it is still a great idea to get your vitamin d level checked. Low levels can bring on all kinds of symptoms, including greater susceptibilty to infections, as Vitamin D modulates your immune system. In fact vitamin d receptors are found on practically every single cell in your body. Vitamin D, (when activated by your body) acts as a steroid hormone , and facilitates gene expression and regulation. Low vitamin d can lead to auto immune diseases, whereby immune cells are not regulated properly and attack your own body.

The vitamindtest.org website is a great way to get a blood spot test. It costs £ 28 , and can be bought over the phone by credit card. It is an NHS path lab, so no worries about its authenticity.

Bear in mind that their result will advise that a level of 50nmol/Litre is sufficient. This is not necessarily so, other well respected organisations world wide consider a level of 75-80 to be the minimum level that you need for optimum calcium absorption.

Hope this helps. BTBH

FiftyShadesOfSporn Tue 12-May-15 11:10:48

Would it be very irresponsible to take a supplement anyway?

FiftyShadesOfSporn Tue 12-May-15 11:11:06

I mean, without the test?

Bettertobehealthy Tue 12-May-15 12:44:49

Fifty

There should be absolutely no problem taking a supplement without the test. Just so you know, the I.O.M.( Institute of medicine in USA) have recently looked at Vit D safety and supplementation levels. Their tolerable intake level is up to 4000 IU per day. Their NOAL (no adverse event level) is 10,000 IU per day. However no toxicity has ever been found below 30,000 I U per day for adults.

Most people respond to supplement (make sure it is D3 ) by raising their blood level by about 25 nmol/L per 1000 IU of daily dose. If you are short of Vit D then a few thousand units per day would be fine. Do not be tempted to dose weekly , with ultra high doses , as it is not so beneficial to your body dosing that way. Daily is much preferred. After all that is the way we naturally got vitamin D , for millions of years, out in the sun , daily.

Throughout evolution , and even now, humans living an ancestral lifestlyle have blood levels of 120 - 140 nmol/Litre. We here in the UK, keeping indoors, with our high latitude cannot make much , and so, many people are deficient, usually 30 - 50 ish. nmol/L. The current guidlines suggest that 50 is normal, that however is only because that is around the average for people here, the real normal , is that level we evolved to have over millions of years. Other primate species have those levels as well.

It will take several months to have an effect on your bone ( if that is your problem ). Physiologically we require about 70 IU per day per kilogram of body weight. That would be from all sources, including sun, food and supplements. It would be a good thing to get your level checked though. At this time of year , you will be close to your minimum, after a winter of no sun. It will give you an idea how much to take, over the longer term. If your level is very low, then you could consider a loading dose , ie. double your maintenance dose , for a few weeks daily. Although that would be difficult to do , without knowing your current level.

The contra indications of high dose , would be sarcoidosis or granulomatosis disease , if you have that, then see a doctor before taking anything. They are very very rare though.

BTBH

FiftyShadesOfSporn Tue 12-May-15 13:22:22

Thank you! I shall give it a go

flowers

grimbletart Tue 12-May-15 13:33:28

OP: I've had no trouble getting a Vit. D test. I consulted a trichologist for hair loss (I'd already had standard medical tests e.g. thyroid etc) all came back normal.

She suggested a ferritin and Vit D test. I knew the Vit D test was expensive, so when I went back to my GP I said I would understand if he thought that was irrelevant to hair loss and would be wasting NHS resources.

He said "Absolutely not. If you need a Vit D test you need it." It subsequently showed a level of 31 (insufficiency). Under 30 would have been really depleted. I am receiving Vit D currently so too soon to know if it affects the hair loss. A repeat test showed 37.6. I will be having a third test in six months.

The point I'm making though is I had no Vit D insufficiency symptoms at all, nor do I get tenderness on the sternum or shin on Better's test. I had no idea there was anything wrong, yet the GP didn't hesitate to test me on the recommendation of the trichologist and despite all other blood tests being OK.

So they really should test you. Apparently around half of us in the northern hemisphere are low on Vit. D anyway.

RawCoconutMacaroon Tue 12-May-15 13:45:53

Ouch! Quite hideous pain in sternum and shin doing Betters test. I used to have a lot of bone pain but started taking 10,000 iu D3, 5methylfolate and a particular form of B12 after genetic testing (private) showed methylation defects and low ability to process both vit D and b12.

Gp dismissive for years, standard tests normal range, thyroid "normal" and antigen tests refused. Felt loads better within 3 days of starting, I've been taking them for about 2 months now... Better, do you know how long it might take serum vit D levels to reach the maximum level they are going to reach from supplements? I do make the effort to get sun exposure regularly without sun cream but that's not easy a lot of the time in the far north!

DayLillie Tue 12-May-15 13:49:18

I got results back for vit D after asking my GP for a test for arthritis (menopausal with sore joints like you). Everything else was ok.

The practice nurse thought it was worth asking about an arthritis test, because it was my upper back and neck that were hurting most.

My result was 39, last October after summer, and I have been taking 25ug per day since. I felt different after 6 weeks, but if I stop, the aching comes back and I feel unhappy and lack-lustre. I was surprised to find that vit D is also part of the thyroxin pathway in cells, so deficiency can lead to mild hypothyroid symptoms. I had a test for this years ago which came back ok - wish I had known about the vit D then!

When I run out of 25ug, I am going to get some 10ug permanently.

RawCoconutMacaroon Tue 12-May-15 13:53:04

Better, ah I see you answered that question already, sorry I skipped over your last post ��

Bettertobehealthy Tue 12-May-15 14:13:11

Coco,

It is difficult to say if you have absorption problems. However an average response to say 1000 IU , ( i.e 25micrograms ) will be to raise your blood level by about 25 nmol/L after about 2 to 3 months. People do have a variation in response though. Up to 6 times variability , that is why is is a good idea to have your blood level checked and get it up to where it needs to be . If you have difficulty absorbing , you could try sublingual , or sunbed. The sunbed should have UVB in the output, don't burn, definately not !. A half MED ( minimal erythemal dose ) a couple of times a week should will provide the vitamin , as it converts the cholesterol precursor in your skin to Vitamin D.

If you are taking 10,000 then the body response is modified as it rises , each additional unit has less and less effect. So as I said before there is a 6 time variability in response, however after three months of taking your dose , you should have reached equilibrium, and that is where you are likely to stay , if you continue with that dose. On AVERAGE , with that dose you should reach at least 160 - 180 nmol/L possibly a bit more. Your own personal response may well be different.

RawCoconutMacaroon Tue 12-May-15 15:05:54

Thank you for that! Very useful. Bone pain (in legs when walking up steps etc), has gone, so I was surprised at it being sore to press the shin/sternum.

Will certainly look at private tests to keep an eye on what's going on.

HellKitty Tue 12-May-15 15:31:00

How strange I was about to start a thread. I thought I had Fibromyalgia - might still have it - but my GP ran numerous blood tests. All normal apart from Vitamin D, it showed 12. After reading above that 30 is depleted it's a wonder I'm still walking shock

I'm on 20000 units 3 times a week as of today, are sun beds ok?

Bettertobehealthy Tue 12-May-15 16:37:16

Daylillie,

If your test was 39 at the end of summer, when your level would have been at the maximum, then by the end of winter your level would have probably halved, since the half life of vitamin d in the blood is around 60 days. i.e.Without your supplement. It is great that you have got a grip on it . Just remember that 25 micrograms is just 1000 IU of Vit D. and can be expected to raise your level just 25 nmol/L only if you continue to take that dose for a long time. I would not cut the dose down to 10 microgram, ( only 400 IU ) when you know from your test that you need more , also from how you feel.

I'll tell you about a recent medical research paper, written by one of the worlds foremost experts in Osteoporosis and vitamin D research. Prof. Heaney of Creighton Univ. Nebraska. He and his colleagues tested 1100 post menopausal women , in a randomised , placebo controlled trial. With supplements, they raised these ladies blood level to about 100nmol/L. They also gave them calcium . It turned out that those that received the Vitamin D and calcium , had a 50 % less all cause mortality. Including breast, colon cancers etc. over a period of 5 years. This trial was conducted upon rural women in farming communities, their base level of vit d was around 75 nmol/L. By giving them 1100 IU , they raised their level to about 100. With dramatic results. If the results were calculated after the first year, when prior disease may have already been established, in other words allowing 1 year for the supplements to kick in , then the results were even better, that is 77% reduction in all cause mortality.
In other words , keep your Vit D levels up, and eat plenty of calcium rich foods ! Including greens/ dark greens.

BTBH

DayLillie Tue 12-May-15 16:41:40

12!!!! Wow!!

I go out and sit in the sun on my sheltered patio if it is out, for 20 minutes. It is getting stronger now, so make the most of it!

I would look a foods with vit D in - sardines, oily fish, whole milk, eggs.

TenerifeSea Tue 12-May-15 16:58:12

Mine was 9 a few years ago. I felt like crap. It's dipped down again but I'm not sure how low as I haven't seen the results.

DayLillie Tue 12-May-15 16:59:33

Bettertobehealthy - I suspect I have had levels bumping along from low to just about acceptable for years. I had a thyroid test over 10 years ago when I was tired and achy and the doctor said it was depression. In fact I have been TAAT for years.

Your figures are interesting. I will stay on the 25ug for now, and I am doing what I can with food and sunbathing for short periods of time, as these are supposed to be more effective, when you can get them! Over winter, I will definitely be on 25ug.

HellKitty Tue 12-May-15 17:08:50

9?! I thought 12 was bad!
It's made DP want to hurry up and move asap now which is a good thing. Our (rented) garden is overlooked and blocked by neighbours houses and a conservatory so we just don't get much light at all. I was reading about bouts of psychosis on levels of 13 so I'm hoping my vit D deficiency is causing my random mood swings confused

Bettertobehealthy Tue 12-May-15 17:47:15

HellKit,

it is great that something is being done now ! A level of 12 was very , very low. Keep a close eye on your blood level.

It is a multi part question , when you ask , are sunbeds ok?

First .... the sunbed that you use ,it must be emitting some UVB radiation, not solely UVA , which many cosmetic only sunbeds operate on. It is UVB that produces Vit D in your skin.

Second .... what skin type are you. How long can you spend in the sun, without burning. Never ever burn, ever !! Try to aim for half the MED. ( minimal erythemal dose ). That means stay only half the time that would have produced a slight reddening of the skin the following morning. Everybody is different you see, there is no single answer. dark or light skin , sensitive or not .

Thirdly... actual sunshine is most likely the best. That is what we evolved to cope with , that is what our skin "knows" . If you are white , don't go and bake for hours on a beach in a country where the sun is overly strong for white skin. Sunshine in the UK, is relatively weak. That is why the indiginous population are white skinned.It is an evolutionary response. We need vitamin D , and pigmented skin acts as a sunscreen, reducing the Vit D response. Darker skin needs longer exposure.

So ..... yes , some sunbeds can help build your Vitamin D level, especially if you don't have access to sunshine . In fact , UVB and UVA light on your skin produces several other compounds that may have other physiological effects. Beta-endorphins ..... a natural painkiller / anti -depressant. Also nitric oxide , a compound which affects the cardio-vasuclar system , reducing blood pressure. It is well known that sunshine makes us feel better, perhaps that is why !

If you do have osteomalacia, and not fibromyalgia then take care to consume sufficient protein , which will help rebuild bones, along with sufficient calcium and Vit D . i.e at least 1.2 grams per day of protein per Kg of your bodyweight.



BTBH

Karmaone Tue 12-May-15 18:56:02

Better and everyone thanks for your replies. I really want my doctor to agree to a test so will ask again. If my bone marker results came back as normal, would that mean I definitely don't have low vital D. This is the bit I don't understand.

Bettertobehealthy Tue 12-May-15 20:24:59

Karmaone,

Bone requires protein (50% by weight), calcium, phosphorous,magnesium , boron. Also your endocrine system ( hormones ) instruct your body to build, break down and rebuild bones in a continuous cycle. One of the hormones involved is Vitamin D, which enables regulation of the amount of calcium you absorb from your diet. In the event that you have low vitamin d , then you may not be able to absorb more that 17% (say) of the calcium you ingest. If you consume plenty of calcium, then the fraction you are able to absorb may equal about 200mg, which is roughly what you lose , on a daily basis. So you may have low vitamin D , but still get enough calcium. The chances of problems arising ,grow, the lower your level .On the other hand, the higher your level of Vit D , the greater your possibility of absorbing a higher percentage of the calcium that you do consume.Vitamin D allows the regulation of absorbtion.
If you are tired, with aching bones, especially if your lower back or groin area hurts after standing for long periods, then it is definately worth checking your vitamin d level. You have nothing to lose, and everything to gain. My advice would be to make sure you get your level up to at least what the American Assoc. of Endocrinologists recommend for bone health. That is 75-80 nmol/L. From my previous posts you will see that I think that even higher levels are appropriate for overall health. Your body requires approx 70 IU per kilogram of bodyweight from all sources, including food, supplements and sunlight. If you eat plenty of meat from animals that have been kept outside, or supplemented, then you will likely be consuming between 1000 and 2000 IU. of Vitamin D and its metabolites. Even if bone results are normal, you could still have low vitamin D. Try vitamindtest.org website if your doctor won't cooperate ! It is an NHS laboratory. They charge £28 per test. Good Luck.

BTBH

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