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This popped up in my inbox today - it is worth reading and considering how much vit D YOU are getting.
Vitamin D: why you probably need rather more than... - PMRGCAuk
Vitamin D: why you probably need rather more than you are taking!
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I can never remember, perhaps you know, the measurements used in the US (where I assume this article originated) and in the UK for Vitamin D differ do they not? And how can we compare? Vitamin D is measured in nmol/l in Canada, where the optimum range is said to be 75-150 (or sometimes higher) nmol.
"The two most commonly reported units of measurement are ng/mL and nmol/L, where 1 ng/mL = 2.496 nmol/L. The SI unit for vitamin D is nmol/L"
so there is a factor of 2.5 for the two figures. I'm not sure it is a US/UK differentiation but a more modern use of units.
So you'd need to multiply the figures in the article to get the equivalent measurement? So between something like 125-250 nmol? Guess I didn't need to be worried about being at 169 then!
I was taking 1400UI a day since diagnosis May/18. I also am a huge sum worshipper and with the pool spend time outside everyday from June-Sept. Had my vit D level checked last Aug and it was only 95. Not great given the range here in Canada (75-150).
I’ve decided for the winter months (Sept-June especially, to take 2400 UI per day (an additional 1000) and see if this makes a difference when I get tested again in Aug.
You must be so pleased to be at 169!
I was at 169 in 2015, and was told this was too high. I reduced the level by giving up Vitamin D capsules for an entire winter, got it down to what they call "low normal" (maybe 80?) then since have taken 1 capsule (1000 IU) per day. Plus what's in my calcium supplement and the cup of milk which is about the total of what I drink in my tea each day. It was measured a third time and was considered "optimum" but in light of PMRpro's post I do wonder if I should get it checked again and make sure it is closer to 150 than 120 or 130 or whatever it was back in 2016.
See my reply to Marijo below.
Yes...just read the rest of the responses, and see 169 is high and not ideal. Maintaining somewhere in the upper range is what I’m attempting. I too get some of my vit d from a vitality mix that I snack on.
Well, it may not, in light of the recent revelations, be too high. I had heard that 200 was considered toxic, and 150 was considered the high end of the normal range, but I wonder if some of the confusion comes from the fact that D2 is more likely to be toxic than D3, and I think for a long time the supplements were D2, although I don't think it's been used for quite a long time. Quite an interesting topic!
How interesting. I don’t even think I was prescribed that much, temporarily, having been diagnosed as Vit D deficient. I can imagine the battle if I asked for more. I experience all the symptoms of deficiency.
Then get to the chemist or H&B and buy some! It isn't particularly expensive.
• in reply toPMRpro
I've been taking Vit D from H&B for years it's a 10 ug. But we must all remember to take K2 with it so the calcium gets to the bones and teeth. I never realised taking K2 is important until my friend who is a nutritionist informed me of this. On diagnosis I was prescribed the box of Adcal-D3 their value is 1500 mg of calcium carbonate (equivalent to 600 mg calcium) and 400 I.U colecalciferol (equivalent to 10 micrograms of D3) I still haven't started the Alendronic Acid to prevent Osteoporosis yet as hoping after Dexa scan I find my bones don't need them. One side affect from Alendronic is they can make our muscles ache, so if I take these, and with tapering steroids I won't know which drug is causing the muscle ache. When I see my GP on Thursday I'm going to show him your tapering method PMRpro.
Did you get a test , what were your figures?
Yes , the battle you are imaging does happen , as I know , especially as the system works in the assumption that if you take the Vitamin D supplement given , or an increased dose if deficiency is found despite standard supplements , that it will definitely improve and doesn't need monitoring.
I have had my dose increased over the years , and had temporary increases of high doses when annual results came back, but I was always concerned of continuing to take more after that which I bought myself because Vitamin D toxicity can also happen.
I have started taking an extra supplement on alternate days bought by me after being given higher doses for a few months this time around , but then again , because I finally now have test proof that I need it. I can correlate increases in Pain and Stiffness and skin and hair problems that gradually grow over a month or two with the decrease in Vitamin D supplements I have been given . I adapt my dose depending on the Season and how much I am able to get outdoors in the Sun.
It also makes a difference to my palpitations and breathlessness and my bad Cholesterol results also show increases or decreases linked to decreases in my Vitamin D.
It was 4 years ago Bee, I probably didn’t ask. I remember feeling validated, something was actually wrong. I am now prescribed 800u and I worry about toxicity in self prescribing too. GP’s haven’t really caught up with the need for supplements. The script says “ eat a balanced diet” and all will be well. That’s not the whole story as we know. My Vit D box says 800u. Is that different to IU?
In the case of vit D eating a balanced diet isn't any use - you would need a massive mushroom omelette and half a pound of salmon to get much from diet as vit D is in so few foods.
Like bone density, only measuring it will help. jinasc was low in vit D and given the standard course of high dose vit D and it looked OK. A few months later the symptoms returned - vit D deficient again. Another high dose course, the level came up and now at least 1000 IU a day.
You have to know the numbers - as so often.
I will ask. With those symptoms you’d think it was a flare.
Hi Mate
Para 2 says 4,000-5,000 IU a day - me being 'mrs no nowt', wonders if the 25UG is the same as IU. If not can you translate it.
As you know the 40.000 put me back on track and since then every day 25ug. Now I am wondering..........the last test (and who knows how they did it) - if the UG does not equate,
Then next test I will ask for “25(OH)D” vitamin D blood test. This inexpensive test determines your vitamin D level and defines your need for supplemental vitamin D.
Once you know your numbers, you can talk to your doctor about the appropriate level of vitamin D supplementation in the form of D3.
"Niggle" is gonna love me once again 🤔🤷🤷
The units for blood levels and the units for dose are totally different.
25ug vit D is 1000 IU
Is that what you want to know?
I have been remiss taking regular Adcal for a few weeks... Trying to get new drugs into the rotation.... I will be purrrrchasing vitd3 by itself to boost it above 200iu the ad Al contains.
Yes, I read this today....my sister with RA hit rock bottom several months ago....extremely tired, confused....just so different to how she normally is. I told her to get blood tests....result for VitD, around 40....receptionist said "normal"....I got her to the doctor, and said is this normal?....well she said, it's low......I said it's not in the range is it!!.....she told my sister who is vegetarian...(doesn't eat fish)..she must always take a minimum of 25ug....3 weeks later, couldn't believe the difference....
Just wanted to give an example how deficiency can creep up on us...and put it down to our chronic illnesses.....which my sister did....
People with autoimmune disorders in general tend to have low levels. Cause or effect? Who knows ...
It's another one of those bit of both , chicken and egg , things of all these Chronic Auto.... Illnesses I think , isn't it .
Probably ...
I take Nature's Best Vitamin D3 1000 iu. The label says ''Super strength one-a-day''. It advises one capsule of 1000 iu per day and says not to exceed the recommended dose. However this article seems to suggest that I should be taking 4 or 5 capsules per day. I am feeling rather unwell at the moment - no energy, extreme fatigue, feeling I have a permanent dose of flu etc - and wonder if I should up the dose despite what it says on the label. But I have some reservations, having heard that it's quite easy to overdose on fat soluble vitamins. Can anybody say what is actually a safe dose of Vitamin D?
When I started pred my doctor told me to double the 1000 IU I'd been taking for years. My D level wasn't tested at the time. Later I got it done (I have sarcoidosis and this can cause the body to activate too much Vitamin D) and was told the level was 169 nmol, which as it was above 150 was considered high. I gave up all the extra D for the winter, still got it in my calcium supplements but much less, and level went down to 80 by spring. (Had to get that second test done privately as medicare won't cover more than one test a year.) Then I started taking the single capsule. Can't remember what the result was after about six months, but it was somewhere in the low 100s, maybe 130, and so I've stuck with 1 capsule ever since. Now I'd better get retested and rethink this whole exercise because maybe the 2000 IU was best after all!
According to my milk carton I get 45% of my daily need for Vitamin D from one cup of milk. But it doesn't say what number it's 45% of!
Just looked it up. By law 100 IU must be added per cup. Well that isn't much at all, nowhere near 45% of even the old recommendations. Maybe just enough to prevent rickets....
Is your milk fortified then?
Yes, it has been the law for a very long time. There seems, on further investigation, to be a discrepancy about the actual amount, at least among internet sources, as according to one article by law it should provide 400 IU per 250 ml serving. Other milk products are not fortified, but may contain Vitamin D if they are using fortified milk to make it, yoghurt and such.
It does depend to some extent where you live. North of Turin in Europe and Atlanta in the US you are not in a position to produce vit D from sunlight in the winter. So your oral dose can be higher without any concern, you use probably 7000 IU per day on living, obtained from your body stores. And once THEY are depleted it really does take a lot to replace them - it is a big black hole.
How does that compere with the dose in Adcal-D3 tablets?
One tablet has 400 IU vit D3
Okay. I'm going to up my dose - I'm well north of Turin and, although the weather is mild, the sky is currently grim and grey! I suppose the manufacturers ''cover themselves'' by their stern warning about taking more than one capsule per day, just in case somebody does go mad and overdose.
I take the 1000 iu vitamin D from Natures Best from when the first signs of SAD start to appear around September until about May. I've never had my levels tested though. After reading this maybe I'll ask if I can.
Personally I think everyone should have a Vitamin D test when they present with chronic illness which needs longterm treatment.
I haven't seen my GP for ages, I think I'm overdue for a visit!
Agreed. My GP does an annual Vit D test, dexascan scan and wants to incorporate eye exam.
If only Heron......... my GP refused my request for the test ........ "totally unnecessary, no shortages in this day and age". Admittedly this was over a year ago, perhaps she'll have more up to date info now. I'll try again when I next see her, she's usually so knowledgeable and full of common sense which is why I accepted her statement.
It is possible to have it done yourself through a lab and it's not terribly expensive. It really is odd why "they" are so reluctant to run this particular test for at-risk people. It probably is an unnecessary cost for a healthy young or middle aged person.
No - white children are being seen in hospitals in the UK with rickets ...
I'm pretty sure it was to deal with rickets that led to liquid milk being fortified in both the US and Canada. I think the US is now fortifying other foods, like orange juice.
There was a serious problem in Europe with fortified foods which resulted in babies being over dosed so it was stopped.
I had a vitamin D,25-OH,total,IA test and it showed my number to be 35. Range was 30-100 as normal range. Seems low. Should I supplement with a vitamin D and how much?
I personally would prefer to have my level more towards the top end of the range not the bottom.
Thank you.
It is apparently acceptable to take up to 4000 IU Vitamin D3 daily. Most supplements will say 1000 IU daily but I suspect this is more a maintenance dose than one which will appreciably increase your levels. Certainly during winter months it is advisable to supplement and as we get older we become less efficient at creating Vitamin D even with a normal amount of sun exposure in the summertime.
Thanks so much. I use lots of sunblock because I’ve had melanoma. Just bought 2000IU and will give it awhile and get retested. I appreciate you sharing your knowledge.
I always use 2000IU a day to build up, at least in winter or when the person doesn't go outside. should be fine for 3 months to build back up. My Dad was in hospital they gave him an injection (sorry forgot) but I think they are about 100,000IU?(I maybe wrong here) AND they also gave him 2000IU tablet per day.. without testing his levels after an infection. About a month later, being concerned about overdose, as the registrar at the hospital seemed to always be goofing everything.. and I think he wasn't supposed to give the tablets AND the injection..so I had Dad tested. he was only 30IU. I , personally have found around 80IU is best for how I feel, and used to always sit around there, but since prednisone wit the severe PMR, I am low... then I guess I'm not out i the sun as much either. I try to am for 80 as I know that's wher I used to be when active and out in the sun. ... butmaybe when your body is fighting something you need to be higher.
Thanks for the info. I have started taking 2000IU a day. Having had a melanoma, I always load up with sunblock. Thank you.
I offered to pay for the test but she was adamant it wasn't necessary. Next time I see her I'll be armed with PMRpro's info (what would we do without her?).
You can get a self-test here:
cityassays.org.uk/Vitamin%2...
who also do tests for the NHS. I pay a bit more here in Italy - but all I have to do is tell whoever is writing the request for blood tests to add it to the list and at the end I get an invoice for the stuff the healthcare service doesn't cover, no arguments from anyone.
Thanks for the info, will use if no change in GP's opinion when I next visit.
Strangely - it is in this day and age that the shortages arise. There are frequent cases of rickets in UK hospitals - but no longer from the Asian community. Mummies plaster their infants with Factor 50 or even neoprene suits so they aren't exposing skin to the sun. And the highest rate of vit D deficiency is in Australia, especially amongst dermatologists ...
Ironic isn't it ? Here in OZ I slap on 50 plus most days when I am outside - as we nearly all end up with keratosis and or basal cell skin cancers - if not something more sinister - over time. I have had quite a few removed - I am quite fairish - with the typical UK kind of background many of us have in the antipodes - not at all 'designed' for searing sun - and spent far too much time in my middle years without appropriate sun protection. Consequently I have much wrinklier skin I reckon than all you 'English roses' and others up there in the more Northern climes. So yes a dilemma - sunscreen here LOTS of it then obviously to counteract the sun and with the D - but in much larger doses than I thought - given this article anyway. I usually just take a Calcium with D & K - but with only 1000 IU - so I will add more D and try to get a test as well - because those 'deficiency' effects don't look great !! Thanks PMRpro !
It is possible to make 20,000 IU of vit D from sun quite quickly provided your skin factory is working well, which it doesn't as you age, if you have something between it and the sun (sunscreen or clothes) or once you have a even a slight tan (works the same as a Factor 12 sunscreen). The difference is that the skin process has a limit on it and it stops. Taking supplements doesn't have an in-built off switch which is why taking unlimited amounts without checking can be risky.
But yes - even away from the fact that even a slight suntan is a sign of skin damage, a lot of the problem in Oz is the fair/red genetic makeup of your ancestors!
Thanks for that info which I'll quote when I next see her. My vit D intake should be adequate but now that I have steroid induced osteoporosis the levels are important.
Thank you for the link, I am feeling all the signs of low Vit D, although I do take 1x 25ug a day as stated on label and not to exceed the stated dose.
The instruction will be for those just needing a boost.
I will take 4 a day for a week i.e 4,000 iu to see what if there is an improvement.
Will ask the pharmacist tomorrow and show him the article, get his take on it.
Can’t wait three weeks to see GP.
That article prompted me to check my bloodwork ....I can access my chart on my computer. Normal range is listed as 25-100 (?) and my level was 34...so I think I'll increase my intake...that's safe enough isn't it? I'm presently taking 2000 units of D3 per day.....or do you think I should be happy being at the lower end but in normal range?
Shingles are drying...still painful but it looks like my eye is safe~! Great article.
So glad it looks like your eye is safe. What a relief! I’d been wondering how you were getting on.
The whole Vitamin D thing is really interesting, but also a bit of a minefield! It’s hard to work out what’s best isn’t it?
Thanks...so far so good. I just finished the script of anti-viral yesterday afternoon, the area being sore is expected. I put a call into the opthamologist because my eye is burning and I don't see her until Feb. 12. I figured I better call before the weekend although where I live is sheer ice with freezing rain falling...so I don't think I'll be seeing her. It is hard to tell if the pain is GCA, shingles or ? REGARDLESS, I feel better than I did a few weeks ago!! 🌸🌸🌸Take good care!
Oh that’s good then. Always good when you feel a bit better.
Your weather sounds awful. I’m on a train North just now after being in Edinburgh for work. I’d been going to stay the weekend to see old friends but the forecast is so bad for the weekend with trains probably not running that I didn’t want to take the risk of being stuck.
Is your new profile pic of the lovely Gus? 😻
Just watching a German weather forecast about the storm getting there over the weekend/Monday - hurricane force winds even at low levels. Constance may get blown away ...
The LNER staff were going along the platform asking if people were planning to travel on Sunday because if so it's likely that there won’t be any trains! And the trains from London were emptying themselves of rugby fans for the Calcutta Cup match tomorrow.
I got caught in Edinburgh by the Beast from the East 2 years ago. My Mum died on the day of the Calcutta Cup (sadly she never saw the heroic victory - she was a massive rugby fan). I’d had orthopaedic surgery on my foot three weeks earlier so couldn’t drive. I got a lift down to Edinburgh to sort out the funeral etc then bang, massive blizzards, I was snowed in and everything was blocked. I’d lived in Edinburgh for 40 odd years and had never seen anything like it. Meantime there was no snow at all in Inverness! Of course I couldn’t walk anywhere. No one could get to me. Mum's minister hiked over to see me in full mountaineering gear, bless him. No trains or buses out for days. Shops all shut. I wasn’t going to take that risk again this weekend..... And of course, very shortly after all that, what happens? Yep? PMR arrives within days!
It is indeed, the one and only~! He is my buddy. Glad you got back before the storm but hope you enjoyed the trip even though it was work and hope you get back in the spring to visit friends. Be well....😻
He's lovely. Cats always know when you're poorly and need that extra cuddle don’t they? I had a ginger and white boy like Gus a few years ago. I adopted him at 19 as his owner went into a care home and had him until he was 23. He was a lovely wee cat. 😻
Amazing...I hope I can say the same...23 years. My last one was a black short-hair who passed at 17~!😻😻
I would assume that is ng/ml. The confusion seems to arise because the "normal" range may NOT be the OPTIMAL range. Many doctors say 25-50 ng/ml is normal - but that doesn't mean your body works at its best at those levels. If it were me I'd want it to be at least 50 and probably more.
Here is another article which may interest people. Found it while trying, still in vain, to find out exactly how much Vitamin D is added to our milk. I did confirm that it's D3, not sure that always was the case.
I was prescribed 2000 units vit d3 per day plus 50,000 units vit d3 per week since diagnosed with gca May 2019.
Are you sure you have both a daily and a weekly dose? And taking that sort of amount for months does require the blood levels be checked to know where they lie.
Yes, I rechecked the rx bottles to be sure. I have labs taken monthly. Vit d level is in normal range now. It was below normal (19) last May. I see rheumy monthly also. Will ? if this much vit d still necessary.
I haven't read any replies about taking Vitamin D with orange juice to encourage absorption. Just vitamin K, does C have the same effect do you think? Also I have quite extensive calcification, do you know if regular intake of vitamin D might be adverse. My level of D when tested was 50, in the UK and rose to 55 when I'd had a month in Australia! Hope I am not asking too much of you, just wanted an informed opinion! Regards
health.harvard.edu/healthbe...
Vit C is not normally mentioned in the context of vit D supplement absorption - and I'm not sure it would have a role to play since vit D is fat soluble, vit C is water soluble. What you do need with vit D supplements is some fat to act as a transport medium. Vit C is required to improve iron absorption but I don't think it helps with anything else.
I also don't think that vit D will affect calcification of arteries - calcium supplements may do but I'm not an expert. What has your cardiologist said?
PMRpro, I'm seen annually by the cardio but my last rheumatologist there in London recommended just winter vitamin D supplements. I will raise the subject of calcification /D levels with my local rheumatologist and the cardio when next appts.
Thank you for your very useful help, really appreciated. (I'll also check if Vitamin K is the way to go in conjunction).
I've noticed that when I take Vit D tablets in winter my hair and nails grow really rapidly, and my nails seem much stronger and less brittle than otherwise.
My nails grow like Topsy! I've always assumed it is the pred ...
After trial and error, 4,000 IU keeps me in the lower end of the normal range. My endo or my rheum do the blood test for me each year. I self-diagnosed and asked for the first Vit D blood test many many years ago. My level then was in the "severe deficiency" range.
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