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Vitamin D experts help please

(8 Posts)
MyVisionsComeFromSoup Wed 01-Nov-17 17:41:59

Bit of background - diagnosed with fibromyalgia, but obviously there's a lot of symptom crossover with Vit d deficiency. Thyroid probably OK, B12 mid range.

So, my Vit D last September (so at the highest it's likely to be) was 54. GP (and then consultant) was happy that I supplement. I read all I could (especially the long thread on here) and calculated I needed 3000 IU a day. Fast forward to March, and my levels had gone up to 68. Better, but still not at the 120 level I wanted to get to (to see how my fibro symptoms improved).

Question is, is there likely to be anything wrong, if my levels only increased by 14, while supplementing 3000 IU a day? Do I increase that to 5000 IU a day (which is about the limit I'n happy to go to without it being an actual prescription from a doctor IFSWIM), or should I switch to a spray, in case it's to do with the format of the supplements (gelcaps)? Or do I need to see if the GP will do any investigating, and if so, what for?

TIA

Bettertobehealthy Wed 01-Nov-17 20:40:16

hi Visions ,
it seems like you may be a lower than average responder to supplementation. It is well known that our individual responses can vary , by as much as 6 to 1 . It may be that you are not absorbing all that you ingest ( reduced gut absorption ), alternatively, it may be that you are actually using what you ingest to remedy any ongoing illness or fulfill ongoing cellular requirements. Don't forget , your body uses up your Vit D supplies, once used, it is degraded. In general we need somewhere in the order of 70 IU per kilogram of our weight, on a daily basis for optimum functioning of the Vit D pathways. That amount should come from food, supplementation, sunlight , sunbed ( if any ) Over winter ... there is no Vit D manufactured from sunlight( in UK .) Small amounts come from food , less if you are vegetarian.. ? Would 3000 IU daily cover your requirement .
Your current dosing regime presumably was meant to cover your ongoing requirement , also to top up your reserve. If you need close to say 2500 IU for your daily ongoing requirement , then you will have 500 IU to act as a top up to raise your blood level, so your levels might not increase very quickly. This is all supposition , so we cannot say for sure what is going on. However, we can say that you would be better off with higher levels.
You mentioned that your level in March was 68 , presumably you have carried on, throughout the summer with supplementation. It would be very useful to know your current level. Has it continued to climb throughout the period March till now . ? To make an informed decision about what to do now , you need to know your current level. ( www.vitamindtest.org.uk/index.html ) - try here if the doctor won’t measure it. You may very well find that unless your doctor is enlightened about Vit D , they may just refuse to test, since your last level is within the NHS guidelines for whichever is your area.
Absent that information , I would say the best course of action , would be to raise your supplementation to 5000 IU per day , using your current method. Then check your level about 3 months after continuous daily supplementation with 5000 IU. If your level is not coming up , then think again. You may very well need more. Some people do . You might need to change your method of delivery.
IF you do have any reason to suppose you have any kind of malabsorption problems , i.e. gall bladder removed, Coeliacs, Crohn’s , IBS etc … then switching to a good quality spray could very well be advantageous, because it bypasses the digestive system entirely. Test after 3 months supplementation.
Also bear in mind that it would be important to try to ensure that you do obtain all your other vitamins and minerals, particularly magnesium, not forgetting calcium if you are dairy free. Plenty of veg, some fruit etc. If you are not dairy free , then a normal diet ,combined with Vit D supplementation , most probably means that your calcium absorption is ok. Some dark greens and consumption of some liver , contains a good amount of those vitamins and minerals required by our bodies.
You have mentioned visiting a consultant , did he by any chance measure your parathyroid PTH level ? and calcium? If your PTH was in the upper quadrant of normal, with calcium normal then that would be consistent with lack of vit d, i.e a normal bodily response to low vit D. If your calcium was high , with PTH high, that could possibly be a sign of hyperparathyroidism. I would imagine that would have been one of the thought processes of your consultant, thereby eliminating that possibility.

Don’t give up ..! get your vitamin d to where it should be. Over 100 , preferably 120 -140 , where many vitamin D researchers say it is optimal for good health. i.e 100 to 150. You may need to test a few times in order to determine exactly how your body responds . After 3 months on any particular dose , you will reach equilibrium for that dose. Try not to vary the dose too often, i.e. definitely not stopping and starting etc. Daily supplementation is much more preferable than weekly or monthly. !

Best of Luck, BTBH

.

shewolfmum Wed 01-Nov-17 22:39:21

It is better absorbed with fat and needs k2 also. I wouldn't take a higher dose it can lead to calcification. Maybe take some cod liver oil or similar?

MyVisionsComeFromSoup Thu 02-Nov-17 17:14:28

Hmm, I've ordered a testing kit, so will see what that shows before I decide what to do. Consultant didn't test PTH, or mention calcium at all (this was a rheumatologist who was diagnosing fibro before handing me back to the GP). No gut issues that I know of, apart from heartburn if I have ibuprofen/naproxen.

Will plan something fatty with my morning tablets, and check what K2 is in the multivit too. Am already taking a biggish dose of magnesium as recommended for fibro.

MyVisionsComeFromSoup Wed 08-Nov-17 16:56:34

So, my blood test result is back, and is 73, at the beginning of November, when I've been supplementing all summer with 3000 IU per day. So an increase of 5 sad.

That looks like either not a big enough supplement, OR that I should try a spray.

I used BetterYou to test (as recommended elsewhere on MN) , and they've just come back with a suggestion of 2x 6000 IU a day for two weeks as a loading dose, then 1x 6000 IU thereafter, but I do get a free spray from them.

So, I might double up on my 3000 IU gelcaps to use them up, then move over to the spray, to see what happens.

There's 75ug of K1 in my multivitamin, which from reading, seems to be as good as useless (as very little is kept in the body) - is this right? So I should be looking at adding K2 either through diet, or as a supplement as well? Cheese and eggs are no problem to make sure I have in my diet, I've been pondering fermented foods as well, but hadn't got round to doing anything about it.

MyVisionsComeFromSoup Wed 08-Nov-17 17:04:14

ooh, I can get a VitD +K2 spray as my free one smile.

Can I just plug Better You's service here - I ordered the test on Thursday last week, it arrived in the post on Friday, I sent it back Friday PM, and got the results back today. Done and dusted within a week, my spray has 1-2 workings days delivery. Cost was £28, but the spray is £9.95 + £2.95 P&P. So, less than going direct to the lab grin.

notapizzaeater Wed 08-Nov-17 17:33:43

I use a vit d drop every few days, think I will get the test and check levels. My thyroid gave up a few years ago and am probable coeliac (ds is so we eat gf at home anyway so no never bothered getting tested)

Bettertobehealthy Fri 10-Nov-17 12:31:10

Hi Visions

It is good that you now know your level of 25hydroxyD3. At 73 nmol/L roughly a month after the end of summer , it is probably higher than 50% of the UK population right now. , however , it is still lower than recommended by many vit D researchers.
In the light of your Fibromyalgia diagnosis it makes a great deal of sense to raise your levels to at least 120 - 140 , even higher ,possibly even up to 200 , would not be a concern . You are trying to recover from a particular health issue. Natural levels in outdoor workers etc can reach 200. Although I would say that you would then be using vit D in a pharmacological way , and if you proceed with significantly higher doses or blood levels you should check your Calcium level. If it is outside the normal range , then take the appropriate action. This would be very unlikely , but it is prudent to check.
Vitamin D enables you to REGULATE the amount of calcium you absorb from your food to your precise needs. It does not cause you to absorb more calcium than you need. That is a very important point. Massive overdoses ( i.e. many tens of thousands of IU daily ), over many months could in some circumstances overwhelm the regulatory function.

Yes ...in your situation I would increase your daily dose up to 5000 or 6000 IU , which may be eminently suitable to achieve that level raising effect that you need. ( Although it is quite likely to have the effect you want ... whether or not it does, depends upon your own particular physiology. ) You know your present vitamin D dose is definately having some effect , albeit somewhat less than you might have expected. The reasons for this can be varied .....are you a smoker ? is your vitamin d binding protein less efficient (VDBP)... is your digestion of fats less efficient than normal, etc etc. total weight ?, and so on.

If you are able to finance that spray you mentioned, then yes , it is quite a good idea to use it... you would be eliminating quite a few possible causes of low response. In fact we don't know every single reason why some of us seem to respond less.

Many other people reading this thread most likely will not need to spend greater amounts on more expensive supplements . Most peoples needs can be supplied by using approx £ 15 per year supplements of Vit D. ie.gel capsules.

In my opinion , you should change now to an increased dose, maintain that method of delivery for three months , then measure again , also with a blood calcium measurement at that time if that measurement is available , (i.e. if doctor is willing ?). If you change variables too much , i.e capsules for a time , then spray , or different doses then you must allow 3 months to pass on one single regime , in order to accurately measure your response.
As mentioned before try to ensure you are obtaining sufficient other vitamins and minerals. Healthy food is of prime importance. There is lots of K1 in greens, particularly dark greens. Your own body converts some K1 to K2 . If you suspect that you do not have sufficient K1 or K2 then supplementation would be an option. However , as far as I know , there is no scientific evidence ( peer reviewed scientific papers ) showing that K2 supplementation is extra beneficial with Vit d supplementation. There is evidence that IF you are deficient in K2 , then , an increase is beneficial. But of course that could be said of every essential vitamin or mineral etc that we need. . If you take extra K2 , will it harm you ?, probably not - as far as we know, at the moment. Products from grass fed( but not predominantly corn fed ) animals i.e butters from New Zealand or Ireland or some cheeses that have been fermented by bacteria that produce K2 may be a good source . i.e edam.

Hope this is helpful ! BTBH

PS. For other readers of this thread , Here is the thread with lots of Vit d discussion . Vit K2 towards the end.

www.mumsnet.com/Talk/general_health/2421492-Vitimin-D-can-it-have-this-effect

PPS. A technical point ; The reason I do not recommend frequent dose changes i.e. 3000 to 12000 , then 6000 over just a few weeks is that your cells produces an enzyme (24 hydroxylase), in response to higher levels of Vit d …. Your bodily enzyme systems get used to a particular level of Vit d, unwanted Vit D is degraded by this enzyme. If suddenly you have much less Vit D , i.e. you suddenly halve your dose ,12000 to 6000 IU , then your boosted levels of 24hydroxylase may degrade those molecules which you may need. See the work of Prof. Veith , Mt Sinai Hospital , Toronto, Canada. He is a world authority.

Here are a few of his interesting comments re Vit D .. : www.youtube.com/watch?v=H5HiBtY3ccw

BTBH

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