A vitamin d question for you experts out there...

[sandi]

Having crawled my vitamin d level up from 20 to 65 over a few years it is now down at 42 according to last bloods.

GP agrees low but they don't prescribe at that level and ask you to buy over counter. Her suggested dosage is 1000iu a day.

From my research this seems to a maintenance dose and I don't want to maintain a level if 42 but aim a bit higher.

Is 1000iu actually just a maintenance dose?

If so, should I take more than 1000iu a day - and if yes then for how long (next bloods 6 months away)?

And/or should I take a higher loading dose for a few weeks before reverting to 1000iu? Again, if yes how much?

Should I be aiming just to get to 50 or to 75 as other articles have suggested?

Last q! - I normally take supplements away from thyroid meds but as vit d is supportive of thyroid is there any advantage in taking at same time?

Thanks for your thoughts!

Sandi

[Moggie]

You need to be aiming for the "optimal" results, which is over 75. I am in the same boat as you as I cannot maintain my VitD level. Have had two courses of high powered vitD of 50,000iu a day for a couple of weeks, which took my levels to 154 but six months later I was back down in the low 40's. Have asked both my GP and endo where my vitD is going but no body seems to know the answers.

Yes 1,000iu daily is a maintenance dose so may not do a lot for you. At the moment I am taking 3,000iu daily and have only just reach 70 (from low 40's) after months of supplementing which seems rather odd to me.

If I were you I would try 2,000iu daily for a few months and then ask the GP to retest your VitD and your calcium levels as you don't want high calcium to cause you other problems in months to come.

I never take my vitD near my thyroid meds - in fact I take nothing near my thyroid meds except water as I don't want to chance anything interfering with absorption.

Moggie x

[sandi in reply to Moggie]

Sorry must have pressed wrong reply button so my main reply is below...

The only reason I asked the timing question is that when I got back from the docs on Wed eve I took my nighttime thyroid together with a couple of vit d tabs lurking in the drawer from my last supplementation effort. And yesterday I woke up feeling brilliant and breezed most of the way through a stressful day!

Was hoping I stumbled on a strategy that worked...

Sandi x

[Moggie in reply to sandi]

Maybe you have - wouldn't that be brilliant!!!!!! Have another go and see what happens - you won't know until you try it for a week or so but keep a close eye just in case your thyroid levels drop. Must say I have never heard of this so you'll have to let me know what happens. I take my vitD with food as it is supposed to work better that way.

Moggie x

[sandi]

Thanks Moggie

I think the 2000iu a day until next bloods sounds good. It was the sort of thing I was thinking.

I'm off for another blood test next week as she wonders now if I may have hypo calcium anyway, so hopefully I can ask her to repeat that in 6 months too with no problem.

No idea where the vit d goes either. Sat outside a lot this summer and diet relatively ok so a mystery why it drops. I did read that this is often the case and best to take for life if you've had episodes of low levels. Another ongoing cost of being ill!

Thanks again,

Sandi x

[Moggie in reply to sandi]

Your welcome and glad your GP is also keeping check on your calcium.

I really do wish I could get an answer from someone medical as to where it goes as two endo's and my GP has now ignored me when I questioned this. It's a hell of a drop from 154 to low 40's in a matter of months plus 3,000iu daily and my levels are hardly moving is another concern. Maybe some more research is pending.lol.

I take a really good vitD liquid as I didn't want to risk absorption issues with vitD as well as levo.

Moggie x

[Marz]

...in grassrootshealth.com there is a grid that explains that for every 10 units under say 70/80 you will need 1000IU's of VitD. eg if you are 40 and the optimal is 80 then you will need 4000IU's per day. I have Crohns so take 10,000IU's per day. I have read on this forum that you need to have your calcium and adjusted calcium tested when you have VitD tested. This is because VitD improves the production of VitD which in excess can upset the heart....

[sandi in reply to Marz]

Thanks, that's a great link. I think maybe I will start with a higher dose for the first couple of weeks then drop back a bit and see what happens at the next blood test. May even bite the bullet and pay for my own test after 3 months to see how it is going.

[Marz in reply to sandi]

...sorry should have said VitD improves Calcium production in my earlier post !! City Assays in Birmingham do a postal service for VitD tests I believe. Grassroots Health is an excellent site - and so is vitamindcouncil.com - and American site but lots of thought provoking articles..... they are now saying that good D levels could help to reduce certain cancers by 30% - and that has to be good news. Good Book - The Vitamin D Solution - by Dr Michael Holick - lots of valuable information.

[bantam12 in reply to Marz]

I did a finger prick test from City Assays and the result was wrong. My Vit D was 12, after a few weeks on 800iu their result came back as 77, my actual result taken with a normal blood test was 41. My Consultant said the finger prick is not reliable.

[Marz in reply to bantam12]

Thank you for alerting the UK patients. I will take it on board and not suggest using it again. Have not heard any other complaints though....

[bantam12 in reply to Marz]

I would hazard a guess that people would not normally be having hospital blood tests alongside the finger prick ones so wouldn't know there could be a big difference in results. Of course this could apply to all finger prick blood tests, the method of taking and transporting may have a detrimental affect on results.

[Hidden in reply to bantam12]

really? They're an NHS lab after all!

One thing I notice it gets easier each time as my blood flows better, first time I could hardly get enough for the 4 spots needed.

(btw they add it to rat poison so blood flows quicker, used to be wafarin - scarey eh!)

[sandi in reply to Hidden]

Sorry, think I've lost the thread here! What are they adding to rat poison -Vitamin d?!

[helvella in reply to sandi]

Yes. Vitamin D is used as rat poison.

However the processing of vitamin D within rodents has considerable differences to humans.

A bit like guinea pigs and humans being among the few mammals which rely on vitamin C in diet rather than making our own.

Rod

[silverfox7 in reply to bantam12]

The danger with a finger prick for blood is that you must not press the finger to get the blood out. By pressing you are not getting the same reading you would have got by free running venous blood, its now diluted. Not sure whether the instructions have told you that. If you have problems with the blood from a finger prink, it is also advisable to wipe away the first drop for the same reasons, then stop and run the hand under the hot water tap, not hot enough to cause discomfort though, then swing the arm round in a circle from the hanging position to above your head a free time that should improve the blood flow. Experiment as well where to prick the finger, some areas are better than others. Over the nail bed is very good but a little more uncomfortable. I used to work with med students in practical classes who often needed a capillary sample! if you are really struggling get someone to help and use the ear lobe.

[bantam12 in reply to silverfox7]

The instructions included in the kit are very clear. I won't be using one again, waste of £25.

[Marz in reply to sandi]

...ummmm- think I would go for around 4000 IU's a day.....

[tegz in reply to Marz]

Didn't you mean production [or rather retention] of Calcium, Marz?

[Marz in reply to tegz]

..yes I did - you are right ! Another senior moment !

[Issy]

I took 30000 iu a day to bring my level up to 90 took about 6 months.. Yes thirty thousand.

[sandi in reply to Issy]

Wow! Were you really deficient? Are there no side effects? Did it raise your calcium too?

[bantam12 in reply to sandi]

I developed Hypercalcemia on just 800iu taken intermittently over a couple of months, you need to keep a check on calcium levels.

[Issy]

I didn't check calcium. I started at a level of 28

[Hidden in reply to Issy]

This is why you need to check calcium first (note this is a US webpage so the units used for vit D and calcium are different from UK, you need to convert first):

parathyroid.com/low-vitamin...

[bantam12 in reply to Hidden]

I had my calcium checked before supplementing and it was high in range so my Consultant didn't want me to take anything higher than 800iu, she didn't expect calcium to go any higher on the low dose but it did and very quickly. I can't understand people taking mega doses without checking calcium and pth first.

[Hidden in reply to bantam12]

Do you have a parathyroid issue? The "diagnosis" page on the above website is also very interesting:

parathyroid.com/diagnosis.htm

Most doctors are not skilled enough to diagnose a parathyroid problem.

H x

[bantam12 in reply to Hidden]

Yes possibly, currently being investigated by a parathyroid specialist. It's incredibly difficult to get a diagnosis as several things have to be out of range at the same time and as the levels naturally fluctuate it typically can take several years to get a diagnosis.

My possible pth problem kicked off after I had the low Vit D result which is why I say nobody with low very Vit D should supplement without other tests first to rule out pth disease.

I might add that the symptoms of pth disease are very easily mistaken for hypo/hyper symptoms, particularly fatigue, so anyone self medicating with either thyroid meds or vit supps needs to be careful BUT parathyroid disease is quite rare, only 4 in 100,000 so they say but still wise to check calcium before popping pills.

[ruthalem]

Hi Sandi, my vit D level is 47 last blood test and my GP has prescribed Bio- vit D 20,000.

[sandi in reply to ruthalem]

thanks - is that 20000 a day or a week?

Did you actually get it on NHS too?

[ruthalem in reply to sandi]

I`m reading the back of the pack which is written (20,000 IU) (500Ug).per day. My GP prescribed it so I don`t have to pay for it myself

[sandi in reply to ruthalem]

thanks - why is there no consistency in NHS?

I was told to take just 1000iu a day and buy it myself yet my level was lower at 42. It's just like the inconsistency in thyroid med prescribing - grrrh!

[ruthalem in reply to sandi]

I always tell my GP that I have already paid for all the medication I may need in the future because I have paid into the NHS all my life and now I am to old to work and can`t afford to pay, It works every time.

[waveylines]

I would recommend looking at the Vitamin D Council website -they have lots of useful info on their website and have already shown that taking 5000iu per day of D3 cannot cause toxicity.....infact they believe you would have to be taking well over 10,000iu perday long termly before any problems of toxicity might start to creep in. This means that the current dose level in the NHS of 800 or 1600iu per day is far from optimal.

In normal low vitamin D you will not absorb calcium so your level of calcium will drop below normal as you will excrete it without vit D3 not matter how much you have of it in your diet -you bones will soften causing aches and pains and eventually (as is what happened to me ) you bones will break due to weakness. You will feel tired and suffer with poor REM levels in your sleep resulting in feeling tired when you wake even when you have slept all night and your immune system suffers so you catch loads of bugs which you have more severely and last longer than they do for others. Evenutally you can develop a condition called Osteomalcia ( soft bones)

I cannot tolerate any sunshine (even in the the UK!) due to an autoimmune condtion which destroyed all my skin pigment so I burn terribly even in the spring sunshine i nthe UK!! This was the reason for my extremely low level of vit D - around 3nmol....ie neglible. A nurse very kindly suggested that all I needed to do was to go out in the direct sun more....It seemed to be a toss up between low vit D or skin cancer! I take 5000iu per day of D3 all year round and luckily for me my bones went back to normal and my vit D level remains at 80nmol. My calcium levels reutrned to normal....I was lucly that it was picked up whne my legt broke!!

[Hidden]

Osteoporosis society document re Vit D (Rickets and Osteomalacia are rife again.)

nos.org.uk/document.doc?id=...

The sun has been here for a while - perhaps we should be used to it by now (sunbeds and sun 'cream' are different matters however).

Historically 'man' moved north and got whiter - why? to absorb more sunlight!

I know I'm solar powered and since supplementing have avoided bi-lateral carpal and cubital tunnel surgery - enough proof for me, life is better without pain. (Co-incidentally it's also lowered my TSH from 5.24 to 1.6 -no meds and no proof of course).

Grassroots (mentioned above) recommends amounts e.g if you're tested at 50 (nmol/L - note different measures in USA) a supplement of 3000 'til 80 nmol/L reached (80 - 50 = 30) but better explained on-site. [this is my personal experience and opinion only]. I'd like to know where it goes 'tho, as it soon dissapears. I'm taking 2000 now (didn't in the 'summer') J x

[surf8111]

Hi Maggie

I lived in California most of my life.. it is calculated that the CA sun gives us

10,000 iu of vit D per day.

Which would partly explain the kick start of my latent thyroid disease when I came

to Scotland.

I now take 10,000 iu per day (safety verified by Dr- could be increases as per individual).

Hope this adds some light ):