Vitamin D confusion

[linda49]

Hi all

At a recent appointment with the practice nurse for a blood test, I asked if she could find the result of my Vitamin d level in my records. She could not find any record of it and so suggested we just add it to the blood test request on that day. When the results came back , GP phoned to say my Vitamin D level is low at 28. She mentioned it should be between 70 and 100 and offered to prescribe an additional supplement. I have collected the prescription today which is for :

Cholecalciferol 400 unit capsules

One od for 2 months then repeat blood test

I currently have Natecal D3 which contains 600mg calcium / 400i.u.cholecalciferol taking one twice a day.

Will this combination of Natecal and new prescription be sufficient to reduce the deficiency? What do other people take? I thought I had read about levels of 1 and 2000.

Also when reading about Vitamin D online I noticed that a symptom of Vitamin D deficiency is sweating. I do not have this to any great extent, but it has been mentioned recently as a troublesome symptom for many of us. Just a thought...........

Many thanks

Linda

[piglette]

My reading was 26. I took 800 iu a day and after three months with a bit of sun it had gone up to 52. In my area they are still saying from 50 is normal, although other areas seem to have now gone up to 70 or even 75. I had the most appalling sweats with pred, I am not sure the vit D has any side effect I am aware of.

[linda49 in reply to piglette]

Thanks Piglette for your reply. Did you notice any reduction of PMR type symptoms when you increased the Vitamin D intake?

[piglette in reply to linda49]

I don't think I did, but I had so many side effects from the pred, around fourteen, that I was totally confused with my aches and pains.

[Celtic PMRGCAuk volunteer]

Linda, I had the same result as you from my first Vit D test, and 1000 iu Colecalciferol a day for 3 months increased my levels to the upper 80's, so the combination of the two that you are taking should be sufficient to get your's into the normal range, which my area health authority considers to be between 75 and 150-200. Some people do take much higher doses, but my dose is kept to a safe level for me due to chronic kidney disease, and I'm only recommended to take it for 3 months during each winter. Taking a Vit D supplement allows more calcium to be absorbed into your body so, to be on the safe side, everyone would be wise to have their calcium levels checked when taking a high dose Vit D supplement just to ensure that they are not making too much calcium (hypercalcaemia) which can lead to unwanted grit/crystals forming.

[linda49 in reply to Celtic]

Thank you Celtic. I too have chronic kidney disease, stage 3, due to chemotherapy nearly 20 years ago and then regular use of NSAIDs for about a year prior to being diagnosed with PMR. The GP didn't mention that the Vitamin D dosage should be controlled - something else to go on the list to discuss at my next visit! Thanks for the heads up!

Linda

[Celtic PMRGCAuk volunteer]

Linda, snap with the stage 3, mine possibly due to either 7 months of Ibuprofen during my undiagnosed PMR/GCA day some 9 years ago or to the uncontrolled inflammation itself, or even to my seemingly impossible-to-control high BP having a bad effect on my sole kidney function. However, I shouldn't really complain as I have had only one kidney since I was 12 and it has served me so well.......until PMR and GCA arrived on the scene. Have you been in stage 3 since the chemotherapy all those years ago? If so it sounds as though at least it's stable, which would be excellent news.

[linda49 in reply to Celtic]

Hi Celtic,

sorry for the delay in answering. I have fallen a little behind on my Open University study and trying very hard to get up to date, with a little success. It does sound like your kidney is doing extremely well given everything that has been thrown at it over the years. I did see a nephrologist in July this year, as my GP referred me. He felt that things were now stable over the last and BP well controlled, so can be discharged back to care of GP and I'm fine with that decision. I fill the pill boxes tomorrow so will get into the swing of it this week with more vitamin d and hopefully the next blood test will show improvements!

Linda

[Celtic PMRGCAuk volunteer in reply to linda49]

Hi Linda, it is always reassuring to get an opinion from the experts, and that is excellent news from the nephrologist. So lots of good luck wishes for more good news with your next blood tests.....and your OU course!

[linda49 in reply to Celtic]

Thanks Celtic.

[Pollyanna16]

Oh my goodness get lots of sweating! Have never been told could have Vit D blood test so have no idea it may be a factor. Will ask next time I have my bloods done. However being an outdoor type am not expecting it to be low.

[PMRpro Ambassador in reply to Pollyanna16]

I live in northern Italy, am outside all year and rarely use sun cream - my vit D was 21!

[linda49 in reply to PMRpro]

Hi PMRpro

21 despite the sunshine and being outside year round - what hope for us in the UK? Have you had to take supplement to increase this level?

[PMRpro Ambassador in reply to linda49]

I took H&B vit D at about 5,000 IU/day for a few months and got it up to well over 50 then. No idea what it is now but the local recommendations are to take at least 2,000 IU/day through the winter at least - over 80% of the local population are thought to be deficient.

[linda49 in reply to PMRpro]

I'm viewing it from the stance of there being symptoms of Vitamind D deficiency which are similar to some symptoms of PMR. If I can improve my Vitamin D levels and eliminate some of the symptoms, then hopefully remaining symptoms can be managed by the Pred. I am surprised to hear about low levels of Vit D where you live PMRpro, despite the better weather!

Linda

[PMRpro Ambassador in reply to linda49]

I suppose it is because people rarely go out in the full sun - all summer it is plain too hot. You can tell the tourists - they walk in the sun and then wonder why they are bright red and feeling yuk! The locals all walk on the shady side of the street!

Even having a suntan is the equivalent of having something like Factor 12 on and even using Factor 8 reduces the amount of vit D you make by about 90%! I suppose it is as well in that sense that most people don't use enough sun cream...

[linda49 in reply to Pollyanna16]

Hi Pollyanna

Yes it does seem that being outdoors helps, though we need sunshine and that's not always easy in the UK!

[braindamage]

I take a vit d3 supplement - 25micrograms daily. I get mine from Holland and Barret.