Vitamin D deficiency.

I have found it very difficult to get a blood test through my gp and when I eventually found one sympathetic enough to order one she told me that I was outside their prescribing limit. I found that she was not right if she was talking about the NHS guidelines but perhaps she meant her practice limit, who knows.
I decided to look after myself and I purchase my vitamind3 online, have been taking a very large dose and am gradually feeling better. I have a personal friend who is a gp and she has suggested that when I feel better I should get another test done privately to make sure that I don't overdo it although that would be difficult given where I live, my age and that I don't sit in the sun. She told me that I should be taking between 4-5000 IU daily after the initial massive input (20,000) to claw me back to normality. It is working and I am feeling better than I was but it is a long haul back.
It makes so much sense to use my own income to improve my quality of life but I really wish I had known about this simple sipplement much earlier. So much easier to stay well rather than try to get better!

An interesting thread. Hopefully the posts will help Marydoll and others

Juggernaut, that will be two beached whales in Dubai then!. We may make the news headlines.

This is the NHS recommendation: "since it's difficult for people to get enough vitamin D from food alone, everyone (including pregnant and breastfeeding women) should consider taking a daily supplement containing 10mcg of vitamin D during the autumn and winter." www.nhs.uk/conditions/vitamins-and-minerals/vitamin-d/

I'm sure many of you know this, but vitamin D is actually a hormone produced by the kidneys. If you have severely low vitamin D levels you are unable to maintain an adequate concentration of calcium in your blood for bone growth.
However, as the role of vitamin D as a regulator of other functions throughout the body has emerged, it has been suggested that a lack of vitamin D is linked to an inability to fight infections effectively, muscle weakness, fatigue and the development of diabetes, certain cancers, multiple sclerosis, depression, heart disease, high blood pressure, and stroke.
Also, during long term use of this medicine levels of calcium in your blood and urine should be checked at regular intervals and your kidney function should also be checked.

I find this info a little worrying, I used to be so blasé about taking ADCAL, which I had been taking on and off for years. No-one ever suggested checking kidney function.
I am now on theiCal-D3, which seems to be a higher dose.
However, my consultant did say that I would now receive checks.
Many thanks to all who have responded to my OP.
It has been an eye opener.

link.springer.com/article/10.1134/S0006297916120117

It is thought, but not necessarily proven, that vitamin D deficiency might have played a part in the extinction of the Vikings of Greenland.

I think that vitamin D deficiency can lead to many serious conditions.

It's good that your kidney function will be checked from now on Marydoll - and hope they will check your liver function at the same time as they do mine.

Thanks marydoll, I didn't know that AdCal can affect kidney function. I've been on it for 5 years or more. My kidney function is monitored because of other medication and the fact I've had stage 3 kidney disease since I was in my 30's. There has been a recent decline in function,next time I see the GP I'll discuss the pro's and cons. Old age, not for softies but better than the alternatives

Jalima, I already get liver checked because of my Sulfasalazine. Thanks goodness for the good old NHS, otherwise I would be bankrupt.
I'm amazed at the number of people who have responded to this and do appreciate all the good wishes.

I've never had my Vitamin D levels checked (perhaps I shold) but I do take Vit D tablets sometimes, not daily, and I just went out and bought some cod liver oil. It doesn't seem to have such high levels of Vit D as the tablets but perhaps is easier to absorb; I bought the one with orange as the plain cod liver oil seems to repeat constantly .

Marydoll,Sulfasalzine is a drug I just couldn't manage, nausea, head aches, exhaustion, generally feeling like I'd been run over by a truck. It sounds as though it's working for you though, good.
Without the NHS, we'd have had to sell our house to pay for my medication. Alternatively, we'd have had to by a wheelchair I expect.

Iam, it took six weeks, before the side effects subsided. I was about to give up. I agree, it is an awful drug.
I'm on the maximum dose, as no alternative for me and methotrexate is out of the question.
However, I'm tolerating it much better, so no complaints.
Onward and upwards l
Here's to all those on GN, dealing with chronic illness. GN is a great place to find support.

Yes thank goodness for the NHS.

I take 2 Vitamin D capsules daily (one morning and one night) and they help with my immune system and also help with arthritis symptoms. Just look up Dr Google.

I have vit d on repeat prescription after a blood test showed deficiency ..doc said to stay on it forever!

I was diagnosed with severe vit d deficiency 2 years ago (the NHS says the normal range is 50 and I was 14) and I take the Better You spray with vit K2 and use a magnesium spray too, all from Holland and Barrett. all the tablets and capsules I've tried, including the tabs my gp prescribed, seem to irritate my digestive system. please don't make me go into symptons, truly awful. but this vit d3/k2 spray doesn't affect me in that way, you just squirt it into your mouth/under the tongue. I take about 12,000 ius of the vit d a day in the morning just after my breakfast which always includes some fat (eg eggs or full-fat plain yog). its made a tremendous difference to my health, I feel so much better. the psoriasis has radically improved, I rarely fall over now and am much less tired.
My gp won't retest so I don't know what my level is, I believe the optimal range starts at 125 but you should aim for higher. there's a facebook page for vit d3 deficiency that I've found very informative. hope this is helpful winterwhite and Marydoll.

It is interesting that your GP won't retest. Mine won't either.
He said if I was taking the supplements I would be OK.

Same here Marydoll. I too became intolerant of Alendronic Acid for osteoporosis, developed a terrible croaky voice which was eventually diagnosed as silent reflux so now on Cimitidene and waiting for appointment for infusion. At the same time I was also prescribed Adcal for Vit D deficiency. I didn't know that sunshine might not cure the problem, so probably on it for life. Also got macular degeneration so have to be careful in the sun. Have injections and take Macushield for that.
Aloe Vera is soothing for reflux but doesn't cure it for me unfortunately. Isn't it a pain having to juggle various medications and supplements as you get older? Cheesed off with it!

Like you Hannahlouisluke, my biggest problem is juggling the different medications. Some cannot be taken within two hours of each other and if I'm late or forget, it gets even more complicated?
I'm going to have to make a timetable! ?

I have AMD but have never been told to beware of the sun, thankyou for that bit of wisdom.

I wonder if this thing about not retesting is an NHS England decision. I'm in Scotland and my consultant has said that I will continue to be tested. ?
In fact, I will have another test in a couple of months.?

Hannahlouiseluke I also have AMD but the dry variety as well as osteopenia. I was told to sit in the sun (if any!) for 15-20 minutes x3 a week during the summer months, shielding my eyes but without any sun lotion on then. I try but it is a bit hit and miss because of our inclement weather. I have been on ADCAL D3 for 9 years and I also cannot get a blood test.I did not notice a change taking the drugs. I am prescribed the drugs but for how much longer I do not know.

I have been diagnosed as Vitamin D deficient and the doc said to take a supplement. However when I took vit D and Calcium, I suffered extreme headaches, and if you look up 'Does calcium cause headaches?' there is loads of information saying it does. So, I stoppe taking them and the headaches stopped. So , I take menopace plus which has a lot of different vitamins in, but what should I do about getting vit D , as someone said on here that it can't be absorbed if you don't take it with calcium.? I too am suffering lethargy and aching bones.

rocketstop The first thing I would do is to to go back to my GP, explain your problem and ask if possible to be referred to a specialist clinic.
I have attended an osteoporosis clinic for about 20 years.
However, I was recently referred to a new specialist bone mineral department by my osteoporosis consultant, as he felt they would be better at dealing with things.
I'm puzzled by the posters whose GP advised them to go and buy medication rather than prescribe it.

I do wonder if the constant advice about Cholesterol and keeping out of the sun is making Vitamin D deficiency worse. I am on Adcal and Alendronic Acid for Osteoporosis but prior to that I had been told to cut right back on Dairy food for a slightly high Cholesterol and keep out of the sun after having a small spot removed, not much help when no one has diagnosed the Osteoporosis which would have benefitted from both. Vitamin K is thought to help combined with Calcium and Vitamin D.

I was low on vit D. Initially the GP prescribed it and then told me to buy my own and to take it daily. 800 IU or 20 microgrammes. I sometimes take a multivitamin which has half the amount but includes the B vitamins. I don't like taking masses of different pills.