I just got a letter from the hospital. The consultant who saw me last August arranged for some blood tests to be done.
He says that the kidneys, liver functions and routine bloods have come back as normal and the thyroid function tests were within normal limits although the Vitamin D level was slightly low.
I did tell him that I had been taking D3 tablets which I bought online. At the time of the tests I had stopped taking them, I understood that they were not really beneficial in the summer months as we got our Vitamin D intake from natural sunlight. Then again, I'd been told to stay out of the sun when taking Doxycycline, which was probably half the time.
He is taking advice from a specialist and will contact me again 'as to how you must take your Vitamin D', to use his words. I take it he's concerned about potential calcium build up through taking too high a dose.
I don't know how long that's going to take and I am getting anxious that I'm missing the benefits of the D3. Maybe that could be why I got the bug, or whatever it was, last week?
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Gordon57
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my doctor told me to take Zinc to build up my immunity - he also gave me a prescription for Doxy.
on the front of the packet is says in bold writing - AVOID IRON,ZINC OR INDIGESTION REMEDIES.......................Doh!!!!!
Gordon - there's a real school of thought that vitamin D can really adversely affect those of us with sarcoidosis (I know that's not what you suffer from), but it builds up too much calcium which essentially helps granulomas in our lungs increase.
I know one or two people who avoid sunlight and all sources of vitamin D like the plague. It's funny that something so vital can have such an adverse effect on you.
I personally enjoy warm sunny weather - but I don't use any supplements to increase it.
Sarcoidosis can cause production of Vitamin D outside the kidney, hence the reasons for not taking it with this condition.
On the other hand, COPD sufferers are often deficient in what's termed the 'sunshine vitamin', hence being told to absorb the sunlight to produce it naturally.
As always, it is worth checking that you're doing good, not bad, with any supplements taken, and to discuss them with your doctor or consultant if you can. I had been taking D3 following information given by Derek (derrylynne) on another site. I looked into the restrictions and potential side effects first.
Having been on Doxycycline most of the summer, I stayed out of the sun if I could, but wasn't afraid of going out in it if I had to. Common sense is the way I usually measure the risks. But, as with San15 below, if you do get the reaction then you need to adjust your routine to suit.
I was quite shocked to read elsewhere that someone had asked their doctor about Vitamin D and was told it wasn't legal to prescribe it. She told him it was on open sale in a local chemists and he phoned them to tell them to take it off sale and deny it was ever available! Now that's a bit extreme.
If in doubt, ask - and there are nurses available via the BLF helpline if you need to talk to someone about the benefits, or dangers, of taking these things.
Thanks for all the info you come up with Gordon. I like to read what you have to say. Just remembered Pete takes Doxy sometimes as he has to come off Zithromax sometimes as he gets too used to it. Doxy is what he replaces it with. He also has vitiligo on his face, arms and hands and has to use a high sun cream so as not to burn. I won't let him sit out in the sun without his factor 30 (prescribed by Doctor) or his hat and he has transition lenses too. It is difficult to know what to do for the best sometimes and some people need to keep up their vitamin D levels of course. Pete has sarc and copd so is caught in the middle there. You take care. xxxxx
You are right Marie as Pete has to avoid vitamin D and the sun. Our daughter-in-law has lupus and has to avoid the sun too (not that she does, naughty girl!) It is odd how sunshine is such a great thing but not for everyone. xx
Hello every one. I have taken doxy every day for over a year. You just leave a few hours before taking iron, zinc etc
Consultant told me to ignore the stay out of the sun warning and just to use common sense, which I try to do. The only time I have got badly sun burnt was through car windows, I guess it magnifies the rays.
Hi Linsabout. It is my understanding that you cannot get a suntan if you are bathing behind glass. Iam at a loss of how you managed to get sun burnt. Be interesting to hear from others. Take care.
Hi Linsabout and dogcyrus, i think glass protects you against UVA but not UVB - or the other way round. for one of them there is no - or little - protection. I dont take doxy so no personal experience, but i've read that lorry drivers get more long term sun damage on the "window" side of their faces.
i got badly sunburnt on my hands when hanging out my washing while on doxy, was in terrible pain and needed to keep them covered in wet bandages and take antihistamines, just as i was going away on holiday too x
Oh dear - do we take Vit D3 or not, I've been taking it for ages after advice from this site, I did tell my doctor and he said I was wasting my money, will be interested in what you can find out Gordon.
How much D3 are you taking? I was recommended to have 5000IU per day so I do.
I don't know if it is has helped but my husband has been taking Vitamin D3 at 5000IU per day for over 2 years. I figured that he is hardly ever outside long enough - I read 15 minutes min. with no hat on and arms exposed! I know that he has only had to use antibiotics four times in the last two years so I think it must help. I actually am taking it myself during winter, with the lack of sunshine this year us in the North must be deficient! TAD xx
Some people buy medication online, many don't, for good reason, but if you do,
don't expect to get what you think you have paid for what it says on the label.
Is anyone gullible/stupid enough to buy cheap online medication ?
If indeed you do and tell your doc or consultant of your online self medication purchases
I would doubt if any responsible response would be...
He is taking advice from a specialist and will contact me again 'as to how you must take your Vitamin D', to use his words. I take it he's concerned about potential calcium build up through taking too high a dose
If in doubt, ask - and there are nurses available via the BLF helpline if you need to talk to someone about the benefits, or dangers, of taking these things.
> Is anyone gullible/stupid enough to buy cheap online medication ?
I do, but it's because it's easier, less time consuming and cheaper than going to the shop for it. The ones I get via ebay are from a herbalist shop I already knew of and not in the category of 'snake water'. They are manufactured in the UK to GMP standards and I'm happy that I get what I pay for. They are no different to similar preparations on sale in the high street chemists, apart from being able to get a higher dosage than they sell if I want it. It's also slightly cheaper this way.
The consultant I saw in August was interested that I was taking D3 and is taking advice from a specialist. He certainly didn't look down his nose and suggest I was doing anything wrong. If there is a concern about calcium then I'm sure he will cover that. I'll be sure to pass on your comment about his 'responsible response' being in doubt.
> If in doubt, ask (although I note that's a cut/paste of my own post)
I did, hence putting a blog up about it... The ones I had been taking are "25mcg (1000iu) Vitamin D3 which is 500% of EC Recommended Daily Allowance", to quote the package they come in. I note that others are taking 5000iu and had a look at these from the supplier I use, these would be a capsule and do not contain dicalcium phosphate like the 1000iu strength tablet.
The reason for putting this blog up is to make others aware of D3 and sharing my experience and the route through a hospital respiratory consultant to check my levels and get proper advice.
Strange - I just tried finding a definition of a neersayer and Google isn't finding anything. Does that mean I should use the word ?
Is Vit D3 just for SAD or anything else to do with COPD, because if it is just for SAD it hasn't worked for me I am now on ADs, so might as well stop taking it unless its helping something else - 1 less tablet
As advised, do a bit of research and decide for yourself. My view was that D3 was helpful for COPD sufferers who are often deficient in this vitamin. Note the specific D3, not just general Vitamin D.
I simply did a Google on two words - COPD and D3, it turned up quite a lot of results. I then clicked 'pages from the UK' and started with those that were of NHS origin.
But, always check that it's not going to affect anything else - as pointed out with sarcoidosis already.
It really shows an amazing amount of ignorance when a doctor telephones to say selling D3 over the counter is illegal. I do wonder if practitioners like this should in fact be allowed to practice. As an advocate of vitamin D supplement I do read the latest research, and am subscribed to research papers. The one clear outcome is the amazing importance of this 'sunshine vitamin'.
cholecalciferol (vitamin D3 ) is in fact less of an essential vitamin but a Hormone. Latest research is showing that low levels of D3 will not only lead to ill health but leave you more susceptible to many illnesses . It is not advisable to take calcium as a supplement with D as this can then lead up to high calcium levels. And please do not take supplements that include calcium in the supplement. Although some levels of calcium are needed for the bones and teeth enough of this is mostly provided through a good diet. Remember many children now suffer from rickets due to not being allowed into the healthy sunshine because of the scare on skin cancer. The result is low levels of D3, soft bones and ill health for many children, and there have been cases of children that have died as a result.
For six months of the year the sun is not strong enough for your body to make vitamin D3 here in the UK. And in a bad summer such as we have had, coupled with the fact many work indoors, or do not go out a lot means many will be very low in D3 all year. Recent research has shown that having a good level of D in your body will help to protect you from flue, colds, cancers, and many other illnesses. It is of course up to the individual to decide if it is for them or not. Although I myself have taken 5,000iu of supplement every day of the year for three years now with no ill effect.
I had sarcoidosis in the lungs in my 20's, and still have a couple of nodules in there apart from emphysema. It is quite right that there is a school of thought that those with sarcoidosis should avoid vitamin D. However, a word of caution. Vitamin D is essential for every single cell in the body. And has now been found to be so important that is is now found without it you would become so ill you would die. My advice is to do your own research, as I have, and come to your own conclusions. Although I am sure you will be amazed by what you unearth
even the plants have suffered from inadequate daylight - not just sunshine - this summer.
Like derrylynn I started taking VitD3 a few years ago after my copd diagnosis. I think we were pretty much considered 'mavericks' back then. I remember reading research paper after research paper citing the benefits of having good vitD levels, and the issues associated with consistently low levels. Not only that , but it is now believed that levels previously considered acceptable here in the UK should in fact be raised to almost double what they are now. The current recommended levels were set just high enough to prevent Ricketts, but it has since been realised that it should set much higher using general good health as a guideline rather than just the absence of Ricketts.
When I mentioned my concerns about vit D to my GP back then, he just took the view that I had been listening to 'health freaks' and that vitamin supplementation was just a money making scheme, he wasn't about to test me - I didn't have Ricketts - why should he? . In order to get tested I joined a five year study as this included getting tested. I have six monthly tests (using a self test kit) and send my 'blood spot' back to the U.S. I also fill out a six monthly questionnaire about what I have eaten and roughly how much time on average I have spent outdoors. I am 3 years into the study.
My D levels when first tested were 14 nmol/L. This is classed as a severe deficiency. For most people a rise will be seen after supplementing daily for 3 to 6 months. For those of us at more severe levels it can take longer. I made the mistake of not supplementing through the summer months and my levels dropped again. It is not as simple as staying in the sun - it is now thought that COPD itself plays a part in Vit D deficiency - or vice versa. We have a bit of a chicken and egg situation at the moment - did low D levels contribute to our getting COPD, or does having COPD cause low D levels? The jury is still out on that one.
One thing I will say is that I felt a difference within a week or so of starting my D3 and felt it helped me improve my exercise performance. Of course that is not a strictly scientific observation as I also started taking co-enzyme Q10 and a multi vit and mineral drink at the same time. I had drawn up my own 'health maximising plan' along with my exercise plan. Over 3 years my 'plan' has taken me from being unable to put my own coat and shoes on to going on 5k walks. My copd is just as severe as it always was, the lung damage is still there, but I function a whole lot better. I still take 10,000iu D3 a day. I recently added 500mg research grade Resveratol to my plan, but at £75 for 2 months supply I will not continue with it unless I see a definite difference to my health. I will keep you posted on that one!
For anyone who doesn't have an amenable GP, you can now get tested by post here in the UK - (they have begun to realise that people like derrylynn and myself are not stupid after all). I am sure there are many Labs offering tests but I give you this link just as an example and because they test for the NHS and are hospital based. You will also find some general info there, FAQ's etc.
Oh dear I've been taking calcium tablets as well as VitD3, I will stop the calcium. Although when the doctor prescribed Calcium I did mention I was taking Vit D, he didn't say anything about any harm in taking the two together just that I was wasting my money.
If your GP has prescribed Calcium because you need it then continue to take it. Calcium prescribed for osteoporosis usually already contains vitamin D as well. If you are wanting to take extra vitD then you can always be tested to see if you need it. No one has suggested you stop taking a prescribed product. We are each responsible for our own health, our own actions. What we have been doing here is recount our own experiences, our own decisions and our own opinions. It is up to you to form your own decisions about how you handle your own condition. For most of us it is an ongoing process - for conditions like copd, ipf etc. no one has the answers - there is no 'cure' only best management, and we may, as individuals, try various avenues in our search for optimal health. You have to decide, along with your health advisors, on how you wish to look after yourself. As much as I benefit from vit D I certainly didn't 'jump on the bandwagon' just because others took it. There are hundreds of supplements out there that various people take for various reasons. You should research your own condition, your own current health status, and make and be responsible for your own decisions along with any treatment you are having form your doctor. P.
PS. incidentally - I recently read that steroids - including inhaled steroids - do play a part in depleting vit d levels.
Both Derrylynne and Parvitti have mirrored my own experience with Vitamin D. I read an article which said that research showed that people with COPD are more likely to be insufficient in Vitamin D. When I asked my GP about it he said that I should ignore advice that was given on the internet. He got upset when I responded "What even NHS Choices".
Anyway he wouldn't test me and I went to the web site previously mentioned above -vitamindtest.org.uk had a finger prick test at home and that came back as severely deficient with a reading of 10.2. I went to my GP again , he was suitably embarrassed and did his own Vitamin D test, Parathyroid and bone density (calcium) and the Vitamin D was low.
He gave me a starter dose of 6,000 iu of Vitamin D3 a day for a month and then 1000 iu thereafter. After 3 months I was up to a reading of 50. A lot of the muscle aches and tiredness seemed to go away although no significant difference to my COPD. Since this time I have changed my GP (this was the straw....).
As I am also Hypothyroid I aim to get up to the recommended level of 80 and now take 3500 iu a day and will test again in a few months time. When there was some sun around this year I did go out for the maximum of 20 minutes with my shirt off (not a pretty sight). This can get you a dose of 20,000 iu, but you can't use sunscreen.
More and more is being found out almost as I speak about the wonders of Vitamin D and its not just about rickets.
If you are low in calcium then definitely you should take it. First though get a blood test because your levels of calcium are in a very narrow range and taking excess calcium is no good for you. BTW I am not medically qualified just life's expereience.
thankyou David for your comments. I have been taking Vit D for ages, my doctor put me on a maintenance dose of one 5mg steroid so also prescribed calcium tablets (which also have Vit D), I told him I was already taking Vit D but it didn't seem to bother him other than I was wasting my money, I had seen it on the NHS site but didn't say anything to him. Anyway my hair started shedding, blamed it on the steroids and didn't feel any benefit from them so stopped taking them but carried on with the calcium, so I think it would be OK to stop the calcium now I'm not taking steroids. Got a medication review shortly so will discuss it.
Having a blood test along with a DEXA scan convinced me that extra vitamin D was going to be part of the treatment for the whole of me not only my lungs which is often all my consultant has time for.
I asked my GPabout it and he prescribed Adcal D3. He said he was not convinced of the benefits but it wouldn't do me any harm!
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