Vitamin D, I saw the specialist, and DLA(ATOS) doctor visit

At our local hospital we have all sorts of specialists it seems. Today I saw one who leads on vitamin deficiency and I'd been referred to him by my chest clinic specialist. I had had some blood tests done and they showed that my Vitamin D level was low.

He's looked at the test results and my notes and tells me that there is no problem with going back to taking D3 on a regular basis, although I've to change from the tablet type, which have added calcium, to a gel capsule type which has none.

I am now on a register to have my blood tested regularly, so he can check what level of D3 is in my body and that I'm not going to poison my system or anything like that. In my case he's all for it as I don't eat cheese or yoghurt, which would be a natural source. He's suggested I look at alternative natural sources, so liver, egg and fatty fish (omega-3, not deep fried!) are on my hit list.

He's also sending me for a 'bone scan' as he wants to check for potential osteoporosis.

I've also had a call to arrange a visit from a doctor employed by ATOS to visit me in relation to my DLA application. I mentioned in a previous blog that it seems I have already gained a couple of steps up the ladder because they are coming to me. I didn't have to ring up to change an appointment at their centre or anything.

He will be here on Tuesday afternoon for about 15 minutes I'm told. Just what he will do I have no idea at present. I wasn't asked to do anything special

29 Replies

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  • Hi Gordon, I was wondering whether or not to get vitamin D, but I do eat a lot of eggs, liver and fresh oily fish, so I won't bother with the vitamins, I find all your comments very helpful, so thank you. Hope all goes well with the DLA, Chopsticks

  • Although there are a lot of suggestions that Vitamin D supplements are good for COPD sufferers, I think the best suggestion would be to ask for a test, as I've had, to make sure it is beneficial.

    I don't eat Cheese, Yoghurt or similar, something I've had a dislike of from a very young age, although I don't know why. I've always put it down to being told they were made from milk that had 'gone off', or it could be the taste I'm not keen on.

    I didn't like eggs for a long time, which I know was down to a school project where we raised 250 chicks, and they ended up as the school Christmas dinners... 6 months of collecting eggs from a not-too-pleasant-smelling shed then plucking them, we were not allowed to watched them being killed. I don't mind boiled egg in salad or a scotch egg, I eat cakes and pastry, but still can't face a fried one.

    As we keep telling each other, we're all different...

  • Good luck for Tues Gordon.

    Karen

  • I take vitamin D every day. I had a blood test and my level was "deficient" so I was put on a very high dose for 30 days and then had another blood test. Now I take a maintenance dose every day. Too much vitamin D can cause problems.

    Good luck for Tuesday.

    Judith

  • Good luck with the dla Gordon.

    Another way to top up your levels of vitamim D is being outdoors more.I know its difficult when the weather is cold but 20 minutes a day is the recommended level.

    Let us know what happens about your dla.

    Bev x

  • That's one of the problems of having chest infections, you get put on antibiotics like Doxycyclin and it says stay out of direct sunlight!

    In the UK at this time of the year there isn't much benefit of the sun to be had, according to the consultant I saw - he suggests 3 months in the Bahamas, but wouldn't give me a prescription for it.

  • Shame! I could do with a prescription like that...

  • I think I've said this before but where someone is diagnosed with a vitamin D deficiency it is essential to try a bring that level back up to normal and above. Vit D deficiency means you are more prone to other health problems. My doc recommended my vit D3 supplement, vit D in food is not enough if you are deficient. In addition we have had a lousy summer with less opportunity for sunshine exposure, more difficult for the body to manufacture vitamin D. Levels need to be boosted during summer months to last us through the winter months. The body cannot manufacture vit D with sunscreen or other cream on the skin.

    livestrong.com/article/8599...

  • Now I am more confused than ever - do I take Vit D3 or not. At the moment I am taking them and have stopped the calcium tablets because I don't take steroids any more.

  • Hi libbygood, I read that Vitamin D was a good supplement, there had been research done in America which seemed to suggest that COPD patients were deficient in vitamin D but then having continued to read, further research in the UK has shown that many of us are vitamin D deficient. I started to give my husband a supplment of vitamin D3 - and this certainly seemed to have helped him. He seems to be less prone to colds etc. Yes an overdose can cause problems but given the dark days, and dark days to look forward to !!! through winter, it might be an idea to keep taking it until we can get some sun!! Take care, good luck. TAD xx

  • Meant to say that I don't eat eggs, liver, sardines etc. not much milk, no yogurts but do take cod liver oil capsules

  • Yes I have decided to carry on with my Vit D3. Grandchildren came last Friday for long weekend, they had coughs and " I've got a pain Mamma inside my neck" ! as yet (touch wood) I havn't gone down with anything - so maybe the Vit D3 helped.

  • Just found this link which maybe of interest:-

    naturesbest.co.uk/free-advi...

    TAD xx

  • Its great that they have lots of facilities where you are Gordon albeit difficult to get there. Don't know if its just because its Scotland but there doesn't seem to be a lot going on for copd barring G.P.'s surgeries ( there is nobody seems to encourage anything more than the yearly spirometry testing). I realise the free prescriptions are a boon but they don't appear to spend much money on follow up treatment so thank heaven for this site with people like yourself and BLF who can give varied and easy to read information and instant help when the various worries crop up. Helps to alleviate the anxiety which seems to go hand in hand with the illness. Good luck on Tuesday! xx

  • I agree with you lavender1. I live in Scotland as well and was diagnosed with copd last october. I was given 2 inhalers ,told they were on repeat and that I would be sent an appointment to go back and see them in a year at the chest clinic. When I mentioned to my doctor that I didnt have my appointment in yet I was told it would probably be feb or march that I would be sent one for. The only thing that seems to be encouraged up here is giving up smoking trying to get any other info. is terrible.

  • Gordon go to benefitsandwork.co.uk there you will find out exactly what the ATOS Dr's will be asking, remember they are sent to "stop" you getting DLA (Govt have given them 40 million for this) lots of information on this sit, good luck for Tuesday, oh and exam should take much longer than 15 minutes, they go through the form with you so have your copy in front of you so nothing is missed, tell them if you have to do things a certain way etc,

  • I would have hoped they would take more than 15 minutes to fully assess me. The OP from the council took an hour, just for a blue badge. I'm aware that this doctor is ATOS employed and is out to give me a zero score if he can. I'll certainly not be jumping up to offer him a cuppa, put it that way.

    I have the application form in computer format and can drop that to the Kindle to have to hand if needs be. I have been keeping tabs on the Benefits and Work site for some time, and I was getting the emails they sent out, but they stopped them after so long. I can't afford to be a member though.

    Obviously, I don't get the decision the same day, so I'll not be writing much about it on Tuesday, after he's gone.

  • Good luck with your applicdation Gordon. Just wondered if you know why you were told to take Vitamin D without Calcium as I thought they went hand in hand and you needed both for them to be properly absorbed.

  • It's because this consultant wants to check my bones first, he's unsure if I have osteoporosis or if I need the calcium. When I told him I was taking the D3 tablets that contain Calcium he advised me to get the gel capsules instead. I took it the topics were related and he would advise me more when he's got further results. He's the doctor...

  • That is interesting Jackdup because when I was given calcium tablets they included 400 ? Vit D3 in each tablet.

    I agree with lavender you do seem to have alot of facilities and clinics etc. Gordon, all I have is the local surgery and thats it - different counties ?

  • I'm in Doncaster, South Yorkshire - although it used to be the West Riding before they messed the boundaries about. I found that out when I went back to work in West Yorkshire and needed two different monthly bus tickets to get there, £100 a month then, hate to think what it is now.

    Doncaster & Bassetlaw Hospitals are a NHS Foundation Trust, they were one of the first to get that status. They cover a big area of South Yorkshire and North Nottinghamshire, hence the wealth of facilities spread over three main hospitals. I know, because I've been hospital badged for almost 10 years now through my work on hospital radio there. :-)

  • About 6 months ago I read on Thyroid UK (as sister site on Healthunlocked) that those who suffer from COPD are very likely to be deficient of Vitamin D. I got myself tested privately for £25 (my GP was not interested). The test showed me severely deficient with a reading of 10.2.

    The test results did make the GP sit up and he made excuses but in the end I got another test for Vitamin D, Parathyroid and calcium (Bone Density). It was confirmed (my calcium was OK) and I got a prescription for 6000 iu daily of Vitamin D3 and then a maintenance dose 1000 iu a day thereafter. Two months ago this was adequate at 70. Since I also have an Underactive Thyroid it is suggested that you should be 80+. I am now taking a total of 2500 iu a day to top up and compensate for lack of sun. I am less achy and have managed to avoid most colds and sniffles.

    Apparently if you live in the Northern Hemisphere then the sun is only really effective from March to October (for Vitamin D purposes). During summer you need to get your shirts or blouses off for 20 minutes without a Sunscreen. This I am informed will give you 20,000 iu of Vitamin D3.

    I would suggest that you avoid those Vitamin D tablets that contain calcium because your body's tolerance for calcium is very narrow. I would suggest you get tested for your blood Calcium before you take them and then only on the advice of your GP. There is a lot of talk these days about maximum levels of Vitamin D3 you can take (I have heard of 40000 iu a day!

    I would like to stress that I am not qualified medically in any way, just lifes experience of trying to keep well.

    regards

    David

  • Thanks David,

    I suspect that's what my consultant thinks. I need the D3 but not the Calcium. I was taking 1000 IU with Calcium in tablet form, now I'm going on to 3000 IU gel capsules until my next test. These are £4.99 for 120 ebay.co.uk/itm/200834877464

  • Thanks David, I am stopping the calcium as I've found out from this site and now your blog that you can have too much calcium, (and I'm not taking steroids at the moment), it appears from the blogs that most COPDers are deficient in Vit D3, I have a medication review next month will get it sorted.

    Libby

  • I have been taking 5,000ie of vitamin D gel capsules - no calcium, for three years all year round. No ill effects.

  • I take calcichew for oesteoporosis. A few years ago I had a suspicious mark removed from my face. The pathology came back as lentigo maligna, doc said pre cancerous but well on it's way, and some cells remained in the margins, for which I had cream which attaches itself to the cells and your immune system attacks them. At out patients the prof was saying about 90% of the folks in the waiting room were probably deficient in vit D, which I said was ironic. She asked in what way and I said because this is a melanoma clinic. I don't sunbathe and don't put sun cream on my arms, but I have to put factor 50 on my face, although quite concerned at the moment as the mark is returning and I'm not thrilled about more facial surgery. Trick is to avoid sunburn.

    Good luck Gordon with your dexa scan and also the atos doc.

  • Hope all goes well for you on Tuesday Gordon!! think you have me adding vitD to my shopping list! do you know if the sad lamps are any good for you,I don't think I had enough sunshine this year!

  • Not been around much last few days but just wanted to wish you the best of luck with Atos on Tuesday. XxBB

  • I've seen my chest clinic consultants 2-3 times, then saw a new guy, I've since found out he's the head of department. I told him about taking D3 and he was interested, but admitted he didn't know much on the topic. He arranged for some routine blood tests, plus one for D deficiency. When that came back showing a low level he passed me on to the guy who deals with vitamins at the hospital and he's arrange to monitor me etc.

    It wasn't really a private test, it was all done under the usual consultants but probably thanks to me bringing it up in the conversation. I mentioned the BLF blog site and the fact that Vit D was often mentioned as being beneficial, and how taking Doxycillin meant you were not allowed in the sun even in the summer months.

    I think the agreement was that if I was low then he'd do something about it. Perhaps your level is OK, after all, we're all different...?

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