A newbie question about vitamin D3

[Indigo2417]

Before discovering compression fractures due to osteoporosis, I was taking various vitamin supplements. ( this is going to sound like I’m a hypochondriac, but I was trying to stay healthy). I had Garlic tablets, Glucosamine& Chondroitin, vit B, vit D3 and zinc. After my DEXA scan, my old GP put me on Alendronic acid and Calcichew D3 Forte. She told me to stop taking the Vit D which was 25 micrograms. The Calcichew has 10 micrograms of D3. So I’ve been on less D3 than I was before. My question now is, because of PMR I’m now on Pred 15mg at the moment, do I need to have more D3 to compensate? I’m going to try and speak to my GP, but would like some other knowledgeable opinions beforehand.

Can you have too much D3?

P.S. I do try and eat a healthy diet as well.

[SnazzyD]

I think the GP should do a blood test for vitamin D to see if your regimen has been effective. People vary as to how much they need, even with a good diet and need a higher dose than yours. Some don’t make it from sun exposure particularly well and some do.

[Indigo2417 in reply to SnazzyD]

Thanks. I’m going to try and speak to my GP tomorrow as I’ve just received a copy of the rheumatologist report after my first consultation and I want to discuss some questions with him. I just thought I’d ask for others experience as a guideline. Unfortunately, the first two GPs that I spoke to before my diagnosis were both locums and they are not due in the surgery for the foreseeable future, so I’m going to be speaking to a different one. I’d have preferred to speak to one of the other two so that at least they had some prior knowledge of my case. Will have to make the best of it. Thanks again.🙂

Am also going to ask about vit K2 as I’m not familiar with it.

[SnazzyD in reply to Indigo2417]

My Rheumatologist had never heard of K2 and neither had my GP but there’s plenty online.

[Missus835 in reply to SnazzyD]

K2 is ths supplement which helps calcium and D3 from the soft tissue to the bones. I take D3 3000 mg and K2 (MK7) plus D3. I also have osteoporosis. Just had vertebroplasty done yesterday. Still waiting for Zolendronic Acid infusion, but wishing I could have tolerated the AA pills.

[Sharitone]

I have 10μg with my NHS calcium, and 25μg in an OTC supplement every day. When my Blood is tested, the vit D is always well within the acceptable range, though somewhat nearer the lower end, so obviously I am not overdosing.

There is a quite a good discussion of it between John Campbell and Tim Spector here:

youtube.com/watch?v=Nl-73vf...(Not working as expected?)

[PMRpro Ambassador in reply to Sharitone]

Not working - for whatever reason, This one does - is this the one you mean?

google.com/search?q=john+CA...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Yep it does...

[Sharitone in reply to PMRpro]

Oh knickers. Thank you for bailing me out.

[PMRpro Ambassador in reply to Sharitone]

YouTube plus HU can be a minefield!!!!

[PMRpro Ambassador]

You do need a blood test really but there is a lot of scepticism in mainstream medicine about vit D. However - one of the things I have done for a long time is take 4000 IU vit D rather than the pathetic 800 the UK seems to think is enough. I have never taken AA or any of that stuff and my bone density after 11 years of pred was little different from at the start - the local osteoporosis guru, who before was adamant I needed something else, told me just to carry on what I was doing! I do know that 800mg vit D will result in my blood level falling slowly over a period of a year or so until it is no longer in the ideal range but skirting on deficient.

This woman is a bit evangelistic about vit D but she put this link up recently and I was really impressed by it and saved it in case it was useful:

womenshealthnetwork.com/nut...

Don't tell her - just take the extra,

[Indigo2417 in reply to PMRpro]

Thanks to all . I was put on Alendronic Acid as recommended by the specialist who did the DEXA scan in July 2021. She also asked surgery to get X-ray done to confirm what had happened. It turned out I’d got fractures in Thoracic vertebrae 8,9,10 and 12 plus a mild compression on L1 likely to be due to fracture on end plate. T score on L2,3 and 4 was -3.6 and total hip -2.5. I also have a family history of osteoporosis from my mother. Will have a look at link, thank you.

This was all before PMR this August.

[HeronNS]

Most people are unlikelyto get too much Vitamin D. The sun does not poison us! Normally the body will only activate the Vitamin D it requires. The exception I know about, and only because I have this condition, is in sarcoidosis, where the disease causes too much D to be activated, and in this case restricting the amount in supplements is necessary. A dose of 10 mcg is rather low (=400 IU), especially if you live at a latitude where you don't get sun all year round. Also older people are less efficient at creating their own Vitamin D from sunshine.

[Indigo2417 in reply to HeronNS]

Thank you. I think I’ll just take the extra supplement. We do get the sun in Wales, but I don’t think we get enough to get the vit D from it. Especially in the winter. It’s certainly been much in evidence this week.

[PMRpro Ambassador in reply to Indigo2417]

You don't get it between September in May even in the south of England! I live just north of where you are supposed to be able to make it all year round - I obviously don't! And pred depletes vit D in the body.

And it does rain a lot in Wales - I lived on the borders!

[HeronNS in reply to PMRpro]

According to a site I just looked at the latitude where one can get enough D from sunlight year round is between zero and 35 degrees north or south. I think we've already lost it for the winter where I am at about 45 degrees N. (September for future readers)

I think this is why they put Vitamin D into our milk, although it's a rather miniscule amount. Maybe enough to prevent rickets in children but not enough for optimum health?

[HeronNS in reply to Indigo2417]

It's a good idea to have your D level checked at least once to see if it's at a normal level, perhaps in late winter or early spring when it may be at its lowest. I believe it's now thought that former recommended level is a bit low. This is a rather fun and useful site:

vitamindsociety.org/

[piglette]

With too much vitamin D it is possible to get vitamin D toxicity called hypercalcemia (greater than 375 nmol/L or 150 ng/mL) which is a build up of calcium in the blood. It is unlikely for most people though I would have thought

[Grammy80]

Snazzy's recommendation for a blood test sounds like a great idea. Then you will know where the D stands. I've had a deficiency since my 60's and my dosage has varied based on my bloodwork. I have two complete blood profiles every two months because of other meds I'm on.💞

[Indigo2417]

Thank you everyone for your advice. I have got a telephone consultation with a GP to discuss the report from the rheumatologist, so will bring this up amongst my other questions.

I watched the video and read the article. Lots of information. I didn’t know there was so much controversy over it.

[Indigo2417]

So I’ve had my call with the GP and feel in need of a rant. I’m so disappointed. The rheumatologist asked the surgery to arrange a chest X-ray, a serum ANCA test and a further CRP test. Go asked why the rheumatologist hadn’t organised it. I said I thought it was because I’d have to pay for them to be done privately. Go said it should be part of consultation. What is he talking about???? You have to pay for everything. He says he will check up and get back to me. Asked about Vit D in view of the fact that I was taking more before I went on Calcichew and now I’m on Pred should I be taking more. He said no, you’re on the standard dose. Asked if I could get Vit D level tested. The lab won’t test for it. Asked about shingles jab. I’ll have to phone up to find out when I’ll get it and they have guidelines to follow regarding who gets it and when. Phoned reception and apparently because of when my birthday falls I’ll be due next year, but I might get one if I ask and they have overstocks. And so, I felt very stressed. Have done a breathing meditation to help me relax, but I’m still feeling disgruntled. Sorry for the long rant.

[PMRpro Ambassador in reply to Indigo2417]

You can get vit D tested privately, Superdrug online do it for £36

onlinedoctor.superdrug.com/....

and it is slightly cheaper here at £31:

vitamindtest.org.uk/

Being on the "standard" dose doesn't mean it is the RIGHT dose!!!

I'm pretty sure that since you are on pred and have an autoimmune disease, you qualify younger for the new shingles vaccine - all the info is in the FAQs I think.

[Indigo2417 in reply to PMRpro]

Thank you. I’ll look into it. Will it affect the test if I’m on medication, do you know?

[PMRpro Ambassador in reply to Indigo2417]

Not that I know of - what are you on?

Did you see the bit I added, didn't expect you to see it so quickly!!!!

[Indigo2417 in reply to PMRpro]

Hi, thank you. No I didn’t see the extra bit. Alendronic acid, Calcichew D3 Forte, Lansoprazole and Naproxen. GP said I didn’t need the Naproxen now that I’m on Pred. I mentioned about getting shingles jab earlier because of PMR and being on steroids and he said I couldn’t catch shingles from anyone else as it’s already in my system. I knew that already, so I said as I had a bad bout last year I might be more at risk of getting it back again. That’s when he said they are operating under tight guidelines and I’d have to check with reception. I just got a bit wound up and I gave up.

[PMRpro Ambassador in reply to Indigo2417]

I cannot believe how stupid that GP is showing himself to be!!!!!!! There are ads everywhere about getting the shingles vaccine to reduce the risk of both developing shingles and post-herpetic neuralgia - why does he think the vaccine is there? It is to reduce the resurgence of the virus that causes shingles.

[Indigo2417 in reply to PMRpro]

I suspect its something to do with the surgery being managed by the health board and not an independently managed one.

[PMRpro Ambassador in reply to Indigo2417]

Very possibly - but it is the government/health boards recommending the shingles jab. And HIS opinion was just totally incorrect. You are left to wonder what else he doesn't know.

[Indigo2417 in reply to PMRpro]

Have booked a call back for before my current steroid prescription runs out and am hoping I get a different GP. Am also going to try and follow up to see if they have any overstocks when they do the shingles jabs.

[PMRpro Ambassador in reply to Indigo2417]

Have you looked at the links in FAQs - has all the details and it is handy to be able to quote government policy!!!

[Indigo2417 in reply to PMRpro]

Sorry for the late response. I did find the reference to the new extension to the age range for the shingles jab on NHS Wales website earlier. It said it was being introduced in September this year. It didn’t dawn on me until hours later after I’d spoken to reception that maybe they hadn’t had the memo. That could be why they told me it was dependent on my birthday. Being 69 this year I wouldn’t have been eligible under the old guidelines until next year, but the new guidelines have extended it to 65 and over. So I am eligible due to age anyway. The reason I can think for their response is that they haven’t received the new guidelines yet. Seems incredible, but I can’t think of anything else. I’m going to have to check next week to see if they have arranged for the chest X-ray and sort out the other tests, so I’ll chase it up again then. Am going to send for one of the VitD level tests too.

[DorsetLady PMRGCAuk volunteer in reply to Indigo2417]

The reason I can think for their response is that they haven’t received the new guidelines yet. Seems incredible,

Unfortunately, it’s seems from comments on here the health system in Wales struggles on many points….. ☹️

[Indigo2417 in reply to DorsetLady]

Unfortunately, it does seem to be the case. It does feel like wading through treacle sometimes.

[Maisie1958 in reply to Indigo2417]

Morning Indigo2417 I’m 65, and thought I’d be able to get the shingles vaccine now but reading the guidelines- they are doing people that are going to be 65 or 70 in September onwards first . I guess they just can’t cope with doing all the 65 year olds and upwards now so I will have another 4 years before I qualify as it stands now. They are calling people after their 65th or 70th birthdays and not those in the middle atm. Probably change again shortly and Nb I live in England so this could be completely different in Wales .

All good wishes.

[Indigo2417 in reply to Maisie1958]

Thank you.

[PMRpro Ambassador in reply to Indigo2417]

Or they got them and immediately consigned them to File 13! There have been a LOT of things where we have read the latest guidelines and practices haven't!!!

[Indigo2417 in reply to PMRpro]

I shall persevere.

[PMRpro Ambassador in reply to Indigo2417]

And hopefully overcome. But do push the autoimmune disorder/suppressed immune system aspect too.

[Maisie1958]

gov.uk/government/publicati...

This is for England though so not so helpful sorry

[Indigo2417 in reply to Maisie1958]

Thanks. I did find it on NHS Wales, but that seems to be in theory. In reality it appears to be different.

[DorsetLady PMRGCAuk volunteer in reply to Indigo2417]

Well print this off and highlight the comment about weakened immune system -

phw.nhs.wales/topics/immuni....

NHS Wales Shingles vac

[Maisie1958 in reply to DorsetLady]

The thing is very/severely weakened immune system is quite tightly defined in the magical “Green Book” in England anyway- still over 10mg Pred, biologics, etc . I’m officially only on 15mg MTX (off Pred and fine on 12.5mg MTX ) so I wouldn’t qualify. Obviously get back to GP asap if one does x

[Maisie1958]

trying to add this.

Screen shot

[Indigo2417 in reply to Maisie1958]

It seems to hinge on whether they regard me as immunocompromised. The thing is, I had shingles for two months last year and it was pleasant. I don’t particularly want another dose.

[Maisie1958 in reply to Indigo2417]

I haven’t had shingles - yet 🤞! And certainly don’t want to, you have my sympathy. Friends that have had it been in agony. That’s why I wanted to get the vaccine soon but I definitely don’t officially qualify atm. I’d definitely get back to the surgery if I was you. All the best x

[PMRpro Ambassador in reply to Indigo2417]

UNpleasant I assume you mean?

[Indigo2417 in reply to PMRpro]

Yes. Typo error. It was awful and I don’t want it again. That was the second time around. First time when I was a teenager, it was quite mild, but last year it came back with a vengeance.

Will post an update with further developments.

[Indigo2417 in reply to PMRpro]

Hi PMRpro. Finally and update. I got a call last week from practice nurse to say I am eligible for the shingles jab, but I couldn’t book it because I’d got Covid. Have now got a negative test and rang to surgery to get blood tests and jabs all lined up. Have booked for blood test at beginning of November. Thought I might be able to get a jab in the same visit. No way. Have to phone at the end of the week regarding jabs as their schedule is not online yet. Also, after having been told the chest X-ray advised by the rheumatologist, had been requested, got a call from an admin at the surgery to query why it was requested. This is a month after the rheumatologist wrote to the GP. They say if there isn’t a clinical reason, the hospital will refuse it. So I’m now chasing after the rheumatologist’s secretary to get a clinical reason for them to put on the paperwork. I’m trying to stay calm. Also an update on my vitamin D. I got a test done and I’m 61.7 (vit D3 = 59.9 nmol/L vit D2 = 2.8 nmol/L. They say I’m in the adequate range. I made a mistake in calculating what my supplement is because I didn’t take into account that I’m taking 2 Calcichew a day. So I’m having 20 micrograms a day.

[HeronNS in reply to Indigo2417]

If you've had covid, and especially if you have some sort of lingering symptoms (cough, discomfort in chest, feeling that you aren't getting enough breath,etc) that is reason enough to have a chest x-ray. My husband post covid had a serious chest infection which required two antibiotics (simultaneously taken) to clear. But he has had a tendency to chest problems all his adult life. Later a "nodule" was discovered through an MRI (think that was the type of scan), invisible to x-ray, but follow-up show that has cleared, and he has also stopped complaining about a pain in his chest. The reason he asked for the scan was because his sister-in-law (who is a cancer patient) developed tiny blood clots invisible to x-ray in her lungs post covid. She's fine now, btw. Covid can do a lot of damage so having had that is reason enough for the chest x-ray even if the doctor chooses not to mention it, but only whatever residual symptoms you may have. Too bad "health" "care" systems around the world are deeply into minimizing SARS-CoV-2.

Take care. 🍀

[Indigo2417 in reply to HeronNS]

Not going for blood tests until 1 Nov, so I should be fairly clear by then. Have still got to wait to find out when I can get the Covid and flu jabs and then the shingles. The rheumatologist said he recommended a chest X-ray as I have sinus problems, but apparently that was not considered a sufficient enough clinical reason. ( I mean, he’s a specialist in his field. What is his knowledge compared to a practice manager) Not that I’m being sarcastic or anything.

[PMRpro Ambassador in reply to Indigo2417]

Baseline x-rays are also essential to monitor some drugs. I think you are being quite reticent. It infuriates me when GPs countermand consultant instructions without discussion.

[PMRpro Ambassador in reply to Indigo2417]

If all you are taking surrently is the Calcichew, I would add what you were on before - Calcichew 2x daily is 800 IU/20mcg. I take 4000 IU daily, Adequate isn't the same as optimal!

[Indigo2417 in reply to PMRpro]

Good advice. I was taking 25 micrograms before being put on Calcichew and the GP told me to stop. I was bothered that with being on Alendronic Acid and Lansoprazole, they would be working against the Calcichew.

[PMRpro Ambassador in reply to Indigo2417]

No, if you are on AA you NEED the Calcichew, AA sequesters calcium to the bones and that can leave the blood and soft tissue calcium levels low - and that isn't a good thing for most people. But vit D is also needed - I;ve been on pred for 14+ years, no AA or the like, my bone density has barely changed. I put it down to the vit D.

[Indigo2417 in reply to PMRpro]

Yes, I understand about the Calcichew. I was put on that and AA due to osteoporosis. Prior to that I’d been taking a vit D supplement of 25 micrograms, but GP told me to stop that. I always felt that maybe I should have carried on with it, but wasn’t sure how I could get my level checked. It wasn’t until PMR came up and I found this knowledgeable group that I started looking at it again. I have been learning such a lot since reading the information on here and also Kate Gilbert’s book. I am going to start taking the supplement again because at 61.7, I’m at the lower end of the adequate range. With regard to the X-ray, I think the surgery took offence because I went for a private consultation and were trying to say that the X-ray and the blood tests should have been done privately as well. I did explain that I only went for a private consultation because of the 2 yr7mth wait on the NHS, so the person I spoke to asked me if I was refusing to go back and get a clinical reason for the X-ray. Staying quite calm, I said I wasn’t refusing, I was just explaining the circumstances. I don’t want to be labelled as Mrs Difficult Patient, but I am not going to be brow beaten.

[PMRpro Ambassador in reply to Indigo2417]

And was the person you spoke to what used to be known as a receptionist? They seem to have far too much power for their level of education these days ...

[Indigo2417]

I got the impression that she was part of the practice management. Anyway, the rheumatologist’s secretary got back to me today. Bless her, she’s at home having gone down with COVID, she nevertheless replied to my email. I now have a clinical reason ( Wegnere’s granulomatosis, anyone? ) I have left a message for the person to call me back when she comes out of a meeting. However, I have a rare face to face appointment with a nurse practitioner tomorrow, so if she doesn’t ring me back, I won’t bother with her anymore and I’ll raise it tomorrow. I’m now going to consult Wikipedia as this is another medical term that I’ve never heard of. Have just been on Wikipedia and it doesn’t sound too wonderful. Will try not to think about it too much, because it might not be the case.

[PMRpro Ambassador in reply to Indigo2417]

It is another form of vasculitis and you are right, it doesn't sound too wonderful! However, I hope the rheumy is just ruling things out rather than suspecting it. If it is that, it will be good you went private rather than waiting for the NHS because it should result in an emergency referral to the NHS to get the treatment as quickly as possible which, when started early usually results in remission.

And do not be browbeaten!

[Indigo2417 in reply to PMRpro]

I’m thinking along the lines of ruling things out. No return phone call yet, so I think I must be at the back of the queue. Thankfully I have the face to face appointment tomorrow. I’ll go in with a shopping list.

[PMRpro Ambassador in reply to Indigo2417]

Does the private rheumy offer a transfer to their NHS list? Some do once they have initiated something.

[Indigo2417 in reply to PMRpro]

I don’t know.

[Indigo2417 in reply to PMRpro]

Not sure if Rheumatologist does NHS. When I asked him if I would need to go back and see him he said no. An update on my chest X-ray, I went to see a nurse practitioner for my face to face appointment today and was overjoyed to get someone prepared to sit and listen and discuss my situation. She is going to process the request for my chest X-ray. She too was of the opinion that it was to rule out the Wegenere’s thing. She said I couldn’t have my Covid jab for a month after having Covid, but have now got my Flu jab booked in. She advised to space out the Covid and shingles jabs so as not to overload my system, as I’ve read on here already. Had quite a long consultation and was able to ask a lot of questions too, and as a result feel things are going a lot better now.

[PMRpro Ambassador in reply to Indigo2417]

Unless he is in Harley Street he almost certainly does NHS. Very very few don't,

Sounds as if that NP is the person to see in that practice! If they are out of their area of expertise they fetch the duty doc anyway.