I am only 16 months into my so far confusing life journey with AF. I am 75 and otherwise healthy, and not medicated as yet for any health condition.
However my latest AF event initiated a blood test which indicated a deficiency of Vitamin D. As seems commonplace these days, sadly I have received no contact either by text or email from my GP Surgery to explain these blood results or discuss any possible AF treatment, although I am being referred apparently to the Anticoagulant Clinic at Barts, which follows an earlier unsuccessful attempt(sic!) to refer me to the AF Clinic at Barts.
So I am turning to the helpful contributers to this Forum to try to understand better the possible significance of my low Vitamin D levels, which I also believe are not uncommon in the wider community.
Firstly, it seems my Vitamin D levels must have been particularly low as I have been prescribed 20,000 iu of Vitamin D3 for an initial 30 days, presumably to try to quickly restore a better level of Vitamin D, with the suggestion I follow this period with a daily dose of 1000 iu purchased by me.
From my previous reading of this forum, which has been my only helpful source of AF guidance (thanks for that), plus Dr Campbell's advice on Vitamin D supplementation during Covid and beyond, I understand that I should be aware that Vitamin K2 also needs to be considered.
So any help from the AF Forum will be greatly appreciated with all of the following questions, the first of which is of particular interest to me ...
(i) Does anyone have experience or knowledge of research showing that a deficiency of Vitamin D might be a major factor in the aetiology of AF? I suspect I may well have been deficient in Vitamin D throughout my 16 month history of AF, and probably before.
(ii) Is it OK for me to ingest this initial high dose Vitamin D for 30 days without the addition of Vitamin K2 to my daily regime?
(iii) At what stage in my Vitamin D supplementation should I begin to take Vitamin K2?
Thanks in advance.
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ozziebob
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Seriously it is far more important for you to get anticoagulated asap. As far as Vit D and AF is concerned I am not aware of any link. Best discuss with a pharmacist in my view.
Thanks for your reply. My regular chemist wasn't able to add anything significant when I inquired on any possible AF/Vitamin D link, but I will keep on with my search.I do acknowledge your consistent advice re the importance of anticoagulation, and I am very open to understanding more about the options available at the Anticoagulation Clinic whenever that occurs. However in relation to this I need to understand the unexplained bilateral chronic subdural haematomas I suffered in late 2016 and whether this represents a possible future bleeding risk if I accept anticoagulation. Any advice on this latter event, re anticoagulation, would be welcome. At that time I discovered the bleed (which had stopped by then) only after my left hand became temporarily intermittently paralysed. I recovered fully in the following months. I do fear however that longer & larger bleeding might have occurred if I had been on anticoagulants, and this may have been more catastrophic.
Lamberts Healthcare I believe are one of the quality suppliers of supplements with a technical department to give prompt advice. I am currently using their VitD/K2 combined spray. My understanding is that the K2 is important and unlike K1 does not appreciably add to any clotting risk.
Thanks for your helpful recommendation. I've just sent an email to Lamberts inquiring about which products and doses would be compatible with my Vitamin D3 dosages.
I think you might appreciate reading a book called The AFib Cure written by two American EPs. There are 10 systems they recommend getting into balance to assist with addressing AF. No clear aetiology as far as we know re AF. It's a mongrel condition that keeps bad company with numerous other factors.
Thanks for your suggestion. Yes, AF is indeed a mongrel, even for someone like me whose AF situation is "as nothing" compared to others. I suspect my interest in Vitamin D deficiency as a possible causative factor in my AF is of minor interest to most AF sufferers who have additional medical issues to also deal with. I will definitely locate a copy of AFib Cure to understand my situation in a wider context. Keep singing!
I did a test about a year or so ago which showed I was deficient in Vit D. I then bought some drops from Amazon, cost me about £15, which I have been taking ever since. I am currently on 3 drops a day, 3000 iu and my recent blood test showed a level of 152 nmol/L.
I did buy a bottle of K2 tablets but haven't taken them. I reckoned I got enough K2 through eating chicken, prunes and peas. A recent addition is broccoli which I have discovered I actually like! My recent DEXA scan showed I was on the border between osteopenia and osteoporosis which isn't bad considering I am 85. I feel very well.
I was wondering the other day why people sunbathe. Is it just to get a tan or does the body subconsciously tell them that it is good for them.
Thanks for taking time to reply. I do appreciate it. Sadly I do not know the levels of Vitamin D found in my blood (I wish I did), as neither my GP nor the Surgery make efforts to contact me with such results to explain matters. No contact either following my initial AF experience when I thought I was dying, nor to give me results from the 24 hour Holter monitor I then wore. I have to eventually send eConsult emails to force someone at the Surgery to respond. I just don't understand how the service seems to have disintegrated almost entirely. Recently I went to my Surgery, while having my latest AF event, to ask for an emergency ECG, as I haven't had my AF recorded yet. While I appreciated they did fit me in to their busy patient schedule, I was unsuccessful in getting an ECG because it was being "recalibrated" just at that time. At least the available GP did listen to my heart and diagnose paroxysmal AF. So that was small progress. But no ECG. At this time I received blood tests as well, which is where my low level of Vitamin D was revealed. However, as before, I received no contact from my GP or the Surgery to give me this result! The first follow up I received was the receipt of a text from my local chemist stating "your medicines are now ready for collection". As I never get texts from my chemist, and as I am on no medications, you might imagine how alarming this development was. It took a further eConsult from me to the Surgery about this situation to finally initiate a text from the GP stating that it was Vitamin D waiting for me at the chemist. Much relief at this news, as I had imagined all kinds of powerful potentially harmful heart control drugs being prescribed for me without consultation with me. But I received nothing about the level of Vitamin D found, nor any plans to retest after a few months of supplementation to check I haven't taken too much or little Vitamin D3. Doh! Don't medical staff have a duty of care towards patients!Apologies for the rant. Better out than in I suppose.
I think it's quite hard to take too much Vit D. Some people take 6000 iu so I don't think you can go wrong with taking 1000 a day. Up until last year I was taking 500 iu vit D tablets but still I was deficient. I'd been taking them for years.
But I'm taking 20,000 iu for the first 30 days. And it's of vital concern to me to know if my regime of supplementation is working or not. Apparently individuals are wildly different in their uptake of Vitamin D. It would be helpful to know my individual situation, notwithstanding (big word!) your reassurances.Physal(is) a healing plant.
When you say you've been prescribed 20,000 for 30 days, that is probably not quite correct. Do you think it should be 2,000 for 30 days and then you should buy your own 1000 iu tablets to follow on? That would make more sense.
The name comes from my growing some fuchsias from seed. They grew very strongly and I was very pleased with them. However, after my ablation, when my daughter saw them she said 'they're not fuchsias, they've got a white flower on them'. I hadn't noticed! They were chinese lanterns, physalis, and, I'm afraid, met a sticky end. I got my money back.
Well I'm definitely of "ozzie" root stock, with "bob" as a flowering head, and cannot get my money back. As I wrote in my original post, and have repeated a few times since, the first 30 days are 20,000 iu capsules, one each day. No mistake. I have them in front of me now. HuxD3 20,000 IU colecalciferol (Vitamin D3 500mcg). And vegetarian to boot. Great!
I do agree this is a high dose, which is why I started asking about the timing of any Vitamin K2 supplementation, and was concerned about the lack of any retesting plans in a few months to confirm that I am on track re Vitamin D3 and not overdosed. I will definitely try to get retested in a 3(?) months or so.
The chemist didn't raise any objections, and he must be seeing more Vitamin D prescriptions than most of us. Nanirightnow just mentioned 40,000 iu but the frequency was lost in her typos. I've asked her for clarification. Keep an eye on that.
Yes, the Directions on the box read "one capsule every two weeks or as directed by your healthcare professional". I appreciate the concern expressed now by several Forum members, but checking online even 20,000 iu per day, while unusual, isn't described as lethal. In fact it is referred to for use with patients, usually older patients, over a short period, who are especially deficient in Vitamin D in order to quickly "catch up" to a better level. But, hearing repeated concerns, I will check again with my chemist tomorrow. Thanks.
You said your Vitamin D level was tested about a year ago ... was that via the NHS or did you have to go private? I wasn't sure.With my massive loading dose of Vitamin D I was keen to be retested in 3 months say to ensure all was OK, but my GP says her CCG won't allow another test within 6 months. Not helpful that.
So I need to get it tested myself. Looking back at your previous reply, I wondered if you have any helpful info re getting such a test in the private medical market? On my first search of the internet for such a test, I only found a confusing minefield of competing claims and costs.
In your position I would wait for the six months to be up. You have been given a massive loading dose and if you just take those, even at fortnightly intervals, there is not much more to be done. Your doctor has told you to take 1000 iu a day after they have gone. These tests do cost the NHS money so they won't want to do them unnecessarily.
Mine was carried out by my doctor because he wanted to know about my VitD level before he prescribed the calcium tablets with Vit D in them. Thinking about it, that was rather a waste of money because if my levels had been low he would have prescribed them and, even though they were high, he still prescribed them!
Yes, it was just that I intend to do the loading as prescribed, all 600,000 iu in 30 days, because I couldn't get any medical advice to the contrary (with the prescribing GP now on 4 weeks annual leave), just a cautious GP sticking to obsolete NICE Guidelines at about half of my dose. But I wanted to make sure I wasn't damaging myself on the dose I am taking, preferably before I was 6 months down the line. This same cautious GP had earlier sent a text saying she was willing to authorise the follow-up Vitamin D testing I suggested, only to send another text a few minutes later saying she couldn't. No reason, but obviously CCG cost restrictions apply. Hence I'm looking for a reasonably priced accurate private pathology facility, if such exists.All advice on this from the Forum members is welcome. Thanks for your reply.
I asked for my vit d to be checked at my last blood test, resulting in me being slightly lower than is considered ‘normal’. (Gosh, I hate that word, what on earth is normal these days ! ). Then followed s simple email from the GP saying I needed to take a supplement, no mention that it should be D3 or any dosage other than I need to take it forever ! Fortunately I know a nutritionist who advised me that if taking a large dosage, such as it appears you are, then K2 is a must. I take 2000 and am not taking K2 as I can get it from food but if I increase the dosage I will add in K2. Hope this is helpful.
There's not much difference between 2000 and 3000. I get K2 from my food as well. I do take magnesium. Because my level of Vit D is 'optimal' I must be doing something right.
Thanks for sharing your experience. Please read my reply to Physalis above for some of mine. I suspect my Vitamin D levels might have been low for a long time undetected by previous blood tests because Vitamin D levels were either not assessed or missed. (Did I read that a GP has to request testing for Vitamin D levels as this is an extra cost?) I have complained about tiredness during the day for years now, which I believe can be associated with Vitamin D deficiency. At my recent Surgery visit to get an ECG, I saw a Surgery GP unknown to me, so perhaps I was very lucky to get it found at last. As she was the first GP I've seen face to face while in AF, perhaps she knew to test my Vitamin D levels. Tangalle, beautiful place.
Thanks for your advice. I will look into the correct dosages of both Vitamin K2 and magnesium that are appropriate for the dosages of Vitamin D3 I have been prescribed.
Thanks again. Do you have a fuller explanation of how these 3 supplements work synergistically? I'd rather hear your personal experience than researching about this connection online.
Not medically trained . However I understand from The John Campbell videos that the vit K 2 was necessary to prevent the high blood levels of D3 causing calcium to be deposited in your arteries. As you don't currently have high levels , in fact the opposite I suspect you have nothing to worry about until your medics are happy you have adequate levels. It may be a good idea to discuss the K2 with them when you next see them.
Thanks for your thoughts. The problem is I don't get much chance to discuss these matters with my GP, as you will inderstand if you read my longer reply to Physalis. Perhaps the east London Surgery I attend is just too overwhelmed these last few years. This AF Forum, plus Google search are the sources of my information. Do you know how magnesium supplementation fits into this Vitamin D3 + Vitamin K2 situation? or have any experience of this?
I know Sanjay Gupta, cardiac consultant, has done a you tube video on Vit D. There may be something in there that answers your question about K2 and magnesium.
Sorry I don't know the magnesium aspects to this. Again from the John Campbell videos I think he mentioned Zinc. I have subsequently been taking zinc supplements. I did not know hiw much so he bed taking 1 x 25mg every 2 to 4 days. I gave no idea if I was short on zinc or not but figured if I was a short then ao e is better than none and if I was not I would not overload myself
You are correct . I suffered a paroxysmal tachycardia . Never I had one. When I was checked I knew I had COVID . I went through the COVID without problem but the tachycardia was controlled through a cardioversion with adenosine . I had an extremely low level of vitamine D. Both the COVID plus my vitamine D deficiency was a perfect storm to generate the tachycardia. I am now under a three months treatment to recover the normal level of vitamine D with 40.000 iu dosis per months and then the doctor will see. Corollary: vitamine D deficiency is extremely negative for the heart electrophysiology system.
Thank you for sharing your experience, which seems very relevant to my situation. Very interesting. Are you taking the 40,000 iu daily for the full 3 months, or less? (your description of treatment contained typos and wasn't clear). However I am envious of your situation with a GP who is monitoring your situation re Vitamin D going forward. No such luxury with my GP as I wrote in my other replies. Regarding tachycardia, of the 6 paroxysmal AF events I have experienced in 16 months, only 2 have included periods of tachycardia at about 145 according to my oximeter. However, the longest tachycardia was only a couple of hours, so nothing like the serious cardioversion you needed. It's because of the relatively minor experience I have so far experienced during AF events that I'm hoping that the deficiency of Vitamin D found has been caught early enough to prevent the further heart damage associated with life long AF, and the powerful medications involved. Thanks again. Gettingolderrightnow.
I think she is taking 40,000 units per month which would equate to the instructions on the box to take one capsule every two weeks. That should be plenty.
You seem concerned about not getting an ECG. You could buy a Kardia or one of the watches which allow you to take an ECG anytime you want. I found my Apple watch great for this as it was so easy to use. Once I was leaning up against a wall waiting for a bus to come so I could sit down. It read an average hr of about 200 bpm. Over a period of a year or so I took hundreds of them.
I'm in the US and my Vitamin D was very low. My doctor prescribed 50,000 IUs once a WEEK for 12 weeks. I wasn't excited about loading up with that much in one dose, so I opted for 10,000 a day for 5 days, and then 2 days off, for 12 weeks, then 5,000 a day for a while and then 1,000 a day going forward. I go back to my doctor in a week or so and will have her check it to see the result. I know I needed to get the number up considerable but, just felt 50,000 IUs was such a load all at once. I'll advise once I get the results.
Thanks for sharing your interesting experience. I just replied to Physalis and her concerns about my dosage, which were expressed by others as well. Please read that reply of mine. I'm hoping that I get some resolution before I do myself any harm. And I've only taken 2 capsules (2 days) so far. Will pursue it further tomorrow, and share the results on the Forum. I would like to hear your update on this after your next blood test, with actual levels of Vitamin D in your blood if available. Unfortunately I have no idea of my numbers at this stage.
I've no reply from Nanirightnow yet, but you could be right about the dose. The consequences however of being wrongly dosed by my GP are difficult to contemplate. My relationship with my GP is difficult at best, and this would add injury to insult. As I said, I will try to question the chemist again tomorrow if they are open, but contacting my GP Surgery over Easter might sadly be beyond my talents. Gone are the days when we could blame scribbled prescription scripts being misread by chemists. It's all done by email now. I'm still hoping the dosage was correct.
Re getting an ECG undertaken, it's just that without an actual ECG recording an AF event to show my GP, I was not diagnosed as having paroxysmal AF and I felt somewhat ignored by my GP. Even after an uneventful 24 hour Holter I was told my heart was "basically normal". Go figure. Following that, my GP was also unsuccessful in obtaining the phone referral she promised me from Barts AF Clinic. I was getting nowhere.
Re the Kardia 6l, I have been tempted, but many reviews on the Kardia website report problems with their device and poor customer service, so I've not proceeded with that. Recordings would be very useful going forward, but I haven't found the device I want yet.
Vitamin D levels do need loading. Back in the 1960s experiments were done in Germany, on old people in care homes, who as a group are especially likely to have low levels. First they tried injecting, then found the oral route was almost as good. It is called "Stoss" therapy. From memory, 600,000 IU in one go, once a year. So the suggested loading of 20,000IU daily for 30 days = 600,000 sounds reasonable to me. I think you do well to raise the question.
Thanks for your info re "Stoss " therapy. Good new information for me in the context of my 30 days X 20,000 iu = 600,000 iu initial dosage. The "Stoss" references I found seem to have been mainly about children children and others with complicating comorbidities. With the current NICE guidelines for Vitamin D loading recommending much lower doses than my prescription, I have started to question the dosage in my prescription. And I am then led to ponder what possible unknown comorbidity of mine could have led the GP to prescribe such a 'Stoss-like" dosage. And because of a lack of contact or explanation from the GP about the prescription, I don't know the answer to this.So with concerns also raised by others in this forum about my high initial dosage I am planning to contact the GP who wrote the script at the earliest opportunity to try to get some understanding of her thinking. This is a totally avoidable delay, made worse with the Surgery now closed for 4 days over Easter.
In the meantime I can afford to suspend taking any more Vitamin D until it is resolved. I have already taken 60,000 iu, which, as Tony Hancock might have said, "might not be much to you, but to me it's almost a whole armful" ... or something similar.
I take 2,000 iu's of Vitamin D3 everyday, and have been doing this for years. I have very healthy levels of Vit D as a result. I started taking this amount because my PTH (parathyroid) levels were high. A high PTH will cause bone loss. The main benefit of Vit D is to prevent bone loss. It, as you likely know, helps calcium to be properly absorbed in your body. Magnesium also helps with Calcium absorption. Magnesium very important for helping to control AFib. However, if I exceed more than 3,000 iu's of Vit D3 I get diarrhea. So watch out! You should be able to get adequate amounts of K2 in the foods you eat without supplementation.
As far as a connection of AFib and Vit D, everything I have read indicate the jury is still out. A few studies suggest there is a correlation. We do know that Vit D is needed for a healthy heart, but too much can be counter productive. Balance in all things!
As someone mentioned above your first concern needs to be getting on an anti-coagulant to prevent a stroke occurring. Every time I read a post from one of you Brits, I am so grateful in the U.S. for our medical system. Why anyone would want to socialize it is beyond me?! I would suggest, if possible, calling the medical records department of the facility that did your bloodwork and requesting a copy of any records. That is a simple thing to do here. Perhaps not in the UK.
Thanks for sharing your experience. Our NHS is definitely struggling with demoralisation of staff and shortages in all areas due to deliberate efforts by our free market Govt to underfund and undermine it at every turn. So you may get your wish for complete privatisation sooner than I want. I hope not.There is a new NHS phone app here which is supposed to give patients a much more direct access to their medical records and test results etc., but I haven't joined yet, nor have many others. I do wish though that I had access to the blood details you seem to have there in USA in order to understand the deficiencies I might have. Leaving it to others obviously hasn't worked in my case as I suspect my Vitamin D deficiency has been missed for years.
I have just replied to ILowe about the current situation re my Vitamin D supplementation and the concerns I have if you have time to read that.
Re anticoagulation, it's not so straight forward as I need to consider a possible future bleeding risk, yet to be discussed with any medical staff, because not long ago I suffered bilateral chronic subdural haematomas. I have been referred to an Anticoagulation Clinic since my paroxysmal AF was diagnosed and I will raise this concern there, although I have no date for this, and in the current NHS climate, may well only be a phone consultation.
Re magnesium and the concerns you expressed, I have considered supplementation, but my diet contains a lot of easily available magnesium rich foods, so I'm not inclined to proceed with that until my understanding changes. Do you think that is sensible? or not?
I think if your diet is already rich in magnesium you should be fine. There is no need to wait on starting your vitamin D just take a lower safer dosage. Like 2-3,000 units. It may take a little longer to raise your number, but you’ll get there. When Covid first began one of the treatments they gave to patients were mega doses of Vitamin D. So you could probably handle 3-5,000 units. And I understand your hesitation to do the blood thinner. Some people simply can’t take them.
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