Vit D deficient : for the last 3 years... - Atrial Fibrillati...

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Vit D deficient

Hettyw profile image
30 Replies

for the last 3 years I’ve been experiencing peculiar feelings like the odd numbness in my hands and feet, weird almost tremblings up and down my arms, more anxiety than usual, awful muscle and bone pain in my legs and around my torso so as usual I put everything down to my AF or my hypertension. Anyway I decided to look outside the AF box and when booking pre surgery bloods asked my GP if he would tag on Vit D and B12. Well blow me over with a feather, results came back that I’m vit D Deficient so altho out and about and walking a lot my body isn’t absorbing it. Looking up the symptoms for this all pointed to how I’ve been feeling. Just goes to show. Now on a regime of VitD supplements

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Hettyw profile image
Hettyw
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Cavalierrubie profile image
Cavalierrubie

Yes, this is very important for those of us who have AF. If our electrolytes are out of sync. it can cause AF episodes. I have found deficiencies myself in the past and it can make a huge improvement when these are rectified. Now that you have been diagnosed, l would keep an extra check on this with your GP., who should give you a regular blood test. It needs to be checked, because overloading can be just as detrimental to your health as deficiencies.

Blearyeyed profile image
Blearyeyed

What were the results for your Vitamin B12 and did you also have a Folate test? I only ask because borderline low B12 or Folate are part of the cause for Vitamin D deficiency in many people , and make it difficult to increase your Vitamin D and Iron with oral supplements.

If you haven't had a Folate test I'd suggest you get that too.

It's worthwhile increasing B12 and Folate foods in your diet to increase how well you absorb your other nutrients.

If you are taking a Vitamin D supplement to help increase it , as well as increasing Vitamin D foods take it after the meal you have each day with the most fat content.

Vitamin D is fat soluble so it needs fat to be absorbed and metabolised better. Having supplements after a meal also mean they stay in your digestive system longer than on an empty stomach so you absorb more.

You do need to take care taking Vitamin D with certain medications and health issues. Make sure you space taking it at least 2 hours before or after medications and a spray supplement taken in smaller amounts after meals is often better than one big dose which can trigger some issues for some people whom must take care about taking Vitamin D.

GPs often only give an oral supplement of about 1000iu.

With a deficiency it is better to take a larger amount but in smaller doses during the day .

3000iu-4000iu daily can usually improve a deficiency quickly.

BetterYou does a spray which is ideal , you adapt how much you use subtracting the amount of your prescribed oral supplement from the total Vitamin D daily recommendation.

Make sure they do retest you after 3-6 months , especially if you are still having the same symptoms.

GPs and labs just assume that taking the supplements will automatically reverse the Deficiency, I can say with experience that isn't the case.

I was tested 3 months after taking the oral supplement and it had hardly budged at all, I have malabsorption issues, I swapped to a spray.

I wasn't allowed another test for another 12 months because " it's been treated" , the Lab wouldn't test it even though the GP tried to get it done.

NICE guidelines recommend anyone with health issues that can affect nutrients should get a Vitamin D test every twelve months.

Because my Vitamin D was linked to undiagnosed B12 and Folate Insufficiency it hardly improved at all until they were treated first.

It took nearly two years , and use of a mouth spray rather than tablet, and a year of B12 and Folate treatment until my Vitamin D was normal.

This won't be the same for everyone , but it's more likely to occur if you are also on certain medications that affect your absorption like PPIs , Antacids and drugs that affect your stomach acid so I think it's is something to be aware of.

When your Vitamin D is normal you don't require the supplement every day , as too much can be toxic and cause symptoms itself.

I do find it keeps my Vitamin D at normal levels if I still use my spray each day during winter when I get less sunlight.

In Summer I take it every three days, because I live in Wales and we aren't blessed with that may sunny days!😆😆😆

As you say deficiency and insufficiency , particularly in B vitamins and Folate , Vitamin D and Iron can all increase cardiac symptoms and cause cardiac symptoms that can be separate to your other aFib or arrhythmia issues.

That's why it's important to get them tested regularly.

Hettyw profile image
Hettyw in reply to Blearyeyed

Thanks for your comments which I’ve taken Onboard and are really helpful. Apparently my B12 and folate were normal. GP has started me on 1000iu. Wondered if it would be best to take D3 but not sure if it’ll have contraindications with my warfarin. Need to check that out as I’m not sure what the difference is between vitD and D3 supplements. If anyone has the answer to this I’d be very grateful

Blearyeyed profile image
Blearyeyed in reply to Hettyw

Vitamin D is the fat soluble form in foods .Vitamin D 2 is a produced product which is added to foods, it helps in improving calcium usage and phosphorus levels.

Vitamin D3 is the naturally occurring form made in our bodies that is produced by skin exposure to sunlight.

It is made for supplements via various processes using lanolin from sheep's wool or algae using heat and other processes to simulate the way D3 is created in the body from sunlight on skin.

Vitamin D may cause greater sensitivity to warfarin and increase it's anticoagulant properties, which means you will need to take care in the dose of Vitamin D and warfarin you take , and make sure there is a good amount of time between your warfarin dose and your Vitamin D supplement.

Auriculaire profile image
Auriculaire in reply to Hettyw

Vit D2 is the vit D that plants have. You should take vit D3 supplements. At a rate of 1000iu a day it might take months or longer to make any noticeable difference to your levels. Do you know the level from your test? Here in France they give loading doses for deficiency. This is perfectly safe - I myself have had doses of 200,000 in a vial. Our skins make much less vit D as we age.Face and forearms make very little. To make sufficient quantities from the sun active sunbathing without sunscreen is needed. This means exposing large amounts of skin - entire legs and as much of the torso as possible. I you are deficient on levels used in the UK then you are very deficient as the levels there for sufficiency and deficiency are lower than in the rest of Europe and the USA.

FancyPants54 profile image
FancyPants54 in reply to Hettyw

You can't take "normal" for an answer from a UK GP sadly. Always ask reception for a copy of your test results to be either printed out for you to pick up, or emailed to you and then you can keep them. In the UK the "normal" range of B12 is far too wide. B12 deficiency can be suspected if serum blood results are below 500. But a UK GP will say "normal" if it's within range at any point and our ranges start about 200. They rarely bother about folate either, but that's needed for good vitamin B12 supplementation.

No one seems to have mentioned about the need to take vitamin K2 with your vitamin D supplement, which is unusual. You need adequate K2 to ensure the vitamin D is directed to your bones and not your arteries. The BetterYou spray that I have seen mentioned above comes either on its own or with K2 added. I use the latter.

ozziebob profile image
ozziebob in reply to Blearyeyed

You wrote "it keeps my Vitamin D at normal levels" ... can you indicate what level is normal for you?

I am genuinely interested in your answer as research seems to give different answers and it does help me to understand the experience of others on the Forum. Thanks.

bob

Blearyeyed profile image
Blearyeyed in reply to ozziebob

I'll answer as soon as I can but my Type1 Diabetic husband has come down with Salmonella ( not from anything eaten at home) and I'm dealing with that health emergency at the moment so don't have the time to answer now.

ozziebob profile image
ozziebob in reply to Blearyeyed

I noticed you are now back and Replying on the Forum. I do hope your husband is recovering well following his recent salmonella emergency.

I am still interested in receiving a Reply to my outstanding query, viz . ...

"You wrote "it keeps my Vitamin D at normal levels" ... can you indicate what level is normal for you?".

Thanks, bob.

Blearyeyed profile image
Blearyeyed in reply to ozziebob

After blood tests my husband was proved as contracting E.Coli. He was infectious for some days prior to his symptoms. Because of this and my compromised immunity I have also contracted E.Coli. I have answered a few posts that had a more immediate need for a rely mainly suggesting contacting a GP when I've felt up to logging in from my sick bed.I realise this subject is of urgent interest to yourself, however, so I'll do the answer now as well as I can manage in the circumstances.

You can get the official ranges for NHS guidelines for various hospitals easily on the internet. Most have updated their guidelines to consider giving additional advice and support to people whom have a VitD level that is adequate , but below the optimal level of 75 nmol as suggested by the Endocrine Society,

The guidelines specify as follows.

Below 25/30 nmol/L ( below 12 ng/ml): Deficienct : requires urgent treatment

30-50 nmol/L ( 12- 20 ng/ml): Insufficiency: requires continuing treatment

50-75nmol/L ( above 20 ng/ml ) : Adequate : advice given about sun exposure, diet and supplements to continue increase in levels , higher dose supplements are no longer prescribed.

Above 75nmol/L ( above 20 - 50 Ng/ ml) Optimal : use recommendations suggested for general population about sun exposure , diet and supplements for some patients with other health issues.

Above 125nmol/L( above 50ng/ml) High : stop supplements as this is a point that adverse side effects or symptoms to high Vitamin D can occur. Advice about foods and sun exposure.

Above 150nmol/L ( above 60ng/ml) : Risk of High Vitamin D causing symptoms and toxicity , intervention and advice about stopping supplements containing Vitamin D and lowering food groups including Vitamin D and reducing sun exposure is given.

My experience falls within these updated guidelines influenced by the Endocrine Society recommendations.

Symptoms that I had that were attributable to Vitamin D deficiency and improved as my levels increased were resolved approximately 3 months before an annual Vitamin D test of 85nmol/L.

I try to maintain a Vitamin D level at annual tests now between 100-115nmol/L, my test is done in July.

My last two tests have been 113 and 109.

My adjusted supplementation allows for times of the year when my Vitamin D could drop because of ill health and lack of sun exposure but I should hopefully still be maintaining a level above the 75nmol/L range and causing a return of Vitamin D related symptoms in my individual medical circumstances. Test results and symptoms appear to be proof of my protocol working in my case.

Everyone has individual needs and need to do their own tests to ensure that they are neither getting too little Vitamin D or getting too much.

Hope this is helpful for you , if you don't mind , could you not message me for non urgent information currently, I answer back when I'm able to do so and would appreciate your patience at this time , thank you , Bee

ozziebob profile image
ozziebob in reply to Blearyeyed

Bee,

Apologies for disturbing you. I had wrongly assumed you had recovered.

And I felt extra "guilt" that you felt unable to compose just the few words that I had hoped for, and you chose to compose a medical essay of considerable length.

I certainly won't "bother" you again.

bob

Blearyeyed profile image
Blearyeyed in reply to ozziebob

I can see there was a hint of sarcasm there in the need a number of "" , but I included all the info on my experience and the research guidelines to answer your comments in both of your replies.A few words would have left more unanswered questions, hopefully you have all the info you need now to reduce confusion you have on this subject, and others may also find the details useful.

ozziebob profile image
ozziebob in reply to Blearyeyed

Yes, a very informative reply re Vitamin D for all. Thanks for that. And I will spare you the reasons for my inquiry.

Re the "" ... the "" around guilt was because I was unsure that such a feeling was exactly appropriate for me when I had innocently "blundered" into your ongoing health emergency. The "" around bother was because I was unsure what emotion my inquiries had caused in you. So I'm not accepting your "hint of sarcasm" conclusion.

Notice there are no "" around "disturbing" in my initial genuine apology to you. Surely I would have included "" there if I was unsure about that honest assessment of my effect on you.

And this inquiry has never been urgent for me, it is simply an ongoing medical interest of mine. I had left 5 days between my inquiries, and I was simply hoping not to be forgotten, both by you and me. See my Bio.

Blearyeyed profile image
Blearyeyed in reply to ozziebob

You do realise you are having a passive aggressive dig at someone whom answered your request despite having E.Coli and spending much of the day throwing up into a bucket.A simple hope you get well soon. thank you and sorry for disturbing you would have been a more caring and genuine response.

Please don't message me again. These sorts of comments are the last thing I need to see in my inbox at any time , but especially at the moment.

a241529 profile image
a241529 in reply to Blearyeyed

Bee, I certain appreciate you responding while feeling as you do. I hope you feel better real soon. Kathy

Auriculaire profile image
Auriculaire in reply to Blearyeyed

Getting sunlight in winter will not result in any vit D formation in the UK . The angle of the sun is not right until April and the further north you live the longer you have to wait for the vit D "window " to open and the sooner in September it closes. There is another reason why supplementation of vitD in the form of cholecalciferol might not work well- genetic. A proportion of the population has a genetic mutation which impairs the hydroxylation by the liver to turn cholecalciferol into calcifediol. This can be overcome by taking calcifediol directly but unfortunately it is not prescribed in the UK. Where did you get this info about vit B12 deficiency interfering with vit D absorption? You say when your vit D is normal you do not need the supplement every day. What do you class as normal ? Are you aware of how much vit D your body is using every day in carrying out physiological processes and that if you are ill in any way it uses more?

FancyPants54 profile image
FancyPants54 in reply to Auriculaire

We also can't generate Vitamin D from the sun if we don't have sufficient cholesterol in our blood and doctor's in the UK are paranoid about cholesterol and scare as many as possible to take statins and reduce fat intake. Both horribly wrong in my opinion.

Auriculaire profile image
Auriculaire in reply to FancyPants54

Yes - horribly wrong. Cholesterol also protects against infections. I read an interesting theory the other day postulating that the American population had such a high death rate from covid because so many of them take statins. I am lucky- my GP never says anthing about my high cholesterol . It goes up and down with my TSH and last blood test was 6.5. He knows how I feel about taking drugs so probably reckons there's no point in trying to push me into taking another. I'm not sure they have Q risk here - it's never been mentioned by him or my cardiologist.

FancyPants54 profile image
FancyPants54 in reply to Auriculaire

They suggested I take a statin years ago. Blood level a little higher than the average but nothing to worry about. I gave them an instant NO! and now I have "drug averse" written on my notes. 😆 Damn right!

Blearyeyed profile image
Blearyeyed in reply to Auriculaire

I just put that you get less sunlight in winter so supplementing helps in a simpler way.I'll answer your other questions as soon as I can but my Type1 Diabetic husband has come down with Salmonella ( not from my cooking!) and I'm dealing with that health emergency at the moment so don't have the time to answer now.

ChadL profile image
ChadL in reply to Blearyeyed

I live in Florida and I am Vitamin D deficient! Figured it out the hard way when I had some serious side effects... On a 5,000IU a day about 2 weeks now and most of my symptoms have vanished.. the one good thing to come out of this whole ordeal, my arrhythmia meds were lowered because they thought it was that causing my issues..it wasn't, it was the Vit D... I really did not need as a high a dose!🙌🏽

Auriculaire profile image
Auriculaire in reply to ChadL

I live in sunny SW France and was diagnosed with vit D deficiency in early Oct 2007. I could barely walk I had such bad pains in my legs. This was despite spending a good deal of time ouside all summer so my levels should have been at their yearly highest. I also took 400iu a day in a calcium supplement and ate oily fish several times a week. Since then I actively sunbathe more for the other benefits of the sun and take calcifediol drops which suig me much better . I think I am in the % of the population whose livers don't convert the cholecalciferol to calcifediol.

ChadL profile image
ChadL in reply to Auriculaire

same here, i was walking outside every day for at least 30 mins. was quite shocked that my vit D was bottoming out.. back pains, arrhythmia, low blood pressure, HR in the low 40's that's why they thought it was my meds.. i could barely walk without pain.. it was the orthostatic hypotension that i started getting that clued me in that it may be my vit D .. thought everything else, electrolytes, iron.. goodness i was a mess 🙏🏽🙏🏽

pusillanimous profile image
pusillanimous

Even though I live in Sunny South Africa , I do not sit in the sun - I just appreciate the warmth, because of this I was Vit. D deficient and my GP put my on a weekly pill called Calciferal, and it is amazing how quickly my readings normalised - I still take the weekly pill (prescription only).

Peacockmumma profile image
Peacockmumma

I take vit D in the winter but do spend a lot of time outside in the summer. Perhaps I should extend my winter taking to longer bearing in mind mr sunshine has been a bit absent lol

Auriculaire profile image
Auriculaire in reply to Peacockmumma

You cannot make vit D in the winter below certain latitudes. If in the UK the "window " when sun is at the right angle is April to Sept.

ozziebob profile image
ozziebob

Very pleased you eventually discovered the cause of your symptoms. I had a vitamin D deficiency discovered at the same time as my pAF diagnosis, and I continue to believe these 2 conditions are linked.

Can I ask what was your actual deficiency level of Vitamin D? (mine was 22 nmol/L) ... and what level are you aiming for by supplementation?

Qualipop profile image
Qualipop

That applies to so many people in the UK. When mine was tested a few years ago my levels were so low they couldn't even be recorded. Never blame new symptoms on your existing conditions. Get them investigated.

JOY2THEWORLD49 profile image
JOY2THEWORLD49

Hi

But your Dr may OK B12 at just higher than 180 I think.

But as we get older 400-800 level is better. It gets eliminated over or stored.

Since 2010 I take 1 sublingual nugget SOLGAR 1000ug on 3-4 days week.

To get the rise from 160 level I took 1 every day under the tongue for 5 weeks. It rose to 900! Then Dr and I watched the level go down.

Keep well. I sit out in sun or overcast in the morning daily but I'm in NZ and Far North.

Also put your mushrooms out in sun and tomatoes on window sill or outside sunning as they absorb Vit D.

By the way B12 will not be absorbed when you take B12 via pill through stomach and that is why under tongue goes straight into blood stream.

cheri JOY. 75. (NZ)

Teresa156 profile image
Teresa156

I agree with others. I was vitamin D deficient a couple of years ago and suspect I had been for some time. I only had it done, because I requested it after reading that one of my long term medications can cause it. If you are on different medications for anything, do check that none of them might be causing the deficiency. (It was well documented. Is Dr Google) iwas surprised as in GP or Dr had ever said anything.

1000iu per day is a very small amount of D3 to get you up to sufficient level if you are deficient and is wrong advice. D3 is the one you need to take abd there are lots on the market and it’s reasonably priced. I’m currently on warfarin too for an ablation.

I’m afraid GPs underestimate the amount of D3 needed to get up to sufficient levels. My levels were 28 and I needed to get above 75 to be ‘sufficient’. It took about 3 months at 4000 iu per day ( which he told me to take) to get in the 80s. You need to get above 75. As soon as I was in the ‘sufficient’ zone, he said reduce to daily maintenance of 2000iu. I’m afraid I was rebellious and I ignored that advice, (knowing my meds were at war with my Vitamin D anyway) and I have stayed on the 4000 iu daily. I also wanted to up my levels to around 100 in my blood tests as I felt the 80s could easily slip back down, so I alternate daily with an additional 1000iu on top of the 4000iu. And it’s kept my levels around 100 now throughout the year. I’d back in the insufficient/deficient zone, if I’d taken my GPs advice.

It will take many months for you to reach sufficiency if you take their advice of just 1000 iu daily. I would anlso ask to be checked periodically throughout a year ( they allow it every three months) as levels can vary, especially in the winter months too - and do check your other meds for interactions.

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