Vitamin D3 5000 UI daily safe?

Posted by patriciam2021 @patriciam2021, Jan 29, 2021

I have been taking Vitamin D3 5000 UI "by prescription" for 4+ years and now concerned that it has created other issues. I have vasculitis, lupus, psoriasis, IBS-D, diabetes 2, pretty much inflammation everywhere. I am wondering if there is a connection. I am obese and cannot be out in sunlight per medication and disabled - 59. Could someone please share their opinion? Thank you in advance.

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@cindylb

I was prescribed 50,000 (yes that's a big number) of Vitamin D for a week when I was first diagnosed with breast cancer and then they suggested a dose of 2,000 per day thereafter. I've been doing that for 7 years now.

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I also take 5000 a day and no problems. I think I am going to get a pool and see if I can get it naturally. But I have had no side effects from the vitamin.

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@christy55 Getting Vit D naturally from the sun and food sources is great. Have you had your Vitamin D level checked with a blood test to see what your current level is? While you’re not having any side effects now, this can be accumulative and cause issues down the line.
I was on just less than 5000 IU daily Vit D3, along with Mag and Calcium with instruction from my BMT-team to help correct my bone loss from chemo and meds I’m taking. Even at that dose, with my latest blood draws my Vit D level was way above the normal safe level. I was having no symptoms either but was instructed to now back down to 2,000 IUs daily because I’ve succeeded in my bone improvement.That was hard to do because I love my gummies!! LOL. But there is concern about long term use causing kidney issues. Just a FYI that sometimes we can get too much of a good thing. Enjoy the sun!

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We were told by a nephrologist to take 5000 IUs - been doing that for a month but now thinking we should take a lower amount. I got the supplement over the counter at our local grocery store - think I assumed all the supplements they sell are at safe levels!

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@mlenney167

We were told by a nephrologist to take 5000 IUs - been doing that for a month but now thinking we should take a lower amount. I got the supplement over the counter at our local grocery store - think I assumed all the supplements they sell are at safe levels!

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@mlenney167
First thing I'd do if I were you is get a 25(OH)D test to see what your level is. You don't want it too high so calcium may cause buildup in blood vessels and other places. Since vitamin K & D help absorption you might ask your doctor if you should take K2 along with your D.
Why did the doctor put you on vitamin D?
Do you know what your vitamin D level is or was prior to supplementation?
I take vitamin D because my seizure meds lower it.
Take care,
Jake

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@jakedduck1

@mlenney167
First thing I'd do if I were you is get a 25(OH)D test to see what your level is. You don't want it too high so calcium may cause buildup in blood vessels and other places. Since vitamin K & D help absorption you might ask your doctor if you should take K2 along with your D.
Why did the doctor put you on vitamin D?
Do you know what your vitamin D level is or was prior to supplementation?
I take vitamin D because my seizure meds lower it.
Take care,
Jake

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Hi Jake - thanks for responding, and so quickly! I’m not the patient ... I’m the caregiver for someone with melanoma and am trying to help him with all his medical appointments. He has blood work taken all the time to monitor his treatments. I’ll see if I can find the trends on vitamin D in his medical records, but not sure if that is a routine test. And not sure why the nephrologist ordered it. He didn’t mention anything about taking K, impacts on calcium or anything else. I’m learning that you need to ask lots of questions and be your own advocate - I’m trying to fill the advocacy role for him too. And I also don’t think all doctors are well trained in nutrition, but seems important.

And I sure wish the systems were integrated ... he sees doctors at a few different healthcare systems. An integrated view would be so helpful - should be an easy systems/IT fix ... but. no need for me to rant about that. 😄

I appreciate your help!!

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@mlenney167

Hi Jake - thanks for responding, and so quickly! I’m not the patient ... I’m the caregiver for someone with melanoma and am trying to help him with all his medical appointments. He has blood work taken all the time to monitor his treatments. I’ll see if I can find the trends on vitamin D in his medical records, but not sure if that is a routine test. And not sure why the nephrologist ordered it. He didn’t mention anything about taking K, impacts on calcium or anything else. I’m learning that you need to ask lots of questions and be your own advocate - I’m trying to fill the advocacy role for him too. And I also don’t think all doctors are well trained in nutrition, but seems important.

And I sure wish the systems were integrated ... he sees doctors at a few different healthcare systems. An integrated view would be so helpful - should be an easy systems/IT fix ... but. no need for me to rant about that. 😄

I appreciate your help!!

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Hello Annie, @mlenney167

It so good of you to be advocating for the person you are caregiving! We need more people like you in our world today.

Most of us never realized the importance of research, asking questions and advocating in health care matters. You are doing a great job reaching out to get more information.

Jake, @jakedduck1, has offered you some good ideas for the Vitamin D supplement. WebMD has some good information, that is also user-friendly. Here is its website about Vitamin D supplements, https://www.webmd.com/search/search_results/default.aspx?query=Vitamin%20D%20supplements

I hope you keep in touch with Connect and let us know how you are doing as a caregiver.

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@hopeful33250

Hello Annie, @mlenney167

It so good of you to be advocating for the person you are caregiving! We need more people like you in our world today.

Most of us never realized the importance of research, asking questions and advocating in health care matters. You are doing a great job reaching out to get more information.

Jake, @jakedduck1, has offered you some good ideas for the Vitamin D supplement. WebMD has some good information, that is also user-friendly. Here is its website about Vitamin D supplements, https://www.webmd.com/search/search_results/default.aspx?query=Vitamin%20D%20supplements

I hope you keep in touch with Connect and let us know how you are doing as a caregiver.

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I’m struggling as a caregiver. While I try to research things, it would be much easier if I had medical training. Not all doctors explain things in plain speak - the medical jargon is harder for me to understand. And hard at times to control my emotions. Thanks to Mayo Connect I have access to resources and websites I didn’t know exist. Access to people with similar situations is so helpful - especially the success stories.

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@mlenney167

I’m struggling as a caregiver. While I try to research things, it would be much easier if I had medical training. Not all doctors explain things in plain speak - the medical jargon is harder for me to understand. And hard at times to control my emotions. Thanks to Mayo Connect I have access to resources and websites I didn’t know exist. Access to people with similar situations is so helpful - especially the success stories.

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@mlenney167 Hi Annie,

Yes, those of us who have serious medical problems or know of someone who does, all wish we had more medical knowledge, but we all get our knowledge the same way you do, by researching reliable websites and asking questions of others who are in a similar situation. I would like to invite @gingerw to this conversation as well.

I can also understand the emotional toll that comes with caregiving. We have all experienced this at one time or another as caregivers. Are you aware that on Mayo Connect we also have discussion groups for caregivers?

Here is the link to one of those discussions where caregivers introduce themselves, https://connect.mayoclinic.org/discussion/meet-fellow-caregivers-introduce-yourself/.

We also have discussions specifically related to melanoma. Here is a link to one of those, https://connect.mayoclinic.org/discussion/stage-4-malignant-melanoma-internal/?pg=1#comment-114191. Perhaps @gingerw can recommend some other discussions as well.

I encourage you to give the caregivers group a try. Will you?

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@hopeful33250

@mlenney167 Hi Annie,

Yes, those of us who have serious medical problems or know of someone who does, all wish we had more medical knowledge, but we all get our knowledge the same way you do, by researching reliable websites and asking questions of others who are in a similar situation. I would like to invite @gingerw to this conversation as well.

I can also understand the emotional toll that comes with caregiving. We have all experienced this at one time or another as caregivers. Are you aware that on Mayo Connect we also have discussion groups for caregivers?

Here is the link to one of those discussions where caregivers introduce themselves, https://connect.mayoclinic.org/discussion/meet-fellow-caregivers-introduce-yourself/.

We also have discussions specifically related to melanoma. Here is a link to one of those, https://connect.mayoclinic.org/discussion/stage-4-malignant-melanoma-internal/?pg=1#comment-114191. Perhaps @gingerw can recommend some other discussions as well.

I encourage you to give the caregivers group a try. Will you?

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@hopeful33250 Thank you for inviting me into this.

@mlenney167 Hi Annie! You are a very giving person, to be be caretaking and following up on medications and all. I take 4000 IU per day of Vit D3, and make sure there is also calcium and magnesium in my mix, too. I tend to run low on natural Vit D3, as do a few members of my family. Remember, being able to get outside and enjoy the sun as a natural source of Vit D3 is great if you can do it. I cannot due to a history of melanoma and systemic lupus.

As a caregiver, it is important for you to remember to caretake yourself. It can be exhausting to always be "on". As @hopeful33250 mentioned, doing research can be a frustrating and difficult journey. We strive to know what is needed to help ourselves our someone we care for. It is important to seek out information from trusted sources such as large teaching hospitals, Mayo Clinic https://www.mayoclinic.org/, WebMD https://www.webmd.com/, and not fly-by-night sites. If in doubt, ask us!

I hope this has helped you. Please return and ask any questions you may have.
Ginger

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I’m a liver transplant recipient. My Vitamin D is slightly low. I met with the transplant team nutritionist yesterday and she said that for most people it is safe to take up to 4,000 IU/day. And, the levels should be monitored.

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