low vitamin D
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I mentioned to my doc that I've always heard D3 is recommended and asked why only D2 seems to be prescribed. She kind of rolled her eyes and said D2 is effective for most people and is what insurance will cover.
I'm flat broke and almost homeless, so unfortunately I have to take what's prescribed because I pay $3.65 for prescriptions and can't afford to order my own alternative supplements.
At the GI on Monday I weighed in at 3 pounds heavier than last month. The doc said he felt that meant I am absorbing nutrients otherwise I wouldn't have gained weight. As if the 3 pounds wasn't water retention or a difference in scale calibration? I was annoyed at him making that assumption. Obviously something is wrong because I'm taking supplements and still extremely deficient and there's always undigested food in my stool ( when I’m not constipated)and I'm bloated and always full and so tired it's ridiculous.
Sorry if this sounds abrupt. I'm on my phone and for some reason when I do “voice to text" on this forum, it looks like everything is there but then itcuts off the last half of my post when I hit submit. So I'm trying to type it all out instead, which is getting harder and harder between the tiny keyboard and spellcheck changing everything I type.
Edit to add: I feel that no one will take my symptoms seriously unless I start suddenly losing weight. A quick five pound weight loss would alarm them, but these other symptoms font seem to be concerning them enough, even though it’s a giant quality of life issue for me.0 -
I have to say too, the extreme metallic taste I've had for the past few weeks is getting really annoying. My blood work has been pretty okay so my liver and kidneys and blood sugar have all been doing okay.
The metallic taste wasn't even this bad when I was getting chemo. And I'm so thirsty and sweating all the time. You would think my blood work would be off because there definitely seems to be some kind of dysfunctional metabolic process happening.
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I take 5000 D3 daily, no dr rx needed. Get it at Walmart .
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Pesky, your doctor may roll her eyes, but why would she would she continue to recommend something that is obviously not working for you? I have learned the hard way that doctors, in general, are very ill-informed about vitamins and minerals and know only prescription meds--D2 is a synthetic prescription, D3 is natural. I had very low D levels and was prescribed D2 and it did not work. An endocrinologist put me on D3 and about 5000 IU daily raised my levels up to the 30-40s. It wasn't until I switched to a flaxseed oil based D3 that my levels finally got in the optimal level. Apparently the soybean oil based D3 was not working as well in my body. I get my flaxseed oil based D3 in 5000 IU capsules from Trader Joe's for about $4 for 90 pills which sounds like a similar cost to your prescription. I am always careful to get the 5000 IU bottle, since Trader Joe's 1000 IU level pills are soybean based (Strange they are not the same oil and also strange that Trader Joe's does not list their 5000 IU supplement online--I can only find it in their store which for me is an hour drive away so I always buy several bottles when I'm there.).
I get daily emails from the Dr. Mercola website--known for his alternative medical information. He often talks about the difference between D2 and D3 if you search his site. Here's one of his articles to get you started https://articles.mercola.com/sites/articles/archive/2012/02/23/oral-vitamin-d-mistake.aspx
RxList, a website for medicine dosing and side effect, not always my first choice for medical info and they do not have the info on the differences between absorbing D2 and D3, but they do mention that excessive Vit D2 can cause a metallic taste. They say, " Most people do not commonly experience side effects with vitamin D, unless too much is taken. Some side effects of taking too much vitamin D include weakness, fatigue, sleepiness, headache, loss of appetite, dry mouth, metallic taste, nausea, vomiting, and others." https://www.rxlist.com/vitamin_d/supplements.htm
Edited to add that I take one 5000 IU capsule per day (I started out taking 2 capsules per day until my levels got higher).
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pesky - Have you tried an extended fast? Costs nothing and helps with GI issues. I like to go 36-40 hours without food every so often. During chemo I would fast for up to 4 days drinking water/black coffee/tea only. Adding a little salt helps. I would break my fast with homemade jello or bone broth. What do you normally eat? Cooked veggies are easier to digest than raw.
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Not as rare as you might think, but you are right mostly in diabetics, either type 1 or 2. I work with someone who is type 2 Has gastroparesis.
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I too take VitD-3. I was taking 5000 IU per day but have backed off some now that my numbers are better on the last blood tests. Currently I get 1000 IU in my multi vitamin, 500 IU in my Citracal w/D and take and additional 2000 IU - for a total of 3500 daily.
I agree - it needs to be D-3.
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I wonder why she's fine leaving you on a high dose supplement that isn't working. Even if it works for most people it doesn't guarantee that it will work for you, even if covered by insurance. D3 is pretty cheap if you end up deciding to try it.
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Just updating this for anyone in a similar boat. I continued taking that very high dose D and got my levels up to a whopping 34 in the late fall, but last week it was back down to 18, which is back to deficient, though not as low as it was.
Since I last posted on this thread a year ago, I have lost 28 pounds without even trying. I'm always constipated and everything they give me causes brutally painful cramps. My clothes are falling off of me, I have telogen effluvium hair loss from the rapid weight loss, and I look awful. My oncologist was very scared by the sudden weight loss, but my blood work all looks mostly normal (low wbcs and rbc and the low D, but everything else is within normal range) and I had a PET scan that looked clean. I had a thickened endometrium last year that was biopsied and was negative, a 1.5 cm thyroid nodule, among other smaller nodules that they're following - they can't biopsy the larger one I guess because of where it is, but they biopsied a slightly smaller one on the right side and it was negative, and I have a 1.2 cm mass arising from the right ovary that will be looked at with a transvaginal ultrasound in a few weeks - again, nothing lit up on PET.
So all very mysterious but nothing looks maligant. All that cancer treatment has really taken its toll, I guess.
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Pesky, thanks for the update, but sorry you are still experiencing issues. With all the testing, it sounds like they are on top of things, but it wouldn't hurt to have a second opinion, or even a third. I know it took years and a couple of specialists, to finally diagnose a parathyroid adenoma (the four parathyroid glands sit behind the thyroid) in me. I had lost much hair also.
I looked back and see I posted here last March how I finally got my Vit D levels up to normal range. I took Vit D3 for years, but it wasn't until I switched to a flaxseed oil based 5000 IU based capsule (Trader Joe's), instead of soybean oil based, that my levels went into the normal range and have stayed there! If you're still taking Vit D2, you'll want to switch to D3.
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Pesky - can you try Magnesium for the constipation? I take 250 mg every day for leg cramps and it keeps me regular. As your doc what dose would be save for you.
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Dear pesky904,
I have vitamin D deficiency as well and recently discovered that I have a homozygous mutation in one of the vitamin D receptor genes (VDR Taq1), which may explain my low numbers. I am wondering if that maybe the reason why your levels keep dropping, Just an idea. I hope you are well.
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ltrinidad I never knew there was a homozygous mutation in vita d receptor genes! Wow! I was quite low before my diagnosis and my oncologist made sure to let me know. I wonder if I have that mutation too.
I was able to bring up my D levels with a liquid supplement.
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