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Mom Confessions Mom Confessions

This can be very dangerous. Did you know?

Anonymous
Posted by Anonymous
  • 95 Replies

Low levels of vitamin D.

I have lupus and fibromyalgia, so I am used to being fatigued; however, a few months ago I started feeling worse than I have in years. I am beyond exhausted, but am having trouble sleeping. There are days when my biggest accomplishment is going to the bathroom. I have basically not been able to get out of bed in months. My stomach is constantly upset and my bones HURT. I have severe osteoporosis, so the bone pain is fairly constant, but this pain is much worse and is constant. I have also had some dizzy spells and have fallen into walls several times. I have consulted my regular dr, pain management dr, and my rheumatologist. My rheumatologist has actually thought of starting me on a new drug in a clinical trial for lupus. Last Friday I saw my rheumatologist. Between he and my regular dr, they ran a ton of tests. It turned out that my Vitamin D level is "dangerously low."  Different labs have different reference points, but for this lab, a 50-80 is considered normal and best. My level is 7.  

I knew that vitamin D is important for the absorption of calcium, but I was unaware that a low vitamin d level can lead to osteoporosis and spongy bones, cardiovascular disease, cancer and can cause fatigue, light headedness, stomach distress, excruciating bone pain,  circulatory issues, headaches, etc.

I am now on 50,000 IU of vitamin d for a month and then the dose will be reduced. I will have a repeat test in 3 months. I can't continue with osteoporosis treatment until we have the vitamin d level to at least 20.  I will be on higher levels of vitamin d supplements until we can get the levels up and then will be on a regular supplement the rest of my life. 

The moral of the story is that if you are having symptoms that are just not normal, don't  give up. Lay it on the line for your dr. IT was not until I stressed the severity of the symptoms that I have experienced that a dr thought to run this test. It is evidently an expensive test and many insurance companies limit the number of times and the frequency the test can be consulted. 

I have been told that it will be about 6 weeks before I start to feel better and several months before I feel human again. I am just thankful that we seem to have found a new answer. 


Posted by Anonymous on Aug. 2, 2014 at 3:28 AM
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Replies (1-10):
907PickleMom
by Silver Member on Aug. 2, 2014 at 3:32 AM
This is common in Alaska. We have lots of darkness from the end of October to March. Go outside and sit in the sun! Also a uv therapy light can help too. People here get SAD ( seasonal affective disorder) also. Good luck!
maggier89
by Member on Aug. 2, 2014 at 3:38 AM
My doctor checked my vitamin D and I have to start taking supplements. I haven't started my doctor didn't tell me that it can be really bad if I didn't. I'm going to get some this week.

So sorry your going through all this.
Anonymous
by Anonymous 1 - Original Poster on Aug. 2, 2014 at 3:38 AM

Because I have lupus with photosensitivity, I have to avoid the sun. It makes the lupus worse. I try to garden in off peak hours; however, I have felt too ill to even water the plants. I am on 2 drugs for the skin involvement.

Quoting 907PickleMom: This is common in Alaska. We have lots of darkness from the end of October to March. Go outside and sit in the sun! Also a uv therapy light can help too. People here get SAD ( seasonal affective disorder) also. Good luck!


907PickleMom
by Silver Member on Aug. 2, 2014 at 3:41 AM
Yuck! Hope the vitamin d therapy helps.

Quoting Anonymous:

Because I have lupus with photosensitivity, I have to avoid the sun. It makes the lupus worse. I try to garden in off peak hours; however, I have felt too ill to even water the plants. I am on 2 drugs for the skin involvement.

Quoting 907PickleMom: This is common in Alaska. We have lots of darkness from the end of October to March. Go outside and sit in the sun! Also a uv therapy light can help too. People here get SAD ( seasonal affective disorder) also. Good luck!

Anonymous
by Anonymous 1 - Original Poster on Aug. 2, 2014 at 3:42 AM


Quoting maggier89: My doctor checked my vitamin D and I have to start taking supplements. I haven't started my doctor didn't tell me that it can be really bad if I didn't. I'm going to get some this week. So sorry your going through all this.

I really had no idea how dangerous this can be. The level of supplement he has me taking is so strong that the pharmacies only carry it via prescription. IT is $4 a pill. 

If you google vitamin D deficiency, you will find a ton of articles on the dangers of a low level. This is a brief article that describes the dangers. 

http://www.mollynap.com/2010/11/are-your-vitamin-d-levels-dangerously-low/

If you can sit in the sun for 10-15 minutes a day, it will help your levels. I have lupus with some skin involvement and photosensitivity, so sun exposure is not a good option for me. Good luck. 

Anonymous
by Anonymous 1 - Original Poster on Aug. 2, 2014 at 3:43 AM
1 mom liked this

Thank you. For the first time in a long time, I am hopeful that this will help me feel better. 

Quoting 907PickleMom: Yuck! Hope the vitamin d therapy helps.
Quoting Anonymous:

Because I have lupus with photosensitivity, I have to avoid the sun. It makes the lupus worse. I try to garden in off peak hours; however, I have felt too ill to even water the plants. I am on 2 drugs for the skin involvement.

Quoting 907PickleMom: This is common in Alaska. We have lots of darkness from the end of October to March. Go outside and sit in the sun! Also a uv therapy light can help too. People here get SAD ( seasonal affective disorder) also. Good luck!



sllytnkrbl
by Bronze Member on Aug. 2, 2014 at 3:45 AM
Vitamin D deficiency is common in many areas, here in New England over 50% of the population is difficient because we do not spend enough time in the sun. My son had to take supplements because of headaches but since may his levels have been fine.
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BurningLucidity
by Member on Aug. 2, 2014 at 3:47 AM
Odd...I have low vitamin D levels as well, but from what I understood, its a simple test to run. I now take 5,000 idu a day and I feel so much better! Maybe the tests depends on where you live?
Tootsiegirl44
by Silver Member on Aug. 2, 2014 at 3:48 AM

Wow, 50,000 IU is a huge dosage. When I was pregnant with my son my levels were low and my doctor put me on 5,000 IU and she was concerned about it. This is great information to share, thank you.

I hope you start to feel some relief soon!

Anonymous
by Anonymous 1 - Original Poster on Aug. 2, 2014 at 3:49 AM

 My level, according to the dr, is basically nonexistent. This is worse than an active round of fibromyalgia, lupus, or mono. I have struggled to simply get up and go to the bathroom. I read that it is fairly common in northern areas and parts of Europe, but I live in TX where sunshine is common. I am glad your son is better. I can't wait to get back to my "normal." Normal for me is impaired, but I will take it over how I feel right now. The deep cold is getting me and so strange for July in TX. 

Quoting sllytnkrbl: Vitamin D deficiency is common in many areas, here in New England over 50% of the population is difficient because we do not spend enough time in the sun. My son had to take supplements because of headaches but since may his levels have been fine.


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