LOW VITAMIN D - GOT MY ANSWER ???

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MT Lady
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Date Joined Jul 2008
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   Posted 4/13/2009 2:57 PM (GMT -7)   
So, had my colonoscopy and endoscopy today. All was negative, which is a good thing, of course. EXCEPT...I still don't have an answer to why I am so low in vitamin D, even though I take massive doses of it and have been for over a year and I remain at 20 and should be over 30. The endoscopy was to see if I had malabsorption issues, celiac disease and I do not. So, now what? I don't know where to go from here. When the gastro doc came in to recovery, and he told me the "good" news, I just looked at him and said "you're kidding???" he seemed rather ticked at me and said "that is a good thing"...yes of course it is, thankfully, nothing wrong. Yet, still no answers. I understand that low D is very common in people with FM, but you'd think if you are taking 150,000 units of D a week, one could get their level to normal. shocked

Fibromyalgia, Osteoarthritis, scoliosis, back problems, hypothyroidism.


Binki
Regular Member


Date Joined Jan 2009
Total Posts : 386
   Posted 4/13/2009 5:23 PM (GMT -7)   
I don't have a "reason" for why my level was so low. I take 4,000 units of D3 a day. I still am only at just above the minimum level, but my doc said that would be good for now, til I come back in for another appt. I also take a multi-vit that has a little D in it as well. Of course I drinks my milk. :-)

I'm glad to hear your colonoscopy and endoscopy came out negative for anything.

Hang in There!

HUGS,
Lori  
 
Dx Fibro 1/2008, gastritis
 
300mg Gabapentin, 50mg Pristiq, Vitamin D3, Menopausal Support Multi-vitamin, Ultracet and/or Fentanyl patch as needed


Sherrine
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   Posted 4/13/2009 5:46 PM (GMT -7)   
Are you taking 150,000 IU a week?  I am taking 3,500 IU a day...24,500 IU a week.  He's been trying to get mine up.  Normal is 32-100, I believe.  I'm still only at 26 and have been taking extra D for about 9 months. 
 
Maybe your hypothyroidism is playing into this problem.  Just a thought...
 
Sherrine 
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


MT Lady
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Date Joined Jul 2008
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   Posted 4/13/2009 6:15 PM (GMT -7)   
Yes, Sherrine, I take (3) 50,000 unit pills once a week. It's prescription strength, prescribed by my endocrinologist. I started out with a much lower dose and have gradually gone up to this dose, but I've been on this dose for over 4 months. I guess I'll call the endo doc and see what she says. It's just so frustrating. I feel like I can't "fix" anything. Maybe I'm just a control freak? With fibro, I just don't feel in control of my own life. I can't exercise as I'd like to, can't get done what I'd like to, well I'm sure you all know the feeling.

Fibromyalgia, Osteoarthritis, scoliosis, back problems, hypothyroidism.


donnaeil
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Date Joined Jun 2006
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   Posted 4/13/2009 10:50 PM (GMT -7)   
D3 is 2000 per day D2 is 50000.

Differing doses.

Donnaeil

patsie
Regular Member


Date Joined Dec 2008
Total Posts : 478
   Posted 4/14/2009 4:41 AM (GMT -7)   
I'm on 28,000 per week and barely normal. As far as absorption goes they did those tests on me too. Everything negative. What can this D issue be in so many of us? My GP told me the FDA is increasing the safe dosage amounts on D b/c of the great need by many and tests show higher doses are safe. It is one we store but apparently many of us do not.

Patsie

Marlee2
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Date Joined Aug 2007
Total Posts : 6067
   Posted 4/14/2009 9:10 AM (GMT -7)   
I read where auto-immune disorders can cause low D. I've only been taking 1600 a day and now have gastritis, don't know if it is from the D or not. I go to doc on Mon and hope I can maybe get shots instead of oral D. Mine was 12 so I have to get it in me somehow.
 
It is strange that so many of us have this problem.
 
I'm glad the scopes went okay Miriam.
 
luv and hugs
Marlee
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches and Tramadol
 
Co Q 10, Super B Complex, Extra B12, Multi vitamin


MT Lady
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Date Joined Jul 2008
Total Posts : 955
   Posted 4/14/2009 3:32 PM (GMT -7)   
Thanks Marlee. Yes, it is strange that so many of us are so low in D. And it is worrisome. Unlike FM, low levels of D can cause some serious illnesses. At least that is what I've read, you never know if what you read is true. I hope you feel better soon Marlee. My rheumy did recommend that I take D via injection versus the pill, but that gets very costly. My copay to see my rheumy, well any specialist is $50 and I believe I'd have to go in once a week for the injection. I simply can't afford that. Somehow, I have to find a way to get my levels up. Mine was at 12 when I was first tested, and now at 20 so it has gone up, just not enough.

Fibromyalgia, Osteoarthritis, scoliosis, back problems, hypothyroidism.


Statgeek
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Date Joined Jul 2008
Total Posts : 1495
   Posted 4/14/2009 5:03 PM (GMT -7)   

Mine is 11.  eyes    Guess that is kind of low!!  I am taking a megadose once a week, but after hearing about you all, I think my dose isn't so mega after all.  Been taking it 4 weeks and feel no different so far.

We will see,  Syue


GamJill
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Date Joined Jun 2008
Total Posts : 1279
   Posted 4/15/2009 7:17 AM (GMT -7)   

Hi Miriam-

Happy to hear your tests came back normal.  :-)  I just started taking a high dose of Vit. D because my level was at 25. My Dr. started me on it about 5 weeks ago. I am very curious to find out what the level will be when I have the lab work done in a couple months- 

I was talking to my lawyers assistant yesterday on the phone, and she was asking me when my last Dr. appt. was and I told her and said I had to go in because of labwork being off and mentioned the Vit. D. She said that she just started on Vit. D because her level was at 11. And she does not have fibro. We both agreed that maybe its this lovely northern climate we live in why hers is so low. So this has been an interesting topic- this Vit. D!!   confused

GamJill


 
 
Fibromyalgia, Depression, Anxiety, TMJ, Arthritis/neck, SAD
 
Zoloft, Tylenol 4000 mg., Darvocet  


patsie
Regular Member


Date Joined Dec 2008
Total Posts : 478
   Posted 4/15/2009 8:15 AM (GMT -7)   
Hi Gam Jill,

Don't forget both Sherrine and I live in florida and both garden and BOTH have a D issue. I am sure the northern climate is an issue for many but why oh why in Florida. I purposely go out in the early morn', garden with no block. Then block up close to the noon hour.

What a mystery. Also as someone noted it leads to other problems, esp. cancer.

Patsie

MT Lady
Veteran Member


Date Joined Jul 2008
Total Posts : 955
   Posted 4/15/2009 9:32 AM (GMT -7)   
Thanks everyone for sharing! Somehow, it helps to know I'm not alone, lol. I have read that it only takes 15 minutes of sunshine to get your "recommended" dose of vit D...obviously that doesn't apply to all of us. I am very careful, at least for the past year, to NOT use block when I'm out taking a walk, except on my face, because of rosacea, so I know I'm getting the sun. Actually, you can even get the D when it is cloudy. It sure is a mystery. I am determined, however, to get to the bottom of this, one way or the other. I will have my D checked again next month, so we will see where I am at...thanks again everyone!
Miriam

Fibromyalgia, Osteoarthritis, scoliosis, back problems, hypothyroidism.


lost in philly
Regular Member


Date Joined Jan 2009
Total Posts : 243
   Posted 4/15/2009 10:22 AM (GMT -7)   
They should consider making low D a criteria for dx Fibro. Seems we all have it.
Dont you hate tho when a doc says, "Its neg, you should be happy". Yes its true...but at this point, Ive had so many neg tests come back--if that were the case, I never would have another flippin sad day in my life!!! hahaha
Somedays I just want a reason for why I feel so crummy, ya know?
lost in philly

~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Fibro, Endo, Migraines, Asthma, CFS

Topamax, Morphine, Cymbalta, Crestor, Resoril, Loestrin, Treximet

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MT Lady
Veteran Member


Date Joined Jul 2008
Total Posts : 955
   Posted 4/15/2009 12:07 PM (GMT -7)   
I hear ya, Lost in Philly, gosh I know what you are feeling. I want so desperately to feel good, to feel NORMAL again. I want my life back :(
Miriam

Fibromyalgia, Osteoarthritis, scoliosis, back problems, hypothyroidism.


patsie
Regular Member


Date Joined Dec 2008
Total Posts : 478
   Posted 4/15/2009 12:26 PM (GMT -7)   
Hi Miriam,

I so know what you mean about your life back. I try so hard to say "well it isn't cancer etc", but it is still a very tough battle. I think if we ever reach an understanding of what the origin of this thing is we will all have a sense of relief. Don't you think in our deep thoughts we wonder if something is being missed and this plagues us? I am very much a positive thinker but man this does get to me too.

Patsie

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 4/15/2009 4:57 PM (GMT -7)   
I have tested for low vitamin D levels too, and I believe that taking Vitamin D supplement has help,
alias no cure, but it helps..I take a 50,000 iu's cap. twice a month...and it an expensive supplement,
I also, feel a little better when taking Omega-3, not cured, but better...
Soft Hugz to all
((((((((HUGZ))))))))
p.s. I still love my heating pad...
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's and Ocular Migraines

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