I have been diagnosed with low vitamin D, my level is 14.
My RA has put me on 50,000 units twice a week for 4 weeks, then one 50,000 units for 8 weeks, then i am to go on one 1000 unit a day with a caltrate and a centrum silver each day.
I have been to several doctors including 3 orthropedics and two wanted to do a fusion on my back but could not tell me exactly why, the last ortho said he thought there was a contributing factor due to a ANA test being positive and possibly it was autoimmune and sent me to a rhumatologist.
I have not had any blood work up til this (in over 3 years). I started having severe hip pain at the end of 2006, low back pain and other joint pain expecially ankle & knee pain, as well as muscle aches, headaches, blurred
vision and alot of fatigue especially toward evening.
Could a low vitamin d level cause this pain????
I go back to the doctor on April 7th - what questions should I ask her???
I have low calcium. I don't know if that has anything to do with the vitamin D thing but I have had alot of muscle twitches. I don't know. It is a strange thing. Hopefully someone can help you have the right questions to ask. I think sometimes it is different for each one of us. I am frustrated too. Hang in there!
I have the same low Vitamin D. Ranging from 19 to 21 when I don't take the megadoses. I am now on the same regamin of 50,000IU. I have horrible hip/thigh bone/muscle pain. I feel for you and will watch this thread for any answers.
Last edited by hopalong_too; 03-25-2008 at 10:25 PM.
Hello - About a year ago, I found out I was vitamin d deficient and have been trying to stabilize it since then. My initial D level was 18, and it has been bouncing up and down over the past year( It has been as high as 48). I was also on high dose supplements, but once I stopped, my D levels would plummet back down again. I also have joint pain and fatigue that was diagnosed as fibromyalgia.
I would not consider any back surgery until I had a definitive diagnosis from your orthopaedic surgeon or RA. Do you have arthritis or another autoimmune disease? What type of imaging test have you had done on your back? What are the results of your bloodwork? It is common to have pain from low Vitamin D levels. I get aches in my leg which I know are from vitamin d deficiency.
I go back to the doctor on April 7th, she will then go over all the test she ran on me. I talked to the nurse and she said everything but the vitamin d look good but the doctor would be more precised on everything.
I had been diagnosed with Fibro about 10 years ago but the doctor that did it did not run any test but a ra factor test and it was negative. He then said it was Fibro, the RA doctor that I went to in March said she would determine that from all the blood work she did. She has ran all the autoimmune bloodwork, also.
Could you possibly have problem with low vitamin d for years before it is discovered???
My regular doctor rarely ran any blood work and when he did it was just the basic - anytime I would complain about something - he would say exercise more. That was how my hip started hurting - I was walking more on the treadmill and bam - it hit like a shot. That was over a year ago and I am just now see some days that it does not hurt after I started the vitamin d.
But the aches and pain from being still for a few minutes like sitting is almost unbearable. When I stand sometimes I can hardly get my legs moving.
KKL - did you find out why your vitamin d was so low???
Hello Mary and all I went to the doctor today. We had a talk and I told her about my muscle twitches and strange symptoms. Oddly enough my teeth are sensative today too. Weird. Anyhow 4 weeks ago my Vitamin D level came back at 22. The normal range is 30 to 80. Without testing again so soon she is prescribing me a perscription strength Vitamin D 50,000 mg twice a week for 8 weeks. We need to really bump my level back up there. I hope this is the answer to my problems. It is so frustrating. She says that since we live in a northern part of the country we are not getting enough sunlight and that is not helping matters. I am kind of scared that mine is so low at age 43. She wants to send me for a bone density scan. I just need to find out if my insurance covers it. They cover it for all menopausal woman but I am not in menopause yet. I have a period every month. Even though it only lasts for 3 days. Anyone else dealing with the low calcium and vitamin D?
I live in south TN and get in the sun alot in the spring summer & fall not so much in the winter especially without a coat so only my face & hands see the light of the day.
But I understand that your body stores vitamin D in the good months. I don't know why I have low vitamin d but I am wondering if maybe I am not absorbing it right. I have read that happens.
My doctor told me the level needed to be between 80 and 100.
I have had some of the symtoms for years. I have sensitive teeth at times too - I even went to the dentist with it once. he thought I needed to use sensitive toothpasth. I had wondered about this now because if my bones are getting soft then my teeth have to be affected. Another question for the doctor, I guess.
Has anyone had the inside of their mouth get sore & kinda peel since taking large dosaged of D???
Dry skin & hair, is that a symtom of low D???
I got in the garden yesterday and planted potatoes - I love being out but I will get a rash sometimes. I wonder if this has anything to do with it?
What prompted me to see an endocrinologist was that I have been slowly losing bone in my jaws for a number of years without any evidence of dental disease. My GP never ran any vit. d tests just a standard blood panel. When I went to see the endo., she ran a dexascan for bone density and the vitamin d test. Thankfully, my dexascan was normal. What the dentist ( I've seen many) and endo. don't really know is if the low vitamin d could be the cause of the bone loss in my jaw. Based on some of the research I've done, low vitamin d can cause loss of mineralization in your teeth ( i.e. loss of enamel), but your levels have to be extremely low for it to affect your jaw bones.
Anyway, I suspect a combination of things have caused my bone loss.
1. I grind my teeth at night. I've noticed that you mentioned you had sensitive teeth. If you're a grinder, it will defintely cause your teeth to be sensitive.
2. I have a very bad bite. I have an open bite. When I bite down, the only teeth that touch are my back molars.
I think having a bad bite and the teeth grinding in combination with the low vitamin D made me more susceptible to bone loss. I'm trying to fix my bite problems with braces, but that's another long story.
Also, I wanted to mention that as you get older, it's more difficult to absorb vitamin D. I'm not out in the sun much, and we don't get a lot of sun where I live.
80-100 is very high for Vitamin D. I think most endos like to see the vitamin D range in the upper 40s. You need to be careful when taking high doses of vitamin D. It can become toxic and then you end up losing bone.
Mary, you mentioned getting a rash when you are out in the garden. Not to scare you, but have you been checked for lupus?
When the RA ran test, she ran a complete bloodwork on me including for Lupus?
I had an ANA ran last November at a demotologist office and it came back positive but when she ran a couple more they were negative.
But when the RA looked at the test, she said the doctor first read the ANA wrong and then ran the wrong tests the next time. So she said she would check everything.
One thing I am not sure if she check was for Lyme disease. My brother told me I needed it check out because of the numbness that I have in my arms & hands at time that seem to travel from my right arm to my neck and base of my head. His wife has it and that was some of her symtoms.
I do not know anything about Lyme disease? Can it add to low vitamin D?
I don't think I grind my teeth but I do know that I clinch my jaws sometimes.
Wow..Mary, we share a lot of the same symptoms. I have numbness in my arms and hands too, but it is related to my neck. I have thoracic outlet syndrome. When you have very tense muscles in your neck, it can cause the nerves to become pinched and cause numbness/tingling.
Like you, I've also been seen by an RA. I've had many tests run, and so far, they have been negative. It can be difficult to diagnose someone with lupus if you don't fit all the requirements. If you don't feel you are getting anywhere with your current doctor, I'd get a second opinion.
I'm not aware of any relationship between low vit. D and lyme disease.
If you do clench your jaw, it can definitely cause sensitive teeth.
Did you ever have hip pain that seem to travel down your leg?? It is my right hip that started it in Dec, 2006. As time went on, my upper right leg along the bone would hurt and I kept telling the doctors that it felt like something was so wrong that I wish they could take it out and scrape it and put it back - weird I know. I hurt so much when I walk up stairs or even across the mall or parking lot.
I have been to so many doctors and each with a different idea but all in the end wanted to do back surgery but each said that they could not be 100% that it would take care of it. That is why I hesitate (thank goodness).
I have had a mri and it showed dengerative disc but mild and a small bulge but the nurosurgeon I went to seem to think it might be that or it might not. He sent me to an ortho doctor that said it probably causes some of the pain but it was multifactor and something else was causing the most.
I have read that when you have low vitamin D for a long period and it is very low that your bones start getting soft and you start with low back pain and hip pain first then it increase to leg bone pain and other joint & bone pain, as well as muscle pain.
I had the hip pain thing too, but it happened after I had a very bad miscarriage. I don't know if it was hormonal or related to the low Vit D which was not diagnosed at the time. It did slowly go away. Yes, having low Vit. D can raise your risk of osteoporosis. I don't know about having symptoms in your back first. Mine's have always been in my legs. Have you had a Dexa scan yet? I am frequently on the osteoporosis board. A lot of ladies on the board also have low vit d levels.
I know one of ladies on the osteo board also has back problems, and I believe she has DDD. Her doctors said that her bones were like mush.
What is a Dexa Scan?? I have only had the blood work and the doctor sent me the prescription and a letter telling me to get started on the vitamin D. I saw her on the 3rd of March and as soon as she got the results, she overnighted the letter and the prescription. I called and asked my level. I will go back on the 7th to see her and her nurse said she would go over more with me about the results of all the blood work.
Is DDD degernative disc disease?
My knees were hurting so much the last couple of days that it is hard to walk up stairs without pulling myself up. Plus the bones of my arms hurt as well as my hands.
My RN friend said that going too long with real low vitamin D can cause heart problems - has any doctor told you this?
A dexascan is a test for osteoporosis. Doctors will not order it unless you are either postmenopausal or at a risk for osteo. Since I was vitamin D deficient and was showing bone loss in my jaw, my doctor ordered it. You may want to ask your doctor about it.
Yes - DDD is degenerative disc disease.
If you do a search on the web for the Vitamin D council, their web site will list all the diseases you could be at risk for if you have low vitamin d.