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Old 08-01-2008, 04:45 AM   #1
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Vitamin D - still low!!! need help understanding it

I posted in March that my vitamin d was low (14). The rumatologist put me on 50,000 units 2xweek, after 4 weeks I went to 50,000 a week, then after 8 weeks of that, I went to 1000 units of D3 daily, Centrum silver once a day, and Caltrate with D 2x a day.
I have been on the last dosages for 2 1/2 months, I was tested last week and it is still low. I am going to call today to find out how low. I received a letter yesterday from her telling me it tested low and to start the same 50,000 dosages and procedure as before then I would be retested in late November.

I still have all the muscle pain, knee pain and hip pain that I had before. I have been tested for autoimmune and she said it was fine. She did not think I needed to be tested for lyme disease because I live in the eastern TN and it is not a problem here.
My hip and leg pain (right pain) is so bad that I can not walk up steps (or up a hill) unless I walk like a toddler and use my left leg first (then my knee kills me) - so I try to not do it at all. That is hard when you have a basement and you live on a hill.

I was sent to a nuro with my hip after my back mri showed some degenative disc, stinosus (narrowing of the spinal column), small bludge. I was told it was the nerve that runs down my leg (siactica). Long story shortened - after sending me to a orto and coming back clean - he decided that I needed a decompression surgery. He found that the nerve was entangled with a ligament and he had to cut the ligament and decompressed that spinal area. did not help at all with my hip (my back is not hurting as much though so maybe it is not a complete loss). The first week after surgery - I did not hurt but I was pumped full of pain killer during the 2 hr surgery and then told to take 2 oxycodones 325 mg every 4 hours plus Robaxin 500 mg twice a day- as soon as I tampered off - the pain came back.

I have fibro but it has never hurt this much (12 years) and I have always maintained it with supplements, etc. and never took any meds.
I had to go to the doctor for chest pains and he decided to do a stress test, which I failed the nuclelar part so I had to go to a cardiogist,who did a heart cath - which I passed but was told that I had a Afib problem. The cardiogist did not even see me again to tell me any thing - he just told my husband at the hospital that there was not blockages so they could put me to sleep to do back surgery.

Every muscle in my body hurts all over - my ribs, knees, ankles; my feet hurt, my hands ache, my right hip hurts to much just walking, my heart races, my vision is blurry, my head hurts all the time, my hands tremor so much at times plus even my insides feel shakey at times; I am so tired that I can't function.
It has been almost 2 years (Dec) since my hip started hurting so bad. I have been to 3 orthos (two wanted to fuse my spine and one said he thought it was a combo of alot of things), nuro, rhumotolgist, had therapy 3 times each time different at different places.
I can't work because I get so tired after a couple hours (I am self employed as professional machine quilter) - I have had to stopped taking in quilts and only do a few of my friends that understand that I can't push myself.

The rhumie told me that it could take a year to build back up my D and she just thinks I am not absorbing it but will not try to find out why. I am in the sun almost every day but she said that did not matter because I was not absorbing it. She thinks alot of my pain is from my fibro and wants me to take:

elevial (amitriptyline HCL 25 mg tabmyl) to make me sleep at night (I tried it a few nights - I felt awful - so sleepy the next morning that I had to go back to bed so now I am taking a benadyl at bedtime and it helps me sleep and I do not feel like I have a hangover in the morning)

Gabapentin 100mg - (haven't tried) (tried Lyrica - just wanted to sleep & eat)
Flexerial 10 mg (haven't tried)
(of course, she also said my hip pain was from my back and told me to go ahead and have back surgery)

My nuro told me to take a oxycodone whenever I got to hurting and come back in a month to see if I am any better. He is at a loss and don't know what else to do.

Can low vitamin D cause this much pain?
What doctor is the best to go to for low vitamin D?
What other test should I have done?

I can't understand why after 12 years of doctors saying I have fibro but being able to control it with supplements it has go so hay-wired to the point that nothing works.

My hip is the worst of it - it hurts from my hip socket to my ankle most of the time and sometimes it is from the middle of the upper leg bone down.
Add that in with the other things - I feel like I am totally losing it! I am 53 years old but feel like life without pain is over! I use to go hiking, do gardening and out go my 13 year old granddaughter that I am raising, but now I feel like I am one step away from a walker or wheel chair.

Can anyone shed any light on this for me!!!!!?

Thanks for listening!
Mary

 
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Old 08-01-2008, 08:47 AM   #2
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Re: Vitamin D - still low!!! need help understanding it

The doctor's office just called me back and said my level was at 30, so they think one more time at the high dosage should put if up. The doctor wants it between 50 -80.

My calcium level was okay at the first testing and the nurse could not find that she check it again. My receipt shows calcium mark for testing but not written in at the bottom of the page where she wrote the vitamin d testing to be done.

Mary

 
Old 08-02-2008, 03:13 PM   #3
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Re: Vitamin D - still low!!! need help understanding it

I also have alot of pain all over my body especially in the ribs, elbows, hands, knees, right hip, the usual fibro places. I got a book by Claire Davies call the trigger point therapy handbook. It really has helped alot. Its very detailed and takes alot of commitment but it's worth it. Still in some pain but not as bad. In his book it talks about fibro and trigger points and how it can be perpetuated by vitamin deficiences. Had my blood checked and sure enough my calcium, potassium and iron were low. When I went to the emergency room a few weeks ago with a racing heart and shaking the er DR. said all my blood work looked good. Went back and got a copy so I could see for myself and those minerals were all red flagged as low. I feel like complaining to the hospital about that dr. He told me I was having an anxiety attack and wanted to give me tranquilizers which I didn't take. Did my oun research and found out that these vitamin deficiencies can cause your heart to race, muscle and joint pain, foggy thinking, all the things I was experiencing. Went to a regular dr. who was highly recommended by alot of people and she said I was right, all those low vitamin levels could be causeing my symptoms. Get a copy of your blood work. Even if your at the low end of normal range of vitamins you can still feel bad. Everyone if different. I think alot of these doctors quickly check if your in "normal range" and if you are don't question it even if your one point from being red flagged. I've started tracking everything I put in my mouth to make sure I get the recommended amount of calcium and potassium. Hard to reach that potassium level if your not concious about it but I got a nutrition book to look up everything and on the days I get all my potassium in and calcium and iron rich foods my heart rate is much better and I don't feel that internal shakiness. I've lost 30 pounds and that seems to be helping my joints as well. Need to lose another 20. Hard work for a chocolate lover like me. Good luck to you and hope you feel better soom.

Beth

 
Old 08-04-2008, 08:13 AM   #4
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Re: Vitamin D - still low!!! need help understanding it

Thank you so much - I am not even sure if the doctor checked any of the other vitamins or minerals except D. I know she ran ANA and alot of others but she did not go over anything else except D.

Thank you again - I will call and get a copy of my blood work.
Mary Ann

 
Old 08-06-2008, 04:53 PM   #5
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Re: Vitamin D - still low!!! need help understanding it

TN-

I am sure you read my posts...however, I have had migratory pain in my joints/bones. For example, I will get a pulsating pain for about 10 minutes in my ankle, then hours later one of my fingers...it moves around my body-some days are worse than others. My joints are also cracking a ton, I have rapid heart rate at times, my muscles are twitching, and I get a buzzing feeling in my feet from time to time.

My D was at 28 and my Dr said it was unlikely low d was causing all of this. I am on aciphex which does prevent absorbing of d and other minerals.

I have been tested for everything, even a bone scan-all okay.

My next test in on Friday for a colonoscopy-I have had side pain and it could be colitis, which if it is, would explain my joint pain.

Do you "pains" sound like mine?

 
Old 08-08-2008, 06:09 PM   #6
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Re: Vitamin D - still low!!! need help understanding it

Hi - sorry you are having problems. Let me tell you that I am a survivor of this vitamin d deficiency problem. I thought I was going to die - I got really sick, same as you horrible muscle, knee, chest and heart issues, etc. and I never had any before. The valves in my heart started weakening and they were not pumping - I was in heart failure. Long story short, after multiple trips to ER, about $12,000 worth of tests (thankfully ins), all they found was severe vitamin D deficiency. I took 50,000 units for 8 weeks so far and every week it has improved. Knees are almost well, shortness of breath gone, overall stiffness and muscle pain is better, and chest pain is 10x better.

I noticed you take gabapentin (neurontin) that is known to cause issues with vitamin d absorption, I had to stop taking it until I got better.

Last edited by PNo; 08-08-2008 at 06:11 PM.

 
Old 08-10-2008, 06:50 PM   #7
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Re: Vitamin D - still low!!! need help understanding it

Hi TNquilter,

I didn't see that there was a thread here for "nutritional disorders" so suggested one for Vitamin Deficiencies. So, followed where the Mod put my post. See that I am not alone with Vit. D def. However, I just didn't have your symptoms. I was sent to an Endo for terrible heat intolerance that has really been so debillitating for the last 4 years. GYN and Primary care doc kept calling it "hot flashes" cause I am over 50. GYN ordered extra estrodial (hormone replacement) which didn't help. So, was referred to Endo. First she tested all kinds of things with my blood and found I had Hashi's thyroiditis. That would cause cold intolerance which wasn't my problem, so even though she put me on Synthroid for that, she tested other things. Found out I was very Vit D deficient. I had a 12 for D3 and nothing measurable for D2. Overall was 12. Put me on ergocalciferol (D2 replacement) for 3 months @ 50,000 units a week. 6 months later, was fine, in normal ranges. 36 for D2 and 9 for D3. My D3 actually went down.

Recently, was re-tested an I am back deficient again with D. Overall D is 24. 12 each. But I still don't have those problems you have. All that pain. Never did. However, because of other symptoms I have had, weakness on one side and brain fog, terrible fatigue and still the awful heat intolernance, went to see a Neuro last week. I'm having MRI's done next Tuesday.

I know how frustrating this can be when you feel like #### and don't have an answer. You might try seeing an Endo first to see what's going on there.

 
Old 08-14-2008, 06:17 PM   #8
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Re: Vitamin D - still low!!! need help understanding it

Thank you all for telling me what has been happening to you!!! I feel like I am losing my mind - I am so tired of this battle. I am so sorry that I have taken so long to reply - I have been so tired and depressed that I just can't seem to get everything done that I have to do. I went back to the nurosugeron yesterday and he does not know why my hip still hurts - he does not think it is from low Vitamin D, doesn't even address it. He wants me to go back to the ortho to have more steriod shot again. I do not want to do that - had 7 shots all together in my back and hip in the last year - I don't want to even think what it is doing to my body.

I hope I do this right, I wanted to address each of you that answered my cry for help:

dallasgrl:
What is a Endo doctor??? Do they specialize in vitamins??? My doctor says she thinks I just am not absorbing D, and it might take a year to build it back up but she won't try to find out why. My obgyn wants me to take the same hormone that yours wants you to. He said I am in menopause because I will get dizzie heady and shakey then I break out in a cold sweat. And that I am so teary and nervous - gee - maybe it is because I HURT SO MUCH and they keep using me as a ginnie pig.
How long was it after you took the high dosages that you were retested??

Neckpatient:
The rhumie wants me to take gabapentin but I have not even filled the prescription and I don't plan to. I have too many problems to cause more from this.

I am so sorry that you have had to go thru all this too. What kind of doctor do you go to for the low D? Your symtoms are so much like mine! I keep telling the doctors that my hip pain seems to be from my hip to my knee and in the bone. They just look at me like I am nuts.
I did improve some after I started taking the first mega dose but not much. And it seem like after the second month that I was on the smaller dosages (2700 units a day), I was getting worst. I tried to get my doctor to check my level after I took the high dosages and then after a month or so on maintance to see if it started dropping but she does not do it that way.
Do your hands tremor??? Mine do sometimes so much that I can't hold a book steady.

K2626:
My feet sometimes hurt so bad that I dread walking. I do get pulsating pains but my right hip hurts about all the time. Sometimes it is a burning feeling from my hip to my ankle, then other times it is just pain, especially when i try to walk up steps. I have to hold to the wall or rail to do it. Sometimes my knees hurt so much, then other times my neck hurts and I can feel it crack. I get horrible headaches. I feel so tired that I can't function or think because of brain fog. Even my skin hurts.

Where is your side pain??? I have had to deal constipation and gassy problems at times. My obgyn did a pelvic and when he pushed on my side it hurt alot. He said that my colon had enlarged veins and where the pain was located was where my colon was.
Let me know what happens after your test.
I have problems with varicose veins in my legs and I have to go to a vasular doctor because my regular doctor said the veins were leaking blood at my ankles and I need to get them lasered.
I had not heard of colitis but I have wonder about problems with my colon because I do know vitamin D is absorbed in the colon. I have been eating alot of yogurt trying to get the consitpation under control and it seem better if I eat a small bowl every morning and every evening.

Thank you all so much - maybe we can get to the bottom of this!

Mary

 
Old 08-14-2008, 09:30 PM   #9
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Re: Vitamin D - still low!!! need help understanding it

Hi Mary. My side pain they think is IBS as my scope came back clear.

With your pains, does it feel like your bones/joints hurt in your feet or mainly your muscle? Mine is all bone/joint pain. It has gotten a bit better, but still its me, usually now my fingers, ankle or feet. Also my feet buzz from time to time and my muscles twitch.

Next and final test is for Lyme, otherwise I am chalking this up to the low d

What is your d level at?

 
Old 08-15-2008, 06:47 AM   #10
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Re: Vitamin D - still low!!! need help understanding it

Mary, Endo means endocrinologist. They are the ones that check for diabetes, thyroid problems, and yes, vitamin deficiencies. I was on the high dose for 3 months and then after another 3 months was re-tested and was fine. Then, another 6 mths went back to her because she monitors my thyroid too. She re-tested then and I was low again.

 
Old 08-16-2008, 05:50 PM   #11
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Re: Vitamin D - still low!!! need help understanding it

Quote:
Originally Posted by dallasgrl View Post
Mary, Endo means endocrinologist. They are the ones that check for diabetes, thyroid problems, and yes, vitamin deficiencies. I was on the high dose for 3 months and then after another 3 months was re-tested and was fine. Then, another 6 mths went back to her because she monitors my thyroid too. She re-tested then and I was low again.
Thank you so much for this info - I thought there had to be a doctor that specialized in this!

Last edited by tnquilter; 08-16-2008 at 05:51 PM.

 
Old 08-16-2008, 06:03 PM   #12
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Re: Vitamin D - still low!!! need help understanding it

Quote:
Originally Posted by k2626 View Post
Hi Mary. My side pain they think is IBS as my scope came back clear.

With your pains, does it feel like your bones/joints hurt in your feet or mainly your muscle? Mine is all bone/joint pain. It has gotten a bit better, but still its me, usually now my fingers, ankle or feet. Also my feet buzz from time to time and my muscles twitch.

Next and final test is for Lyme, otherwise I am chalking this up to the low d

What is your d level at?
My level was at 14 in the beginning. After 4 weeks of 100,000 units, then 8 weeks of 50,000 units then 2 months of 2700 units a day, it was at 30. The rhumy said it needed to be between 50 - 80. She did not test it after the 12 weeks to see what it was but waited. Should I have her test it at the end of this 12 week session and then again in 3 months to see if it drops???

My pain in my feet feels like bone & joint. I hurt all over - sometimes it is hard to tell. My hands hurt and it feels like the bones or the ligaments.

I talked to a holistic practioner today that did something called Raindrop Therapy - ever heard of it.
She made alot of sense about the fibro and she feels alot of the pain could be from the D not fibro and from the mafasical pain which she said was tendon pain.
Will let you know more later - but I do know that my neck was hurting so bad that it was giving me a headache which is happening alot - and she rubbed something on it and after about 60 second the pain was gone! She sell this lotion and I plan to buy it. She was doing a seminar at large health food store about her treatment and her experience with her own Fibro before researching and later becoming a practioner to help others. I am going to make an appointment for an one on one consultation which is free. Will let you know what happens.

She did tell me to take a tennis ball and put my feet on it and roll back and forth at bedtime to see if it helps my feet from being so sore and painful in the morning. - gonna try it tonight.

Do your hands shake or tremor?? Mine do!

Thanks so much for your help - let me know what happens on your next test! I am so glad the colon test was okay.

Last edited by tnquilter; 08-16-2008 at 06:05 PM.

 
Old 08-16-2008, 09:18 PM   #13
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Re: Vitamin D - still low!!! need help understanding it

Hi there no never heard of that therapy! My bone and joints hurt too and the pain jumps around it has gotten better though. So you still have pain now with your level higher?

I get a trembling feeling from time to time but mainly my other symptoms are extreme joint cracking, twitching muscles and a buzzing feel in feet/leg.

Keep in touch!

 
Old 08-22-2008, 05:55 PM   #14
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Re: Vitamin D - still low!!! need help understanding it

My daughter has a friend that is a endo doctor and she talked to him about my problems and he wants to see me on Tues (Aug 26). Told me to bring my blood test results and any other doctors' reports.

I got my blood test and it shows my D3 was at 14 and my D2 was at < 4, the vit d 25-OH Total was at 14, when this started. This was in March, the last test was in July and it did not give me the breakdown (gonna call them on this) but it said the total 25-OH was at 30.

She said the everything on the first complete test was normal but when I received it it showed the Sed R was flagged as high with 24.00 and normal was 10-20. What is this, does anyone know?
Also she only did a TSH test now the T3 or T4 and it was 1.65.

Any questions I should have ready for him????

Today was a bad day - I feel awful. My head hurts, my neck feels numb and my body aches. My hip and the long leg bone hurts so much, I can not put weight on it when I go up stairs at all. I have not slept much the past few nights because my leg hurts all the way to my ankle.

Thanks for listening!!!!

 
Old 08-30-2008, 05:48 PM   #15
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Re: Vitamin D - still low!!! need help understanding it

Like dallasgrl, i too have Hashimoto's Thyroiditis and vitamin D deficiencies are very common with people who have thyroid issues, as are low ferretin (iron storage), gluten intolerance (which leads to nutritionals deficiencies), malabsorption of nutrients due to other things possibly linked to digestion problems.

A lot of doctors will commonly only test TSH, which deosnt mean much, particularly if it cames back ok. They need to also test T3 and T4 as well as Thyroid Antibodies.

My TSH, T3 and T4 were all within range, but not at optimal level. Not many doctors would test further in that case. Fortunately i didn't give up and ended up seeing a Trichologist (hair/scalp specialist) due to my abnormal hair shedding too and he ordered the Thyroid Antibodies test which showed my antibodies to be extremely high. He packed me off to a thyroid doctor as soon as he could.

The Trichologist was the only doctor ever to check my vitamin D and he told me that the dosage of the over the counter Vit D is too low and got me to take 5 times more. I'm still on 5 times more at the moment and it's taken me a year virtually to get from below low to the higher end of normal. My thyroid doctor wants me at the highest end of normal.

I also had a stool analysis and this showed my pancreas as not providing sufficient enzymes to digest protein. Now i'm on prescription digestive enzymes. Should be interesting to see, now that i'm digeting better and therefore ought to be absorbing more nutrients, how my levels go.

 
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