Osteomalacia and Vitamin D

I have been diagnosed with Osteomalacia and have been on 7,000 IUs of D3 a day.

It hasn't seemed to help in the last 2 years, so I was recently placed on Calcitriol.

That has helped a lot with the bones but the D levels have gone high. 1, 25 was 83 3 weeks ago and that was before the calcitriol was increased 1 more pill for a total of 3 pills. .25 x 3.

The calcium levels are low at 8.5 still. Is there any danger with the higher D 1, 25 level.

How high should I be concerned with since I will be getting another more recent result back tomorrow and it may be higher since the dose was increased. Since lowering the dose I have been having problems with the bones again.

Comments for Osteomalacia and Vitamin D

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Osteomalacia and Vitamin D
by: Kerri Knox, RN- The Immune Queen

Wow! This is a complicated issue.

More About Vitamin D

I don't know any more of your story, but I'm betting that you have a lot of other health problems going on too, right? Again, while I don't know for sure, it SOUNDS like you are trying to manage this issue completely through Supplements and Pharmaceuticals.

But you may be better served by looking at your LIFESTYLE. You got osteomalacia because of certain lifestyle and dietary habits. Have you CHANGED any of your habits that got you INTO this in the first place? For instance. The absolute most efficient way to get Vitamin D- and the way that humans are MEANT to get it is through SUNSHINE!

And the way that we build bones is not through taking pills, but by doing Weight Bearing and Strengthening Exercises.

So, you can get BOTH of these by going out for as vigorous a walk as possible every day in the sunshine while exposing as much skin as is legal and comfortable for you. Then, you could begin to start walking while using small weights in your hands or dong modified push up's along the route, etc.

Of course, this is all dependent upon you getting a doctor's OK to get exercise and how much sun exposure that you feel comfortable getting. But if you've been told to stay OUT of the sun, don't be so quick to listen. We have been told NOT to get sun exposure- yet millions are now getting Osteomalacia and Vitamin D deficiency related problems!

So, what's the tradeoff?

Kerri Knox, RN- The Immune Queen
Functional Medicine Practitioner
Easy Immune Health.com

Osteomalacia and Vitamin D
by: Anonymous

Hi Kerri,
Thanks for the reply. Yes there is a lot more going on, but I didn?t want it to be overwhelming. But if my story helps anyone else that would be great.

About 4 years ago I told the doctors I had a lot of pain and felt the bones move in my mouth. No one believed me so I would go home suffer, cry and pray.

Thank God my best friend recommended an advanced Dental School and they found 2 infected root Canals affecting the bone.

What people may not know is that if you have a root canal, you wont feel pain in the tooth if it gets infected, but in the bone. (I have since heard of 3 younger people dying from this).

When the teeth were pulled it broke bone. There was also a mass in the right sinus. However, due to previous TMJ dislocations and to avoid more surgery, I was placed on 16 rounds of antibiotics over about 6 months!

No one mentioned when you are on antibiotics you need to be on probiotics, so little by little I came up very low in many vitamins/mineral and felt like I was dying.

The mass never went away so surgery was advised. 3 other fractures/micro fractures occurred in the sinus/mouth area. I haven?t been able to talk, chew or sleep normally and have had to sleep sitting up since 2006.

After the 2nd surgery I was referred me to an endocrinologist and diagnosed with Osteomalacia.

What I recommend is if bones are softer or moving and shouldn?t be? don?t have surgery or be placed on antibiotics. Instead get a complete workup to check vitamin levels especially Vitamin D and calcium. Also look into possible infections especially if it is in the mouth area and you have had previous root canals.

Even though I live in a very sunny climate, due to the infections, I have been cold a lot and have had drenching night sweats. I have forced myself to walk (about a mile) but have a sweater on. Since the surgeries and skull fractures it has been harder ? moving around is so painful. Even so, I force myself to.

It has been a long hard road to recovery. Due to the antibiotics, my ability to assimilate vitamins/minerals was affected.

I have been on thousands of dollars of vitamins/minerals since then. With the addition of the Calcitriol there has been a little more improvement.

I take 2,000 mg of Calcium and other vitamins and bone building minerals. I drink 2 glasses of milk, eat ½ cup of cottage cheese and a few slices of cheese a day. I am doing all I can, yet the levels remain low, even with the Calcitriol which is supposed to help absorb calcium.

Since my question, the Vitamin D 1,25 levels dropped down to 29 from 83 (even though I was on higher Calcitriol levels ? 3 pills instead of the 2), it doesn?t make sense. I would like to be able to get off all the vitamins/minerals and function normally.

It is my prayer for a complete recovery. If my story can help others in the meantime that would be great.

Complicated Vitamin D and Osteomalacia Issue
by: Kerri Knox, RN- The Immune Queen

WOW! That IS Complicated.

Your story very much moved me. Thank you so much for sharing such a sensitive issue!

You definitely are learning the hard way about Antibiotics and Probiotics as well as the Dental Industry!

That is great that you are really trying to solve your problems, it sounds like you still have a hard road to go though.

So, I DO think that you need to try to get out in the sun for several hours a day and expose as much of your skin as possible without freezing to death!

If you can get out in the EARLY MORNING sunshine, even if you are wrapped up in blankets, that can help. The early proponents of 'Heliotherapy' or sunshine therapy found that Early Morning sunshine caused incredible healing- you could even set up a heater next to you to keep you warm if you need to, but getting outside and getting sunshine on your skin as much as you can is going to be imperative for you.

Also, there are some dietary changes that you could make that could begin to HEAL the 'Leaky Gut Syndrome' caused by all of the stress and the antibiotics. They are too extensive to go into here, but an anti-inflammatory diet and elimination of food allergens could really help you!

Also, thanks for mentioning the problems with the modern dental industry and with root canals. These problems are not very often mentioned, but root canals can be very dangerous. They make a lot of money for the dentists, but don't often solve the problems that they are designed to solve.

An EXCELLENT E book called "Money by the Mouthful" discusses this topic EXACTLY and why the dental industry has hardly changed in over 50 years- using old barbaric techniques of "Drill, fill and bill". Written by a dentist who was vilified for his discussion of this topic, it is an Excellent and Highly Recommended Read!

by: Anonymous

Hi Kerri,

Thanks for the good tips. I will try to get in the sun more and it is helpful that it is getting warmer now.

The ironic thing is that my dad was a dentist and my mom a dental hygienist and I managed a dental office. We were always taught that you do all you can to try to save the tooth by getting a root canal instead of having the tooth/teeth extracted and have to wear a partial or dentures. Never once was I ever aware of the concerns and care you need to take if you do have a root canal. Now I know and would recommend to anyone who has them to keep an eye and be sure to get them checked when you go to the dentist to avoid anything like what I went through.

Thanks again for your input!

Calcitriol (Vit D) Question
by: Anonymous

Hi Kerri,

I wrote earlier about an issue with Osteomalcia. I appreciate your input and also the emails from people with Vit D questions.

The recent blood tests showed the Calcium levels are coming up finally to 9.2...which is good, but the PTH levels have gone down to 13, which isn't good. I have also gained weight on Calcitriol. Yet the Calcitriol is really helping with the osteomalacia and the bones are trying to set.

I cant wait to talk and eat and sleep normally again and want to get well quicker (since this has gone on for almost 3 years). I asked my doctor if I could increase the Calcitriol levels (they are 1 mg a day, which is already high) and he doesn't recommend it due to the PTH levels going lower.

The Vit D, 25 is 45 and D 1,25 is 31.
Any thoughts on how to raise the PTH levels, yet stay on the calcitriol since it is helping?

Getting Calcium Levels Up with Vitamin D
by: Kerri Knox, RN- The Immune Queen

Well, seeing as Vitamin D is responsible for

More About Vitamin D

absorbing calcium, with your doctor's permission you could try getting your Vitamin D Levels up even higher.

Vitamin D Toxicity does not occur until your level is over 150 ng/ml (or closer to 250 ng/ml depending upon what research you look at), so getting your level up to 75 or 80 COULD potentially help you to absorb more calcium.

However, I do not know what this would do to your parathyroid levels, so this is DEFINITELY something that you need to discuss with your doctor to be safe!

Kerri Knox, RN- The Immune Queen
Functional Medicine Practitioner
Easy Immune Health.com

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