Severe Vitamin D deficiency, anyone been through this?

[BeekeeperBetty]

Since you linked to Mercola, I think we are coming from a very different place, and can never agree. I'll leave this discussion, then, but please do some research when choosing "alternative" health choices (and read about Mercola, scary dude indeed). I personally really enjoy the Science Based Medicine website since it is a collection of highly trained specialists in various fields.

And lastly, depending on the specialist, testing for vitamin D may not be routine. My husband never tests for it, because it isn't an issue in the population he sees, but my BFF is an internal medicine doctor, and tests all of her patients for it. It's very common in the elderly who don't get much sun. I'm assuming by "bone doctor" you mean Orthopedic, who are surgeons, in general, so I'm not surprised they don't test for it. There's a major difference in the training between medicine physicians like my husband and surgeons.

I wish only the best for you and your family. I hope you find healing.

 

[AGBF]

Since you linked to Mercola, I think we are coming from a very different place, and can never agree. I'll leave this discussion, then, but please do some research when choosing "alternative" health choices (and read about Mercola, scary dude indeed). I personally really enjoy the Science Based Medicine website since it is a collection of highly trained specialists in various fields.

And lastly, depending on the specialist, testing for vitamin D may not be routine. My husband never tests for it, because it isn't an issue in the population he sees, but my BFF is an internal medicine doctor, and tests all of her patients for it. It's very common in the elderly who don't get much sun. I'm assuming by "bone doctor" you mean Orthopedic, who are surgeons, in general, so I'm not surprised they don't test for it. There's a major difference in the training between medicine physicians like my husband and surgeons.

I wish only the best for you and your family. I hope you find healing.

I wish that you were not "going", BeekeeperBetty. I really believe in the medical research being done in traditional medicine that seems to be producing cures, even if I wished that the pharmaceutical companies and insurance companies had less control over it. I even think that in many cases the desire of the pharmaceutical companies for money does drive productive medical research. I am skeptical of illnesses for which there is no test and cures that cannot be replicated in a lab.

AGBF

 

[MarionC]

I just typed in all the symptoms on google and came up with "leaky gut". Is that a real diagnosis? I have a friend who talks about her leaky gut, and my DD has taken supplements that supposed make a candida die-off.They made her quite ill. What do any of the posters here know about leaky gut, etc?

 

[missy]

Just wanted to add after reading the most recent replies that my orthopedic doctor regularly tests for vitamin D levels in his patients blood work. In fact it is a critical part of the testing he does before he performs surgery on his patients. This is at one of the best orthopedic hospitals in the world. HSS. Hospital for Special Surgery. This is the way it should be done. Vitamin D blood level testing is critical.

 

[Ellen]

Since you linked to Mercola, I think we are coming from a very different place, and can never agree. I'll leave this discussion, then, but please do some research when choosing "alternative" health choices (and read about Mercola, scary dude indeed). I personally really enjoy the Science Based Medicine website since it is a collection of highly trained specialists in various fields.

And lastly, depending on the specialist, testing for vitamin D may not be routine. My husband never tests for it, because it isn't an issue in the population he sees, but my BFF is an internal medicine doctor, and tests all of her patients for it. It's very common in the elderly who don't get much sun. I'm assuming by "bone doctor" you mean Orthopedic, who are surgeons, in general, so I'm not surprised they don't test for it. There's a major difference in the training between medicine physicians like my husband and surgeons.

I wish only the best for you and your family. I hope you find healing.

Beekeeper, you assumed right. Bone doctor = orthopedic doc. I just figured everyone would get that. "bone" is shorter to type.

And actually, Orthopedics is not limited to surgery. Here is a great explanation of what all they can cover. Note:
Orthopedics Defined:
In a nutshell, the study and research of the musculoskeletal system (bones, joints, nerves, etc.) is known as orthopedics. Orthopedics was first developed to treat children who had crippling or debilitating diseases. In fact the word “orthopedic” is derived from the Greek words “ortho,” meaning straight, and “pais,” meaning children or pediatric. Modern orthopedic physicians treat everyone, no matter their age. In general chronic pain, rheumatic diseases, musculoskeletal injuries and arthritis all are part of the large umbrella orthopedics.

Please do note the extensive list further down the page, they treat a myriad of problems. Which is why my son went to see them. Unfortunately, all they could tell him was he had some arthritis and he was too young to be in this much pain. Thank you for the well wishes.

http://www.ibji.com/blog/2011-12-08/what-is-orthopedics

 

[ksinger]

Deb -

I don’t think medical research is producing “cures”, but I get your meaning. And I think, like you, that more progress would be made if funding for medical research, especially the kind not related to drug development, was done publicly, rather than subject to the whims of pharmaceutical shareholders and CEOs. Agreed on the difficulty of conditions that can't be tested for, which generally means the medical understanding of the process is severely lacking, and agree that medications need to be more rigorously scrutinized by both researchers and the public, for efficacy. Mental health "disorders" come immediately to mind, but that is a whole other topic, and my position on the topic would set me crosswise of almost everyone here I suspect.

Jimmianne -

No, “leaky gut” is utterly made up, not a real diagnosis.

Missy -

Not everyone is so fortunate to go to “one of the best orthopedic hospitals in the world”. And your doc testing his patients before orthopedic surgery, is not the same as EVERYONE needs vitamin D testing, which is kind of how the common person seems to see it. In a world of true overuse of medical tests, it is right and proper that vitamin D tests be assessed like any other for cost/benefit.

http://www.bcbs.com/healthcare-news/plans/most-people-dont-need-vitamin-d-testing.html
http://www.medscape.com/viewarticle/835369

Now, understand, I’m not saying that Ellen’s very symptomatic son should not have been tested, or that there might not come a time when testing of otherwise asymptomatic people for D level might not be indicated, but for now…

I say all this as someone who was at 13, and with massive supplementation, is still just in the low 40s. For me, for many reasons, supplementation is absolutely crucial. But I don’t know how much would have been different if I’d known all this 20 years ago, and I certainly don’t feel any different now than I did before starting to supplement, so…

 

[Ellen]

I just typed in all the symptoms on google and came up with "leaky gut". Is that a real diagnosis? I have a friend who talks about her leaky gut, and my DD has taken supplements that supposed make a candida die-off.They made her quite ill. What do any of the posters here know about leaky gut, etc?

Jimmianne, here is a link with nice visuals on leaky gut. This is why diet change so often works/improves health. Do a search on healing leaky gut and you will get a ton of info.

http://draxe.com/4-steps-to-heal-leaky-gut-and-autoimmune-disease/


And here is a link on Candida die off. I have not read all of this one in particulcar, but have definitely read of the "die off" effect when changing diet/incorporating health foods.

http://www.thecandidadiet.com/candida-die-off.htm

HTH!

 

[Ellen]

Thanks Missy.



Well well, if it isn't my good friend K. What would a thread be without you showing up!?? HELLOOOOOO

 

[missy]

Missy -

Not everyone is so fortunate to go to “one of the best orthopedic hospitals in the world”. And your doc testing his patients before orthopedic surgery, is not the same as EVERYONE needs vitamin D testing, which is kind of how the common person seems to see it. In a world of true overuse of medical tests, it is right and proper that vitamin D tests be assessed like any other for cost/benefit.

http://www.bcbs.com/healthcare-news/plans/most-people-dont-need-vitamin-d-testing.html
http://www.medscape.com/viewarticle/835369

Now, understand, I’m not saying that Ellen’s very symptomatic son should not have been tested, or that there might not come a time when testing of otherwise asymptomatic people for D level might not be indicated, but for now…

I say all this as someone who was at 13, and with massive supplementation, is still just in the low 40s. For me, for many reasons, supplementation is absolutely crucial. But I don’t know how much would have been different if I’d known all this 20 years ago, and I certainly don’t feel any different now than I did before starting to supplement, so…

Karen, I was responding specifically to Betty's comments that orthopedic surgeons don't need/or usually test for D blood levels. And it is becoming routine testing for every general medical practitioner in NYC at least. I am always talking from MY perspective and sharing my views as I see them. So yeah not everyone is fortunate to go to the "best" doctors and hospitals (and that is incredibly subjective anyway I was just saying that to emphasize my point) but at this juncture in time D blood level testing should be standard of care. IMO.

I agree with Ellen. Her son's doctors dropped the ball. IMO.

Karen, what are you taking for supplementation and when do you take it?



Ellen, You are very welcome. Continuing to keep your son in my thoughts and prayers for a full recovery.

 

[ksinger]

Missy -

Hmmm....don't know what happened to one of my links. I can't get in now without a login. It was a public (I thought) 3 pager on government task force recommendataions. Oh well, this one is good though. Same thing, basically.

http://www.health.harvard.edu/blog/vitamin-d-testing-recommended-people-201411267547

I would be interested then, as to how you address the points made by the US Preventive Services Task Force, that say (at this point and with the current state of knowledge) that we don't need routine testing. Do you simply disagree with the points they make?

1) "low" vitamin D levels are not agreed upon, meaning neither is "normal" level.
2) testing is not standardized
3) typically does not change Dr recommendations
4) is low vit D a cause or an effect?

As for what and when I take it, I take D3, with K2 when I can find it, without when I can't. I take 5000 IU doses whenever I think about it. I was taking...gosh..maybe 70,000 IUs a week? Now maybe 20-35,000. I've been supplementing for over a year. now, still only at 42.7 (last reading) and kinda holding. But I'll take it. It's well over the lowest estimate of what is enough (20), over the other higher estimate of enough (40) but not into sorta scary land (over 50).

 

[missy]

Hi Karen, posting on the go from my phone but I will attempt to address your questions.

I think it is safe to have your levels in the 50-100 range with 60s, 70s, 80s preferred over the 50s and I don't think 42 is enough, My opinion from my background in science and medicine and all my reading on this topic.

I would say try my vitamin k that I linked above and try being more regular with your vitamin d3 supplementation and perhaps bump up your dose for 3 months and get tested again. Try 6-8000 IUs of D3 daily with vitamin K for 3 months and see how it affects you. Under the supervision of your physician of course as I am only generalizing and cannot give out medical advice. Just suggestions and check anything you want to try with your physician first. This advice applies to anyone reading this.

In addition to K there are other factors that influence your D absorption. Magnesium is important as a few others. Hope this link is informative. Googling from my phone on the go lol.

https://www.vitamindcouncil.org/about-vitamin-d/vitamin-d-and-other-vitamins-and-minerals/

As you pointed out science and medicine is rarely black and white and there are often more questions but it would not hurt for you to try upping your D and seeing how you feel and how it affects your symptoms as long as you are under medical supervision and make sure you are being monitored.

ETA: often guidelines are influenced by cost. Be wary of govt recommendations.

 

[lyra]

Has he been evaluated by a rheumatologist? I have Ankylosing spondylitis, and share many of the symptoms your son is experiencing. It's an autoimmune disease. I also have rheumatoid arthritis. I'm on a biologic, which works wonders for me. People with this type of autoimmune disease are also prone to celiac and ulcerative colitis. The testing involves a blood test for a specific gene, BLH 27. I'm also on scrip vitamin D because my levels are low, much like your son's. Just a thought. The gene testing is pretty straight forward.

 

[lyra]

Doh. I always get the gene wrong it's HLA B27.

 

[Ellen]

Missy -

Hmmm....don't know what happened to one of my links. I can't get in now without a login. It was a public (I thought) 3 pager on government task force recommendataions. Oh well, this one is good though. Same thing, basically.

http://www.health.harvard.edu/blog/vitamin-d-testing-recommended-people-201411267547

As for the "exception" list for who should actually be tested, they missed the elderly, who are prone to being low, along with people of color, who are notorious for being low.

This article stands in glaring contrast to many in the health field who feel every one should be tested, that there is an epidemic of deficiency at hand.

For anyone interested, read the comments at the end of the article. (I have found often times I glean more information from the comments than from the article) The second comment says "mine is below 4. I disagree. I have pain all over, depression like I’ve never had and THIS should be mandatory in my opinion."

I won't quote more, but there are some rather telling statements.

Here are two books I am reading now, both written by respectable physicians, one of whom was a former assistant Clinical Professor of Medicine at UCLA. Just reading the lengthy overviews will tell you how important D is, and why everyone should want to know what their levels are. They both state everyone should get tested, and go in depth about the myriad of symptoms and diseases Vit D may/does play a role in helping.

http://www.amazon.com/Power-Vitamin-Scientific-Practical-Information-ebook/dp/B0037QH0C0

Dr. Zaidi states starting doses for average adult with average weight of 150 as follows.
Less than 10ng/ml 15,000 IU daily
10-20 12,500
20-30 10,000
31-40 7,500
41-50 5,000

"As a guide, add 1000 IU's for each 20 lbs. above 150. And subtract 1000 for each 20 lbs. below.


http://www.amazon.com/The-Vitamin-D-Cure-Revised/dp/1118171071/ref=pd_sim_14_1?ie=UTF8&dpID=51CQeiOMtzL&dpSrc=sims&preST=_AC_UL160_SR106%2C160_&refRID=03TF7Q8GZWF42B3ZPVVQ

 

[Ellen]

Has he been evaluated by a rheumatologist? I have Ankylosing spondylitis, and share many of the symptoms your son is experiencing. It's an autoimmune disease. I also have rheumatoid arthritis. I'm on a biologic, which works wonders for me. People with this type of autoimmune disease are also prone to celiac and ulcerative colitis. The testing involves a blood test for a specific gene, BLH 27. I'm also on scrip vitamin D because my levels are low, much like your son's. Just a thought. The gene testing is pretty straight forward.

No, he has seen no specialist yet. This all happened fairly recently, and we have played the waiting game only to waist time with the last GP. At this point, I am trying to figure out which move/doc to take next. He has no insurance now, though he qualifies for Medicaid that hasn't kicked in yet. We are helping with groceries, buying him supplements and vitamins, will be paying for counselor that doesn't take Medicaid, are waving the rent we were getting from him, etc. I don't have the money to waste with making a bunch of wrong moves. I think I am going to consult his old pediatrician (because I am getting zero help from any other doctor), whose husband is also a physician. I figure between the two of them, maybe they can point me to the right specialist. Though, I am not at all convinced much of this isn't from the deficiency, in light of what I am reading in the books I linked above, along with comments from scores of other deficient people on line.

But thank you for asking lyra.

 

[GlamMosher]

Doh. I always get the gene wrong it's HLA B27.

Waving hello from another HLAB27+ member! I have had one fairly viscous bout with uveitis which is when I was tested as it was pretty bad. Luckily it hasn't flared since but it is likely to at some point.

I have low D and B12 due to pernicious anemia, again diagnosed with a blood test after the DNA testing. My D was pretty low, can't remember the numbers now, but I don't think I ever had physical pain from it.

Lyra, AS is a pretty serious condition to have - I hope you aren't in too much pain and it is under control. I have seen a rheumy for it as I suffer with back problems, but he nicely told me I was too old to be diagnosed with it. Not that I couldn't be diagnosed now, but that my back would show much more damage at my age as i would have had it for some time. There is debate about that too online, but that is what he told me here is Australia.

 

[lyra]

Doh. I always get the gene wrong it's HLA B27.

Waving hello from another HLAB27+ member! I have had one fairly viscous bout with uveitis which is when I was tested as it was pretty bad. Luckily it hasn't flared since but it is likely to at some point.

I have low D and B12 due to pernicious anemia, again diagnosed with a blood test after the DNA testing. My D was pretty low, can't remember the numbers now, but I don't think I ever had physical pain from it.

Lyra, AS is a pretty serious condition to have - I hope you aren't in too much pain and it is under control. I have seen a rheumy for it as I suffer with back problems, but he nicely told me I was too old to be diagnosed with it. Not that I couldn't be diagnosed now, but that my back would show much more damage at my age as i would have had it for some time. There is debate about that too online, but that is what he told me here is Australia.

Hi GlamMosher!. Don't mean to derail this thread. I was diagnosed at 51. It explained everything that had been wrong physically for decades! It's crazy how everything is connected to one point, and that it took a blood test to put the puzzle pieces together finally. I was pretty shocked, as was the rheumatologist. He's using me as a case study because I have some atypical non-issues actually. So yes, there is active debate going on about all of this. Unfortunately, we've also discovered that both my daughters are also positive. One is celiac and has joint issues. The other has psoriasis and has chest chondritis. We only found out after I was diagnosed 2 years ago. I had anemia too, quite bad but not pernicious. At least my daughters know what's going on as early as possible. They are 25 and 28.