clairenotes
Frequent Contributor (1K+ posts)
Member # 10392
posted
We have found that we do very well with vitamin D3 as long as it is the dry non-allergenic vitamin D3 (twinlabs). I feel it is having a very good effect for my daughter especially. Other brands made her feel worse.
But there is a lot of controversy about vitamin D3. Some of the people doing the Marshall Protocol feel they have to abstain entirely from Vitamin D while they treat lyme disease. I still don't completely understand all of the dynamics involved even after much reading... something having to do with a different biochemical process affecting Vitamin D when the symptoms of sarcoidosis exist, I think.
Others will be able to explain this better.
There are tests that can be taken to see if vitamin D3 needs to be supplemented or not.
Claire
Posts: 1111 | From Colorado | Registered: Oct 2006
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aklnwlf
Frequent Contributor (5K+ posts)
Member # 5960
posted
What I did was look on the Internet for symptoms of a Vit D3 defiency.
I take prescribed 50,000 once a week.
-------------------- Do not take this as medical advice. This comment is based on opinion and personal experience only.
Alaska Lone Wolf Posts: 6164 | From Columbus, GA | Registered: Jul 2004
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posted
I just know if I take my D3 with calcium like I'm supposed to (I'm 56), my nails are great! If I run out of D3 and just take calcium, my nails look like I'm calcium deprived.
Not much of a medical opinion, but my LLMD's opinion is that I take the D3.
Posts: 108 | From Florida | Registered: Sep 2005
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Vitamin D is a group of fat-soluble prohormones, the two major forms of which are vitamin D2 (or ergocalciferol) and vitamin D3 (or cholecalciferol).[1] The term vitamin D also refers to metabolites and other analogues of these substances. Vitamin D3 is produced in skin exposed to sunlight, specifically ultraviolet B radiation.
A prohormone is a substance that is a precursor to a hormone, usually having minimal hormonal effect by itself.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
Vitamin D is important to prevent autoimmunity from developing. In Lyme, where we have intracellular pathogens riling up our immune system and inviting them to attack our own tissues, it is very common to develop autoimmune disorders as a result. My mother was diagnosed with Sjogren's Syndrome (before we knew she had Lyme), and also a severe Vitamin D deficiency. After several months of 5000iu of Vitamin D daily, her Sjogren's antibodies dropped to zero. The autoimmune condition was cured entirely by the Vitamin D. Of course, she still felt awful, and that led to her eventual Lyme diagnosis.
Sooner or later, you're going to hear about the Marshall Protocol. There do exist a rare subset of people who have low 25OHD (the less active precursor form) and very high 1,25OHD (the active form of Vit D). In these people with dysregulated Vitamin D (many of them have Sarcoidosis) the Marshall Protocol makes some sense and is often effective. For the majority of people though, it is unproven, ineffective and can be dangerous. I've heard occasional reports of it helping Lyme, and frequent reports of it making Lyme far worse. My own LLMD, a prominent ILADS figure has a very poor opinion of it.
Posts: 195 | From Manchester, CT | Registered: Jun 2008
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
There's different views with Vitamin D3 when it comes to lyme. Some think you shouldn't take it because it feeds the lyme, and some think it's very important.
I myself know that I feel better when I am on high levels of Vitamin D3. So, for me, in my opinion, I think it's very important.
I'm also very low in Vitamin D3 since we've done testing a few times.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
I tested my 25D and 1,25D (the active metabolite) and found that my 1,25D was elevated to the point where I had hypervitaminosis-D.
At the time, I'd been taking large doses of Vit. D supplements on the basis of data about how needed it was. My Lyme symptoms had not improved.
The situation of hypervitaminosis-D has been confirmed by DEXA scan, showing low bone density, although I took calcium, magnesium and vit. D for YEARS!! And, I do active, weight-bearing exercize.
Resorbtion of bone is a problem with high 1,25D.
I also have chronic low body temperature, despite treating for thyroid problems for over 2 years. This is another indicator of hypervitaminosis-D. It is also common in Lyme.
Since I have eliminated most Vit-D foods and no longer take the supplements, many of my Lyme symptoms have abated (I've also been taking Mepron and Zith). The ones that got worse while taking Vit D have gone away.
My temperature is now up to 98.3 on many days, instead of always 97.8 or lower.
In my opinion, you should get your Vit D tested (23OH and 1,25 OH) before going onto a Vit D supplement program.
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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posted
Yes, I agree that testing is advisable before supplementing vitamin D.
My test results were already high normal for 1,25 which is what gets supplemented. They were low for 25OH. Apparently that is a pattern seen in some lymies. And I was not supplementing D before the test, except for taking a multivitamin.
Don't know what you do about low 25 OH.
Posts: 8430 | From Not available | Registered: Oct 2000
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Shosty
Unregistered
posted
50,000 units gave our daughter an awful, extensive rash, and made her sick
many people w/Lyme are sensitive, so be careful!
for those w/autoimmunity or on meds that require avoidance of sun, supplementation seems like a good idea...I wish I had: now I have osteoporosis!
I have been so busy worrying about Lyme, and now have pain from spinal fractures...just trying to help others avoid this!
most people today are low in Vitamin D anyway: a disease of civilization, they call it...a large percentage of us are low or deficient, and sunscreen is making things even worse
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posted
Lou, you have that information backwards: 25OHD is what you affect by supplementing with D3. 1,25OHD is the active metabolite that is tightly regulated by the body. You are not able to reliably affect 1,25OHD by supplementing D3, because its production depends on other factors. For example, it rises and drops in response to calcium intake, so by consuming more calcium you can effect a drop in 1,25OHD levels.
The only exception to this occurs in those rare individuals with dysregulated Vit D metabolism, like in Sarcoidosis where bacteria are driving production of 1,25OHD independent of the body's normal process.
Posts: 195 | From Manchester, CT | Registered: Jun 2008
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quote:Originally posted by FunkOdyssey: The only exception to this occurs in those rare individuals with dysregulated Vit D metabolism, like in Sarcoidosis where bacteria are driving production of 1,25OHD independent of the body's normal process.
In case some here don't already realize, sarcoidosis bacteria, syphilis bacteria and lyme bacteria are quite similar, and belong to a class of bacteria with cell wall deficient forms.
Posts: 727 | From USA | Registered: Mar 2006
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posted
It is very easy to determine whether your particular flavor of bacteria are having any effect on your 1,25OHD levels with a blood test. If they are not abnormally high (above or at least in the top 1/3 of the lab's reference range, not high as defined by Trevor Marshall), then you are not suffering Vitamin D dysregulation, and you are not a good candidate for the Marshall Protocol. Vitamin D then represents a force of good, warding off autoimmunity and cancer while you do battle with Lyme.
If your 1,25OHD is high, also consider your calcium intake before embarking on any radical protocols. 1,25OHD is normally regulated in response to calcium intake, in order to absorb more calcium when intake is lower. If you successfully reduce a high 1,25OHD with calcium supplements, dairy products, etc, then your body is regulating Vitamin D metabolism correctly and you don't have to resort to the Marshall Protocol.
Posts: 195 | From Manchester, CT | Registered: Jun 2008
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sutherngrl
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Member # 16270
posted
Here is my story.... I had very low vitamin D levels before I knew I had LD. I had been ill for 2 years (FM diagnosis). I took high dose vitamin D, 50,000 IUs 2x a week. My vitamin D shot up to way above normal and my doctor took me off of it. I felt great for 6 full weeks while it was high; but when it came back down I became sicker than ever. Soon after I got my Lyme diagnosis. So IMO the D did act as a steroid, making me feel great; but all the while causing more damage. I feel that the Lyme did feed off of it. I don't take any D now because of this experience. I will take it once I feel that the Lyme is under control. I think a low dose every day might be okay; but I would never take high dosages of vitamin D again. Just because it makes you feel good, doesn't mean it is good for you.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
Yeah, you want to avoid abnormally high Vitamin D values the same way you want to avoid a deficiency. There exists an optimal range based on epidemiological studies that tracked a wide range of outcomes, and that range (for 25OHD) is 30-50ng/mL, or 75-125 nmol/L. 50,000iu of Vitamin D on a regular basis will certainly skyrocket you above and beyond that optimal range. For many people, 2000-4000iu daily (in the absence of significant sun exposure) will produce an optimal value, but this needs to be determined with blood testing and the dose adjusted accordingly.
Posts: 195 | From Manchester, CT | Registered: Jun 2008
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posted
Thanks for the correction, Funk. Guess I am getting tired of being my own researcher and want someone to explain it in simple terms.
If the 1,25 is in the upper end of range, then, and the other one is flagged as low, does that mean my D is dysregulated? That is what it sounds like, from your explanation.
So, if people are getting D supplementation, are they getting D3, or something else? And are they doing this because of D dysregulation? My doc did say D acts like a steroid, but did not explain the significance of my test results or prescribe anything.
Posts: 8430 | From Not available | Registered: Oct 2000
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Well, my lyme did go into an autoimmune disease...rheumatoid arthritis. My d levels were low and a genetic test reveals I am high risk for several cancers.
My doctor put me on 5000 IU Vit D3 daily and I experienced incredible improvement. Even the herboden nodules that had deformed 3 fingers shrank after starting the D3.
No way are you taking this vitamin away from me.
Sarcoidosis is a disease that requires you to avoid Vit d, but everyone else should have their levels tested.
Canada did a research on D that shows it cuts cancer risks by 60%. As a result, they have upped their RDA. America followed up this study and got the same results. America increased their RDA to 1500 IU daily for healthy people.
Avoiding the sun has not cut down the incidents of skin cancer in America and in fact, the rate has gone up. They have now decided we have become a nation deficient in D and it is causing increased cancers and increased autoimmunities.
As for feeding lyme or any other bug with nutrition, that is nonsensical logic. If you starve the bacteria of nutrition, you...who are already nutritionally starved....will die. The bacteria will simply find a new host.
Beef up your nutrition everywhere you are lacking. Yes it will feed the bacteria, but it will also feed your immune system which you must have in order to fight off the bacteria. Otherwise, you die, not the bacteria.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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posted
I'm glad so many see improvement on Vitamin D.
I am crippled inside a week if I supplement this vitamin/prohormone. Tried it twice, even the LLMDs recommended brand of D3. It's disastrous for me.
You need to read a lot about this "vitamin". The federal government and physicians are feeding the populace a great deal of misinformation about it.
Anything being pushed so hard by the powers that be should make you suspicious. Just like statins. Do your own research on them, too, see what you find.
Posts: 422 | From Luck home | Registered: Sep 2005
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posted
Vitamin D2, or ergocalciferol, is not the type of vitamin D we are supposed to take, it is formed by irradiating a fungus with UV light. As such it is easily produced by vitamin manufacturers, and it is easily manipulated. It is the type of vitamin D that is in the 50,000 IU prescription vitamin D. If our diets were primarily comprised of fungi, our liver and kidney enzymes would be adapted to it, they are not. Vit. D3 is the one to use.
I think it (D2) works very well INITIALLY for many, since it increases total vitamin D concentration and forces what little endogenous D3 is present into the vitamin D binding protein and receptor, but in the long run, will cause the good vit. D3 to be used up and therefore make the situation worse.
When the 1,25 is high, it is important to determine if it is so because of longstanding D deficiency and resultant calcium depletion or the result of metabolic derangement that could be sarcoidosis, or of some cancer, like parathyroid cancer. Any autoimmune disease (RA, Lupus, Sjogren's, sarcoid, etc.) can be the result of D deficiency or the cause of it, the chicken egg phenomenon has to be worked out to determine the proper course of action.
Of course, modern medicine does not see it this way, and usually throws potent immune system suppressors at the problem to suppress what is going on rather than understand it.
A phytoplankton in the ocean makes vitamin D3 when exposed to sunlight, filter feeders then get it, and it then starts its way up the food chain. It is an integral part of the web of life.
Posts: 442 | From Biddeford, ME | Registered: Nov 2007
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
mjo,
Vit D3 can be purchased at any health store. Not a money maker for the FDA or the pharmacutical companies.
Heck Vit D3 can be made in your own backyard. Just sit in the sun for 30 mins.
Sorry it made you sick, but the research is against you. Most of us are lacking this important vitamin.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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clairenotes
Frequent Contributor (1K+ posts)
Member # 10392
posted
I have always refused to believe that the sun is bad for us and stubbornly continue to work outside, sometimes for long periods of time without protection, except for a small amount of sunscreen on my nose. I have just never been able to resist the warm energizing effect the sun has on me and feel it is an important element in my life. And my skin does not appear to be getting compromised somehow. This is not to suggest that everyone can safely spend hours in the sun without protection, but this is how it has been for me.
Still, I hope those who do have an imbalance like sarcoidosis are able to clear that illness soon so that they may tolerate some sun and/or vitamin D.
Here are some links to some interesting articles on sun therapy:
posted
Dr. Luddite, can you explain how to determine the reason for higher levels of 1,25? Is this a whole bunch more testing?
My 25OH was flagged low and the 1,25 was in the upper end of normal range. So what are the implications of this and does this mean I should or should not supplement D3? What happens to the 1,25 levels when you supplement with D3?
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Information that can shed light on a higher than expected 1,25 level pertains to calcium regulation, therefore, all at once, if there is a question, 25 OH D, 1,25 diOH D, serum calcium, and parathyroid hormone should be tested, and the result of that snapshot evaluated critically.
If Calcium is low, along with 25 OH D and PTH and 1,25 di OH D are high, it is likely a strict D deficiency, if PTH is low-normal & 1,25 di OH D is high, I'd be leaning more toward a sarcoid picture, but if the individual is on a thyroid replacement meds, all bets are off because the thyroid also makes calcitonin, which is responsible for ferrying calcium into bone, and if you take thyroid replacement, the thyroid is suppressed, its blood supply decreases and the amount of calcitonin produced decreases. The relationships of these things exquisitely demonstrate the body's interconnectedness.
Posts: 442 | From Biddeford, ME | Registered: Nov 2007
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Clairenotes,
Me too! I can stay out in the sun for hours without even getting red much less tan. And that is while on doxycycline too.
Since I started taking Vit D3 though, all of the sudden I am tan. I read that as long as your body is deficient in D, you will not tan because the tanning is the body's way of saying "enough Vit D already," and the tan blocks any additional D.
Just amazing. I have absolutely no joint pain and am as active as I ever was. I think the Vit D deficiency explains why so many arthritic people feel better in the summer than the winter.
BTW, if you live north of Mississippi, they say you cannot get enough Vit D from the sun during the fall/winter months, so you should supplement.
Mjo, have you been tested for Sarcoidosis? That is one time you should not take Vit D and joint pain is one of the symptoms.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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posted
Thanks for your reply. It is clear that I would never have had the brains to be a good doctor. This is pretty complicated stuff.
Lyme attacks the thyroid in many patients and lots of us are on thyroid replacement therapy. In my case, it has also produced anti-thyroid antibodies, which apparently looks like hashimotos but isn't.
The best I can figure out is just to do a trial of D3, starting with a low dose. Or forget about the whole thing as a quagmire.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Lou I would opt for the vitamin D test, start at 400 IU of quality D3 per day and increase by 400 IU ever 3 days to a total of 2000 IU/day. Stop if you develop bad symptoms, but if you develop them at 2000 IU/d and not at 1600, go back to the 1600.
Posts: 442 | From Biddeford, ME | Registered: Nov 2007
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richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
From thwe LLMDs I have spoken with and the research I have done and reading books, the Marshall Protocol is not to be followed by Lyme patients. We NEED our D! I have been feeling a bit better since getting at least an our of exercise in the sun each day. Get your D!
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
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clairenotes
Frequent Contributor (1K+ posts)
Member # 10392
posted
Luvstoride -- that is interesting information regarding tanning and vitamin D. I am able to tan but notice that it fades more quickly now than it used to. Perhaps as my vitamin D3 stores continue to replenish this will change.
So glad to hear others aren't afraid of the sun as I sometimes question my behavior, and yet still totally compelled to persist .
Have appreciated others contributions to this discussion as well. The mechanics make sense with more exposure.
Claire
Posts: 1111 | From Colorado | Registered: Oct 2006
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posted
I'm a redhead. 15 minutes in the sun, I burn. It doesn't really matter what vitamin I take. I haven't, however, had a serious sunburn in 30 years. Reached a point I like to call "maturity" whereby I decided taking care of my skin was more important than trying to get the tan that other people could get.
I now see a dermotologist every 6 months. I have had basil cell and squamous cell carcinomas. Luckily, no malignant melanomas. Yet.
If you could take vitamins and get a tan, every redhead I know have beautiful, evenly tanned skin.
My D3 is prescribed based on testing. 1000 IU daily.
Wish I could stay in the sun!
Posts: 108 | From Florida | Registered: Sep 2005
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
Dr. L-
I take thyroid replacement (Syntyroid/Cytomel) for hypothyroidism. Some say that there are trace amounts of Calcitonin in Armour but I don't like Armour. Is there a way to supplement Calcitonin? Via Salmon or otherwise?
My 25OHD has been low but my active D is also low normal so I've been supplementing D3. It's hard for me to know whether this is the result of an infectious condition or perhaps sub-optimal thyroid treatment....
Strangely, my ferritin trends low too.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Paula
Vit D is the God given vitamin that makes people tan. The body tans when it has had enough Vit D. It is no accident that people who live in hotter regions are naturally dark and people like yourself who live in colder regions are very fair skinned. Your sunrays are weaker and your skin must take in more sun in order to meet your need for Vit D.
My husband is irish although he had black hair when he was young. He can burn in 15 mins and has always lathered suntan lotion on at even the hint of going outdoors.
I am welsh/english heredity and look it, but on my mother's side of the family is indian blood. So, I would have to lay on the beach 8 hrs or more before turning pink. In my youth, I tanned medium and did so within a week of hanging at the pool all day each day.
Only after contracting lyme in 1995 did I stop tanning and then it was gradual. I certainly never connected it to lyme. Just thought my aging skin was acting differently. I never did use suntan lotion and I can't explain why. Too much hassle when I don't burn anyway and get so little tan, I didn't want to block it. I didn't really care. Suntans were out of vogue, but I ride horses and practically live outdoors year round.
Now, that I am way more into natural and trying to avoid chemicals, I am glad I did not lather suntan lotion on. I follow the advice, don't put on your skin anything you would not put in your mouth because it still ends up in your body.
However, if I had known long ago about Vit D and would have supplemented it (after testing to be sure I was low) I almost certainly would have avoided the auto-immune disorder...Rheum. Arthritis. That is what research is saying and I am passing it on to anyone who will listen.
The good news is I still achieve great benefit even now and my rheum. pain is fading into history. If I can keep it there by way of nutritioning my body than HOORAY!!!!!!! My first cousin died from her rheum. arthritis and when she died, she had no cartilage left in her body. She looked like a horribly deformed little elf and I can only imagine the horrific pain she suffered for years before death relieved her of this horrible disease.
So, Paula, I absolutely believe if you get enough Vit D in you, you will stop burning so easily and will start to tan just a little. I'm sure you will never achieve that San Tropez tan though. hee-hee! If you do, send us pics.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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posted
L. or S., There is a calcitonin product marketed by a couple of pharmaceutical manufacturers, Miacalcin is the name of one of them. Its only indication is "post-menopausal osteoporosis" so you might have trouble getting a doc to prescribe it unless you are in that category, or, if you can get them to test your calcitonin level and demonstrate a lower than expected value, which can be done.
The nice thing is, it is a nasal spray. The first thing you should do though is try to raise your 25 hydroxy vitamin D level and retest your thyroid #s, if they start to demonstrate that the thyroid replacement combo you are on(T4 & T3) is overcorrecting you (too low a TSH), you may be able to reduce your replacemet hormone dosages. Also, thyroid failure may be a sign of low iodine, an often overlooked micro-nutrient.
[ 04. November 2008, 08:04 PM: Message edited by: DoctorLuddite ]
Posts: 442 | From Biddeford, ME | Registered: Nov 2007
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posted
Vit. D is a hormone, not a steriod. In my research, Vit. D is essential for overall health, not just Lyme.
Posts: 215 | From Phoenix, AZ | Registered: Jul 2008
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
So Dr. L are you saying suboptimal D levels can affect proper thyroid function as well? In my case, my hypo is somewhat genetic (runs on my mother's side). I have a low-level of thyroid antibodies.
It's interesting about the Calcitonin test. It never occurred to me to test this.
Also does D play a role in the HPA axis at all?
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
Proper vitamin D metabolism is essential for alot of things, and its hormone form acts as a promoter of gene transcription, it enables a cell in just about any tissue in the body to produce whatever product it is supposed to produce, so the answer is yes, it can help the thyroid to produce T4 as long as the essential ingredients, iodine and tyrosine are available to it, and other cofactors, like selenium are also present. This is also true for the adrenals, the cortex of which take cholesterol and convert it into cortisol. It also helps the pancreas make insulin.
Posts: 442 | From Biddeford, ME | Registered: Nov 2007
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