RE: Re: Check out Vitamin D may exacerbate autoimmune disease

[Guest guest]

Whew, thanks BJ for clarifying that!

To: Thyroiditis Sent: Wed, May 26, 2010 4:14:09 PMSubject: Re: Check out Vitamin D may exacerbate autoimmune disease

Hi Liz,I am with you! There is a few points that should be clarified in this article. I am NO expert in biology but all the reading and research I have done has lead me to acquire a few insights. In otherwords, don't take this article at face value -- but check out everything you read!First, Marshall appears to be an intelligent, somewhat charismatic person who has sold some interesting ideas to chronic disease sufferers. There are a few interesting ideas presented there, and in fairness I suspect he may even be onto a few things with respect to sarcoidosis and maybe one or two other conditions that actually are exacerbated by high levels of D/calcium.However, Dr. Trevor Marshall has two degrees, both are in electrical engineering. Marshall's "study" is NO study but simply an opinion in BioEssays.Among other Marshall mistaken theories, that I won't go into, have been disproved the VDR - Vitamin D nuclear receptor

inactivation isn't accurate either. http://jme.endocrinology-journals.org/cgi/content/abstract/39/2/81High calcidiol levels won't significantly interfere with VDR binding of calcitriol--and thus Marshall's "in silico" -supported hypothesis that exogenous Vitamin D supplementation interferes with VDR activation turns out to be erroneous.HTH,~Bj>> And the confusion continues L. I have read about the Marshall protocol and> decided I would rather die than avoid sunshine. I read that one needs to> basically live in a cave environment. I already get super depressed when> it's foggy or cloudy for more than a day. > > Liz> > > > From: Thyroiditis [mailto:Thyroiditis ] On> Behalf Of phancyforu@...> Sent: Wednesday, May 26, 2010 2:52 AM> To: Thyroiditis > Subject: Check out Vitamin D may exacerbate autoimmune disease> > > > > > Vitamin <http://www.eurekalert.org/pub_releases/2009-04/arf-vdm040809.php>> D may exacerbate autoimmune disease>

[Guest guest]

Hii was wondering i was told that calcium can cause kidney stones. I am wondering i was told that now that my thyroid is gone i do not have to worry about hashi anymore, i am wondering if that is true. Because i just figured most people on here have had part or tt done. So if anyone can give me an insight on this i would be happy. I am taking Raticotrol instead. thanks LoriTo: Thyroiditis Sent: Wed, May 26, 2010 7:51:34 PMSubject: Re: Check out Vitamin D may exacerbate autoimmune disease

Hi Liz,

I spent many hours/days reading everything about the MP couple years ago, then last year read the research of Amy Proal on Bacteriality.com. I do think there are many questions about the MP and I'm not sure what to think of it, but I do think we need to keep an open mind.

Due to my own and other's bad experiences with Vit. D, and coming across some other research, I have come to believe that this whole Vit. D craze is just that--a craze. We will find in 10 years that many people will have heart and kidney problems due to excess D. Initially I jumped on that bandwagon, until my own repeated experience and that of others convinced me there was something missing from all the gushing praise and research on Vit. D.

There was a woman on another thyroid forum who posted on many thyroid forums requesting people to post any negative experiences they were having with Vit D and if it affected their thyroid. And there were always several who said that Vit D made them feel poorly. Some said it made them hyper and some hypo. Some did lab tests several times which showed their thyroid levels were definitely affected.

I've been doing my own informal survey and questioning and have found there seems to be a subset of us for whom Vit D is very toxic, even in small amounts. I haven't yet pinpointed any commonality that predisposes us to this. My levels were 24, but every time I attempt to take 1-2,000/day, after several days I would get horrific pains throughout my body and the chest pains were the worst. One day I almost went to the ER. I also was developing a small kidney stone and I had never had one before. Being an ER nurse, I know the symptoms. Not believing it could be the D, I tried it two separate times after that, and after the third, it confirmed I cannot take it.

It just so happened that a friend was also taking extra D, along with her husband, as they had both tested low. They were taking 2,000/day. When I related to her what had happened and all my symptoms, she was shocked, as she had had the exact same symptoms! And we both had fatigue. She and I both have Hashi's. But her husband also had symptoms , but he had been tested and had no thyroid problems or antibodies. Unless he has some other undiagnosed autoimmune condition.

I've read studies and articles that say that a low Vit D level does not always mean it should be supplemented, that there are various reasons why the body keeps the Vit D low and there is much speculation as to why it happens. Recent studies of people who are outdoors in the sun for many hours/day (surfer types) have found their Vit D levels to be what the Vit D proponents would consider too low.

A few of us attempted to write to Hollick and Cannell, 2 of the leading Vit D promoters to tell them there is a subset of us who clearly cannot tolerate D3 even in the lower amounts. They blow us off. From reading their writings, and considering their complete dismissal of anything that might cast vit D in a negative light, I can only conclude they are not approaching this from a true scientific perspective. They are getting much mileage and publicity from being in the forefront of this Vit D bandwagon.

They also are not taking into consideration the vital importance of having the fat soluble vitamins balanced. (A,D, E, and K) Masterjohn has done some excellent research that is just finally being confirmed by top schools. Giving large amounts of one of these will cause the others to become toxic.

This was proven to me by my last bad experience with Vit D. When I felt so bad that I was ready to go to the ER, I remembered that research and immediately took hefty doses of A, E, and K (I could stock a store with all my supplements I have on hand). I am not even exaggerating, within 45 minutes ALL my symptoms suddenly disappeared. I had forgotten I did this the second time I felt toxic on the D, but it helped then, also.

So be very careful about ingesting extra D. There are no long term studies on people taking those amounts so everyone taking it is essentially being a guinea pig.

>

> And the confusion continues L. I have read about the Marshall protocol and

> decided I would rather die than avoid sunshine. I read that one needs to

> basically live in a cave environment. I already get super depressed when

> it's foggy or cloudy for more than a day.

>

> Liz

>

>

>

> From: Thyroiditis [mailto:Thyroiditis ] On

> Behalf Of phancyforu@...

> Sent: Wednesday, May 26, 2010 2:52 AM

> To: Thyroiditis

> Subject: Check out Vitamin D may exacerbate autoimmune disease

>

>

>

>

>

> Vitamin <http://www.eurekalert.org/pub_releases/2009-04/arf-vdm040809.php>

> D may exacerbate autoimmune disease

>

[Guest guest]

Thank you Becky and for all that imput, I do not understand all the abbreviations you used. But maybe the next time i ever see my endo i will have to ask him. I had blood done 3 wks ago for my calcium and have not heard anything back hoping that is a good sign. But i was suppose to be taking 3,000mg calcium a day and ritocrotrol which is to help absorb the calcium and it was making my stomach ill. So i cut back and feel fine. So i better find out i guess. Well is their anything i should ask them to be testing me for. I was just told no need to worry about Hashi as the problem it now gone. So i am wondering if i have a 9 year old son should i be getting him tested or at least an ultrasound done on him to see.LoriTo: Thyroiditis Sent: Thu, May 27, 2010 8:31:23 PMSubject: Re: Check out Vitamin D may exacerbate autoimmune disease

Hi,

Lori, what is Raticotrol? And why do you take it?

The antibodies that cause TED --thyroid eye disease-- come from TSHRabs (TSH Receptor Antibodies) that are common in Graves' disease. People with Hashis can also have these TSHR antibodies (TSI and TBII); the assertion is that some Hashis have these antibodies. They may have had Graves' or Hashitoxicosis sometime in their life, which likely goes undetected, and that is how and when TSHRabs formed in these Hashi patients. A few researchers say all Hashis have these antibodies along with TPO and/or TGab.

However, I don't believe all Hashis have TSHRabs because my kids and I were tested for both TSI and TBII – only my Hashi-Graves' daughter had any. The rest of us the results were <1 or undetectable for both TSI and TBII, this is what healthy people have and we all have Hashis.

From removal of the thyroid or having it killed by RAI, continued antibody production depends on the persistence of the autoimmune system in your body. I read not long ago that on average TPOab (thyroid peroxidase) can take up to 7 years to disappear after a total thyroidectomy or RAI while TGab (thyroid globulin) usually goes away within 3.5 years. How it was explained to me -- even with the thyroid gone the autoimmune system continues to go in full force; it isn't in tune to the knowledge that the thyroid is gone, so it keeps producing antibodies and eventually realizes via feedback there is nothing left to battle and tells the troops to end the antibody attack. This can take years. The people with TT that I know the earliest the TPOab disappeared was in five years, but she continues to have inflammation problems after eight years post TT.

TSHRabs are tricky because these antibodies come in three forms and attach to TSH receptors and can destroy surrounding issue: TSH receptors are found throughout the body. Personally, I'd be more concerned about the TSHRabs as they can and DO go on to damage other issue such as the eyes. TSHRabs can even demise fetal issue, they can go anywhere in the body. But, TPOab/TGab doesn't - they just let inflammation continue for awhile but do NO further damage because their target - the thyroid - is gone.

To complicate this newer research says TPOab and TGab don't actually destroy thyroid cells; they are there to clean-up the damaged or destroyed cells after the Killer-T cells have already damaged and demised thyroid issue.

It is important that you take suppression dosage of thyroid hormone to keep your TSH around .3, especially if you had cancer. A higher amount of thyroid hormone keeps your pituitary hormone, TSH, from communicating with the thyroid. Suppression dosing also keeps any thyroid tissue from growing back; tissue that may have been left undetected during surgery or NOT destroyed after RAI. Whether or not you had cancer, any new tissue has the potential to form cancer cells.

I hope this helps,

~Bj

> >

> > Hi

> > i was wondering i was told that calcium can cause kidney stones. I am wondering i was told that now that my thyroid is gone i do not have to worry about hashi anymore, i am wondering if that is true. Because i just figured most people on here have had part or tt done. So if anyone can give me an insight on this i would be happy. I am taking Raticotrol instead.

> > thanks Lori

> >

> >

> >

> >

>

[Guest guest]

Hi there ~

I just wanted to give my experience with Vit D. I was taking 10,000 daily per my ND. My levels went from 29 to only 37 after 8 months. My husband only got up to 50 (celiac/hashi/af). Interestingly, I was using the gel pill form and my husband was taking sublingual drops. I'm glad it's Summer because I'll be out in the sun! My husband won't be though, he doesn't like the sun. My ND didn't understand why our numbers didn't go higher.

Robyn

To: Thyroiditis Sent: Thu, May 27, 2010 7:55:24 PMSubject: Re: Check out Vitamin D may exacerbate autoimmune disease

Hi BJ,Somehow, I knew you would be jumping in here to refute this ;-)Sorry, but I'm not ready to dismiss it out of hand yet. There are many unexplained issues with Vit D regardless of whether of not those who question the MP are banned, there is some compelling research, not jut by TM.There is no explanation as to why surfers and those getting more than adequate sunshine seem to have much lower than optimal levels of Vit D and the researchers are speculating as to the reason. Is it the body's protective mechanisms? As for evolving, we did not evolve taking large doses of Vit D supplements, only that naturally occurring in foods. The body was designed to get the majority of Vit D from sunshine on the skin, not large amounts orally through supplements.The fact remains that there definitely are those of us for whom Vit D is very toxic despite having low levels. I too have been studying this for several years, including

Krispin Sullivan's site, and I find much of the research of Amy Proal et al compelling. I have learned over the years that many of the great scientific discoveries where often shunned and ridiculed initially, then ultimately embraced. And I've also noticed that those who made these discoveries, while correct in that particular thing, often were incorrect in their other areas of their scientific theories or conclusions. I've not yet found one of them who had all the correct answers in everything they did. But I would be foolish to not recognize those things in which they were correct, or had great probability of being correct.There are a few things that TM has said that I disagree with, but even then, I am open to the possibility that there may be other answers/reasons for things than those that are now held to be absolute truths. I can see you feel very passionate about your opinion of him. I agree he does not always have the

best bedside manner, but neither do some of the best docs I've had. While I do not agree that people should be banned if they disagree, I also do not agree that some of the things you dislike about him and SOME of his beliefs warrant making absolute judgments that his and Amy's research is not worthy of consideration.And yes, I've tried low doses and different brands. I've been studying nutrition since my mid 20's (I'm now 57), am an RN, and have had a holistic practice. I've been to many classes and seminars and I feel pretty confident in my abilities to be discerning about research and theories. Which is why I have been reading and re-reading the MP info and that of Amy Proal, but also the writings of those who disagree. I have been scouring the internet for studies and info regarding Vit D, and it's pretty clear to me that there are many experts and researchers out there who are warning that we do not have enough info to say that a certain

level of Vit D is either too low or too high and that only measuring 25 OH D may not be the complete picture. They are very concerned about the lack of long term studies of using those doses of Vit D, even 1,000 IU/day.Not everyone has problems with Vit D, and I have been reading his site and forums for awhile now and have not seen that said anywhere. And the real basis of the Vit D problem is not the Vit D per se, but the fact that there is a dysregulation in the Vit D receptor caused by Cell Wall Deficient Bacteria. Once the patient goes through the long-term antibiotic protocol and those bacteria are killed off, then the person no longer has to avoid Vit D in foods as they do not cause problems.Many people have gotten their lives back by using the MP, and some were not successful. But there is nothing that works for everyone, as we all know.Bottom line for me--my research and knowledge has led me to conclude that there are

some serious, unanswered questions about the safety of Vit D, which is a secosteroid. I also know this from experience, because I and many others get toxic from low doses even with low labs. Dr. Cannell has no answers for those of us who write to him, and is only interested in singing the praises of Vit D. The Vit D Council is clearly not unbiased, IMO, or they would be investigating the real downside of Vit D, and searching out people like me to study. That is just not good science by anyone's definition.TM and Amy Proal ARE doing far more research on the potential negative effects of Vit D, something we won't get from Cannell and Hollick. So that's my opinion, and I'm sticking to it ;-)>> Hi

,> > I am all for keeping an open mind on the MP. But, frankly TM closed that door. I have read and even joined TM's blog. If you question anything, you are banned. More people have been banned than succeed. TM appears to only want positive results and the hell with the rest. I was shocked! Anyway, I cannot find any studies for the MP just TMs opinions. > > Anyone who believes vitamin D deficiency is not the cause of rickets is simply wrong. Marshall also believes vitamin D is toxic, despite the fact that we evolved with high levels of it. Of course, vit-D has the potential to be toxic at high amounts like everything else. IMHO, TM simply misinterprets the scientific literature to support his unproven claims. Most of the world's population falls under the MP guidelines for vit-D, so is everyone in the world experiencing chronic inflammation?? Unbelievably irresponsible!> > Telling people to avoid going on

all forms of steroids, even when they have respiratory problems! And the Benicar doses he recommends are Scary! And, according to TM symptoms are either caused by the bacteria running rampant (you are NOT following his protocol) or a reaction to the protocol that shows it's working! SORRY! Trevor Marshall can't have it both ways! > > Furthermore, I think it is INVALID to claim that feeling good on the MP proves that reducing vitamin D helps. This is because many of the effects of a vitamin D deficiency can be offset by other measures such as supplementing with calcium or the reduced infection fighting ability of vitamin D, can be offset by the antibiotics that are used by the MP. Although some people are doing well on the MP, that doesn't necessarily mean that the decrease in vitamin D is necessary. And since everybody on the MP reduces their vitamin D level, there is NO way of knowing whether this aspect of the treatment plan is necessary

for every condition. Again, unbelievably irresponsible!> > > > As you may well know, I have been following Krispin Sullivan's research for years. She does NOT advocate high vit-D doses like Drs. Hollick and Cannell. And like my doc, Krispin says to test Ca, Mg, Zinc, Cop, Phos etc and pay attention to the Ca/Phos ratio. He says high Phos can cause a truckload of problems. What is your Ca/P ratio? > > Not everyone can tolerate high doses of vit-D. I read about a Rheumalogist that could NOT take high doses of Vit-D or he would get joint aches, so he took a much lower dose and did fine. I don't believe anyone should be taking over 1,000 IUs of Vit-D daily without a doctor's ok. Maybe I would react badly, too, since I have NOT taken high doses. Have you tried small doses? Or different brands?> > I'd greatly reduce the amount of vit-d, look for an allergen in the supplement and try different brands.

Also, look at the other complimenting vit/min and balance them all. > > I had extremely low DHEA (2), and every time I tried to supplement I reacted badly. Finally after trying several brands I did fine but we also had to fix my low cortisol and we then reduce the starting dosage to .5 mg. I also, found a subset of women with Hashis that had bad reactions when taking DHEA. We all had to fix certain problems before our bodies could handle DHEA supplementing. > > I am sure, like you, that the vit-D craze is just that. We need to be caution and pay attention to all the vit/min that work together and take them all in moderation.> > Best,> ~Bj> > > >

[Guest guest]

I just got

by Vit D tested and it has gone down from 46 to 38 while on Vit D. I use an emulsified

liquid. I do think though, that this liquid has helped lower my blood suger.

Liz

From:

Thyroiditis [mailto:Thyroiditis ] On Behalf

Of Robyn and Bill Durham

Sent: Friday, May 28, 2010 7:07 AM

To: Thyroiditis

Subject: Re: Re: Check out Vitamin D may exacerbate

autoimmune disease

Hi there ~

I just wanted to give my experience with Vit D. I was

taking 10,000 daily per my ND. My levels went from 29 to only 37 after 8

months. My husband only got up to 50 (celiac/hashi/af).

Interestingly, I was using the gel pill form and my husband was taking

sublingual drops. I'm glad it's Summer because I'll be out in the

sun! My husband won't be though, he doesn't like the sun. My ND

didn't understand why our numbers didn't go higher.

Robyn

[Guest guest]

BJ,

Oh my goodness...I have every one of those symptoms you described...including the bright headlight issue...unbelievable! I have not been good about taking my vitamins including the extra magnesium the doctor prescribed me...but I am going to get back on with it and take it every day!

Thanks so much for posting this!

To: Thyroiditis From: beckyjov@...Date: Tue, 15 Jun 2010 21:05:36 +0000Subject: Re: Check out Vitamin D may exacerbate autoimmune disease

Hi Carol,Could the bad reaction to the brand of Vit C/D you used that caused joints crackling and pain be from lack of magnesium? Why do you think magnesium caused your muscle sourness? Those symptoms are commonly seem from alack of magnesium not too much. What are your lab results for Mg, Ca, Vit-D, etc? I just read last week on a gov health site that 80% of Americans have some level of magnesium deficiency; plus blood tests aren't always accurate because the body will pull magnesium from the bones to keep an ample amount in the blood. Just drinking coffee can deplete magnesium; plus there is a long list of other things too, like sugar and white flour. And we know a lack of Mg causes heart palps; numbness and/or tingling; muscle twitches, cramps, aches etc; urinary spasms; menstrual cramps; PMS; difficulty swallowing or a lump in the throat; excessive sensitivity to light especially difficulty adjusting to oncoming bright headlights in the absence of eye disease; and loud noise sensitivity from muscle tension in the ear etc; insomnia, anxiety, panic attacks; mood changes; And so on...I think we all agree that magnesium is a very important and vital mineral for the body and is responsible for over 300 functions in the body. Some of which are the creation of new cells, the proper functioning of your heart and kidneys, production of energy, proper digestion, the relaxation of muscles and the function of muscle. Magnesium also activates B vitamins, the adrenals, the brain and the nervous system etc.It is always wise to test before you supplement with any mineral or vitamin (or anything). Satisfactory amounts of magnesium, calcium, phosphate, vitamin D, zinc etc are needed for strong bones. The tricky part is that calcium can build-up in the body unnoticed, so if too much accumulates in the body it will cause a deficiency in magnesium, but the same is not true for magnesium because any excess magnesium is excreted from the body via the kidneys.Another thing worth mentioning is in a deficiency of magnesium, to any extent, will interfere with any of the numerous functions that this mineral is responsible for. The solution is to take it in a form where it is completely dissolved in water. In this ionic form magnesium absorbs into the body fast, producing almost instant relief without the absorption, tummy and bowel problems found in the pill form.Hope this helps,~Bj> >> > interesting article. I know there is allow of Research being done at UCSD on Vit. D. I am not a pro or con Vit D. but I do feel you need some amount to be healthy and as we don't get the sun we use to supplementation makes sence.> > > > If you go to UCSD TV you can watch presentations at the university touting the anti cancer effects of Vit D. The say to raise your level every 7-10 units you need to take an additional 1000iu. > > > > It is interesting to note that some have an immediate negative reaction to it. Have any of the researchers been able to explain this?> > > > I am willing to bet the truth is somewhere in the middle. Remember the Aristitalian mean.> > > > I was measured with a level of 30. I was taking a token about in a multi. I started to take 4000iu/day and found a big improvement in the frequency of colds and flu symptoms. As summer is coming i will ratchet the supplements down and then up again in the Fall.> >>

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[Guest guest]

Oh...I take a pill form, so should I switch to liquid? Oh my gosh, my BP runs about 80 over 60...wonder if that's from low mg too?

To: Thyroiditis From: beckyjov@...Date: Fri, 18 Jun 2010 01:14:40 +0000Subject: Re: Check out Vitamin D may exacerbate autoimmune disease

Hi ,What form of Magnesium is in the prescription? Magesium needs to be in an ironic form to absorb properly in the body. Sadly there is not much in the soil and food supply. We only absorb 50% of the magenisum we eat in food and about 20% we take in pill form. Bad gut and bowel symptoms are from unabsorbed magnesium. I take liquid magesium in addition to what I get in my multi. Source Natural's Mag Active, which is in the liquid form is working very well for me. I don't crave chocolate any more. Plus, my low BP has also improved. HTH,~Bj > > >> > > interesting article. I know there is allow of Research being done at UCSD on Vit. D. I am not a pro or con Vit D. but I do feel you need some amount to be healthy and as we don't get the sun we use to supplementation makes sence.> > > > > > If you go to UCSD TV you can watch presentations at the university touting the anti cancer effects of Vit D. The say to raise your level every 7-10 units you need to take an additional 1000iu. > > > > > > It is interesting to note that some have an immediate negative reaction to it. Have any of the researchers been able to explain this?> > > > > > I am willing to bet the truth is somewhere in the middle. Remember the Aristitalian mean.> > > > > > I was measured with a level of 30. I was taking a token about in a multi. I started to take 4000iu/day and found a big improvement in the frequency of colds and flu symptoms. As summer is coming i will ratchet the supplements down and then up again in the Fall.> > >> >> > > > > > __________________________________________________________> Hotmail is redefining busy with tools for the New Busy. Get more from your inbox.> http://www.windowslive.com/campaign/thenewbusy?ocid=PID28326::T:WLMTAGL:ON:WL:en-US:WM_HMP:042010_2>

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[Guest guest]

Wow...so just get the liquid kind from a health food store or vitamin store? I am going to give it a try!!!Thanks!To: Thyroiditis From: beckyjov@...Date: Sat, 19 Jun 2010 00:37:53 +0000Subject: Re: Check out Vitamin D may exacerbate autoimmune disease

Hi ,

I used the pills for years and never noticed an improvement, but sure do using the liquid form of Mg. The one I take also has other trace minerals, which are beneficial as well. I came across the Mg research by mistake but so glad I did. Some of the researchers were very enthusiastic about how Mg could lower high BP and high cholesterol, so I was really surprised when my low BP/cholesterol numbers increased to also normal. Let me know how it goes for you.

HTH,

~Bj

> > > >

> > > > interesting article. I know there is allow of Research being done at UCSD on Vit. D. I am not a pro or con Vit D. but I do feel you need some amount to be healthy and as we don't get the sun we use to supplementation makes sence.

> > > >

> > > > If you go to UCSD TV you can watch presentations at the university touting the anti cancer effects of Vit D. The say to raise your level every 7-10 units you need to take an additional 1000iu.

> > > >

> > > > It is interesting to note that some have an immediate negative reaction to it. Have any of the researchers been able to explain this?

> > > >

> > > > I am willing to bet the truth is somewhere in the middle. Remember the Aristitalian mean.

> > > >

> > > > I was measured with a level of 30. I was taking a token about in a multi. I started to take 4000iu/day and found a big improvement in the frequency of colds and flu symptoms. As summer is coming i will ratchet the supplements down and then up again in the Fall.

> > > >

> > >

> >

> >

> >

> >

> >

> > __________________________________________________________

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