I know this is the vitamin B1 fan club site, but worth bearing in mind other vitamins. Following my diagnosis in March 2018 my doctor ordered a comprehensive blood test, which showed a vitamin D level of 20.8ng/ml. French guidance considers below 10 to be an acute problem, and between 30-60 is recommended. My doctor phoned me (on my mobile, while driving back to the UK) and recommended supplementation
I live in the South of France, and spend a lot of time outside with a T shirt and shorts. OK - in March, coming out of winter, my skin had seen a bit less sunshine. I tested again this week, in June, having not only walked around a lot in shorts and T shirt, but spent a lot of time on a sunbed in the sun. I have been supplementing 5000iu a day - significantly more than the RDA, and expected to be dangerously near the top of the range. In fact my vitamin D levels are 28.5ng/ml. Better, but plenty of room for improvement. And I have a healthy diet
My Dad has been in hospital following a bowel resection which went badly, and he has PD too. I insisted the hospital check his vitamin D levels which were "unacceptably low" and they started him supplementing 2000iu a day. There are many other things involved, but his health is greatly improved
Vitamin D deficiency is a known problem in PD. It can cause a number of problems other than traditional bone weakness, and is a key factor in neuronal health ncbi.nlm.nih.gov/pmc/articl...
Worth getting it checked and aiming to get it in range. I am going to increase my supplementation
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WinnieThePoo
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I also was diagnosed with low D and was started on 5000 iu per day 2 years ago prior to my PD diagnosis. I continue to take it though I'm not sure where my level is today. I know it improved significantly after the first year. I also take B1. Makes you wonder what else we are missing.
Have you checked your bone profile including Parathyroid Hormone? I had a high level of PTH and after supplementation with D3/K2 the PTH turned to normal.
I was quite deficient in Vitamin D and after a couple of years supplementation , my D3 level(25-hydroxyvitamin D) now is 234 nmol/L. I take D3 with K2. In my opinion, the optimal level of D3 for PwPD is much higher than a healthy individual with no PD.
High levels of D can cause organs calcification. I took high dose for 6 weeks and I felt good but I noticed some bumps in my palms. I stopped it and in 4 months they were gone.
You're right. It is possible to overdose and being fat soluble, just stopping supplements won't immediately lower vitamin D levels. So it's important to test. My levels ARE low, as of a blood test 7.30 Friday morning. And I have no bumps in my palms.
Excellent reminder, WtP. Ironically, in sunny South Africa, many people suffer from Vit D deficiency because, on the one hand, of the prevalence of skin cancer from overexposure to strong sunlight and the related use of sunscreen. On the other hand, long hours working indoors excludes beneficial exposure to sunlight.
Have you had your calcium and parathyroid levels checked?
I take 5000 IU Vit D3 daily. I also am outside in the sun quite a bit, walking, gardening, etc. I have my D3 levels checked annually and have for past 5 years or so. Easy blood test. My levels started low, now despite all the supplementation are only in the mid acceptable range. I’ve read not only PwP, but most people have low D levels as they age.
hi pdga14 have you tried the thiamine b1 it might be a good idea if you do I rarely feel as if I did not have it pd that is since I have had pd about 6 or 7 years ago im wondering what the connection is..so about 6 months ago I got a lot of pain on my right side back and legs
it turned out I got another problem sciatic pain but the starnge thing is most days I don't pd today I took just 1 madopar its nearly 10 pm here im sitting here with very little pain if any im 72 years old had pd for about 6 or 7 years this is very new for me.i can put my 2 arms out in front of me without a shake its a good feeling.the sciatic can be very painful but its fixabile as I have had 1 injectable and ill go for another one as well ..il get back to my pd friends regards john
You are absolutely correct. I live in Florida, as do my husband and parents. We each have a swimming pool. All four of us do gardening work. Yet 3 out of 4 of us tested insufficient, with mine at 12 being dangerously low; my mother was measured at 19, and my husband, 21. Only my father, who plays golf several times a week (and is covered with scars from skin cancer removal) had an optimum level.
In the US the "new" guidelines for seniors are to reach a minimum of 50 and a high of 80.
Our doctors started us on a different courses of Vitamin D. For my husband, it was 5000 units. My mother's doctor put her on 7000 daily. And I was put on a regimen of 10,000 for the first week--in the morning, as at nighttime it might keep you awake--then reduced to 7000 daily.
The shocking part is that despite supplementation, our blood levels were checked at 1 month, 2 month, and 3 month intervals, and none of us had reached the acceptable 50 mark!
Just remember it took many years (?) to get that way and you probably won't fix it quickly either. Anything "dangerously near the top" of recommendations I would be wary of.
I agree. I've read a lot of studies showing there really isn't a "dangerous" amount unless one is devouring a spoonful of 5,000 units daily. I mean, there is the potential, certainly, but so, too, is there a potential for too much salt, iron, caffeine or Brazil nut (selenium) intake.
Have you ever heard of the Coimbra Protocol? Look into it! I take B1 as well. Isn’t strange that almost everyone who has an autoimmune disease as low vitamin D? The further away from the equator, the higher incidence and severity of autoimmune diseases. Vitamin D regulates your immune system by controlling your parathyroid hormone. They are inverses of each other. I guarantee most of you have extremely low vitamin D and very high parathyroid hormone levels. As you supplement your vitamin D, very high levels of vitamin D and lowers your parathyroid hormone parathyroid hormone Is the calmer of your immune System. The problem is with taking high doses of vitamin D is that you have to illuminate most of your Calcium in your diet. Easiest way is to Remove dairy. I take almost 100,000 ICUs vitamin D . You have to do this with special trained doctors. You constantly check your blood every three months to see if your vitamin D rises, your parathyroid hormone lowers and your calcium doesn’t raise to you have to do this with special trade doctors you constantly check your what every three months see if your vitamin D rises parathyroid hormone lowers and your calcium doesn’t raise too hot high. It has worked wonders with Ms and Crohns. It puts your autoimmune disease in remission, or with Parkinson’s stops the progression. I’ve been on it for a few months now undeniable, but very limited results
it takes a long time to work. Just like a title of a long time to get Parkinson’s. I’m 38. When I turned 20 I started getting vitamin D deficiency sores. They would go away in the summer And come back during the winter. That seems like a heck of a coincidence. After about five or six years I never really went away. Parkinson’s is extremely complex. The doctor from Brazil created this protocol was part of the human genome project. Most of you have probably heard of this in the distant past , but basically ignored the results. Anyone who wants to talk to me about this, I’d be happy to call you or you could call me
I recently read PwP need 5000 iu per day. I don’t remember where I read this. I did increase to the 5000 iu from 1000iu. Thank you for posting this information. It’s re affirming.
Speaking of French medicine, it fascinates me to realize that, although its been known for more than 125 years, that Louis Pasteur, perhaps the most well-known French medical researcher of all time, was absolutely wrong in his germ-theory for the cause of disease susandoreydesigns.com/insig...,
this erroneous theory is still the main one that is promoted and taught in the AMA approved, and pharmaceutical-industry-financed medical schools of the United States. This, of course, is due to the fact that his potentially lucrative theory takes all control from the hands of the individual, and places it into the hands of the prescription-writing, vaccine promoting MDs.
So while one Frenchman continues to receive all the fame and gratitude for such a 'wondrous', (although erroneous) discovery, another Frenchman, Prof. C. Louis Kervran, of whom you have most assuredly never heard, may one day become recognized as one of the most valuable contributors to modern health of all time, due to the discoveries he has revealed in his book, Biological Transmutation of the Elements. This information might one day be shown to tie in to the resolution of the Parkinson's problem. jonnsaromatherapy.com/pdf/P...
In fact, at first Dr. Kervran's discoveries were recognized as so significant, that in 1975 he was nominated for the 1975 Nobel Prize in Physiology. However, once his discoveries were reviewed, it was quickly recognized that this knowledge had the potential of returning to the hands of the individual, control of his own health and well being. Thus, in a last minute change, the prize went to someone else. And for all practical purposes, Dr. Kervran and his discoveries have remained virtually unknown to most people. But fortunately, you can now read about them on a number of websites; this one seems to me to be one of the better ones - researchgate.net/publicatio...
Some day, if requested, I would like to share with you the amazing, seemingly ethereal way that I was introduced, 40 years ago, to this concept and its potential value to mankind.
Remember, Vitamin D is fat soluble. This means that you have to have fat with it to properly absorb it. Eat it w/ a meal that has fat like fish or eggs.
You can take a entire bottle of D3 but you won't absorb much unless you gave some fat w/ it.
Taking a fish oil supplement with it will help. I just don't know how much fat is in the fish oil. I don't believe is enough, but will help absorption more then without it.
Fat soluble doesn't mean you have to eat fat with it to absorb it. It is digested in the same way as fats. The important point is that it is stored in fat in our bodies so supplements can initially go into storage and not show in blood analyses and in the event of excess it takes time to get levels down
Also, the link you provided didn't mention that you don't need fat for absorption.
You are correct that Fat is both the storage and is also a transport (lipoprotein - HDL and LDL) of the fat soluble vitamins. Problem appears that, in the presents of insulin, fat in the form of lipoprotein are not being release into the blood, thus we are not getting the vitamins we need from storage.
I found this link to be helpful in explaining lipoprotein.
Thank you. U checked with my doctor and pharmacist and they just said to take with food, but i note the comment on the medical news today article about better with fat. I take mine in the morning with 2 fish oil capsules, a whole milk kefir and a whole milk yoghurt, so I am taking them with fat without realising that was beneficial
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