Vitamin D

[Tz2388]

While receiving a routine blood test, it was brought to my attention my vitamin D level was almost zero, even though my daily vitamin has more than 100% of the daily recommendation and i live in the Arizona sun six month a year. The doc immediately put me on a megadose. Right away I googled PSP and Parkinson's connection. Not sure I understood everything, but my question is, "Is the body of a PSP patient able to absorb or use this new dose?". Anybody have info on this?

[Christine47]

I don't know the answer to your question, but if I were you, I would contact one or two organizations. Grassroots Health (GrassrootsHealth.net) is a study group out of UC San Diego. The other is Vitamin D Council (Vitamindcouncil.org) . If they don't know your answer they may be able to direct you to someone who does. Hope this helps.

Christine47

[easterncedar]

I also have heard of this connection, and my guy is also chronically low in vitamin D, but then so am I. Common in northern climes I am told. I'd be glad of more information if anyone has any insight. Thanks for raising the question. Easterncedar

[Hidden]

Hi Tz2388

Certainly check out the organisations mentioned by Christine47.

There is no real reason why a PSP sufferer should not be able "to absorb or use the new dose" of Vitamin D, unless they have other problems not connected with PSP.

There have been a few studies that show some Parkinson's patients (this may apply to PSP ) have low Vitamin D levels, but they have not show any real cause and effect. The studies have been general in nature and a lot of variables have not been included. For example, such patients are less liable to be in the sun (house bound) and eating habits altered (especially those with swallowing difficulties).

It has been shown that taking mega amounts of Vitamin D does NOT affect the progression of Parkinson's disease. There are some serious studies being done with MS and there seems to be some clinical evidence of the benefit of vitamin D (there are more sufferers found in latitudes where there is less sunlight).

I would be more concerned about other reasons why your vitamin D was almost zero. Here in Australia we have a "sort of epidemic" of people with low Vit D and it is being blamed on our "slip, slap, slop" programme of covering ourselves in creams that block certain UV light from the sun and wearing hats and clothing to prevent sunburn (hence...melanoma and other skin cancers). There are two main types of Vit D with one being from food and the other from food and sunlight.

The reasons for low Vit D are numerous and it might be best to ascertain possible clinical reasons for your low level (and PSP would be not be a serious contender). Certain conditions may affect Vit D levels, like kidney problems and gastrointestinal problems (like Crohn's) diet, old age etc etc. Medications like statins also lower Vitamin D (cholesterol is required to synthesise Vit D).

I'm guessing that many people have low Vit D because of some absorption problem (may be related to a gastrointestinal disease). If this is the case, then a Vitamin D absorption/utilisation test could be requested (along with checks of Calcium levels etc that are affected by low Vit D). Since it is a fat soluble vitamin, any absorption problems may be reflected in the health of the liver/ biliary system.

I'm assuming your doctor will check out your blood level of Vit D after a specific period of time on your new megadose!

I do hope your Vit D levels will return to normal with your supplementation, but it's always advisable to find "the cause". Prevention is always better than cure.

All the best.

T.

[Heady]

Hi, my husband was bought up in the north of England, therefore rarely saw the sun! We now spend a good few months of the year in sunny climes, I can always see the difference in him, after a few days of sun on his back. I always have presumed it was just being relaxed, not working and just being warm etc., but perhaps, the extra Vit D has helped. Even now, being in a sunny and warm climate does improve his movement and general well being.

Lots of love

Heady

[marytea13]

HI Tz2388 its some time ago that my Vitamin D levels were very low so I now take Vit D + Calcium daily. I live in Perth W A another place that is usually sunny but not @present lots of rain which we need. My neurologists have not been able to diagnose my condition closest = extra pyramidal disturbance - not even syndrome. I was taking sinemet but it did not help & only caused me to vomit. I have been to physiotherapy this morning that's all but now have personal care as I have to careful not to fall. Cheers marytea13

[Hidden]

Malt and cod liver oil is a good way to get vitamin D plus others. It comes in the form of a thick syrup. I gave it to Dad every day, even to the end, when possible, as it is easy to swallow, it just melts slowly in the mouth. My father really liked it as his mother used to give it to him as a child, however it is an 'acquired taste' I think it is fair to say and i had great difficulty getting my children to take it but one does get used to it. You can get it in butterscotch flavour and it is quite expensive. In the UK, Boots supply it. As Strelley says, there may be no connection at all between vitamin D uptake and PSP, vitamin D deficiency is a metabolic condition and PSP a neurological one, but what do I know? probably a lot more than some of the idiot doctors we come across perhaps!

[Hidden]

Malt and cod liver oil is a good way to get vitamin D plus others. It comes in the form of a thick syrup. I gave it to Dad every day, even to the end, when possible, as it is easy to swallow, it just melts slowly in the mouth. My father really liked it as his mother used to give it to him as a child, however it is an 'acquired taste' I think it is fair to say and i had great difficulty getting my children to take it but one does get used to it. You can get it in butterscotch flavour and it is quite expensive. In the UK, Boots supply it. As Strelley says, there may be no connection at all between vitamin D uptake and PSP, vitamin D deficiency is a metabolic condition and PSP a neurological one, but what do I know? probably a lot more than some of the idiot doctors we come across perhaps!

[Heady in reply to Hidden]

Nader, you definitely know more than the idiot doctors do about PSP. I think most consultants would be horrified, if they had to look after one of their loved ones and put up with the "....." That they dish out to us,(the doctors I mean!) certainly more effort would be put in to finding a cure or at least some medication that worked. Instead of the "sorry, no cure, no medication, go away and play" attitude that we all have to put up with!

Lots of love

Heady

[Pokey]

My husband has PSP and last year tests also showed his levels of Vitamin D were extremely low. He was immediately put on mega doses of Vitamin D to raise his levels. While we do live In eastern Canada, we have wintered the last 2 years in Arizona. He does feel much better when we are in Arizona but he is also more active there. I have also heard of people with MS with very low levels of Vitamin D. It was his family doctor who discovered the deficiency and we did not see the neurologist until 6 months later and never thought to discuss it but certainly will next appointment in October.