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Vitamin D=Sunlight?

sweetiecat
1 Recommendation

I have a question and I'm hoping you all can help me with it. When I saw the neurologist at Cincinnati Children's he wanted me to take mega doses of Vitamin D. Like 50,000 units a day for 30 days. He said there is a theory that Vitamin D may help supress tumor growth. Now here comes my question: I have read on here where some of the people said the sunlight caused bumps and lumps. Now, we know the sunight has Vitamin D. So, do you think this theory is a contradiction? I'm confused. Or is the heat that causes the bumps and lumps? Thanks for your help!

Explore topics in this discussion:

Osteopenia Hysterectomy Brain tumors

18 replies

CindyLouWho

I'm not sure that most people say that sun causes their tumors only that the sun seems to make them more visible. A few people have said that they seem to have more tumors in areas where they had a previous sunburn but people seem to get tumors where they get sunlight (for example on the face) and where they are likely to get less sunlight (the chest or trunk for example). I don't think we can draw too many conclusions from that.

Yes, you can get vitamin D from sunlight. The sun also contains UV rays and is damaging to the skin. In small measured doses some sun is good for you and may offer a protection against skin cancer...too much and the opposite is true.

That dose of vitamin D is exceptionally high, I assume you were tested and were found to be severely vitamin D deficient? Even then most severely deficient people wouldn't be taking that amount every day over 30 days. Its a lot.

Cindy

flnut38

Hi sweet, we all know we need vit d as we get older I don't think it would hurt, I don't agree with the sun thing, I just get worse. but I would just take the calcium with vit. d I do think that is way to much too.

sweetiecat

Thank you for your responses. I haven't filled it because my insurance won't cover it. After talking to you, I don't think I will. My NF is very mild right now and my doc didn't do any lab work before prescribing it to me. The pharmacist told me the same thing about it being high dose of vitamin D. You all are great!

dreamer98

sweetiecat,

50,000 IU of vitamin D daily seems like a large dose to me. I have a vitamin D deficiency and when my levels were at their lowest I was only on 50,000 IU once a week. Now I am on 2,000 IU daily. If I were you I would ask your doc about taking 1,000, 400, or 200 IU daily of vitamin D3 softgels. It is found over the counter and cost about $6 or $8 for 100 pills. Too much vitamin D can be dangerous over a long period of time. Thats why I have to get my levels checked every few months.

sweetiecat

Thank you for the information. I will ask him tomorrow when I call to tell him my body couldn't tolerate Tegratol.

green

Sweetiecat,
I just went to the doctor yesterday and he put be on 2,000 IU. It seems like 50,000 is way to high. I would check with your doctor.

KittyLover

sweetiecat - that's interesting that your doctor mentioned Vitamin D. I'm going to ask my doctor about that. maybe my insurance will cover it.

As for the Sun and bumps. I do know that when I'm out in the sun, my bumps stick out more. Actually, it's more the heat than the sun.

A couple years ago, I did some massive landscaping in our front yard. I was working on an area where I was sitting with my legs to the side - one side alot more than the other. Well, lo and behold, I developed bumps on my legs on the side that received the most exposure to the Sun. Not only that, but I developed quite alot of bumps on my legs, period. I put on massive amounts of sun block (60 spf). And when I was a teenager, my mom took me and my NF sister to Florida. I basked out in the Sun majorly and came back looking like an Oompa Lumpa! :P Anyways, my first day there, I developed a funny looking bump on the left side of my nose, right near the nostril. A big bump that looked like extra cartilidge and didn't really look like a 'bump', unless you knew me before it popped up. People say that the Sun doesn't cause bump growth - i beg to differ. It might just be that only certain NF'ers are affected, i dunno. My NF sister - she has a milder case than I do... sits out in the sun and/or tanning beds. I don't know how affected she is, though.

I don't see a tie-in between Vitamin D and the Sun, though. I think it's something else. When I was a little girl, i never developed bumps from being out in the sun... even after the bump that popped up on my nose, it didn't appear to be a major issue. Maybe my body changed as I got older and made me less tolerant of the Sun. As it is... I hate the Sun with a passion, and not for the fact that it causes bumps on me. I hate it. It makes me crabby. I love overcast days - they give me energy and put me in a good mood. But that's a whole nuther ball of wax that should be covered in a different thread.

MysticMIkel

Sweetiecat:

As many have already said, that dose seems to be a huge amount.

My doctor recommended to me that I take a 1000 IU of Vitamin D.

Mike

sweetiecat

That is what everyone is saying. I'll look into that. I know he thinks I am high risk for oesteoparosis since I had a hysterectomy in my 20's.

CindyLouWho

Having NF puts you at risk for having oesteoporosis.

sweetiecat

I did not know that! Thanks for telling me. Why don't the doctors tell us these things. I would have started taking supplements a long time ago. Do you know why we are prone to osteoporsis?

dreamer98

Yes, we do have a greater chance of ostoperosis. I'm in my mid 20's and already have osteopenia. May be in part of my vitamin d deficincy, which also affects those who have NF.

sweetiecat

Thank you, Cindy. I will be sure and read of this information tomorrow. My doctor said I am high risk for esteopenia also. I am going start taking Vitamin D but not 50,000 units a day. I have to go to either Kroger or Walmart to check out the price. I live in a very small village of only 3,000 people and our pharmacy is very expensive for anything that is not covered by insurance.

Stonehamgirl

My primary care doctor told me that a lot of people have a Vitamin D deficiency (even people without NF) at last year's annual check up. She ordered the blood work, and low and behold, I had a deficiency - somewhere in the mid teens. She prescribed 8,000 IU daily for one month, and then 800 IU daily after that. The 800 IU is available over the counter. My prescription was covered by insurance. 50,000 seems very high. My neurologist also has recommended a bone density test be done.

anthony204

I was just put on 1000IU a day I was surprised that my Vitamin D was low but it makes sense because it is me Like Murphy’s law what can go wrong will, But in way it is not that bad I have a real mine case of NF1 but as I get older more issues seem to pop up.
At lest I found a good NF Dr. she was e-mailing information back and forth last night after office hours 7-8 pm at night what Dr does that then she called me this morning at 8 am

MIRACLESOCCUR

SARAHS DR.
IN CLEVELAND PUT HER ON 2000 I.U.'S A DAY AND SHE IS ONLY 9. THE THEORY AND CLINICAL TRIALS ON D3 ARE TO CONFIRM THAT D3 CAN HELP SUPPRESS TUMOR GROWTH. BEING THAT SARAH HAS BRAIN TUMORS, THIS SOUNDS VERY SENSIBLE TO ME. 50,000 IS NOT TO MUCH FOR ONE MONTH. OVER A PERIOD OF 6 OR 7 MONTHS, YES. I WOULD DO IT.....JUST ABOUT TWO WEEKS IN TO IT HAVE YOUR VITAMIN D LEVELS CHECKED. IF WAY TO HIGH CONTACT YOUR DR.

sweetiecat

Thanks! If I have the money next month I will do it. It might have to wait until January.

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