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I have heard a lot about taking Vitamin D to help with the growth of the tumors.
I have a couple of questions about this.
Can anyone with NF1 take Vitamin D?
Does it have to be a specific Vitamin D?
Should I go to a doctor to get a prescription?
I thank you in advance for your time and answers.
Nelly
No prescription is needed for supplemental vitamin D. Vitamin D is available at any health food store, drug store, or department store with a pharmacy section. It will likely be the cheapest vitamin there. Here it is less than $5 for 90 tabs of the best brand. D3 is the one that is considered to have the best health benefits though some research is now suggesting that D2 may still be good for bone health. D3 usually comes in 400ius or 1000 ius. How much you should take is up to you. The role of vitamin D in NF is still unclear in many ways. Are low vitamin levels in the most severly tumored patients a sign that people should take more vitamin D or is there a remote chance that the tumors are feeding off of vitamin D? Perhaps it is an issue with vitamin D metabolism which may mean that taking extra D may have only minimal effect? More study needs to be done though some NF doctors do now seem to be recommending some vitamin D to their patients. Many NFers have been taking the vitamin D and there appears so far to be no ill effects and perhaps a good benefit. Still there is no set amount being suggested across the board for NFers.
NF aside, many doctors here now routinely recommend 1000 ius a day for adults. I'm not sure what the recommended amount is in the U.S. It is something to discuss with your doctor....perhaps amounts should be personally tailored based on how much sun you get, how many months of the year vitamin D is produced by the sun in your area, how dark your skin color is, how much vitamin D rich foods you consume, what your serum D levels are etc...
Topical vitamin D requires a prescription but on its own seems to be of minimal benefit in NF.
Cindy
I appreciate your response Cindy. It has been really helpful
Nelly
Hi There,
I don't know any information that says vitamin d might surpress the growth of neurofibromas. My endocrinologist has never said anything to me about that. I have NF and have been diganosed with a vitamin d deficiency, and I am not covered by hundrerds of bumps. I have to take d3 every day along with calcium. I would talk to your doctor about the amount you should take. Over a long period of time too much d3 could be harmful. Thats one reason I have to get my levels tested every 3-5 months. If my levels are highers, then my dose of d3 gets lowered.
The best vitamin d to take is the d3 otherwise known as Cholecalciferol. I buy mine at walgreens and it comes in 400, 1000, and 2,000 international units (iu) for under 8 dollars. For those who are really deficient they have to take 50,000 IU weekly which is only available by prescription. Before you start taking any type of vitamins I would talk to your doctor or pharmacist because vitamin d could interact with other medications (especially antiacids).
Dreamer, below are the articles that I was referencing. Of course, I'm sure there are other aspects to NF which would explain why people could have a higher or lower number of neurofibromas. Nevertheless, a correlation between vitamin D status and NF does appear to exist. While the study out of UBC is fairly recent (last few years) the idea of vitamin D in some form, alone or incombination with other things, has been suggested as possible NF treatment for over a decade. It isn't new.
http://jmg.bmj.com/cgi/content/abstract/43/10/810
http://www.sld.cu/galerias/pdf/sitios/genetica/vit_d_y_nfm1.pdf
http://www.springerlink.com/content/m51ugw252t5j4071/
Cindy
does it help with the growth of tumors?
CindyLouWho thanks for the information. I will have to look into this more and ask my endocrinologist about it at my next appointment.
There is a lab test, that i believe everyone should do to test their level. Most people have Vit D deficiency. Your doctor can ordered the next time you have blood drawn, also, I've read that the only Lab that does it accurately is LabCorp. Vitamin D seems to be very important for many different reasons, so best to discuss it with your doctor.
Yes the lab test that I have to get done is 1, 25-dihydroxy...i always go to labcorp. However, this test is expensive costing over $500 (before insurance) and takes about 1 week to get your results.
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