Low vit d level and need to see an endocrinologist

elly · Family Member Joined: Mar 09, 2007 Posts: 46

Hi Guys,

Just wanting some opinions please.

I saw my neuro last week for my standard 6 monthly appointment and i asked him to write up a slip to get my vit d levels checked.
Well i had the test done and surprise surprise it's low.
The neuro phoned me to let me know that the level is 30 and it should be above 50. So he wants to refer me to a endocrinologist (this one has a particular interest and researches vit d).

I'm not sure why this is, i just thought that he could recommend me a dose of vitamin d to take.

So i started taking vitd3 1000iu 1 tablet per day.

Have any of you had a low level of vit d and if so did your neuro advise you or did you have to see another specialist?

Thanks

Elly

jimmylegs · Family Elder Joined: Mar 12, 2006 Posts: 1999

hi elly yes i had low vitd3, i had to request the test to find out, as you did. a few glitches involved in that but it got sorted out. i never did get referred to another specialist. i don't think my doc knew that much about it.

if you need a quick boost here's what i did (but it's not in your units sorry - the conversion is 1 of yours = 2.496 of mine, so just divide everything by 2.5 and you should be okay.

my levels were 72 (28. Cool

[edit: that is, 2 8 . 8] when i first got tested and i had already been taking 2000IU and more d3 for a couple of months.

i found a study which let me calculate how long it would take to get to a better level over 100 or so, using that dosage. it was months and months. i was impatient.

i called the hospital and they said they can boost a patient's serum levels 50 (20) units in a short time by giving 50,000IU per day for 10 days.

i did this and on my followup test my level was 149. i used 4000IU per day as a maintenance dosage after that but i did not properly balance my calcium magnesium and zinc dosage with it, so that's something to watch out for.

i have since slacked off on the d3, and on a test earlier this year i was back down in the 70s, so it's time for another 10-day blast.

this is all by way of saying you may want to consider a higher daily, and you may want to think about ensuring those minerals get into the picture also.

i haven't looked into why an endocrinologist would be recommended for you, but i'm sure there are a few people here who can enlighten Smile

JL

gwa · Family Elder Joined: Dec 02, 2005 Posts: 847

[quote="elly"]

So he wants to refer me to a endocrinologist (this one has a particular interest and researches vit d).

quote]

This is a wonderful opportunity for you to get an expert opinion about how much to take. There are a lot of guesses as to dosage floating around online, but seeing someone who is interested in Vit D would be terrific!

Let us know what he says about your dosage needs.

gwa

MaggieMae · Posted: Wed Aug 13, 2008 9:06 am Post subject:

I agree. See the endocrinologist. Then report to us what he had to say. I think we would all be interested. I have read many articles and papers on Vitamin D and many opinions.

My husband's neurologist did not give him the test. We had to request that his GP give the test and tell the GP exactly what test to give. His levels were only 27 and he also had been on more than 2000IU daily for two months when he had the test. His doctors have not had much to say about the Vit D either way. I believe that everyone should have their levels checked just like your cholesterol.

See the endocrinologist.

MaggieMae · Posted: Wed Aug 13, 2008 9:23 am Post subject:

Reading this post today reminded me that I never called for my husband's Vit D results when he had it checked last month. I just called and his total was only 33. He has been taking 4000IU daily for about a year now. We strated at 2000IU and then 3000IU and now 4000IU. He also takes calcium.

Punchy · Posted: Wed Aug 13, 2008 10:01 am Post subject:

Maybe this is a stupid question buy Jimmy, since you're Canadian, did you have to ask your neuro for the test or did you ask your GP?

I only see my neuro once a year, but will my GP be able to interpret the results?

notasperfectasyou · Posted: Wed Aug 13, 2008 10:23 am Post subject: Seinfeld

I'm just going to say that Jimmylegs knows this stuff backwards and forewards. For us, Kim's on 6000 IU D3 daily. When we run out, she's going to fill a script she got from Dr. Sriram for 50,000 IU once a week. Ken
_________________
My Starting Point
Understanding MS 101: Doctor Talk and People Talk

gwa · Family Elder Joined: Dec 02, 2005 Posts: 847

Elly,

Will you ask the doctor if he believes that we get more usable Vit D from the sun or if taking supplements is good enough.

gwa

HUTTO · Posted: Wed Aug 13, 2008 12:38 pm Post subject:

its funny..i had been taking vit d for two years..2000 to 4000...dr moses at vandy requested my level be checked..sho nuff said that it was a 32..he also prescribed me the 50,000 iu..this can not be a conincedence.

jimmylegs · Family Elder Joined: Mar 12, 2006 Posts: 1999

hi elly, maggie mae, and all

there is a body of research out there contending that 4000IU is about what an "average" person would use in an ordinary day, supposing the body's stores were high enough. this is why 4000IU has been called a "maintenance" dosage, and it explains why some people don't find their levels increasing.

i have heard (in the forums here) about someone building levels satisfactorily at supplementary doses of 2000IU per day, i think it was. i would suspect that individual could be getting a higher proportion of their daily d3 intake from sunshine and diet.

depending on your personal situation, you basically need to assess your daily sun exposure and fish intake before deciding on a satisfactory daily maintenance amount. then test at least once a year to make sure you are in the right ball park.

maintenance aside, some patients may require a high dose boost to get them into the right ball park before dropping back to maintenance. this is what i did.

i've seen a study which specified the strength of sunlight required to produce vitamin d3 [found it: http://www.ncbi.nlm.nih.gov/pubmed/2549141 ]. in many northern latitudes, march/april through september/october seems to be the window of opportunity. skin bared to strong enough sun in significant enough amounts (bare arms and legs, maybe torso too) has been asserted to produce 10,000IU in half an hour. after that there appears to be a mechanism which prevents too much vitamin d3 from being created. this number has been proposed as a natural limit that should demarcate the tolerable safe upper limit for daily intake
(http://www.ajcn.org/cgi/content/full/85/3/649)

absorbing *enough* sunlight through the skin for d3 production involves a number of challenges. as mentioned it has to be the right time of year, clear sky, uncovered skin, as well as pale skin, and youthful skin, in order for the highest levels to be generated. supplementing via diet or nutriceutical options can mitigate against these challenges.

elly i expect the endocrinologist would be looking at whether your liver and kidney are properly hydroxylating d3 intakes into the active metabolite required for optimal immune function.

punchy, i asked my GP for this test. you don't need to wait to see your neuro, but there are potential issues when dealing with the family doc. interpreting the results is pretty easy, but getting the RIGHT results caused some issues for me in the "early days" - way back in '06 Rolling Eyes

originally, my doc wrote "vitamin d3" on the requisition. at my lab, this defaulted to a test for 1,25-dihydroxyvitamind3 (1,25(OH)2D3). this is the active steroid hormone form, which is measured in pmol/L. the more valid measure of d3 status is the 25-hydroxyvitamind3 - 25(OH)D3 - which is measured in nmol/L, and which represents the body's available stores from which to make the more tightly-controlled 1,25(OH)2D3 (tightly controlled by your body, therefore it doesn't vary much, therefore it's a lame status measure). it took a little back and forth to explain to my docs with research in hand, but it panned out in the end and now when i get a test it's understood that we're testing 25(OH)D3.

that said, wrt interpretation, you want to be over 50nmol/L to prevent rickets, over 75 nmol/L to protect against osteoporosis, and it's hypothesized that at least 100 nmol/L 25(OH)d3 is beneficial for immune health. you don't want to go over 200nmol/L though (update: recently read a grant/holick document saying up to 250 is okay). at the higher levels you would have to start testing for hypercalcemia. basically in that scenario, you're taking in so much d3 that your diet can't supply the calcium needed to deal with it. it starts pulling calcium from tissue/bones instead, so you see more calcium showing up in the blood. even though the calcium level is elevated, it actually means you don't have enough. so, that's why you test, and that's why you keep taking good ratios of minerals when you're supplementing vitamin d3.

napay thanks Smile

sounds like you're heading in the direction i'm going too. i am sick of the daily attention to d3. which is why my levels are back in the dumper these days. i'm going to do the 50,000IU x 10d booster, and then i think 25,000IU per week after that. all with associated tests for monitoring of course. FYI for anyone who doesn't know, there is a lag time of 3-4 months from max exposure to vit d3 to max serum concentrations of 25(OH)d3.

hutto i'm hearing about lots of 50,000IU recommendations these days - it's good stuff! the word is getting out (after only three decades of research lol)

here are some good starter vitamin d3 cutaneous synthesis links:

Influence of season and latitude on the cutaneous synthesis of vitamin D3: exposure to winter sunlight in Boston and Edmonton will not promote vitamin D3 synthesis in human skin
http://www.ncbi.nlm.nih.gov/pubmed/2839537

Daily Duration of Vitamin D Synthesis in Human Skin with Relation to
Latitude, Total Ozone, Altitude, Ground Cover, Aerosols and Cloud
Thickness
http://www.ncbi.nlm.nih.gov/pubmed/16354110
and their cool calculator:
http://zardoz.nilu.no/~olaeng/fastrt/VitD.html

Sunlight, season, skin pigmentation, vitamin D, and 25-hydroxyvitamin D:
integral components of the vitamin D endocrine system
http://www.ajcn.org/cgi/reprint/67/6/1108.pdf

i have another link somewhere in these threads with a very pretty overview of d3 endocrinology, hydroxylation processes in liver kidney etc. i will try to find it and post a link to it here also.

elly · Family Member Joined: Mar 09, 2007 Posts: 46

Thanks Everyone, i'll let you know how the appointment with the endo goes. I don't know when it will be as the neuro needs to refer me and make the appointment.

Jimmylegs it's interesting that you mentioned pale skin as a possible good thing to have to be able to absorb vitd3 from the sun. I went to see my naturopath yesterday and she said the same thing as i questioned her as to why South American people (where i'm from) also have a higher incidence of ms, she said that people who tan in the sun are not as good at absorbing vit d3. I realise there's a lot more to it than that and this is only one piece of the puzzle.
I don't live there now though, i'm in Australia.

I read in George Jelinek's website about supplementing kids with vitd3, has anyone done this? Could it be dangerous if you don't know what their levels are to begin with?

Elly

jimmylegs · Family Elder Joined: Mar 12, 2006 Posts: 1999

hi again elly, yes the darkening of the skin in sunlight is, i believe, one of the protective mechanisms against making too much vitamin d3.

actually when i was in australia i did a paper for school on that. for my indigenous issues class we had to write about an impact of colonization on the indigenous people. i was already diagnosed by then, so i wrote that having indigenous people wear british dress and thereby covering a larger percentage of the darker skin, could contribute to a significant percentage of current health issues in australia's aboriginal and torres strait islander population.

four interesting documents that i used in my paper:

Prevalence of musculoskeletal conditions, associated pain and disability and the barriers to managing these conditions in a rural, Australian Aboriginal community.
http://www.cababstractsplus.org/google/abstract.asp?AcNo=20053016948
(i checked the full-text and the rural community is Kempsey NSW)

Muscle pain as an indicator of vitamin D deficiency in an urban Australian Aboriginal population
http://www.mja.com.au/public/issues/185_02_170706/ben10209_fm.html
this clip from the abstract might be of interest elly:
"There is also research showing a deficiency in asymptomatic patients, both those at high risk as well as those with no obvious risk factors.12 This is important for the infants of women who are deficient in vitamin D during their pregnancy, as their children will also be deficient in vitamin D and hence at increased risk of both short- and long-term sequelae"
the abstract includes references to two additional papers related to children inheriting d3 deficiency from their mothers.

The Health and Welfare of Australia’s Aboriginal and Torres Strait Islander Peoples.
CHAPTER 6 ILL HEALTH - RISK FACTORS FOR ILL HEALTH
http://www.aihw.gov.au/publications/ihw/hwaatsip01/hwaatsip01-c06.pdf
this nice documents asserts that the health problems of the indigenous people stem from habits of smoking, drinking, drug use, petrol sniffing, poor diet, lack of exercise, violence, etc. the transition away from traditional foods is mentioned, but d3 deficiency literature pertinent to the darker-skinned is not mentioned at all. not in the 2001, 2003, or 2005 editions. (although this may be covered off without being specific in the "nutritional disease" category)
when you look at the kind of health problems for which the indigenous folks are over-represented, a good chunk of them scream vitamin d3 (among other things) to me, why is the d3/dark skin connection being omitted from the risk factor section of these reports? maybe it's too specific? not denigrating enough?

jimmylegs · Family Elder Joined: Mar 12, 2006 Posts: 1999

and to your second question: i think anyone should have a baseline test for things like vitamin D3 before starting a supplementation regimen outside the standard kind of daily multivitamin product.

elly · Family Member Joined: Mar 09, 2007 Posts: 46

Thanks JL will read those articles when i have peace and quiet and my kids are in bed Very Happy

Elly

jimmylegs · Family Elder Joined: Mar 12, 2006 Posts: 1999

great elly, hope they're useful. i wish i could find that d3 endocrine overview paper. will keep looking.