help with vit D levels

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  • coonie
    coonie Member Posts: 7,618
    edited June 2010
    LOLOL...we can't win for losing can we? gotta take one pill to fix one thing and another pill to fix the thing we were fixing with the other pill....and on and on it goesTongue out and it's no telling what all of us together is doing to our bodies!!!!! uggghhhhhh  Guess we've gotta keep the medical field in business though.......hehe
  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2010

    Yep, coonie, it's a conspiracy, I just know it.  Just bought a splint for my thumb.  Let's see if a few weeks with it can give relief from my trigger thumb which, of course, is not directly a result of my Arimidex but is just the normal aging process and arthritis (which, by the way, I don't have in my hand!).  Got to keep CVS, Futuro, Ace, etc. in business now, don't we?

  • NativeMainer
    NativeMainer Member Posts: 10,462
    edited June 2010

    See why there isn't a cure for cancer?  Not only would oncologists go out of business, but cancer centers, CVS etc, producers of antidepressants and pain medications, breast surgeons,  and so on. 

  • juli0212
    juli0212 Member Posts: 1,415
    edited June 2010

    JO-5, I actually never considered stopping my Tamoxifen (since Feb. 2007).  Since I was pre-menopausal, and induced into menopause in one day (taxol/gemzar chemo agents), I NEED it and know it.  And yes, we will be switching to an aromatase inhibitor as I'm definitely now post-menopausal.  (Makes a difference in meds, as we all know by now)  (And, yes, I get that you're speaking tongue-in-cheek, lol).   But, yeah, like you, I'm not stopping taking the meds or the vitamin d.  Sorry about your thingies for your kneesies  :(   One thing or another, huh?   We do the best we can.  I have 8 more weeks of the Vitamin D2 50,000ius.  Called the endocrinologist, nurse called back saying to continue taking it, that it will not affect my calcium levels (it raises the level, and I'm hyperparathyroid) that much, and the level of D3 will increase. Time will tell after my testing in 8 more weeks.  I had no symptoms, unlike some others who have chimed in here?  Only BREAST CANCER, maybe????    :O    lol...who really knows?

    Okay, thanks for listening, just really writing cus it's raining out right now!   :)    ~juli

  • juli0212
    juli0212 Member Posts: 1,415
    edited June 2010

    Hi JO-5.  Yeah, not missing the medication is doing good for ourselves.  I DID miss 2 days that I can recall due to my daily migraines/vomiting.   Not bad since Feb. 2007, lol.  Been taking the 50,000ius of D2 for 4 weeks now, 8 more weeks to go.  It's the only high dose of Vitamin D when you're deficient, the pharmacist says the D2 metabolizes to D3, so hoping I'm not deficient (it's chronic with me) at end of 12 weeks, then go on a 'maintenance of D3' (I was on 1,000ius of D3 daily for years, still deficient).   I also have hyperparathyroidism, so no calcium for me.  (I have high blood calcium).  How are YOU doing?  Are you still on Arimidex?  My doc is switching me from tamox to an AI at some point, and then for 7 years (very aggressive treatment for aggressive tumor/cancer--I agree with it).   Glad you had clear margins, I did not, and had to have chemo and the 36 rads with 5 boosters, ending up with partial mastectomy.   I wish you well!  ~juli

  • unklezwifeonty
    unklezwifeonty Member Posts: 1,710
    edited June 2010

    I take 5,000 IU (5 thousand not fifty thousand) D3 every day. This is the only thing that has really worked for me to bump my levels. It is available online from vitaminshoppe.com. They sell one made by Solgar that I take. I am sure there are others.

  • cs7777
    cs7777 Member Posts: 570
    edited June 2010

    Sorry to be a wet rag, but, D2 is not metabolized to D3.  Both are metabolized down the same pathways into similar active compounds, which is perhaps what the pharmacist was referring to, but those active forms do not literally have the same chemical structure.  Anyone who's interested can go back a page or two for a detailed description of the metabolism, or google the chemistry of vitamin D and look it up yourself.  That said, both D2 and D3, when metabolized to their active forms, do act and are treated by the body to some degree similarly.  The arguments are over HOW similarly.  There are studies that show D2 is just as effective at raising blood levels as D3, and studies that show it most definitely is not, and the problem is that the studies were done differently (different doses, different time frames) so they're not comparable.  Bummer.  For me, since there's a question, I figure that my body makes D3 so I might as well use D3 since it's cheap and available. 

    For anyone who is recommended the high dose (50,000 IU/pill) of vit D in the US, it is true that most prescriptions given for it will be filled with D2 because that's what a pharma company sells as a prescription.  The good news is that if you prefer D3, it IS AVAILABLE in over the counter form in pills up to 50,000 IU at very reasonable prices, so you don't need to use the D2 to get the high dose if you don't want to.  I found them at a good local health food store, but if you don't have such, you can find them by mailorder (google vitamin D3 50,000 IU), even on Amazon, e.g., http://www.amazon.com/Vitamin-D3-50-D3-Cholecalciferol/dp/B000A0F2B2.  Alternatively you could buy lower dose pills and take multiples.  That's what I did.  Anyway, just some suggestions...

  • juli0212
    juli0212 Member Posts: 1,415
    edited June 2010

    I will continue taking the 50,000ius of the Vitamin D2 for the 12 weeks (8 more weeks to go) as per my endocrinologist/oncologist and breast surgeon.  They said not to switch this with 50,000ius of Vitamin D3 that I could buy.  I defer to the doctors, no offense to anyone here.  THEN after these 12 weeks are up, I see what my level is, and we'll talk about maintaining D3 levels with WHAT supplement.  Thanks always for the info here.   ~juli

  • cs7777
    cs7777 Member Posts: 570
    edited June 2010
    Juli, Jo and all, I know you're not saying this but I just want to say for the record that I'm not trying to convince anyone to go agst their docs or their own best judgment.  When I post things like my last post its to provide information for consideration, and I have a hard time suppressing comments about things like D2 metabolizing into D3 when I have seen and have the knowledge to understand direct evidence to the contrary.  What people read here is some random unknown person (me) saying it doesn't, and some random pharmacist saying it does, and what I hope is that the person who feels its important for them will say, hmmm, there's a disagreement here, I better go confirm which it is for myself (by looking it up on reliable websites, asking my own dr or pharmacist etc).  I'm a biomed researcher by training and I enjoy reading the research literature, so when I was first told I was deficient I dove in to learn what I could on the biology and chemistry of vit D. It's fascinating but bizarre that we're still quite ignorant about this very basic hormone in our bodies!  Anyway whether my posts provide info that's useful or not, my true hope is that everyone repletes themselves by whatever method each feels is best, since it's clear that vit D is good for us! 
  • Makratz
    Makratz Member Posts: 12,678
    edited June 2010

    cs777,

    I think we all appreciate your posts!  Whether we agree with you or not, they are filled with  useful information and they make us think, and yes, sometimes question our dr's.  I'm okay with that!

    Thank you,

    Linda

  • juli0212
    juli0212 Member Posts: 1,415
    edited June 2010

    cs7777, NO problem, and I didn't mean to infer that I was discounting what you said, hence my thanking everyone for the info.  Yes, it does make one 'wonder' and I certainly will also be asking for the BEST Vitamin D3 to take after my 12 weekly doses are up, and we see what my levels are.  I thank you for the info, and always question everything.  Right now with 3 doctors telling me to take that 12 weeks of the D2, I will do so.  THEN things may change after that, I've fired doctors before, so I have no problem asking questions.  THANKS for the info always!   ~juli

    JO-5:  On this related note, I'd taken 1,000ius of Vitamin D3 for years and was still deficient.  So that dose is not enough obviously for me...just a note as you said you may (you will) have to take a D3 supplement, no doubt you will, one must maintain higher values.   Just a thought.

  • cs7777
    cs7777 Member Posts: 570
    edited June 2010

    No problem here either, not to worry.  :)  I just wanted to make sure everyone understood my thinking behind what I post.  Writing often doesn't get across nuance and motivation. 

    And since this is a vit D thread, I will say we've got glorious sunshine today and I think I may partake a bit and make some of my own D today! Cool

  • Makratz
    Makratz Member Posts: 12,678
    edited June 2010

    Could you please send some to the Boston area?  It's been days since I've seen the sun!

  • Makratz
    Makratz Member Posts: 12,678
    edited June 2010

    I used to feel like that too, JO.  I think it all had to do with my hating to drink water.  Now I make myself drink it, especially when its hot out.  Flalvored water helps too.  I can handle the sun and heat much better when I am hydrated.  I hated those headaches!

  • Luna5
    Luna5 Member Posts: 738
    edited June 2010

    Makraz....it is 98 degrees here today.  My rear view mirror  glue melted and ran down the windshield and the mirror fell off.....so I will be happy to send some of this sunshine up to Boston!

  • Makratz
    Makratz Member Posts: 12,678
    edited June 2010

    Oh my, Luna!!  That happened to me once on a very hot weekend.  I learned you need to keep the windows down just a bit to let the heat escape.  I think the heat and humidity is heading my way.  By the end of the week it's supposed to be in the 90's and very humid.  Thanks for the heat, but you can keep the humidity.  I will be at the baseball fields all weekend for my sons games.  Too hot for baseball!

  • juli0212
    juli0212 Member Posts: 1,415
    edited June 2010

    JO:  I cannot be in the heat either, or the sun.  I burn very easily, have the *damned* hot flashes (lol...from chemo-induced menopause/tamoxifen), have daily migraines (I hear ya on head pain from the sun/heat).  So, yeah, supplements of Vitamin D are a necessity for us 'non-sunners'. :)

    We also have had quite a lot of heat lately, and to be 90 this weekend.  I stay in my a/c, and if we drive, I take my a/c COUPE!   If I have to walk around in the sun, I wear a hat and sunscreen, though I sweat it off anyway.  HATE the heat...prefer Fall all year-round, lol.   :)))   ~juli

  • juli0212
    juli0212 Member Posts: 1,415
    edited June 2010

    JO:  It makes perfect sense to me!   I bet you have been vitamin d deficient for a long time (I am wondering how MANY of us really are deficient who have been diagnosed with IDC/or breast cancer in other forms as well???   Wonder if any studies have been done on vitamin d in relation to deficiencies & breast cancer, I read somewhere a long time ago that they were related?).

    Are you getting your levels checked soon, I know you said (IIRC--if I remember correctly, lol) you had one more week to take the large dose of D2?   Keep us posted, and let us know what your docs recommend to keep the D3 level up for you, okay?  *HUGS*   ~juli

  • NativeMainer
    NativeMainer Member Posts: 10,462
    edited June 2010

    JO--I know this is off topic but your comment about ironing made me LOL!  Janet Evanovich writes books whose main character's mother handles stress (usually caused by the main character) by ironing!  So even if it isn't excercise, it's stress releaving! 

  • juli0212
    juli0212 Member Posts: 1,415
    edited June 2010

    JO:  We have some things similar.  I also cannot take multi-vitamins, they make my daily migraines so much worse (and yes, it's probably not the 'active' ingredients).  I took the 1,000ius of Vitamin D3 for a long time after my breast cancer dx, as I was very deficient (15)...along with 50,000ius from time to time, never for 12 weeks, it was always for 6 or 8 weeks.   I cannot take calcium however, as I have hyperparathyroidism (high calcium in blood), and have my bone density checked as well (parathyroidectomy--one parathyroid gland removed with a tumor in 2002/benign), and mine is fine as well.  My onco doesn't wish to switch me from tamox to an AI just yet due to the calcium issues, though no bone issues per se.  (We do bone density every year same time as mammogram/ultrasound, then 6 months later I get the bilaterial breast MRI)

    Yes, please do let us know your levels once you get tested again, see if this 50,000ius of vitamin d2 has helped, I'm really curious about that now!  

    LOL on the ironing to music...you probably 'move' to the music, so yeah, I'd call it exercise!  (Another thing I cannot do due to the exertion on the daily migraines/nausea, but I can walk).

    Have a great day!   ~juli

  • juli0212
    juli0212 Member Posts: 1,415
    edited June 2010

    LOL...nah, we have too much humor going for us, JO!   :)   I don't define myself by my health issues, as I see you don't either.  Life goes on, my motto:  LIFE IS SO WORTH IT!   :)

    ~juli

  • cs7777
    cs7777 Member Posts: 570
    edited June 2010

    Makraz - I'd gladly send sunshine your way if I could! Hopefully this weekend will be nice for you.   Julie - I too have seen some papers that vit D deficiency might be related to BC and other cancers but at least what I've seen isn't definitive yet--some associations but no proof of cause.  I think its being researched  more actively now, esp since vit D deficiency is so common.  Jo- I'll second Julie's response - what you say does seem logical about perhaps long time D deficiency. Perhaps you could build up with smaller doses if the large ones make you sick??

    CS

  • Makratz
    Makratz Member Posts: 12,678
    edited June 2010

    Thanks for all the sunshine Ladies!!!   Free vitamin D for me!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2010
    JO, NO - absolutely NO - to ironing for you!!!  You know you and your ironing board are not friends.  Others on here may have short memories or not know of the issue with you and the ironing board but I remember and it wasn't pretty!  Another one of those and you will need much more than a heavy dose of Vit D.
  • Makratz
    Makratz Member Posts: 12,678
    edited June 2010

    Patoo, I vaguely remember JO's incident, please remind me.  I think it was on the housework thread, like the time Cathi's vacuuming caught fire.........so no more vacuuming!  Way to dangerous!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2010
    Not sure which thread it was but JO's foot and the ironing board foot had an altercation and the ironing board won!  Laughing
  • Makratz
    Makratz Member Posts: 12,678
    edited June 2010

    LOL!!!  Poor JO!!!  I would give up ironing if I were you!

  • Makratz
    Makratz Member Posts: 12,678
    edited June 2010

    Oh JO, if we onlly lived closer, I'd have enough laundry for you to iron to keep you busy all day!  I hate ironing!

  • juli0212
    juli0212 Member Posts: 1,415
    edited June 2010

    This has just turned too funny!   I put my clothes in the dryer with an unscented dryer sheet and a wet washcloth, VOILA`, unwrinkled clothes!  I don't have the patience to iron, so kudos to you JO for doing so.  I also remember my Mom doing the same thing.   Nope you ain't old!  ;)   ~juli

  • Makratz
    Makratz Member Posts: 12,678
    edited June 2010

    No comment on the double knit, I'll google it.

    I went to Catholic schools along with my 5 siblings.  We all wore those pleated skirts and white blouses.  My Mom spent her entire day ironing for all of us.  She never complained.  She would never let us leave the house if the pleats weren't perfect!

    I iron all my DH's clothes for work.  I can deal with it since he was kind enough to put a nice big TV in the basement for me so I can watch while I rion.

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