Vitamin D Status |
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ReneeST 
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Joined: Jul 18 2008 Location: Seattle, WA USA Status: Offline Points: 60 |
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 Posted: Oct 15 2008 at 11:31am |
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Oh my! I'm a 10. Whooo hoooo!
Oh wait, that's my Vitamin D level. Finally got the results back yesterday - the laboratory is backed up on all the Vitamin D testing.
Another pill to add to my regime. The sun in the Pacific Northwest doesn't shine all that much in the winter; and I avoid the sun in the summer because of certain medications and my fair skin.
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56 yo Seattle, WA Stage 1, Grade 3, 1.3 cm IDC Lumpectomy Aug 2008
SNB neg;4 rds Taxotere & Cytox. BRCA-2 Variant. 16 Rads Jan 2009 "Canadian Study" www.reneesbumpintheroad.blogspot.com |
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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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Posted: Oct 15 2008 at 2:02pm |
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Renee,
Oh for pete's sake woman.......you are a 10!!! You have always been a 10!!!
I bet that every woman on this site and most in the world are a 10, it's just we allow a man to rate us on the scale sweetie! What the h--- do they know?
Ok now back to the D! You must not avoid the sun, and why don't you ask your doc who ordered this test to put you on that mega dose and then test you again?
Gee, I wonder why the labs are backed up for testing for D?
It's because Ronda's message finally got through to the world!
Did you hear that they are now saying that all children should be taking 400 iu's of D3 every day? That was on MSNBC on Tuesday I think. I think that 1000 is what they should be taking. How many kids are in the sun every day? Very few.
Hugs,
Nancy
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Nancy
DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
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sparrow
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Joined: Feb 09 2008 Location: United States Status: Offline Points: 47 |
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Posted: Apr 12 2009 at 11:58am |
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Hello Everyone,
Just wanted to check back in on this thread. I have had computer problems for several months and have missed checking in on the forum. I'm glad to report that I now have a new computer and high speed internet....feel like I'm now in the 21st century.
I'm now past the one year mark! Praise God! I'm still taking my Vit. D and 4 mo. ago my level was 80! Am currently taking a total of about 4000 IU/day of Vit. D3. My level is checked every 4 months by my oncologist at Vanderbilt in Nashville. I am to call tomorrow for my most recent result. I do tan in a super tanning bed about 5-10 min. once or twice a week. I'm managing my own dosage and making sure I'm checked often. It is frustrating that WE have to educate the doctors (for the most part!)
It concerns me that this poll shows only about 50% are checking Vit. D levels. Why are some not getting a Vit. D check??? I don't understand.....we have to do everything that might help us!
God Bless Edited by sparrow - Apr 12 2009 at 12:01pm |
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60 yowf, 1/4/08 Invasive Ductal Carcinoma, Stage 1, (8mm) grade 3, Sentinal Node biopsy 2nodes removed, both negative. Triple negative, Bilateral mastectomy 1/22/08, no reconstruction, no chemo
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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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Posted: Apr 12 2009 at 2:09pm |
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Hi there Sparrow,
Long time no see sweetie
 I do not know why some are not having the D levels checked, and also I cannot understand why the doctors are not more up-to-date on this. 80....WOW!!! That is right where you should be. Anyone dx with cancer should have D levels of around 80. Connie's were 79 and she was the top but now you are! They say normals should be between 60-100, but people dx with cancer....in the 80's. You know what I cannot understand also? These doctors are telling the women that norms are 30-50. Boy they sure need to be getting educated! My water aerobics instructor has been taking 1000'ius at my insistance since Nov. , and when her doc took her levels she was only at 26. She started her on the 50,000 then off for a few days and then 4000 per day. Her GYN/ONC is soooo insistant that everyone take D3. She said that was the most important vitamin that anyone can take, and even if they took nothing else.
Why are people so afraid to take the 4-5000 a day? If you are in the full sun, with as much of your body exposed as possible for 20 minutes, then you get 10,000. What people fail to realize is that the body does not store it. I send a pm to every new member, with all the info on D3, and tell them how important this is, and to have their D levels checked. I have been doing that for probably a year or so. You can not overdose. You would have to take 100,000 a day for a long time to overdose. I have posted many many articles on the D3 in the news forum also. This is such an essential vitamin. Lori's levels are 76, and she probably needs to get them up a bit more.
I have my entire family on them. However, when my daughter and I were taking her son back to college 2 weeks ago, I asked him if he was taking the D, and he said he forgets, but they are sitting on top of the microwave. He is the one dx with leukemia at 3. Well, you can imagine the conversation after that statement.
 Hey this Meme does not mince words!! I even got him the 2000 iu tablets. He really should be taking about 4-5000 a day, as all he does is sit at a computer all the time. Oh well, I try...Don't be such a stranger, and I bet the new computer is a dream...and the high speed internet....whoa!!
But most of all...the one year mark...congrats!!!
 Lori will be 2 years in June...from dx.Many hugs,
Nancy
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Nancy
DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
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sparrow
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Joined: Feb 09 2008 Location: United States Status: Offline Points: 47 |
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Posted: Apr 13 2009 at 2:01pm |
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Hi Nancy,
I can just imagine that conversation with the grandson! Maybe he'll remember to get it down from the shelf and take it! On a recent visit to my husband's endocrinologist, (who attended a big conference on Vit D, checks all his diabetic patients and encourages them to take Vit. D), I asked him how HIS Vit D level was doing. (I had told him mine was 80). He backed up against the wall and started telling me he'd run out of D3 and just had not had time to get to the store, new grandchild just born, yada, yada, yada. It really tickled me.....we ALL have our excuses, even the doctors. My husband goes back in about 3 mo.'s and I'll ask him again! We ALL need each other to keep us on track.
Had blood work drawn this past Tues. Called today and they said my Vit D level had dropped..............to 79....... I'll take it! I did get a sinking feeling when she said it had dropped, but I can handle one point. I'll just keep taking my 4000IU of D3 and soon will be able to get some sunshine. Until it warms up, I will do 10 min/once or twice a week in the super tanning bed. I'm always careful to build up to the time and never burn.
So glad Lori is doing well. I know June will be a big celebration for your whole family!
God Bless.
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60 yowf, 1/4/08 Invasive Ductal Carcinoma, Stage 1, (8mm) grade 3, Sentinal Node biopsy 2nodes removed, both negative. Triple negative, Bilateral mastectomy 1/22/08, no reconstruction, no chemo
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Yankeespie
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Joined: Mar 20 2009 Location: Maine Status: Offline Points: 41 |
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Posted: Apr 16 2009 at 3:11am |
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Hi Sparrow Nice to meet you, just wish it was because of different circumstances I was wondering if you could pm me sometime, I too havechosenn not to do Chemo. Whatprotocoll if any are you following?
Thank you in advance
Blanket of Huggs,
Bev Edited by Yankeespie - Apr 16 2009 at 10:39am |
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Dx 2-10-09
Er neg Pr neg Her2 neg 1+ Double Mastectomy 3-2-09 2.7cm grade 3 Lymph Nodes neg NO reconstruction, NO chemo KNOWLEDGE IS POWER |
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lavender
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Joined: Mar 11 2008 Location: Canada Status: Offline Points: 24 |
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Posted: May 23 2009 at 10:50am |
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I was 39 but that was after taking 2000iu a day for a couple of months. Now I am not sure if the values are the same here in canada. I was insufficient. I am taking 50 000 iu / once per week now and just had my blood work done. so I am hoping it will be a lot better. I was up to 51 with 5000 iu but they want it to be over 100.
It seems to take a long time to get the numbers up. |
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Lavender
DX Sept 07 Oct 07 Partial mastectomy 0/18 nodes T2a N0 grade 3 TN Mar 08 completed 4AC& 4T Apr 08 mastectomy with expander |
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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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Posted: May 23 2009 at 12:01pm |
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Lavender,
So great.... in fact fantastic that they want it up over 100.
Finally someone who understands the importance of the D levels. Ronda says that when you are about to have your D levels tested, that you are to go off the D for a few days, and that way they get the true levels. Are you taking magnesium with the D3, as that is a must? You really need to take Selenium also, and the Turmeric, but the ground root of turmeric. Just put about 1/4 to 1/2 teaspoon on eggs in the morning, or on salads, or in your soup. Do not cook it in the foods, just add it with a wee bit of olive oil and black pepper, as that increases your body's ability to absorb it by 2000. dmayes (Deb), says she puts it on her eggs in the moring, as do I or on whatever we are having for supper. It does turn your urine a yello color, but do not worry, and you cannot overdose on it in it's natural form.
Hope you can get those levels up as this has to do with your immune system, and it's ability to fight those nasty cancer cells.
Hugs,
Nancy
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Nancy
DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
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lavender
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Joined: Mar 11 2008 Location: Canada Status: Offline Points: 24 |
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Posted: May 23 2009 at 3:22pm |
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Thanks Nancy. I am trying to add tumeric. My magnesium levels are good . I am allergic to fish and seafood so I am taking the plant form of DHA. I have a great family doctor that follows me and I get my blood checked every two months for vitamin D until my levels get up. Also I have a doctor that is looking at prevention out of a specialty clinic with alternative/complementary therapy. They have cooking classes but I have not been yet.
I didn't know about not cooking the tumeric. I was told to use also in my homemade soups. I add to my spice mix with baked chicken with the flour mixture. Can't taste it anyway. I just wish my WBC count would get back to normal. It still falls low and my neutrophils. My doctor says it is normal for even up to a couple years post tx but still needs to be watched. It does go up after surgery, so at least it is working when needed. I will have that checked again after I heal more from my last surgery a month ago. |
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Lavender
DX Sept 07 Oct 07 Partial mastectomy 0/18 nodes T2a N0 grade 3 TN Mar 08 completed 4AC& 4T Apr 08 mastectomy with expander |
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mainsailset
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Joined: Jul 27 2008 Location: Washington State Status: Offline Points: 5004 |
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Posted: May 23 2009 at 4:07pm |
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Ok, I have a question. I just had my 3rd D test. First test came back a single number, I think it was 28, 2nd test taken after I had started chemo came back at 18. My onc prescribed 50,000 D2 a week taken by single pill 1x a week. That was back in October/November. Results came back at 32 after 4 weeks.
Nov, Dec, Jan, Feb, March, April I saw no sunlight whatsoever and did not take any supplement...
3rd test taken 2 weeks ago comes back at 40! I look at it and I see the D2 is at 36 (could this be a holdover from the supplement the onc gave me back in the Fall) and the D3 is at 4!!!
Something is screwy here, the 40 is subjectively taken meaning my D is just fine but the D3 reading of 4 tells me I'm in trouble. Anyone else have experience reading the 2 tests?
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lavender
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Posted: May 23 2009 at 4:22pm |
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Mainsailset, The test to check the blood levels is 25(OH)D. Have you had this blood test done.
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Lavender
DX Sept 07 Oct 07 Partial mastectomy 0/18 nodes T2a N0 grade 3 TN Mar 08 completed 4AC& 4T Apr 08 mastectomy with expander |
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mainsailset
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Posted: May 23 2009 at 4:41pm |
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Yes, all 3 were, and all 3 give a separate count for 2 and for 3 then combine the 2 and it's the overall that the doctor judges by. My question is that my D3 is extremely low and I think lumping the 2 together is giving me a misreading.
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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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Posted: May 23 2009 at 4:50pm |
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Mainy,
I will copy and paste your post to Ronda, and I know she will reply. I didn't know they checked for the D2. Are you sure you had the right test? I posted an article on this in the news forum, and it is on the first page.
Your D levels should be between 60-100 with in the 80's being optimal. If your doctor did not order the correct test, then you will not get your true levels. Some are flawed also, and I had posted an article on that also.
Here is a link that may help you decipher your test. I have not read it.
Nancy
and another from the vitamin D council. But....Ronda will be able to explain it better than anyone
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Nancy
DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
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mainsailset
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Posted: May 23 2009 at 5:05pm |
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Nancy, I suspect I found the problem and IT'S A PROBLEM. My first test and my 3rd test were both the 25 OHD3 and were processed by Quest Diagnostics. See article below
My 2nd test that came in overall low was by another company. I found several articles about Quest, all with the same conclusions as the one I've linked to. This is so serious I want to throw something.
It also sounds like Quest is the one that separates out the D2 from the D3 on their results which may explain why you're used to seeing just one number....you're tests are being processed by another company using the Gold Standard.
Whatchathink?
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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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Posted: May 23 2009 at 5:23pm |
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Mainy,
Yep!! That company, and I think that article was the one I posted. Did you get this article from the news forum? Go ahead and throw something!!
I keep posting D news, and it seems no one is reading the articles.I am telling all you women that you must....I repeat must....get your levels checked and by the right company. If you just read the articles from the council on Vitamin D, which is a non-profit organization, you will see why I am so adamant on this one thing. Anyone dx with cancer should be eating this tablet like candy, and insisting that their doctors do levels every few months.
D3 is a hormone, and we need to be taking mega doses of this every day. Lori and my tests are the correct ones, and Lori's levels are 76, and mine, which were taken BEFORE I started taking D3 were 57. This year I am hoping for a much higher number, since I take 2800 a day. Lori takes 5000 iu's a day. Connie's were 79, which means that she is doing something right. The rest of you....not so much
 If you think your doctors are going to tell you that your levels should be very high....think again. Most of them don't know diddly squat about D3. Their medical books were written by the drug comapnies, and the drug companies cannot manufacture D!!
5000 iu's is what everyone of you should be taking and possibly higher doses, and get those levels wayyyyy up there. Cancer does not have a chance when D3 is in your system.
hugs,
Nancy
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Nancy
DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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Posted: May 23 2009 at 5:30pm |
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Lavender,
When you're cooking with the herbs (turmeric), all their oils are extracted, and the biologically active compounds are lost. Just add this to your soups , etc., when you are ready to eat and don't forget the black pepper. If they tell you in the cooking classes to "cook" with it, they are incorrect. You want the full benefit of that 1/4 to 1/2 teaspoon every day in your body!
Hugs,
Nancy
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Nancy
DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
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mainsailset
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Posted: May 23 2009 at 5:34pm |
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Thanks Nancy for reminding me to read all the great articles! My attention span is so short that hopefully I'll remember this time for more than a few minutes.
The Quest stuff can and was up to 40% off, they are supposed to be back on track as of January '09 but if my results are any example, not so much.
I'm still concerned about the lump sum thing, seeing my 3's so extremely low and the 2's fairly good, it seems it would be easy for the docs to color me good and move on (or sorta good).
Good thing this is a long weekend so I can cool down before the call to the doc on Tues am.
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Ronda
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Posted: May 25 2009 at 7:00am |
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Hi Gals, glad to see the D thing is catching on. One thing to remember is that D deficiency goes hand in hand with Calcium and Magnesim deficiency, so it's really important to take the three supplements together because they need eachother to work properly. Also keep in mind that D2 is NOT as effective as D3, so D3 is your best bet. I have been taking drops that contain 2000 is's per drop.
I'm working on making a video on the topic and just found out Dr. Cannel who runs the D council site will give me an interview. WOOOHOOO!
Luv,
Ronda
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DX 3/07 IDC Trip neg, stage 2b, SN biopsy 3 node neg. No vascular invasion, Mast 4/07 AC+T DD Finshed 8/07 BRCA 1, Proph Mast 10/07. Reconst & Prophy Hyst. 10/08
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mefowler
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Joined: Apr 29 2009 Location: Topeka, Kansas Status: Offline Points: 115 |
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Posted: May 25 2009 at 8:33am |
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Vitamin D is important, and I check the levels of nearly all my patients regularly, but it is also important to check your parathyroid hormone. Now parathyroid hormone is often slightly elevated when your vitamin D level is low, but when I switched myself from D2 to D3 at the advice of my oncologist, without checking my PTH, my calcium soared to 12.9 and I had to be hospitalized. I was taken off vitamin D and they checked my PTH intact, which was elevated. I looked it up in UptoDate and they said that women with undiagnosed hyperparathyroidism can develop hypercalcemia in response to D3. I can tell you that it freaked me out and I was afraid I had metastases to bone. It was a big relief when I found out what was going on. So I would just caution you to have them check your PTH intact as well as your vitamin D, and also that you should be cautious about supplementing with magnesium if you have any renal impairment, as high magnesium can be as detrimental as low magnesium.
Maire |
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mainsailset
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Posted: May 25 2009 at 8:48am |
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Ronda, I'm still concerned that these test results end up combining the 2 & 3 which for someone like me with a really low 3 I get the thumbs up when really the 3 is severely low. Any chance you can address this in your interview?
The lab that did my work (Quest) is, probably the largest lab in US and yet Vitamin Council as late as March is indicating that you should divide their results by 1.4 to get your real D results.
Maire: I'm so glad you put up that response, I had requested that the lab (Quest) do a thyroid but they didn't and since my first emotional response was to double up on the D's, I'll now go back and get the thyroid.
Why do I get the feeling that the D's are holding some of the answers for all of us?
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