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Topic: Vit D help needed!

Forum: Complementary and Holistic Medicine and Treatment — Complementary medicine refers to treatments that are used WITH standard treatment. Holistic medicine is a term used to describe therapies that attempt to treat the patient as a whole person.

Posted on: May 18, 2014 03:45PM - edited May 18, 2014 03:46PM by SophiaMarie

SophiaMarie wrote:

I've been taking 50,000 IUs since last November - started at 18, went up to 28 - and now down to 25.  It's the synthetic ergocalciferol.  I questioned the pharmacist when I first got the prescription - as to why it wasn't cholecalciferol and was told it was just as good.  I don't necessarily agree, but decided to just try it.  It's been about 6 month now - shouldn't I be higher by now?  And why did it drop?!  I take it with fat too.  I need to call my dr back tomorrow and I'm trying to get my facts together - first I'd like to ask for the cholecalciferol.  But even with the other - shouldn't it be higher?  What reasons could there be for this?  If you know of any good websites for this, pls do let me know!

Also, he said he's aiming for 32 - I thought it should be much higher!  Help!p

Dx 7/2013, IDC, ER+/PR+, HER2- Surgery 8/4/2013 Lumpectomy: Right; Lymph node removal: Right, Sentinel Dx IDC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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May 18, 2014 04:05PM elindy wrote:

You should be taking the over the counter D3. I take 2000 units a day. My count went from 23 to 41 in  matter of months. I want to get to 60. D3 is absorbed much better by the body.

Dx 6/9/2013, IDC, 1cm, Stage IA, Grade 2, 0/5 nodes, ER-/PR-, HER2- Surgery 6/27/2013 Lumpectomy: Right Chemotherapy 7/18/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 10/29/2013
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May 18, 2014 04:45PM muska wrote:

I am taking OTC D3 too, 2000 units a day. It took me from 30 to 52 in about six months.

Dx at 54 Dx 5/9/2013, DCIS/IDC, Right, <1cm, Stage IIIA, Grade 3, 7/11 nodes, ER+/PR+, HER2- (FISH) Surgery 6/12/2013 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 6/13/2013, LCIS, Both breasts Chemotherapy 7/24/2013 AC + T (Taxol) Surgery 2/19/2014 Reconstruction (left); Reconstruction (right) Hormonal Therapy 3/11/2014 Arimidex (anastrozole) Radiation Therapy 3/22/2014 Breast, Lymph nodes, Bone
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May 18, 2014 04:56PM SophiaMarie wrote:

do they not have a prescription D3?  I did check at vitacost and the D3 is very reasonable.  Something must be done differently!

What was the target number your dr was aiming for?  I'm wondering why mine set it so low.

Dx 7/2013, IDC, ER+/PR+, HER2- Surgery 8/4/2013 Lumpectomy: Right; Lymph node removal: Right, Sentinel Dx IDC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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May 18, 2014 05:04PM - edited May 18, 2014 05:05PM by juneping

i have been taking vit D3 since dx...it went up from 13.7 to 58 in three months. and doc said he wanted mine to get higher. can't remember how high but i think i read somewhere around 70+. oh and vit D should be taken with or after a meal.

i've read sometimes liver problem can affect vit D3 absorption. but it's better to check with you doc.

juneping.wordpress.com/ Dx 11/15/2013, DCIS Dx 11/15/2013, IDC, 6cm+, Stage IIIA, Grade 2, 2/35 nodes, ER+/PR+, HER2-
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May 18, 2014 05:14PM - edited May 18, 2014 05:17PM by muska

my doc said she would like vit D to be in the 50-60 range. But as juneping said it is always good to talk to your doctor because our health histories, age etc matter

Dx at 54 Dx 5/9/2013, DCIS/IDC, Right, <1cm, Stage IIIA, Grade 3, 7/11 nodes, ER+/PR+, HER2- (FISH) Surgery 6/12/2013 Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 6/13/2013, LCIS, Both breasts Chemotherapy 7/24/2013 AC + T (Taxol) Surgery 2/19/2014 Reconstruction (left); Reconstruction (right) Hormonal Therapy 3/11/2014 Arimidex (anastrozole) Radiation Therapy 3/22/2014 Breast, Lymph nodes, Bone
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May 18, 2014 09:02PM SophiaMarie wrote:

yeah, I will definitely be talking to him first!  Thanks for all of your input!

Dx 7/2013, IDC, ER+/PR+, HER2- Surgery 8/4/2013 Lumpectomy: Right; Lymph node removal: Right, Sentinel Dx IDC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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May 22, 2014 07:51AM - edited May 22, 2014 07:53AM by Joysoul

Hello to Everyone. I am new here.  I am happy to have found this forum.   

Hi Sophia. I too am taking Vitamin D.. In my particular case, I did not require Chemo and I chose not to have radiation; being a good candidate for that choice. 

On April 25th I had a lumpectomy followed up by a hematoma removal and some more tissue removal around the original site on May 7. 

Everything came back negative. They tell me I am "cancer free" at this time. Working with the medical oncologist recently, I will begin taking

Anasterol a generic drug for Amidex (i may have those spellings wrong). 

Is there anyone out there who has or is taking this drug?? If so, I would love to know what kind of reactions you have had to it - if any. 

Thanks to all and have a HAPPY DAY :)     Bobbi  

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May 23, 2014 07:35AM cp418 wrote:

My understanding is some people do not utilize very well some of the oral Vitamin D supplements.  This brand was recommended by my Nutritionist and works for me.  I still need to take at least 6000 units daily to keep my levels up.  I protect myself from the sun as instructed by my dermatologist as I am high risk for melanoma.....

http://www.pureformulas.com/biodmulsion-forte-1-fluid-oz-by-biotics-research.html?CAPCID=391618851&CADEVICE=c&CA_6C15C=1394474136#sthash.VFmmZomJ.dpbs

 

 

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May 23, 2014 01:54PM SophiaMarie wrote:

thank you cp!  I was looking at The Garden of Life brand, but this sounds better.  I found it on Amazon a bit cheaper even!  I put a msg through to the nutritionist that works with cancer patients.  I had talked with her last Fall and think she can be of help.  Unfortunately with the holiday weekend, I will probably have to wait until Tues.

Dx 7/2013, IDC, ER+/PR+, HER2- Surgery 8/4/2013 Lumpectomy: Right; Lymph node removal: Right, Sentinel Dx IDC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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May 23, 2014 01:57PM SophiaMarie wrote:

hi Bobbi - glad you found this place - it's been a tremendous help to me!  Unfortunately I can't help you with the anasterol.  There are other discussion forums on here though that would probably be able to help - I think there's one for hormonal treatments....

Dx 7/2013, IDC, ER+/PR+, HER2- Surgery 8/4/2013 Lumpectomy: Right; Lymph node removal: Right, Sentinel Dx IDC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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May 27, 2014 10:07AM corky60 wrote:

Joysoul, there is discussion about Arimidex in the Hormonal Therapy section. 

There is also this information: http://www.breastcancer.org/treatment/hormonal/aromatase_inhibitors/arimidex

Welcome to the boards.  Take time to explore and become familiar with what's available here.  We are here to help.--Corky

Dx 3/25/2013, IDC, Right, <1cm, Stage IA, Grade 1, 0/1 nodes, ER+/PR+, HER2- Surgery 4/25/2013 Lumpectomy: Right; Lymph node removal: Right Radiation Therapy 5/28/2013 Breast
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Jul 8, 2014 12:55AM - edited Sep 9, 2014 04:12PM by yoga_girl

This Post was deleted by yoga_girl.
Dx 4/7/2013, IDC, 2cm, Stage IB, Grade 3, 0/2 nodes, ER-/PR-, HER2- Surgery 9/2/2013 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 10/28/2013 3DCRT: Breast, Lymph nodes Hormonal Therapy 6/15/2014 Femara (letrozole)
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Aug 30, 2014 11:41AM inga6060 wrote:

So, there is is a vit d out there that is so much superior in absorption.  Natural practitioners would have it, or you can buy online.  Its from biotics research.  Its emulsified d.  Way way better.  It put my levels over 100.  So, less is more.

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Aug 30, 2014 12:35PM Bren58 wrote:

inga6060, that is the one I take too. Last fall my D level was about 79. My nutritionist was out of the Biotics brand so I tried another brand. By April my D had dropped to 31. Needless to say I switched back to the Bio-D-mulsion from Biotocs and it is back up to 83. It is the only one that I will take from now on! 

Faith is having the courage to let God have control. Dx 7/4/2000, DCIS, Stage 0, Grade 3 Surgery 8/27/2000 Lymph node removal: Right, Sentinel Surgery 8/27/2000 Mastectomy: Left, Right Surgery 12/4/2000 Reconstruction (left); Reconstruction (right) Surgery 12/1/2009 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction Surgery 9/10/2012 Lymph node removal: Right Dx 9/11/2012, IDC, 1cm, Stage IIB, Grade 3, 1/29 nodes, ER+/PR+, HER2+ Targeted Therapy 11/29/2012 Herceptin (trastuzumab) Chemotherapy 11/29/2012 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 4/24/2013 Lymph node removal: Right, Underarm/Axillary Hormonal Therapy 7/24/2013 Arimidex (anastrozole) Hormonal Therapy 7/31/2014 Aromasin (exemestane)
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Aug 30, 2014 04:26PM cp418 wrote:

Ditto - the comments about Bio-D-mulsion.  I switched to this brand about 2 years ago and now can maintain my D levels at 70 - 80 range.  I read somewhere that some individuasl do not metabolize or absorb certain Vit D supplements.  This may be the reason why this brand has worked better for some of us.

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Aug 30, 2014 04:57PM - edited Aug 30, 2014 04:57PM by heartnsoul76

inga, Bren & cp - how many IUs of Bio-D-Mulsion do you take per day?  They are available at Amazon.  I see they are drops - how do you take them?  Just drop them on your tongue, lol?  I agree about some people not metabolizing Vit D correctly.  I've been taking about 7000 IUs per day plus a prescription from my MO for 50,000 IUs per month and in 3 months I only went from 37 to 41.

If you focus on the worst case scenario and it happens, you've lived it twice. ~Michael J. Fox Dx 5/15/2010, IDC, 2cm, Stage IIA, Grade 3, 0/1 nodes, ER+/PR+, HER2- Surgery 6/10/2010 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 7/6/2010 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 10/21/2010 Hormonal Therapy 1/1/2011
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Aug 30, 2014 05:08PM Patti8861 wrote:

i am new here too.  I took Anastrazole for 2 months and the side effects were joint pain to already arthritic knees.  It was very painful and also seemed to affect one hip.  I was told to stop taking it for a month and the pain went away.  I am now taking exemestane with the only side  effect being hot flashes.  I do have insomnia only exacerbated by the breast cancer diagnosis.  So what was a problem with sleeping is MUCH worse since diagnosis.  I have not found any of recently prescribed meds to work for the insomnia 

so I will have to call my doctor.

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Aug 30, 2014 05:23PM - edited Aug 30, 2014 05:25PM by cp418

When I needed to up my Vit D levels I was taking approx 8000 units per day.  I add the drops to my smoothie drink in the morning.  I still take 6000 units daily to maintain my Vit D level otherwise it drops.

 

Patti - look up Melatonin supplement as a sleep aide.  It works well for many people and has been recommended for breast cancer patients.

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Aug 30, 2014 05:36PM heartnsoul76 wrote:

Thanks cp! That sounds like a good plan to me. I feel a Vit D range in the 70-80s in very important for breast cancer patients. Other people, 40-60 is fine and that's what some oncs are going by.

If you focus on the worst case scenario and it happens, you've lived it twice. ~Michael J. Fox Dx 5/15/2010, IDC, 2cm, Stage IIA, Grade 3, 0/1 nodes, ER+/PR+, HER2- Surgery 6/10/2010 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 7/6/2010 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 10/21/2010 Hormonal Therapy 1/1/2011
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Aug 30, 2014 07:06PM keepthefaith wrote:

Hi ladies, I'm glad I found this thread!

I have osteoporosis, osteopenia and low Vit D levels. MO said take D3 and Calcium. I just had my Vit D levels re-checked last week to see if they have improved since starting the supplements a few months ago. Will know something next week.  The drops sound great, but not sure how to get my Calcium also. Doesn't Calcium need D3 to absorb? My MO suggests going to an Endo Dr. Anybody seeing an Endocrinologist? 

Dx 9/17/2013, IDC, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 10/17/2013 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 12/2/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Chemotherapy 12/25/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Chemotherapy 1/15/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Chemotherapy 2/10/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 3/31/2014 Breast Hormonal Therapy 5/22/2014
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Aug 31, 2014 07:51AM whatnow wrote:

There is so much conflicting information about vitamin D, and I'm FAR from an expert. I can only tell my own story.

When I got cancer, I did a lot of research. One of the things I noticed was that some were beginning to talk about low vitamin D levels being a concern.  I recalled how I'd been CRAVING sun the prior year, but never getting it (so much work, and single Mom).

Fast forward 7 years and I begin to have severe migraines with AURA (temporary cognitive loss, visual disturbances, numb mouth, etc.).  One of the things that was tested was my vitamin D.  It was 35, and labs tend to give a normal range of 30-100, so it was never mentioned (I've since heard that range is useful for bone health, but neurological (and other?) health MIGHT be more like 70-100).  I got worse and worse and finally closed my business of 20 years and have been unemployed.  No one could help my migraines (multiple neurologists, chiro, pcp). 

While at a chiro (who I think was not very "legit," though at least he did order a lot of blood tests), I found my vitamin D to have dropped to 15. Of note: my cardio CRP was over 6 (should ideally be under 1), which is a generic indication of inflammation somewhere in the body.  He started me on 10,000 IU of D3 daily.  I took the supplement he sold in his office (yeah, I know), then Nature's Bounty then Nature Made.  Four months later and I am at 70!  Vitamin D also supposedly fights inflammation, and my C Reactive Protein is now down to 1.7.  But what is most amazing is that my aura has completely disappeared.  I still have other issues, including headaches--but you cannot imagine what it is like to have that extreme problem gone. During a "spell," I could not see well, read, understand--I once didn't recognize my daughter's own name. 

And the change came very quickly.  I was having a visual aura 1-3 times per day!  Within perhaps 2-3 weeks of starting the meds, I'd nearly stopped having them at all.  Then I had one each day for two days in a row. Then another about 2-3 weeks later. And that's it.  None for probably two months now.  I am so thrilled!  I know that vitamin D is important, and there is conflicting information if it should be D2 or D3 (our body converts D2 to D3??).  And the dosage is important--when my pcp found out I was taking D by order of the chiro, she said "make sure it's a big dose."   And it was-10,000 IU per day.  Now that I'm "normal," she recommends 1,000-2,000...but I'm still taking 5,000 a day until I use all the pills I have...then we'll see. 

Mind you, I started Lipitor for high cholesterol right after the vitamin D3.  So there is some thought that these improvements could be due to that medication (which worked miraculously for my cholesterol too!).  But, whenever I look up either of these meds along with the word migraine or aura - the only thing I find is questions about whether they CAUSE migraines. 

Bottom line-I think vitamin D is something many of us are low on, and all of us need dearly for so many body functions.

Age 46 at dx. Initial finding 1.8 cm. MRI found a 2nd, smaller primary tumor in same breast the day before mastectomy ("close to, but not touching chest wall"). Stopped chemo after 1 treatment due to unease with risk:benefit ratio. Dx 4/1/2005, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+ Surgery 5/1/2005 Mastectomy: Right Chemotherapy 7/1/2005 AC + T (Taxol) Hormonal Therapy 1/1/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/1/2008 Aromasin (exemestane)
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Aug 31, 2014 09:29AM SophiaMarie wrote:

well my last test showed I dropped even further.  From 25 down to 21 - in spite of taking the 50,000 IUs 1x week - plus taking 4,000 IUs of a good liquid 2-3x week - and laying in the sun.  Soooo, my mo ordered a thyroid test which was normal, and now I have to go in for more labs.  One of the tests will be for cortisol.  Crazy that it dropped further with all I was doing!  He also is having me do the 50,000 2x week now.

Dx 7/2013, IDC, ER+/PR+, HER2- Surgery 8/4/2013 Lumpectomy: Right; Lymph node removal: Right, Sentinel Dx IDC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2-
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Aug 31, 2014 08:08PM Patti8861 wrote:

cpd418

I've tried melatonin and it does not help.  Realize I should be on can't sleep topic.  ;-)

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Sep 1, 2014 05:34AM Bren58 wrote:

The drops are really easy to take. Either add them to a smoothie like cp418, drop them on your tongue or the way my nutritionist suggested. I squeeze out the size drop I need on the back of my hand and then lick it off. Sounds weird I know, but that way you know what size drop you are getting ~ I usually do something about a 1/4" or so.

Faith is having the courage to let God have control. Dx 7/4/2000, DCIS, Stage 0, Grade 3 Surgery 8/27/2000 Lymph node removal: Right, Sentinel Surgery 8/27/2000 Mastectomy: Left, Right Surgery 12/4/2000 Reconstruction (left); Reconstruction (right) Surgery 12/1/2009 Reconstruction (left): Nipple reconstruction; Reconstruction (right): Nipple reconstruction Surgery 9/10/2012 Lymph node removal: Right Dx 9/11/2012, IDC, 1cm, Stage IIB, Grade 3, 1/29 nodes, ER+/PR+, HER2+ Targeted Therapy 11/29/2012 Herceptin (trastuzumab) Chemotherapy 11/29/2012 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 4/24/2013 Lymph node removal: Right, Underarm/Axillary Hormonal Therapy 7/24/2013 Arimidex (anastrozole) Hormonal Therapy 7/31/2014 Aromasin (exemestane)
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Sep 1, 2014 10:21AM inga6060 wrote:

To heartnsoul7, I was taking 10,000iu.  When I got levels checked, I was over 100.  Toxic levels.  So, less is more.  I like the biotics research 2,000iu per drop.  The other one is only 400iu.  O put the drop right ok my finger, and lick it off.  Simple.   I probably wouldn't take more than 4,000 a day.  Have your levles checked to know for sure.  Wish you the best.

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Sep 1, 2014 11:21AM - edited Apr 8, 2015 10:26AM by peacestrength

This Post was deleted by peacestrength.
2013, IDC Stage 3a
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Sep 2, 2014 12:23AM yoga_girl wrote:

Sleep Issues since BC

This works for me:

Ambien, 10mg (be sure you are in bed and ready for sleep)

 

Dx 4/7/2013, IDC, 2cm, Stage IB, Grade 3, 0/2 nodes, ER-/PR-, HER2- Surgery 9/2/2013 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 10/28/2013 3DCRT: Breast, Lymph nodes Hormonal Therapy 6/15/2014 Femara (letrozole)
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Sep 3, 2014 01:46PM keepthefaith wrote:

Got my Vit D level results back today....24.8, up from 17...UGH. Nurse is going to ask Dr what she wants to do to get them up. Taking 2000 IU's now. I guess I will have to ask her about the drops...?

Looks like I have a ways to go, but at least it has improved a bit. 

Dx 9/17/2013, IDC, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- Surgery 10/17/2013 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 12/2/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Chemotherapy 12/25/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Chemotherapy 1/15/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Chemotherapy 2/10/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 3/31/2014 Breast Hormonal Therapy 5/22/2014
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Sep 3, 2014 02:58PM SailingWind wrote:

Dear  Keep, check around 5.000 a day to start getting it up.  Research it. Doc recommend a lot more 

Dx 6/2014, IDC, 2cm, Stage IIA, Grade 2, 0/4 nodes, ER+/PR+, HER2- Surgery 6/24/2014 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 8/1/2014 3DCRT: Breast Radiation Therapy 8/1/2014 Breast Hormonal Therapy Femara (letrozole)
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Sep 3, 2014 07:25PM SophiaMarie wrote:

Peacestrength - yes, cortisol levels are connected with adrenals, and adrenal fatigue can lead to low vit D.  I've been looking into that, and I will be very surprised if my cortisol is normal.  My labs are on Fri - anxious to see what it all shows.

Dx 7/2013, IDC, ER+/PR+, HER2- Surgery 8/4/2013 Lumpectomy: Right; Lymph node removal: Right, Sentinel Dx IDC, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2-

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