Severe vitamin D deficiency

ohsix23 · January 2017

Hi everyone. I met my oncology BS finally last week. Its been almost 8 weeks since all the masses were found via ultrasound. The masses have been growing, I am a diagnostic medical sonographer so I have looked again at them a couple times over the past 8 weeks. The surgery to remove all my ducts for biopsy isn't for another couple weeks. Yesterday though I had labs done and my vitamin D is only 9 ng/ml! That's dangerously low and I know low vit D is linked to BC as well as aggressive BC. Has anyone else had levels this low and then learned they have BC?

Thanks.

DiabeticCancerChick · January 2017

Yup. Mine was 7.7. I was diagnosed with breast cancer and osteopenia. My breast cancer is not aggressive, though, it's quite slow growing. So far. My vitamin D levels have been normal ever since, though.

Variable · January 2017

Yes, mine had been very low for a while before my diagnosis, and that link had never crossed my GPs mind until afterward. Perhaps a call to you BS to review your labs and the changing sonogram results would ease your mind and get you a sooner surgery date if warranted.

muska · January 2017

Hi oh623, I don't see why you couldn't start taking VitD immediately and before any other treatment begins. I would talk to your MO or GP if you don't have an MO yet, right away and get some advice on the dosage.

Just to mention, there is some evidence that BC patients often have lower VitD levels but I don't think there is any proven evidence of causal relationship. So many MOs monitor their patients VitD levels and prefer keep them higher than averages. My VitD was 30 at diagnosis, however my MO wanted it to be higher, so she put me on 2,000 D3 units daily from the start and later raised it to 4,000.

Good luck with your treatments!

HappyHammer · January 2017

OhSIx, yes! My VitD levels were low off and on for several years before dx. My PCP would give me a prescription and then I would take 3000iu's daily afterward. The next round of bloodwork would show low vitD and we would do it again. Now, I take 10,000 nits of D3/ day and both MO and PCP say to keep doing what I'm doing because the levels are finally good and have stayed that way for a year. Hugs to you!

labelle · January 2017

Mine was about 12/15 ng/ml about a year and a half prior to my BC diagnosis. My doctor tested my vitamin D only after my dexa scan showed some bone loss. She started me on 50,000 i.u. once a week to get my levels up. Then I started taking 5000 i.u. daily and continue to do so. My levels are in the 70s these days and were when I was diagnosed. However, my doctors have told me my BC tumor had probably been growing for about 8 years before it was big enough to be seen on a mammogram. Of course, no one knows how long my vitamin D levels were low because they were not routinely checked prior to that.

I did a lot of research about possible causes of BC when I was first diagnosed and I do believe there is a connection between BC and low vitamin D levels, although I don't recall reading anything about vitamin D levels and especially aggressive BC. My own was a very slow growing low grade BC. In any case, I believe everyone should be getting their vitamin D levels checked annually, just like we check for cholesterol levels. I've definitely stressed this to my own daughters.

Tinyfrog · January 2017

Recently, I had been researching this myself, as I have had symptoms of chronic fatigue for 10 years, probably just before my cancer started growing. They didn't test for Vit D deficiency until about 2 years ago, and it was low, and I've been on 50,000 IU weekly since. I also took the 23andme genetic test, and I had a VDR taq defect, so I probably wasn't absorbing the already low level of VIt D I had. Also, I was compensating for the fatigue by drinking a lot of coffee, which also blocks the Vit D receptors, again - not absorbing Vit D. I am newly diagnosed, and just met with the oncologist last Wed, and told her that my 23andme test also said I may be a CYP2D6 slow metabolizer, which is the enzyme that metabolizes Tamoxifen, which I am slated to be on after chemo and radiation since I'm ER+ 96%. Thankfully, I know this as I would have been on Tamoxifen and it wouldn't have been working. Luckily, the new cancer center just hired a specialist, who deals exactly with this kind of testing. So, they will retest to see what drugs I can take.

Tinyfrog · January 2017

I can't believe you've waited 8 weeks already, and still have more time to wait. They can really do this to you? That seems barbaric! I had what they thought was a giant fibroadenoma, and I was offered the next available appointment, which was the following week. But that was the election, and then it was Thanksgiving, so I did it 6 weeks later in mid-Dec. But it ended up being a 9cm phyllodes with at least 8 different site of cancer (multifocal). But because of the holidays, I had to wait 3 weeks for the next available surgery date to do the node biopsy. The oncologist says I'm good as long as we start the chemo within 8 weeks of removing the tumor. I really hope you can get an earlier appointment. Perhaps call and see if a slot opened up (which is how I got 1 week earlier for the second surgery).

ohsix23 · January 2017

Thanks ladies for all the replies! I think part of why I've had to wait for my biopsy so long is my ultrasound was done Dec 1st. I think with the holidays it was just a longer wait to meet the BS. Everything was urgently rushed the moment I called my gynecologist's office explaining that my nipple suddenly started retracting with arm movements. I had to "come in today!!" Then had to have a diagnostic mammo and US "tomorrow!!" Then the radiologist that read my mammo and US told me while I was still on the US table that I needed a surgical excisional biopsy "as soon as possible, in fact I'll call them right now to tell them you need it, make sure you make an appointment right away!!" But then I had to chase everyone to get the referral. Then I had to wait for the scheduler to call me. Then it was a 7 week wait to even get the consult appointment with the surgeon. Now I need a pre op physical and surgery isn't for another 2+ weeks. That's what's crazy...the immediate urgency that turned into a ridiculously long wait. But it is what it is. The low vitamin D was found incidentally because I'm having tons of muscle spasms and I can't seem to shake a respiratory tract infection (that has been ongoing since Thanksgiving and included a bout of pneumonia and a severe middle ear infection too). I have worked in a pediatric hospital as a clinical caregiver for 17 years. My immune system was top notch. I never get sick anymore so this was highly unusual. My PCP was referring me to a neurologist and ran a few labs as a precursor. But the extremely low vit D explains my impaired immune system and the muscle spasms. I just hope it hasn't encouraged the development of BC as well. I will find out in a couple weeks I guess. :0/

Tinyfrog · January 2017

Do you take magenesium, too? I like Jigsaw Health, magnesium with SRT. You'll need that and a stool softener if you're on percocet after the surgery.

ohsix23 · January 2017

Tinyfrog, I don't take any supplements at this time. My magnesium, sodium, potassium, choride and kidney markers were all also run and were all normal. I eat mostly a paleo diet, though do have occasional foods outside of that spectrum. My calcium level was fine so the deficiency is not due to a parathyroid tumor. Seems like it will be an easy fix to get my levels back up, though it will take a few months. I expect to hear from my PCP's office soon as to what supplement and at what dose they want to start me on. I was just curious about how many women diagnosed with BC had severe vitD deficiency concurrently. Sorry to hear about your diagnosis ( I will pray for you that your treatments go smoothly and that you are cancer free soon )

Tinyfrog · January 2017

Yes, my Vit D levels were retested and up to a good level in 8 weeks. I was told that getting my levels up would make such a huge difference, but unfortunately, it didn't. I hope it does for you. I also had severe muscle spasms, and what helped with that was cutting way down on the coffee and all stimulants, and taking the magnesium, which is why I brought it up. My immune system was also compromised, and I think taking 1000 mg of Lysine (Bluebonnet) - an anti-viral really helped with that, as well as possibly some thyroid support. I also had all of those tests done that you had you listed, and they all came back normal as well. But when you still feel exhausted, and the tests are all normal, and you've taken the Vit D, you have to keep searching for what will help. I finally found that one of my old sorority sisters has a PHD in nutritional biochemistry, so these are some of her recommendations that worked for me. Although of course, you are a completely different person, so perhaps in a much different situation.

ohsix23 · January 2017

Tinyfrog, I really appreciate your suggestions, thanks! I'm sorry to hear that improving your vitD levels to normal didn't help though regarding your BC. Must be really frustrating that your pathology report wasn't more detailed. I would have a really difficult time dealing with that. Especially since a path report should be extremely detailed. My ultrasound report was like that too. Basically said "intraductal masses directly beneath the nipple and in the immediate subareolar region. "Masses", not how many, no description. Just highly suspicous masses. And the discussion between the radiologist and the ultrasound tech was muddy as well. Neither one could tell if the masses had extended beyond the ductal walls, neither could tell if this mass was part of that mass or if it was a different one all together. The only thing I caught was indeterminate number mumbled by the radiologist. Ugh, huh?

My PCP called this morning. They are putting me on an RX dose of vit D once a week for 12 weeks, then are retesting (standard routine, I was expecting the call and that exact course of action, lol)

My BS's scheduler also called me this morning. Surgery is Tuesday, Jan 31. So I have another 2 weeks to wait, plus another 3-5 business days for the pathology results to come back.

exercise_guru · January 2017

I also have low vitamin D levels something I am trying is to sit by a natural full spectrum light throughout the day. The research for indoor lighting improving vitamin Dis not on my side with this but I figure it can not hurt to try. I am hoping to start walking or atleast getting some more natural sunlight as soon as the temperatures improve. I am hoping this will improve my D levels along with the supplements I am taking. My MO told me to disregard the calcium supplment vitamin D and focus on it individually throughout the day.

ohsix23 · January 2017

Yeah exercise_guru. I live in Michigan. It was 30 degrees yesterday, but I put on a short sleeve tee-shirt and sat out in the sun anyways for 15 minutes. I also volunteer at a horse rescue farm so I made sure I had outdoor grain-ing and hay-ing duties because it was sunny yesterday. Unfortunately, I just don't have the strength I typically have lately and throwing hay for 50 horses kicks my butt. If the horses were more polite and patiently waited instead of charging me, and the ground wasn't treacherous, full of ice/snow, and irregular on the way to the hay feeders in the middle of the paddocks it wouldn't be so physically taxing, lol. Normally I relish the exercise and of course I adore the horses, but lately I just poop out way before I'm done. lol

Severe vitamin D deficiency

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