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low vitamin D

I really was not sure under which topic to ask put this question.

I am now 45 years old, was in great shape and good health prior to diagnosis in June 2017. I have been finished with active treatment for stage 3 TNBC since November 2018.

I just recently had my first bone density scan, which showed osteopenia in hip and lumbar spine and osteoporosis in forearm.

Saw my oncologist again today. She is very, very concerned with my bone density - says despite all my treatment, I'm way too young to have the bone density results I have.

My vitamin D levels are very low. When first tested my level was super low at 10. After 16 weeks of 50,000 iu dosing, my level dropped to 9. This has my onc super concerned because it seems my body is just not absorbing this much needed vitamin.

She sent me to a GI specialist who diagnosed mild gastritis but said it's not concerning and didn't offer any solution. Gave me samples of Linzess for constipation, which didn't help constipation but gave me such unbearable cramps I couldn't use it (tried it at various dose levels).

She sent me to a new gyn who discovered an ovarian cyst (to be rechecked in a few months) and endometrial thickening (I'm post-menopausal with no period since June 2017). Gyn did endometrial biopsy, which was negative, and then hysteroscopy. Got the report this morning and all it said was no sign of cancer - which was annoying because I wasn't worried about cancer, but since they are the ones that were all alarmed about the thickened endometrium, I expected to hear a reason for the thickening.

Then she sent me to an endocrinologist. My left thyroid lobe is enlarged - endo gave no reason and offered no follow up for it. Right lobe has 2 nodules, one of which will be biopsied on March 3. Endo offered no ideas about my ever-decreasing vitamin D except to prescribe 100,000 iu per week for the next few weeks.

My oncologist was super annoyed that the specialists. While I was in her office, she fired off messages to all of them, asking the GI why he has not followed up on my delayed gastric emptying and constant feeling of fullness,

asking the endo why he is not following up on enlarged thyroid lobe and why he didn't give any thoughts as to reason for low vitamin D

and asking gyn for a reason for the endometrial thickening (as simply "no evidence of cancer" was not acceptable to her).

Anyway, all of this post-treatment feeling like garbage has me frustrated. I feel, and I think my oncologist agrees, that the low vitamin D is the cause of my feeling like garbage (fatigue, weakness, nausea, constant feeling of fullness, lack of appetite but zero weight loss, fluid retention/edema, increased thirst). I'm wondering if anyone else has suffered from low vitamin D and an inability to increase it despite super high dose supplementation. What was causing it and how, if at all, did you fix it?

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Comments

  • trishyla
    trishyla Member Posts: 698
    edited February 2020

    Yes, Pesky, I had extremely low vitamin D levels after treatment. An endocrinologist prescribed massive doses of D, which I dutifully took for a couple of months. It messed up my kidney function while doing absolutely nothing to raise my vitamin D levels.

    What I finally did was to get a d3/k2 liquid supplement for sublingual use. I learned (from this site) that vitamin d won't be absorbed by your bones without k2. It goes straight to your kidneys. Hence the damage.

    I also got a much sunlight as I could. I live in California, so that's not too difficult. I laid in my backyard in a bikini (I'm 61) so I could expose my torso.. It worked. Within 8 weeks my levels started rising. I'm now in normal range

    Don't know if any of this applies to you. Just my experience.

    Trish.


  • pesky904
    pesky904 Member Posts: 263
    edited February 2020

    Thanks! I put this info on k2 on my list to ask my oncologist about (not sure when I will see her next)

  • flashlight
    flashlight Member Posts: 311
    edited February 2020

    pesky904, You have been through so much. My brother had a super low Vitamin D level and it was from hypocalcemia. They did a 24 hour urine. They checked him for colon and prostate cancer. Both negative. Also told him to eat more fish and eggs. I thought mine was low at 30! I started taking K2 with D3, I'm hoping it brings up my level. My doctor recommends Miralax or the generic for constipation, even worked for my grandson. You take it twice a day for 3-days then daily or every other day. Also magnesium supplement helps. Did you have a CT scan for your thyroid? I have many nodules and sometimes my thyroid is enlarged. I have routine ultrasounds. Are you on Tamoxifen? That would explain the thickened lining and cyst.

  • pesky904
    pesky904 Member Posts: 263
    edited February 2020

    No Tamoxifen. I’m triple negative.

    My calcium levels are low normal. I’ve just started 100,000 iu vitamin D weekly, not sure when I’ll be tested again.

    I eat plenty of fiber andGI has had me try Miralax, Citrucel and multiple other things. Absolutely anything I take for constipation causes excruciating cramps and produces a small bowel movement at best.

    I really think all the treatment has damaged my entire digestive system.

  • murfy
    murfy Member Posts: 254
    edited February 2020

    Pesky, when you next see your doc ask about a PTH blood test (parathyroid hormone), although your endocrinologist must have considered doing this and ruled it out. Many, most of your symptoms sound like hyperparathyroidism and your biopsy will hopefully help with diagnosis. Blood test is simpler though.

    Good luck!

  • pesky904
    pesky904 Member Posts: 263
    edited February 2020

    Nope, one of the reasons my oncologist was so annoyed is because the endocrinologist didn’t do any blood work, not even a basic thyroid panel.

    I swear, as soon as a specialist hears that you’ve had cancer, they ignore common sense and make assumptions that everything is a result of the cancer treatment.

  • ceanna
    ceanna Member Posts: 3,120
    edited February 2020

    Pesky, I don't know if you looked at other threads on BCO, but there are discussions that might interest you on Vit D and K2, and on thyroid and parathyroid issues. Many of us have posted information over the years and, just to summarize, Vit D needs to be VitD3, not the VitD2 doctor's often prescribe for unknown reasons. Most of us can't absorb D2 no matter how much is prescribed. It also could depend on the carrier oil in the capsule--I find I don't absorb with soybean oil but do with a flaxseed oil base. Natural Vit D from sunshine is not the enemy and the best way for your body to get Vit D.

    Endocrinologist's can vary. Make sure you find one that deals with thyroid and specializes in parathyroid and not one who deals mainly with diabetes. I have found endo's have specialties and do not know much about each other's area.

    Please find someone to check those thyroid and parathyroid levels. I had to be persistent for years but finally have the problem solved and good vitamin D levels--I had thyroid and parathyroid problems. I hope my future DEXA scan shows an improvement on osteopenia and not progression. Please send me a PM if you have any specific questions. All the best, Ceanna

    Vit D and K2 https://community.breastcancer.org/forum/120/topics/838938

    Thyroids https://community.breastcancer.org/forum/142/topics/839284


  • alicebastable
    alicebastable Member Posts: 1,934
    edited February 2020

    I just saw a nephrologist recently because I only have one kidney (had kidney cancer and nephrectomy in 2018) and I wanted to touch base with an expert. She carefully went over all my meds and supplements, INCLUDING 2000 IUs of vitamin D. She said nothing about absorption problems without K2, but she did tell me to check with her if I start any new meds or supplements. I trust her 100% more than any forum member throwing out unverified information.

  • spookiesmom
    spookiesmom Member Posts: 8,167
    edited February 2020

    Many years ago, before Bc, I asked a pain mgmt dr to check my D levels. Came back at 17. He started me on 5000 D3, daily. What a difference!! I’m in Florida so there is plenty of sunshine, D3 must be supplemented. Also, if you are on Coumadin or other blood thinners, vitK can mess up your PT/INR.

  • gb2115
    gb2115 Member Posts: 553
    edited February 2020

    This is entirely anecdotal, but at work our patients 25 D levels come up much much better on D3 than the loading D2 dose. I have noticed this over the years.


  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited February 2020

    D3 is the kind our bodies are supposed to make, not D2. So why not use that? Also no harm in eating K2 foods like grass-fed cheese (especially Gouda). Ask the doctor about K2 supplements and I bet he/she will say it is fine. I used 5000 iu D3 per day until my vitamin D got to normal range, then maintained with 2000 iu. These amounts were advised by my onc and onc nurse. Split dose, with food.Extra sun only got me skin damage. Some people just don't make enough vitamin D.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3265100/

    Combination of micronutrients for bone study.

  • flashlight
    flashlight Member Posts: 311
    edited February 2020

    pesky904, Did the doctor review your recent CMP labs before increasing your Vit D? He would have to monitor your kidney function while on that dose. Do you have a primary doctor? I have found my primary to be able to be my advocate and reviewing everything that I have done, including by the MO. She would have never agreed for me to have a biopsy without labs/scans. She would want to rule out other possible issues. Also are you taking high amounts of calcium? That is very constipating. High Fiber diet is recommended for someone who has chronic loose stools not someone who has chronic constipation. Sometimes that isn't good for them as well. You might be making your problem worse as a friend with IBS has told me. My doctor didn't know what K2 was and had to look it up before giving me the okay to take it.

  • edj3
    edj3 Member Posts: 1,579
    edited February 2020

    This post has made me realize I'm so very fortunate that the D3 has worked well for me.

    Since I was dx'd with melanoma two and a half years ago, sunshine is a big huge no-no for me. Even though I run a lot, I run in the very early morning when it's still dark even in summer.

    But I take a 5000 IU caplet once a day, and my vitamin D is at 70. When I didn't take it, my scores were in the 20s (and that's before the melanoma so I was out in the sun).

  • minustwo
    minustwo Member Posts: 13,067
    edited February 2020

    Pesky: Just bumped the constipation thread for you. There are some REALLY great ideas here.

    https://community.breastcancer.org/forum/6/topics/...

    Years ago my ob/gyn said the calcium that was easiest on your gut was Citracal with Vit D. For a long time I took 4 a day. Now I'm back to the standard dose of 2 caplets = 630mg calcium + 500 Vit D, and assorted other minerals. (and yes, D-3) I also take 2000 IU Vit D-3 every day, which has been reduced from an extra 5000 I was taking.

    Trish - I live in Texas & we have lots of sunlight too. But since I spent my youth lying in the sun in California, I deal with 15-20 pre-cancerous skin lesions every 6 months, biopsies at least once a year, and have had 7 MOHS surgeries for basal cell cancer. As much as I love the sun, it's a mixed blessing. And if you use the required sun screen, I think you've just lost the benefits.

  • pesky904
    pesky904 Member Posts: 263
    edited February 2020

    Thanks for all this info, everyone!

    flashlight, the endo did not do any blood work and I don't even know if he looked at my last blood work, which was done back in mid-January. My levels have all been slightly off for the last 2 years, so I don't know what's even normal for me anymore. What specifically should I be looking at in regards to kidney function?

    MinusTwo, thanks for bumping that other thread, I will read through it later today!


  • flashlight
    flashlight Member Posts: 311
    edited February 2020

    https://www.parathyroid.com/secondary-hyperparathyroidism.htm This is a good article about low Vit D and low calcium and how it affects your kidneys. Maybe he is trying to rule this out? Why didn't he order other test or labs? I hope you are able to find answers soon. Best wishes.

  • pesky904
    pesky904 Member Posts: 263
    edited February 2020

    Thanks, that was a really informative parathyroid article. My oncologist was really angry that the endocrinologist didn't even mention parathyroid, as she was convinced when she referred me to him that that might be an issue.

    My vitamin D is still less than 10. My calcium low, however, it is just shy of the lower limit of normal (8.4 - the "normal" range is 8.5-10.1).

    It seems that they don't show any urgency in solving issues after active cancer treatment, but to me, this is a major quality of life issue.

    For those of you who have experienced extremely low vitamin D (from secondary parathyroid or any other causes), did you experience inability to lose weight, feeling full very quickly, lots of weight gain in the midsection? If so, how did you resolve this?

    I feel like I am just gaining and gaining belly fat and now even back fat. I go to the gym 6 days a week and eat very healthy and never eat more than 1500 calories a day, usually less (I am 5'3" and now up to 141 pounds, which for me is quite large as I'm small framed and never weighed more than 110 pounds). NONE of my pants fit and I can't afford a whole new wardrobe. Also, it's not "solid" weight gain, which I might be less upset about. I have tons of fluid retention and loose, floppy skin. I was athletic until cancer and this is just not my body anymore.

  • moth
    moth Member Posts: 3,293
    edited February 2020

    I think you need a new endocrinologist. They do specialize to an extent and many have heavy focus on diabetes or fertility etc and are not as knowledgeable about other things. After finishing bc treatment I got an osteoporosis dx well and was sent to an endo who specializes in treating breast cancer patients.

    Some of the symptoms you're describing remind of adrenal issues. Are you on steroids as part of your treatment? I'd want to rule out Cushings disease.

  • trishyla
    trishyla Member Posts: 698
    edited February 2020

    I've replied to a couple of your threads, Pesky, because what you are describing is identical to what I've been going through since ending active treatment.

    I've been to three endocrinologists, one nephrologist, two primary care doctors, one oncologolical surgeon and my MO trying to figure out what's causing all these issues. None of them seemed to believe me when I told them I was walking/jogging 30+ miles per week, working out and staying under 1300 calories a day, and managed to lose one freaking pound in a whole year. I think they assumed I was mistaken on my calories or exercise. I wasn't.

    All I can tell you is that I finally feel like I've turned the corner in the past few months. As I said, I stopped the massive Vitamin D because it damaged my kidneys. It turned me into a hyperexcretor of calcium, which is what causes kidney stones. There is a study, either Dutch or Danish that documented the damage that massive doses of vitamin D2 cause to kidneys. I showed it to the nephrologist, who was surprised, as he had not seen the study before.

    With my oncologist's blessing, I began taking a sublingual combination D3/K2. I also started laying out in the sun in a bikini (weird because I'm 61) to get sunlight on my torso and legs for better absorption. I use a heavy sunscreen on my face and hands.

    Not only did my digestive system improve (the repopulating my gut also helped with that) but my Vitamin D levels rose from about 12 to over 40, and my osteoporosis actually reversed slightly. Win/win/win.

    As for the weight loss, nothing helped. I was at the highest weight of my life. Depressing as hell. And then I tried intermittent fasting. First thing that's worked in a long time. I eat only between 10am and 6pm and I fast two days a week. I don't count calories, but I do watch what I eat. I have been losing 1.5 to 2 pounds per week for the last four weeks. Yay!

    As Alice said above, we should listen to our doctors. Our Google searches do not equal their medical degrees. But sometimes they have no clue what's going on with us, especially after all the treatments we go through. It's up to us to be our own advocates.

    Sorry for the super long post. 😃

    Hope everything works out for you. Good luck.

    Trish


  • pesky904
    pesky904 Member Posts: 263
    edited February 2020

    Thanks for the replies. I'm happy at least that my oncologist seems as frustrated with the endocrinologist as I am and she said she would send me to someone else. But in the meantime, I don't see her again until June. I have the gastroenterologist again this coming Monday. He is friends with my oncologist and in contact with her, so hopefully he'll be of more help this time, because last time he just handed me some samples of Trulance and Linzess and sent me on my way.

    But now my oncologist has called him on the phone and told him she fully believes there is something wrong and we need to figure it out. So at least they are working together now.

    I am going to go to that appointment on Monday and have my stupid thyroid biopsy on Tuesday, and then I'll contact my oncologist about finding another endocrinologist. Because even if these thyroid nodules turn out to be malignant (very, VERY slim chance and I'm not expecting that to be the case), that still wouldn't explain the GI symptoms and weight gain. So I still need a good endo to help me with the real problem and not focus on just the stupid thyroid nodules.

    The only time my stomach doesn't feel uncomfortably full is when I go a LONG time (like at least a day) without eating. But then I feel weak and tired and I get dizzy at the gym if I haven't eaten in a long time.

    When I do eat, I eat plenty of foods with calcium and vitamin D. I've been craving grits lately and I thought maybe it was because they're bland, but that was before I found out I was low iron, so obviously my body was craving the iron. I did intermittent fasting for 6 months and lost zero weight. I could try it again, but it's frustrating. I basically do intermittent fasting by default because I wait so long in between eating because the food I eat just seems to sit there in my stomach and I feel full all the time. When I finally do eat again, it feels like piling food on top of more food in my stomach because I haven't digested the last thing I ate, even if it was like 10-15 hours ago. I take probiotics and eat healthy. I constantly feel like I've just eaten a giant thanksgiving dinner, like my stomach is so full it's about to burst, no matter how little I eat or how long I go between meals. Something is very wrong with my digestive tract.


  • ShetlandPony
    ShetlandPony Member Posts: 3,063
    edited February 2020

    Sorry to suggest it, but the unusual fullness makes me ask, have they ruled out ovarian cancer?

  • spookiesmom
    spookiesmom Member Posts: 8,167
    edited February 2020

    Have they ruled out gastroparesis? Usually found in diabetics.

  • pesky904
    pesky904 Member Posts: 263
    edited February 2020

    ovarian cancer: no but I had a lesion arising from the right ovary on last ct/ultrasound that they are going to reimage in May.

    I just had a hysteroscopy/D&C. The results of that just say “no signs of cancer.” The reason that was done was a postmenopausal thickened endometrium.

    Mild gastritis found during upper endoscopy, but GI didn’t say anything or prescribe anything for it. I had a gastric emptying study done in summer of 2018 that showed mild delay and they tried me on a med (began with an R...Reglan maybe?) I took it for months and it didn’t help.

  • pesky904
    pesky904 Member Posts: 263
    edited March 2020

    Update: Still taking the 100,000 vitamin D a week. Still feel like garbage.

    New suddenly this week: I am even more tired than normal (didn't think that was even possible!) and literally falling dead asleep by like 7:00 p.m.

    This week I had a fecal calprotectin test, came back at 37 (normal range 16-50) so no inflammation going on, rules out celiac, IBD, etcetera.

    Thyroid biopsy came back benign, as expected. Although they did see a new nodule, this time on the left side, when they were biopsying one of the ones on the right side. Left side is enlarged, but TSH has been normal. I'm not going to push for any follow up on this. It's the lowest thing on my priority list. If thyroid is functioning properly, I don't care if there's nodules right now. They can be dealt with later.

    GI is making me do a cleanse as if I were prepping for a colonoscopy, even though he's not suggesting a colonoscopy. He just wants me to do the cleanse to see what happens with my symptoms after "clearing everything out" as it were, as it seems my bowels are just not emptying properly.

    I am currently living in a relative's basement in close quarters and don't even have my own bathroom, so I have to wait to do the cleanse until my family goes away on vacation in May. I explained my living situation to the GI and he set the follow up appointment for end of May to accommodate this issue.

  • ceanna
    ceanna Member Posts: 3,120
    edited March 2020

    Pesky, Thanks for the update, but sorry you are feeling worse. May I ask if the 100,000 Vit. D is D2 or D3? I can't imagine taking that much D3, and D2 isn't absorbable for many and, therefore, could be having a toxic effect in your body.

    Be persistent with the doctors. You might want to ask if any other medications you take are interacting with the Vit. D.

    All the best. Ceanna

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
    edited March 2020

    pesky - Since you're having trouble absorbing nutrients through your digestive tract, have you tried sublingual vitamins? I've used vitamin D3 drops (in coconut oil) and vitamin B12 tablets. I don't know what others are available.

  • alicebastable
    alicebastable Member Posts: 1,934
    edited March 2020

    Spookiesmom

    Gastroparesis is rare, but here's the Mayo link.

    https://www.mayoclinic.org/diseases-conditions/gas...



  • spookiesmom
    spookiesmom Member Posts: 8,167
    edited March 2020

    Yes it can be. More prevalent in diabetics, especially T1 with nerve damage. That’s why diabetes scares me more than cancer, the damage it can cause. I’m T2 and work really hard to keep my a1c in normal range.

  • pesky904
    pesky904 Member Posts: 263
    edited March 2020

    It’s 50,000 iu D2 twice weekly.

    I believe gastroparesis was ruled out with upper endoscopy in November. inflammatory process in the colon has been ruled out with normal fecal calprotection test this week.
    C-reactive protein was also normal in October.

  • santabarbarian
    santabarbarian Member Posts: 2,310
    edited March 2020

    pesky D3 is the recommended D, most of the time -- maybe you can swap it for D-3? You could do 10,000 iu per day and get the same weekly....?