help with vit D levels

I had my cortisol levels tested back a few years ago when i was having the night waking panic attacks (those are hell)...from the effects of the Zoloft I tried taking (story posted in the bottle o tamoxifen thread)... My dr ordered the urine test. I forget now but think I put all urine in a 24 hour period into a container and they tested levels that way. It was normal. I do however know that my levels had to be elevated or out of whack because of the crazy adrenaline rushes I was having almost nightly for years, heart racing, pounding, sweating, waking in the middle of the nigth with that is no fun. Thank goodness I've overcome them. But, I wonder, do you get the pounding, racing heart with a hot flash from Tamox?

eastcoastgirl, thank you for remembering that!  I have permanent retina damage, they can't say FOR SURE, but believe it's due to tamoxifen.  I also have a mole that just cropped up in past 2 years (before that, no mole), so we'll continue to monitore that, for now, just protection (RayBan prescription lenses) for the retinas.  THANK you for remembering~!

My heart is always racing, short-of-breath, not sure if it's from the tamoxifen, or the menopause/weight gain.  Have you had your thyroid checked as well?  (Being hypothyroid as I am, that also plays into the symptoms).   I cannot say I've had adrenaline rushes though.

~juli

eastcoastgirl:  I also have the highest UV protection in my prescription rayban lenses, and I also had them mirror-coated (to reduce the glare as much as possible).  Sounds like you have good lenses and good protection.  When thyroid is checked, one checks for:  Free T3, T4-thyrox, TSH (thyroid stimulating hormone) and Free T4, see how those levels are.  "Normal" is as subjective as the vitamin d levels!  TSH levels that are in the normal range, usually are LOW (same with vitamin d).  I think optimum (if I recall) is 3.2-3.5.  Mine is still 'low normal' with levothyroxine (thyroid hormone medication) with dose of 50mcg (very low dose).

Remember the side effect with the retinas and tamoxifen is a VERY RARE side effect.  And, yes, we sign the paperwork when we go into treatments, but with ANY medication, there are 100's of side effects that they have to list, so there's no way you'd refuse treatment based on what is listed as a s/e...at least I would not.  Thanks again for your concern, and all my best to you.  ~juli

I had a vit D level done a couple of months ago. It was done with my regular tests before chemo. My level was 8, 50 is okay I am told. I have taken the 50,000 IU once a week for 6 weeks and am nowon 1000mg a day.    I was inside almost totally for about four years before I got BC. Then inside since then, 6 months now.  

What does low D of 8 mean? Anyone?  I am 65 years old. 

Thanks Ginger

Ginger, 8 is extremely deficient.  But one needs to know if you're talking about D2 or D3.  With breast cancer, we really need our D3 levels up there, past 50 if possible.  The D2-50,000ius weekly did not help me at all.  1,000ius of D3 also did not help me, I'm now on 5,000ius of D3 daily and get retested next month.  It's VERY slow to raise one's levels.  Good luck to you.

Kira:  I feel absolutely no different on the 50mcg of levothyroxine than I did on 12mcg.  My level is still on the low side, so after retesting next month, maybe we'll raise that again.  It's a low dose, so one can go higher.  I'm glad you feel better on your dose, but low normal is probably not good.  Yes, one goes with the 'known' rather than the unknown, so I'd never change being on the tamoxifen, now with the aromasin and tamox effects wreaking havoc, we really have NO clue what's going on.  UGHHHH...sorry!  Don't mean to be a downer, it's just how I feel right now.

~juli

Thank you kindly Kira.  Wow, you have been on that dose for a long time, I guess one would not know how to feel after that time, just keep testing?  You said you are also 'low normal', do you still test that way?  Wonder if a bit of increased dose would 'help' ?   I think for me, if mine is still 'low normal', I'm going to ask for a higher dose, maybe it'll help with some endocrine symptoms.

Thank you again, it's good to vent without feeling horrible doing so!   ~juli

Kira:  Here my hot flashes have subsided (not a good thing, as my period started 4 years after chemopaused), so being cold feels GOOD actually~~~;)   I am a candidate for Femara/Boniva as I have low bone density, but docs are holding off til next test (Aug. 2011), see if it's much worse, I'm not in osteopenia yet, are you, or osteoporosis?   With the s/e's of the bone drugs, we really want to wait with everything going on right now.  If I could take calcium I would...but cannot (parathyroid).  Sure, it'd be good to talk to your doc, especially if you test low normal still.

Yeah, I am alone, so venting is not something I do often.  My BF is a truck driver, so I hardly see him, and don't wish to burden my Mom or kids on the phone.  Though to her credit, my daughter 'felt' today in my email that I was 'down', and wasn't surprised.  She calls me her 'hero'...see why I don't complain??   LOL...thanks for listening.  ~juli

I started taking 5,000 IUs of D3 back in April after I finished rads.  My level was checked in September and it was 36 ng/ml.  I have continued on the D3 and as of Dec. 1st my level was 57 ng/ml.  I'm getting good results from the 5,000 IUs of D3 and haven't noticed any side effects from it.  My doctor will continue to monitor my level every couple of months.  I told her I wanted to get to 80 ng/ml.  At least I'm headed in the right direction for a change.  I'm sorry for you ladies that are struggling with this.  I usually have a lot of side effects to meds like JO and Juli, but fortunately this one seems to agree with me.

Thank you, Juli. My Rx is for 1000 IU tab a day is for cholecalcalciferol  I don't know if that is for D2 or D3. I asked for the D test because I knew I had been inside for so long and I read somewhere that D was implicated in breast cancer. I don't actually know anything beyond this.

Ginger

Ginger, I believe that would be the D3 along with calcium.  Believe me, we all thought we knew what was up with vitamin d, we are all clueless, lol!   ~juli   *Good Luck with it all*

I felt really tired all the time and put it off to an SE of Arimidex.  My DH met a doctor who is a mutual friend and told her how tired I was and that my nails were splitting and my voice was gravelly.  The doctor said that Arimidex suppresses the thyroid and I should have a full panel done.

I requested a full panel and when the results came back my TSH was completely normal but my Free T4 was very low.  The doctor said that was very unusual.  When I asked him how often he tested Free T4 when the TSH was normal, he said that it wasn't done.  I then said, how do you know that this isn't very common among women complaining of fatigue? 

I started taking a multi-vitamin that contains iodine and taking iodine drops and my Free T4 is within normal range.  I no longer have that overwhelming tiredness all the time.  I suggest that anyone with continual fatigue have a full thyroid panel done.

JO:  I never felt like crying or had moodiness with PMS or with these past 4+ years of menopause.  It's just right now with all this going on (I won't go into it all)...but thank you.  Since I take enough medications, I don't want to take anything for this temporary feeling.  It'll go away.  Yes, the Free T4 is important with thyroid testing.  It compiles a full picture with the TSH as well. 

JO:  You've certaily gone thru enough, and menopause 3x??  I wouldn't wish that on anyone, so sorry you had to go thru it again and again.  Ugh!   Hope that your vitamin d levels are improving, and know that it's difficult for you as well.   My BEST to you and hope you have good plans for New Years?  BF works, and we are not partiers anyway...:)    ~juli

The multi-vitamin is called INNATE Women's One Daily.  Each pill contains 65% of the recommended daily requirement of iodine.  I also take something called Liqui-Kelp.  I take one drop of that per day.  Together I get about  90% of the recommended iodine.  The rest would come from my diet.  I got both the vitamin and the liquid kelp at my local health food store.

Here is a link that explains the tests for thyroid and what they mean.  Just ask your doctor for a complete thyroid panel.

http://www.thyroid.org/patients/patient_brochures/hypothyroidism.html

Here are the test ranges.  http://thyroid.about.com/cs/testsforthyroid/ht/interpretresult.htm

I have a normal TSH and a low normal Free T4.  Supplemental iodine brought my Free T4 to normal range.  There was nothing wrong with my thyroid gland, I just was not getting enough iodine in my diet.  I don't use salt (where we get most of our dietary iodine) and I drink bottled water so I don't get any from my drinking water.  I did not need prescription medication.  A supplement slightly lower than the RDA level did the trick for me.  I have more energy, my nails have stopped splitting and my hair has stopped falling out. 

I wish I had a complete test years ago, perhaps I wouldn't have lost so much hair.  Part of my hair loss was also do to low Vitamin D3 which I have also corrected.  I get both my Vitamin D and my thyroid tested regularly to make sure I am not getting too much of either.

HAPPY NEW YEAR everyone 

Vit D3 suppplements make anyone else sleepy?  I re-ordered the wrong ones (2000 IU in gel cap form which was soy) so was out of Vit D3 for about a week while they were being exchanged.  I found it hard to fall asleep at night and now that I'm back on them I get sleepy.  So now I'm only taking them 1/2 in the evening and 1/2 before bed.  That also means taking my Calcium/Magnesium at night as well and I'm sleeping like a baby at night (a good thing).  Just never really noticed it before.

Hi all, just wanted to report back with my levels. To recap, my level when tested was 17. I beleive I had that done on the 27th Sept. I was re-tested on Dec 28th. So in 3 months time my level went from 17 to 37.5.

I took 50,000IU D2 once a week for 3 weeks and then switched to 5,000IU D3 daily. I also took an extra 2,500IUD3 about once or twice a week. So it's coming up pretty well I think. My Onco said to continue at the 5,000 daily because we really want it up at around the 70 level. So she will retest again in several months and then at that point maybe taper back to 2,000 a day.

Now I'm anemic. Ha, always something. I was fine in Sept when tested but not now. She asked if I'd changed my diet. Um yes, I'm a freaked out cancer patient that went all health. Really though, I have always been mostly healthy eater and concsious of that. I did change a bit and got more strict since DX though. I cut out red meat entirely (iron!) and dairy also. I do eat chicken and some fish occaisonally. I also had been eating lots of mixed green/vegi salads and juicing greens but in the last month or so had gotten so busy (and tired of doing it all!)  that I was slacking on those things and not really eating as much as I should still trying to keep with the "healthy" part. No red meat and not much in greens. Bad bad. Plus I drink lots of green tea daily, all kinds including matcha. I just read that green tea inhibits iron absorption. So what litlle I was getting probably wasn't getting absorbed. Wow, who knew? I didn't. I love green tea. So anyway, it's no surprise I was low in iron. Of course though, she took more blood to just run some panels on me to be sure. I've since had a juicy hamburger ( hey, it was justified!! ) and back to green salads and green juicing. I actually do feel better then I have in a few weeks. I'm thinking the slugglishness and depressed feeling might of somewhat been related to that.