Tamoxifen, Vit. D, and hot flashes

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Cindyl
Cindyl Member Posts: 1,194
edited July 2015 in Hormonal Therapy - Before, During, and After

I've been taking Tamoxifen since late May with minimal SE's.  A little achy in the morning and very mild hot flashes (mild and only say 5-10 a week) 

I started taking Vitamin D on Saturday.  Sunday was normal, but yesterday? OMG I had several long, strong flashes during the day, and last night was miserable.  I'd doze off, wake just drenched in sweat with the covers kicked off, then I'd get cold, cover up and repeat.  I counted at least 12 separate cycles each lasting about 20 minutes.

Coincidence?

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  • swim_girl
    swim_girl Member Posts: 37
    edited October 2012

    Cindyl, I've been on Tamoxifen for almost 7 weeks (not that I'm counting). I've been taking vitamin D the whole time and have only had a few hot flashes (mostly warm flashes and a few random acts of perspiration). I have head a few people say that their night sweats got worse a few months in, although I'm hoping that's not the case. Sorry I don't have more info, but maybe some of the other ladies will weigh in. There was also some discussion of vitamin D on one of the AI threads.

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  • momof3boys
    momof3boys Member Posts: 896
    edited October 2012

    I've been taking Tamoxifin since June 3rd. And I've taken Vit D, daily, since March. I can't really say I've had a lot of hot flashes over the past 60 days. They're much more infrequent (maybe 2 a week?) than they were went I started Tamoxifin. At the same time I started Tamoxifin, my MO had me start Evening Primrose Oil (a capsule). I take 2 in the am and 2 before bed. It's suppossed to help with hot flashes.

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  • liefie
    liefie Member Posts: 2,440
    edited October 2012

    Cindyl, I have also been taking Vit. D with Tamoxifen, which I've been on for more than eight weeks now. The hot flushes are okay, and I get a few milder ones per day, but not much at night. Sure hope it stays that way. For me they definitely are brought on immediately by coffee and tea, and I try to avoid it. I don't think the Vit. D has much to do with it.

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  • Cindyl
    Cindyl Member Posts: 1,194
    edited October 2012

    hmm well the D is the only thing that's different other than a tad bit more sodium... and the flashes were crazy this am and less this afternoon (I didn't take today's D dose) so we'll see how tonight goes.

    How big of a D dose are you ladies taking?  Maybe, I'll try a smaller dose...

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  • momof3boys
    momof3boys Member Posts: 896
    edited October 2012

    I'm taking 1000 once a day, prescription.

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  • Cindyl
    Cindyl Member Posts: 1,194
    edited October 2012

    hmmm.  The pills I was taking are 5000 in addition, I take a calcium that has 500 iu of D.  Maybe it's just too much.  ... off to google vit. D overdose.

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  • momof3boys
    momof3boys Member Posts: 896
    edited October 2012

    Let us know what you find out!

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  • Cindi2011
    Cindi2011 Member Posts: 133
    edited October 2012

    My hot flashes are less but were crazy when starting the tamoxifen in February. June or July I started with B-100 balanced B complex, B-12 1000mcg dietary supplement, vitamin D3 1000IU  just recently calcium 600mg dietary supplement.  I have this thick heavy feeling in my throat like someone choking me.

    It may be stress, it may be something else or it may be overdose.  Anyone else have this?  My onc refuses to do body scan, tumor markers and says that I can continue to use the vitamins but it wont change anything.  What the heck?

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  • mammalou
    mammalou Member Posts: 823
    edited October 2012

    I have been on Tamoxifen for a little over a year.  My hot flashes are terrible and I break out into a sweat all over my body.  They wake me up at night and i do the same thing.  covers off, wet, then cold, covers on again,  I also get tingles in my feet when hot flashes start.  it is miserable.  I went off Tamoxifen for 2 weeks when I had surgery this summer and it was a little better.

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  • peggy_j
    peggy_j Member Posts: 1,700
    edited October 2012

    Cindyl, 5500 IU of Vit D is a lot. (it doesn't pass through you, unlike Vit C). I take 1000 IU a day, plus the Vit D in my food + what I make from the sun. BTW, have you thought of just stopping the Vit D for a week to see how you feel? Easy to try. good luck. FWIW, my hot flashes aren't bad but they are unpredictable. They are worse at night.

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  • jenlee
    jenlee Member Posts: 504
    edited October 2012

    It's remarkable how, like with everything else in this journey, we get varying opinions from our medical team on these issues.  A BCO member mentioned an Integrative Medical Oncologist at UCLA; not paid for by insurance, but I think a visit once or twice a year might help me with my overall nutrition & supplement plan.

    momof3boys, my MO said definitely no Evening Primrose Oil.  I see her next week and will ask why.  She very strongly recommended the antidepressant Effexor and I had no objections, since it has been a depressing year:)  The lowest dose was working for a while, but seems like I need more, so I have a prescription for that.  In the meantime, my hot flashes aren't as severe, but the night sweats have been awful lately, as some of you described... hot, cold, wet, cold, hot.  (I always nag my daughter about not puttting on fresh pj's everynight and to wear them for two or three nights to help cut back on laundry.)  Some nights I'm changing pajamas during the night, sheet changes more often, blankets washed more often too; talk about laundry!!!  Can't imagine ever needing winter pajamas again.  I put a nice blanket in the car because I always need the AC on and of course, that makes her cold.

    Has anyone tired tracking their hot flashes for time of day, potential food triggers, etc.  I know that taking a shower and immediately rushing to go somewhere is a sure trigger for a hot flash for me (of course the wig doesn't help)  Would also like to figure out if some foods are triggers or helpers.  I haven't tolderated spicy foods since chemo, so I know it's not that. I'm sure there are articles about this somewhere and I need to start getting it figured out. 

    cindi2011, that heavy feeling in your throat sounds a bit like reflux, just a thought.  You might try an OTC treatment for a week, otherwise talk to your general practitioner, or even see an ENT doc.  I had it during chemo and was terrified it was esophageal cancer, but it wasn't!  :)  

    I see that some of you are taking calcium supplements.  I'm going to ask my MO about that too.  I keep seeing articles about a new study that calcium supplements can greatly increase the risk of heart attack.  I stopped taking them after I calculated that I had increased my intake of almond milk enough to get the required calcium.  Not trying to scare everyone, but good to know if anyone else has talked to their docs about this...

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  • Cindyl
    Cindyl Member Posts: 1,194
    edited October 2012

    Peggy - yes.  I dropped the separate vit. D supplement and am just going to do the calcium with the 500 iu of D this week.  I seem to be much less "hot flashy" yesterday and today.  1 yesterday and none so far today.  If this continues, I may go up to 1000 IU next week and see how that works.

    I'm not getting nearly as much sunshine as the days get shorter and colder so I think I do need the D, but I'm not interested in another night like Monday night, that's for sure.

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  • Cindyl
    Cindyl Member Posts: 1,194
    edited October 2012

    I track everything I eat, and how much exercise I get... hadn't been tracking the hot flashes because the were just a minor annoyance, but I think I will start keeping track of the "power surges" as a friend calls them.

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  • LScott63
    LScott63 Member Posts: 57
    edited October 2012

    So glad to read your post.  I had my night sweats under control with Black Cohash and Vitamin E.  Started Vitamin D3 due to a deficiency and now I have night sweats AND hot flashes.  My naturopath said there should not be a problem but my dietician said it could have an effect since Vitamin D is a hormone.  I am stopping my Vitamin D for a while to see if it helps. Thanks so much for your post!!!  I thought it was all in my head.  Taking Vitamin D3 5000.

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  • Cindyl
    Cindyl Member Posts: 1,194
    edited October 2012

    LScott - I've been googling, and haven't found any medical professional who agrees that there is a cause and effect relationship between D and the hot flashes, but I see lots of people asking about it.

     I've reduced my D to 2000 IU and have had only a few very mild hot flashes.  We'll see how it goes.

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  • peggy_j
    peggy_j Member Posts: 1,700
    edited October 2012

    Cindyl, thanks for sharing your experience. Interesting. Hope you've stopped flashing! ;)

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  • LScott63
    LScott63 Member Posts: 57
    edited October 2012

    I could not find anything either so I went yesterday and had my levels rechecked they went from 21 to 84.  So I searched for Vitamin D toxicity and one of the symptoms was a flush and burning of the skin.  ( can't find it again not every site mentions this.  was a link on Livestrong)  I had already decided to discontinue the D3 and I have not taken any in the last 4 days.  Last night I was finally free of night sweats in 2+ months!!  I plan on getting my D through diet no more pills for this gal I enjoy my sleep too much.

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  • peggy_j
    peggy_j Member Posts: 1,700
    edited October 2012
    I came across a study about Vit D and Breast Cancer. There had been discussions on Vit D in the Complementary Forum so I posted it there.
     
     
    Their conclusion was 4000 IU/day from all sources: food, supplements and sun exposure (and 12 mins of sun == 3000 UI. More than I expected) 
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  • Cindyl
    Cindyl Member Posts: 1,194
    edited October 2012

    Interesting information, ladies.  Thanks.

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  • LMPate
    LMPate Member Posts: 1
    edited July 2015

    I started taking Tamoxifen in 2011.  I had 4 atypia papilloma tumors removed and this was after a series of many tumors, cysts, precancerous pap smears, and full hysterectomy due to endometriosis.  I have severe hot flashes daily especially in the evenings.  I just found out my Vitamin D level is at 7.  The doctor started me on 50,000 units a week.  I am taking pills for depression, something I have never had before.  I have also developed osteoporosis.  I truly believe that there is a connection between all of these.  Hot flashes are due to zero hormones but the rest is the Tamoxifen I am sure.  I started feeling extremely weak, my bones hurt and so did my muscles.  Of course, I can live with all of this as long as my CT Scans keep coming back normal. 



     

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