CoEnzyme Q10

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I have some questions about the above and if anyone has tried this or has knowledge about it...I looked it up on the net yesterday and found several very interesting things about it..

I have a megaloblastic anemia disorder which causes me issues with extreme fatigue, tingling of hands/feet and skin...I also have high blood pressure that I take two meds for...along with that I take Tamoxifen and lovstatin for cholestorol....

During my playing on the internet I discovered some articles on some pretty renouned websites that the CoQ10 plays a large part in fatigue issues and high blood pressure....

I also discovered that the statin drug I take for cholestorol blocks my bodies use or production of the CoQ10.....the anemic disorder I have is also due to my bodies inability to absorb.

My question is: has any of you used this?

I would love to be able to get control of my blood pressure, cholestrol, anemia issues and the god awful fatigue that was aided and abetted by my breast cancer treatment.....my intention is to get rid of all chemical meds if possible.

What do you think???

Any info would be greatly appreciated.

Thank you

Jule

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Comments

  • Cheryl60
    Cheryl60 Member Posts: 46
    edited January 2009

    Hi Jule...I have always heard that if we are put on any kind of statin, we should be taking CoQ10 because of the fact that the statins rob our bodies of it.  Humm...do you think drs. MIGHT know this info too??? Sigh...the whole thing just makes me shake my head. I have taken the CoQ10 but am not on it right now.  I think I will start it again.  I have started taking Femera after 6 weeks of rads and having a lumpectomy in late August.  2 weeks into this 'drug' I am experiencing the 'flushing' symptom and now ankles and hands are aching pretty good.  But most of all I am starting to gain weight.  OMG..I do NOT want this SE most of all.  I'm getting quite fearful of the SE i've been reading about from hormone therapy and of course the drs. tell you that you have to take them.  Its the fear factor they pass on to us.  I realize the stats are good for surviving taking these drugs, but i'm not liking the se of them at all!  Its such a hard issue to try to come to terms with.  They say knowledge is power, but my gosh, it does make ones head spin at times!  I truely wish there was an easy answer to taking these meds, but unfortunately there isnt.  Its a personal issue for all of us.  I am one who does NOT care at all for taking pills but here i am taking alot of them now.. UGH

    Hope your journey is a Good One and if you have an futher info, would also appreciate hearing from you.  Thanks, Cheryl

  • Jellydonut
    Jellydonut Member Posts: 1,043
    edited January 2009

    Julie,

    Since you're on a few meds, it would be wise to check w/your doc(s) first before taking CoQ.  Most of us here don't know if it would interfere in any way with what meds you're on.

    If the doc says yes, buy the best brand you can afford with the least fillers.

    CoQ is good stuff and I've been taking it for at least 3 years now.

    Best to you,

    Jelly

  • vivre
    vivre Member Posts: 2,167
    edited January 2009

    Hi girls

    I take coq10 and many other supplements because they are antioxidants. CoQ10 is known to be beneficial for the heart too. I do not want to be redundant by stating things that I have posted on other threads but just look around the alternatives here and you will find a lot of links that you will learn a lot from. Doctors today do not have the time to learn all there is to know. We do need to be our own advocates, and not take it for granted that they know it all. Even though doctors are well trained, no one knows our own body as we do ourselves. We need to pay attention and listen to what it is telling us. Then we need to keep looking for all the answers to our questions about good health. There websites that give a lot of good info about alternatives:

    cancertutor.com

    breastcancerchoices.com

    bcaction.com

    To your health!

  • BMD
    BMD Member Posts: 1,492
    edited January 2009

    Hey Jule how ya doing. It is been awhile since we have been on the same thread. I have taken CoQ10 for about 12 years. I just recently was diagnosed with high blood pressure but I am sure it is the weight I have gained. I also take the statin since my cholesterol went through the roof on Femara. I will continue to take the CoQ10 though because of it's benefits to the heart. Heart disease runs rampant in my family.

  • klp
    klp Member Posts: 1,770
    edited January 2009

    My family nurse practitioner told me quite awhile ago to take COQ10. I had been taking 100mg each day until I started radiation. My rad onch told me to discontinue it along with Vitamin C until I finished radiation. I just recently started taking lovastatin again after trying to control cholesterol using a herbal pill. The rad doc wanted me to discontinue that along with a b/p herbal because he didn't know for sure if they would interfere with rads. I'll resume herbals, C and COQ10 very soon. Hopefully I can stop the b/p and cholesterol meds again.

  • phoenixrising
    phoenixrising Member Posts: 139
    edited January 2009

    I don't know much about megaloblastic anemia disorder but maybe if you can get your cholesterol down your blood pressure might come down as well.  Tamoxifen should be working FOR you in that regard, but have you thought of taking B12,B6 and Folic Acid combo?  This combo has been known to reduce cholesterol.  Another B vitamin that apparently works on our cholesterol is Niacin.  Better yet why not just take a high dose B supplement for a while and see if that helps.  I believe the Omega 3 oils help balance the bodies fatty acids.

    About the CoQ10, I am on it right now and took it while having chemo (Anthracyclines) to help prevent heart damage.  It might even enhance the other drugs you are taking. I don't think there is a problem with the Tamoxifen, but I really don't know about the statins.

    Good luck to you

    jan

  • Jaybird627
    Jaybird627 Member Posts: 2,144
    edited January 2009

    Jule,

    I'm sure I'm of no help for you but here goes:

    I started taking coq10 after tx, 3+ years now. (never took it before but since A/C is hard on one's heart...)

    I'm not on any 'drug' (is alcohol a 'drug'???) other than Singulair and Evista.

    I've always had low blood pressure and no health 'problems'. (not counting BC)

    As for fatigue, that could be caused by other factors and also 'cured' by more than just coq10.  Look into your diet. Has that changed? If not, then exercise. Has that changed? If not, then perhaps supplements are the answer. Have you tried bee pollen? You may want to look into that.

    I wish you luck!

  • althea
    althea Member Posts: 1,595
    edited January 2009

    Hi jule,

    I don't know what megaloblastic anemia is exactly, but I have learned something recently about pernicious anemia that I'll share just in case it's helpful for you also.  A B12 deficiency can cause pernicious anemia and some people cannot absorb B12 in the digestive tract, where a protein called the intrinsic factor is in charge of assimilating it. 

    The workaround for this problem is to get a B12 shot or get what's called sublingual B vitamins, which are absorbed orally by the two giant veins underneath the tongue.  I've been using this form of B complex vitamins since november as part of my relentess quest to kick my fatigue to the curb.  

    My doctors just shrug their shoulders when I complain of fatigue.  It's very frustrating.  I finally figured out a year ago that I appear to be hypothyroid.  Radiation is notorious for knocking our thyroids out of balance.  Hypothyroidism occurs mostly in women, and it's not uncommon for women to suffer for a long time before thyroid concerns are addressed.  An easy test at home is to use your thermometer 5 days in a row before rising.  If necessary, shake it down the night before so you can use it without any exertion beforehand.  If your temp is below normal, hypothyroidism is a huge candidate for your fatigue problem.  My own personal list of thyroid symptoms are difficulty losing weight, low grade depression, poor stamina, low energy, hard stools, high cholesterol, brain fog, digestive problems, brittle nails.  Other common symptoms are dry itchy skin, thinning hair, outer third of eyebrows disappearing.  

  • Cheryl60
    Cheryl60 Member Posts: 46
    edited January 2009

    OMG..Althea, your last comments about Hypothryroidism is ME...so now what to you do to correct this problem?  I have been trying to pin my SE on Femera, but in retrospect, this all started back on Oct when i began rads.  I'll appreciate some feed back on this and how I can go about correcting this problem so the rest of my treatments on Femera go fairly smoothly.  Thanks so much, Cheryl

  • althea
    althea Member Posts: 1,595
    edited January 2009

    Cheryl, you could try your primary care physician, but mine is worse than worthless on this topic.  I feel like I'm at the end of the world sometimes when it comes to quality of medical care I can access, but more truthfully, I have the impression that thyroid education is woefully inadequate.  I wonder if it gets more than 10 minutes in the entire course of a medical education. 

    I met a woman online who could feel her thyroid getting larger.  It was monitored and monitored.  She even asked for surgery and was poo poo'd, until all of a sudden one day her thyroid had actually grown AROUND a carotid artery and was then told it was too dangerous to operate. So if you don't get anywhere with your primary care or internist, you are not alone.  It happens all the time, and this is why I've made it my self appointed task to 'beat the drum' at any hint of hypothyroid symptom.  

    http://www.wilsonssyndrome.com/ 

    http://www.breastcancerchoices.org/iproject 

    I suggest you check out these two sites for starters.  I've tried so many things to get my mojo back and with each new attempt, it feels like trying to jump a battery that doesn't have any juice left.  So I can't claim success -- yet, but I at least feel like I know what the problem is, which is more than I had the first two years of assdragging fatigue.  

    I don't mean to hijack the thread.  I had coQ10 on my list of things to try.  Over the last year I'd try to add just one new thing to the mix every month or so.  With the advent of the new year, I went to the vitamin shoppe and bought a slew of new things to try, including coQ10.  So it's only been a couple of weeks, but so far my fatigue continues to stick to me like glue.  

  • vivre
    vivre Member Posts: 2,167
    edited January 2009

    You all might like to check out the iodine link to thyroid problems, and the possible preventative benefits against bc at breastcancerchoices.org that Althea mentioned.

  • althea
    althea Member Posts: 1,595
    edited January 2009

    I just googled megaloblastic anemia and learned it's practically the same thing as pernicious anemia.  Just to share my mini learning curve on B12, some authors say typical absorption via the intrinsic factor protein in our intestine occurs primarily through animal sources.  For no apparent reason, the intrinsic factor thumbs its nose at plant-based sources and absorbs B12 only from animal sources, such as eggs, meat, shellfish.  One article I just viewed included milk on this list, which is true for raw milk, but most people drink pastuerized milk.  The pastuerization process kills the B12 vitamin.  So, people following a vegan diet need a B12 supplement, either by a shot or sublingual supplement. 

    Even people who consume animal sources of B12 may not get what they need.  As people age, B12 uptake diminishes.  Some people appear to lack the intrinsic factor altogether.  One of the symptoms of B12 deficiency can be mental confusion.  Some authors indicate that a significant portion of mental ward patients are deficient in B complex vitamins.  It may also be possible that people pegged with symptoms of alzheimers may have B12 deficiencies.  I gave my mom a bottle of sublingual B vitamins for Christmas.  She had her annual physical last week, and her doctor gave the vitamins a thumbs up of approval.  

    I had been taking some rather expensive 'superfood' which is entirely plant based, and B12 is on the list of ingredients.  I noticed a large number of B12 supplements in the stores are also plant based. So I don't know if there's just disagreement about the absorbability of B12 from plant sources or what, but I have to wonder how many people might be taking B12 supplements and still be deficient. 

    I blazed a blue streak to the store when I learned about sublingual B vitamins.  I was so sure that THIS time I would find the missing piece of my puzzle to end my fatigue.  Alas, I'm still fatigued and I've been taking the B vitamins since November. 

    As for the iodine available at breastcancerchoices, I started that the week of Christmas.  Still tired.  I'm going to stick with it at least 2 more months.

  • roxy42
    roxy42 Member Posts: 495
    edited January 2009

    Hi I'm 19 month out from treatment.enemia is still with me.I'm tired all the time.I have tried every supliment and B12 and nothing has worked.I'm on arimidex so now i'm real tired.I hope one day i will find relief....I hope you find something that works...........godbless roxy

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2009

    Althea-your research is impeccable my dear!!!!!!

    You hit the nail on the head with this one...I have Pernicous Anemia.....I was dx'd with it a few months prior to finding BC....I actually think that the high volumes/dosages of b12 intramuscular shots that I had to take in the beginning of my walk with that made the cancer cells grow faster which isnt bad as it allowed me to find it at an earlier stage.

    That thought is what lead me to quesitons about the CoQ10-Im very nervous of anything that might speed up the metabolizm or feed those nasty cells that might be cancerous....I know, I know.....Im having one of those freak out sessions that we all get AFTER BC.

    Im really tired of being tired and now Im beginning to have aches/pains that I believe are the tamox and a small amount of weight gain (which I really attribute to the holidays as I ate like a horse!!!!!).

    Brenda-Yes it has been along time hasnt it? How are you?

    To everyone else I really appreciate your thoughts/experience and helpfulness on my questions...

    I have a call into my PCP and hope to hear this week her thoughts on using this....I will let you all know what she says...

    Im so lucky to have her as she is always willing to listen to my ideas and is always supportive of trying things other than chemical meds...her take is that if they work then go for it....her attitude sure helps as I know many others who have their docs pooh-pooh any ideas like this.

    Again, Thanks everyone-I will keep you all informed on how this goes and if any of you think of anything else that might help please let me know.

    Thanks

    Jule

  • vivre
    vivre Member Posts: 2,167
    edited January 2009

    Great info Althea

    Jule I love your motto.

    I just want to add that I hope you are all trying to exercise. I found my energy has improved immensely since I made the effort to exercise an hour every day. If the weather is nice, I walk. If it is bad, I do free weights and pilates. I hate gyms so I made a small investment, about $75 for some hand weights, a yoga mat, an exercise ball and I am set. Some of them come with dvd's to show you how to use them. You can also find this stuff free on the internet.

  • Yazmin
    Yazmin Member Posts: 840
    edited January 2009

    Indeed, exercise has now been demonstrated to reduce recurrence by a larger margin than most ''pills for prevention'. Though it is not always easy to drag oneself to the gym (or the basement), it is absolutely indispensable to work out to reduce recurrence.So let's put on those sneakers....

  • althea
    althea Member Posts: 1,595
    edited January 2009

    I've been walking nearly every day since I finished rads in november 05.  Hate to think how I'd feel if I didn't do my exercise.  I don't like gyms either.  All that sweat..  yuk  I also got a rebounder last may and somehow managed to do some ligament damage to one of my toes. 

    I also eat yogurt, ground flaxseed and flaxseed oil for breakfast most days.   I'll keep adding to my arsenal until this damn fatigue surrenders.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2009

    Yep me too...I walk and am extremely active with life in general.....I can only imagine what I would feel like if I wasnt active....

    Im not a gym type girl either but I walk alot as well as fish the rivers & streams here year around so get a good work out that way..I also ice skate Sunday afternoons.

    Maybe between all of us we can come to terms with this fatigued/aching syndrome and beat the pants off it...

    Keep the ideas comin girls!!!!!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2009

    Ok ladies, heres another kicker!!!

    I just got home from the dentist......broke a tooth so needed repairs so figured what the heck will get my teeth cleaned at the same appt.

    The dental hygenist informed me that I have the beginnings of peridontal disease and that I will need to keep an eye on things....seems they see this alot with cancer patient, yes even those of us who did not have chemo.....she said that cancer maintence drugs not only affect bones in the rest of the body but commonly cause bone loss in the jaw.

    Said the only thing to do now is to go for cleaning every 6 months, use some sort of product so that my saliva doesnt dry up and if that doesnt help they will prescribe a floride supplement....

    So any ideas on some sort of supplement to help with bones??? My bone density scan that was done 18 months ago showed no deteriation at all.....now I wonder if I should let them do another for comparison.

    I have read this statement from plenty of others but to date hadnt really hit home in my brain I guess!!!!!

    Breast Cancer-the gift that keeps on giving........what a statement!!!!!!!!

  • Sierra
    Sierra Member Posts: 1,638
    edited January 2009

    Hi Jpann:)

    great to see you :)))

    I know.. I owe you some mail

    re the coQ10  I have been taking it since dx

    8 yrs ago.. and dont miss it now

    i wonder if it helps the gums, some say that

    and I understand if one is on LIPITOR, you need the CoQ10

    sorry to hear of your condition, and checking with the doctor

    or a homeophathic is best

    now re the teeth

    take good care of them, my DEAR

    I now have a dental plate

    lost my teeth, some in the top and it has cost me

    a fortune

    I take cal mag for sure..

    let me know how you make out

    and special hugs for ya today

    Sierra :)

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2009

    Hi Sierra-long time no talk!!!!!

    Im a little confused though...you are taking the CoQ10? The way your posts reads is that you were taking it but have stopped and dont miss it??? or am I having a blonde moment and miss reading??

    Im not on Lipitor, I "was" on a statin product but have stopped taking it a few days ago...

    This teeth thing just kind of caught me by surprise I guess....you would think that I would realize that the jaw is a bone and that it might be affected but I never even gave that part of my body a thought as I had the bone scan and it was good...Ive always taken decent care of my teeth so thought that would be enough....

    How are you doing? All moved and settled??

    Hugs

    Jule

  • OLBinNJ
    OLBinNJ Member Posts: 236
    edited January 2009

    I take 50 mg of CoQ10 a day and use a Sonic Care toothbrush for the early periodontal disease I was developing. It does seem to help.

  • BMD
    BMD Member Posts: 1,492
    edited January 2009

    Jule-I am getting by. I just wanted to chime in on the teeth. I just had one break under a crown. When I went to get it checked out the denist just touched it and it fell off. Although I take excellent care of my teeth I have always had problems with them. Now I need 2 implants on the bottom right to fix this mess. $$$$. Anyway, I wanted to tell you that I agree with Bin. Sonic Care is an awesome toothbrush. My denist has me put my toothpaste on the brush and dip in Listerine before brushing. Then I rinse with LIsterine too. It keeps my gums so healthy. I think it has to do with with the foaming action combined with the Sonic brush. I may have broken teeth but my gums perfect.

  • OLBinNJ
    OLBinNJ Member Posts: 236
    edited January 2009

    BMD,

    I am encouraging everyone to get their vitamin D levels checked.  A deficiency can prevent your body from absorbing calcium to the point that your body pulls it out of your bones, and probably teeth as well.  I have been taking vitamin D3 four times a day in my calcium and my multi for years.  I have always been active, and I spend a lot of time outside in nice weather.  I have osteopenia and my vitamin D level is 15.  I am now on 50,000ius once a week to try to get my level up.  If your D level is low, maybe that's why you are having problems with your teeth. 

  • GramE
    GramE Member Posts: 5,056
    edited January 2009

    Dare I add that my sister was just diagnosed with Adrenal Fatigue.   It is caused by stress mainly.   You can google it and see what else there is.  I go on the 29th for onco and gonna ask what she thinks of it.   Thyroid, adrenal, osteopenia, etc, etc,   I think we all should be given an honorary medical degree.

  • sschmidt
    sschmidt Member Posts: 178
    edited January 2009

    I just briefly read your posts.  Have your TSH levels checked for thyroid.  IF your thyroid is low it is simple to fix.  I take Niacin...1000 mg a day for cholesterol and it works. 500 twice a day.   You have to build up to it and my doctor wanted me to have liver enzyms checked every couple of months for a while.  Do not take slow repease Niacin...it will hurt your liver like a staton.  Start with a dose of 50 and work up to 1000.  You will get flushing.

    What a bout B12 shots?

    Take 2-3 thousand D3 a day.  Exercise.   

    :) shirley

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2009

    Ok, here's my first report on the CoQ10 use....

    I have been taking it for a week and a 1/2 now...my pcp requested that I keep track of my blood pressure so that meds can be adjusted as needed. It has gone from 154/87 to 113/81....I have been taking it every other evening and it has dropped each time a few points....Sunday I am dropping one of the blood pressure meds.

    I also stopped taking the lovstatin for the cholestrol....

    I also am beginning to see a change in the extreme fatigue I was having....I notice that its 8-9:00 pm instead of 6-7:00 pm when I get so tired that it feels like my eyes are ready to roll into the back of my head!!!!! I know that hour or so isnt much but it progress!!!!

    As far as the teeth-I have my porceling crown placed tomorrow so am sure with chat with dentist again on teeth health and meds...

    Hope you all are doing well....

    Hugs

    Jule

  • fairy49
    fairy49 Member Posts: 1,245
    edited February 2009

    Hi Jule, may I ask what dosage you are taking of CoQ10? It sounds like you are having fabulous results!

    Lorraine ox

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2009

    Hi Lorraine

    Im taking Spring Valley brand...I bought it at Walmart for $22.00..it was a twin pack with 60 softgels in each bottle.

    I take one each evening with dinner....the bottle says it is 100mg.

    Im surprised at the results already as my pcp told me she thought it would take several weeks for me to see anything.

    Im looking forward to getting weaned off the chemical meds so apparently I have hit on something that just might do that...

    Best wishes to all and I will keep you posted on my progress as time goes by.

    Jule

  • vivre
    vivre Member Posts: 2,167
    edited February 2009

    Jule, Have you ever tried Resvinatrol? It is the good stuff in red wine without the alcohol. I buy a bottle at Sam's for about $20. One shot is equal to about 156 glasses of the resveratrol in red wine. It is suppose to support cardiovascular health, supports immune system, and supports healthy cholesterol levels. I make my husband take it because he hates to swallow pills.

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