Leg problems with Statins, especially Vytorin

[Joann]

I believe my doctor has been having me take anti-cholesterol drugs for about six years, most recently Vytorin, starting with 10/20 and then to 10/40. Throughout much of that time I was plagued with leg cramps at night. I agree with other posters that they can be unbearable. My doctor finally sent me to Dartmouth Hitchcock Medical Center to have a vascular ultrasound on my legs. That doctor said my circulation was fine. I asked him what could cause the horrific cramps and he said perhaps it was the anti-cholesterol drugs. After I got home I called my doctor; they had closed early, so I decided to just stop taking it. I also discontinued the Norvasc that he had given me for circulation. This was on a Friday; on Monday I called and spoke to the nurse/secretary and she said she'd tell him. I didn't hear back from them, so late afternoon I called again and the other woman in the office said that the doctor said it was okay to stop! I couldn't believe it, and wondered if he really understood what I had done. He has pushed those drugs at me for so long. Anyway, no more bad leg cramps except for one night I had one in my left ankle and above. I do still get weak legs. Also sometimes my hands just feel almost useless.

While I was taking the Norvasc my stomach got all messed up and even though I stopped taking both that and Vytorin my stomach still isn't functioning correctly. I am supposed to see my doctor again this morning and hope to enlighten him on the situation. I want to ask for the CoQ10 deficiency test that I saw recommended on some of the posts.

Thanks for listening!

[cjbrooksjc]

JoAnn: "Heavy" legs and leg cramps are two of the MOST COMMON side effects of Statin drugs, and some Statins cause GERD symptoms (acid reflux). Sugar and carbohydrates tend to exacerbate the GERD problem.

Also, COQ10 deficiency testing is only available in a very few labs around the country. Don't be surprised or detracted if you can't get it done (it takes a fresh blood draw which, naturally, you must be present for). Anyway, it is a near certainty that you are COQ10 deficient! Based on recent, professional advice, the best COQ10 product is a Japanese processed bioavailable result called Active-Q QGel manufactured by Tishcon. You can get it over the internet at: *www.epic4health.com (do not include the leading *). It comes in 200Mg capsules and a standard recommendation is one after each meal (600Mg daily) for statin damage recovery. Hope you feel better soon.

Best wishes,

Brooks

[Joann]

Thanks, Brooks,

I forgot to mention that I have also been taking three fluid pills but now that I saw my doctor this morning, he is eliminating two of those. I am hoping that will help straighten things out.

I asked him about the CoQ10 deficiency test and it isn't available here When I get to the pharmacy to pick up a prescription, I will ask about the CoQ10 pill and what they suggest. He also wasn't aware of canitine, so I'll ask about that as well.

Joann

[Biologist]

JoAnn,

Take Brooks' advice on the type of CoQ10. His info source is from one of the best and one of the few who know about this substance. Cutting edge info far beyond what you will find on the subject elsewhere.

Hey, Brooks, that huge molecule is believed to actually rearrange itself (straightened itself out) to get through the cell membranes -- and that is the apparent traditional bottleneck in the system. It sounds like the new stuff is better at it or minimizes the size problem by being more compact.

BTW, here is cut and paste from my last ordering receipt last night:

Order Details:

1 Country Life, MaxiSorb Ultra CoQ10 Q-Gel, 60 mg, 60 Softgels $24.74 x 6 = $139.53 total

2 Twinlab, Zinc Caps, 30 mg, 100 Capsules $3.25 x 3 = $9.17 total

I'm hoping this is the right or equivalent stuff. I think it is but I was not willing to spend the time to figure out who owns what and has licensed what from whom. It speaks of a patient and has the Q-Gel trademark, but the manufacturer/owner seemed to be different. It would have been nice to be able to order directly from the manufacturer that invented it from the first website you cited. But like I said, had I been willing I could have reached a more definitive decision. As is, I think I have done right and my stuff may have been cheaper?

Here is the hyperlink to the stuff. If you have an immediate opinion, do opine please. But don't spend any of your time trying to figure it out it you don't.

*http://www.iherb.com/ProductDetails.aspx?c=1&pid=1634

Biologist

[ronni]

Hey Joann,

I have'nt posted in a while but have following everyone's comments. I had severe leg weakness and occasional cramping when I discontinued Vytorin 10/40 back in August. I insisted that my doctor do a CoQ10 deficiency test. He didn't know it could be done and I had to educate him. He got with his lab tech and they consulted with the Mayo clinic. It is a very specialized test and the specimen has to be handled very carefully, immediately put on ice, spun out and frozen. My test had to be kept frozen and sent to the Mayo clinic. I was found of course to be deficient.
Total Coq10 387 (expected values 433-1532), CoQ10 reduced 89 (expected values 92-98) and CoQ10 reduced and Total 345.9 (expected values 415-1480. After supplementing 2 months with Jarrow Formulas Ubiquinol (not Ubiquinone) 300 mg. daily, my most recent CoQ10 levels are greatly improved. Total is now 3265, reduced 94, total and reduced is 3080.8. I am not completely back to normal but am feeling much better. I will never touch another statin and a recent Berkeley Heart Lab found that statins were never the best option for me. Anyway, sorry for such a long post. Just wanted to let you know that a CoQ10 deficiency test is possible if you educate your doctor.

[Joann]

Thanks, Ronni,

I live in Brattleboro, VT, and while we have a good hospital, they don't have that test listed on their sheet. I was going to call them and ask about it before I went to my doctor's appt., but someone showed up at my house and then I didn't have time. Well, if I'd known I was going to have to wait at least an hour, I would have had time My doctor said they don't offer it. Maybe I'll call tomorrow just in case.

I went to my pharmacy and asked about getting some CoQ10 and L-carnitine. They had it, but of course not the brand that Brooks suggested. I thought it wouldn't hurt to try them and plan to start tomorrow after breakfast. Boy, the size of those suckers!

Thanks again,
Joann

[cjbrooksjc]

Biologist: I got my Q10 from the EPIC4HEALTH site. The shipping notice follows:

200mg ActiveQ® (30 10142 2 33.00
Softgels) uses Ubiquinol
the “active” antioxidant
form of Coenzyme Q10

That verbiage is entirely theirs; not mine, and the total amount was $66.00 for two bottles of (30) 200Mg softgels. This is great for me as I take 200Mg at a time and one gelcap suits me fine!

Brooks

[cjbrooksjc]

JoAnn: If you can manage it, get the COQ10 I recommended from the epic4health site. The people you are speaking to don't understand the problem and don't know much, if anything, about COQ10 origination or quality. You may be wasting your money. I won't press the issue further except to say, for what it's worth, that's my STRONG recommendation.

Regards,

Brooks

[Biologist]

Brooks,

I have convinced myself that I got the same stuff. It is called ubidecarenone. The patent numbers for the process are the same by comparing websites and product info, and the two "companies" (i.e., entities) are related. But you made the better deal. I paid 17.45% more per one calculation :(

But I also went ahead and bought 4 more bottles of exactly what you got from EPIC4HEALTH (the 200 mg bottles) partly due to your reminder that this is a good time of year to stock up due to the cooler temperatures!

Thanks again for the tip.

Biologist

[Biologist]

JoAnn,

Go here and buy this product:

*http://www.epic4health.com/20ac30sousub.html

Biologist

[Joann]

Thanks to Brooks and Biologist, and everyone else who has made suggestions. I went to the website suggested above and they have a deal that while a bottle of CoQ10 with 30 softgels costs $69.95 they have a special deal to get one bottle for $36.00 and two for $66.00 and four for $120.00. I decided to order the two bottles.

Is there a special kind of L-Carnitine?

Thanks again,
Joann

[carbuffmom]

Hi Joann:

I got so tired of swallowing pills that I ordered liquid l-carnitine from iherb.com. It does't taste too bad -- it's lemon lime flavored and I keep it in the fridge. I just got it, so I'll keep you posted.

Guys, I forgot to mention that my daughter got me some new CoQ10 from evenbetternow.com. They are CoQ melts and you let them dissolve between your tongue and the roof of your mouth. They are pricey though for 100 mg. I just got those too and will keep you posted.

Sharing info has become an invaluable resource for all of us.

My thanks to everyone. Deb

[Joann]

Thanks, Deb,

I look forward to hearing more about the liquid l-carnitine. Small pills aren't too bad to handle, but large pills are mind-boggling And the ones I bought last night aren't the kind you can cut in two.

Joann

[cjbrooksjc]

Joann: The best L-Carnitine for you should be straight L-Carnitine. ACL, or Acetyl L-Carnitine is better for peripheral nerve problems and mental acuity. Straight L-Carnitine is reported to be better suited for muscle/joint problems. Pull up Ray Holder's entries through the SEARCH option (top left here above the forum category), and read some of his posts on L-Carnitine. He is quite well versed on the subj. L-Carnitine in many forms is available everywhere; even Walmart. I get mine from *www.gonsi.com (Nutraceutical Sciences Inst.).

(FYI) Another product: Joint Relief, from Iceland Health (on the net) has been very helpful in lubricating and perhaps repairing my damaged rotator cuffs and elbow cartilage, but that's one of MY particular problems and may not be yours.

Best,

Brooks

[cjbrooksjc]

Biologist: Yeah, at $ per Mg you can't beat the epic4health offer. I, like Joann, got the two bottle deal. I figure it will still be pretty cool here in February; I'll prob stock up then. For Joann's sake I hope they aren't horse pills. And, Joann, if they ARE bign's - you can bite them, swallow the content (which, in my experience, isn't either bad or good tasting) and spit the gelcap in the trash; not the act of a debutante, but what the heck.

Regards,

Brooks

[Joann]

Hi, Brooks,

I like your reply regarding biting the gelcap! I managed the one I bought at Rite-Aid last night, then the l-carnitine one. Guess I'll drink more water taking pills the size of those! I also have two huge potassium ones I have to take, to help offset the fluid pills I've been taking. Now, even though the doctor cut back on the fluid pills he wants me to continue with the potassium for a while. My feeling is that I started having so much fluid in my legs because of the cholesterol medicine. It was a vicious circle! I'm hoping it will start to straighten out.

Joann

[Biologist]

It is kind of messy, but I even flossed with it a couple of times. I read there is some research that it is good for tooth health (the connective tissues, not the tooth itself -- a type of specialized ligiment does the work of connecting tooth to bone).

A correction. I wrote:

"I have convinced myself that I got the same stuff.
It is called ubidecarenone."
--Biologist

"Ubidecarenone" apparently is not a differentiating term for the new type of CoQ10. That turns out to be just another term for CoQ10 perferred by some researchers, as best I can tell.

Brooks, how long does your doctor think you will need to take CoQ10 in high doses? Has he commented on that? I am sure I will always take it, as it declines with age. I may cut back the dosage at some point.

Biologist

[Ray Holder]

I missed the posting about carnitine varieties until today. As I take large amounts of carnitine due to post polio needs, 8 grams a day, capsules are a bit too difficult to take in that quantity, and also expensive, but may be more convenient for those more active and mobile than me.

I now take powder form L carnitine, Acetyl carnitine is also available in this form. I get mine from the States, at Bulk Nutrition.com, (www.) in 250, 500 gram, or 1kg containers, at a very reasonable price, I have seen other bulk suppliers on the web, but make sure that the material is pure carnitine, as bulk Nutrition's is, and it is as fully effective as any I have had elsewhere. Some I have seen advertised is the HCl version, supposedly longer lasting in storage, but more crystalline and unlikely to dissolve soon enough.

Dosage is not too easy to measure accurately, I believe 1/4 teaspoon (1.25 ml), equals 750mg, but I now use a slightly smaller teaspoon, a little under 5 ml when filled just level, and that weighs 2.4 grams. I take my first dose a.m. in lemon squash left from my overnight glass, but I find it is quite easy to take in plain water, with no obvious taste. There seem to be no ill effects from larger doses ( after you have worked up to them), so I do not worry about taking too much, I bother more about not getting enough, and the price is no longer a constraint. My previous source in Australia cost me £100 plus per month, the BN version works out at £10 for the same period, if I get the 1kg size, even after paying shipping and duty.

One can buy Q10 toothpaste, I think gum problems are due to Q10 deficiency. Some doctors have suggested gum problems are a cause of heart problems, but I believe that both are manifestations of Q10 deficiency.

I had just convinced myself that Healthy Options Q10 (Kaneka) is just as good as my Pharmanord, the only one that works for me from this side of the pond, when out comes another version. It is not clear just how to convert the dosage of the new form, and it seems to be a bit pricey. I am not yet sure whether or not to try it, I have had so many versions that don't work for me, and it is only by finding the effects of insuffiency that I know a form doesn't work, and I have to build back to normal again afterwards.

Ray

[Joann]

Hi, Ray,

Thanks a lot for your reply. I had researched some of your postings at the suggestion of some of the other replies. I will investigate the powdered acetyl l-carnitine website that you mention. I'm not sure how small a teaspoon I'll be able to find, but I'll certainly look into it.

Thanks again!

Joann

[ronni]

Ray,
Just wanted to share with you that I don't plan on changing my CoQ10. I have blood test proof (please see my earlier post) of how effectively Jarrow Formulas QH Absorb (Ubiquinol - Kaneka QH) raised my levels in just two months. And it seems much more reasonably priced than the new version mentioned by other posts. I buy mine from All Star Health. *http://www.allstarhealth.com/f/jarrow-qh-absorb.htm
I get 60 100 mg. softgels for 32.20 plus shipping. Hope this is helpful for you. Your information has been very beneficial to me. The L Carnitine that you suggested has really improved the muscle weakness in my legs. It has taken awhile, and I had to increase the amount to 1000 mg daily, but I am finally getting better. I am so appreciative of this forum and all of you. I don't know how sick I would be without this information!