Voice and Swallowing Complications with Lipitor

[rockingrammy]

Reading these posts makes me wonder about my husband. He has been on Lipitor for 7-8 years. He has been diagnosed with a goiter deep in the throat with tentacles that go down into the chest area. He has recently been diagnosed with a cyst on his esophogus that is blocking about 50% of his airway. He is scheduled for surgery on Feb 6 to have this cyst removed. He also has numerous cysts under his skin on various parts of his body (arm, chest). His GP says these are calcium deposits. He is 60 yrs old and had a massive heart attack in 1997 at 50. He has two stents in his left anterior descending artery. Could lipitor be the cause of this cyst? How do I convince him that it might be time to wean off lipitor? He is very stubborn and says the lipitor is what has kept him from having another heart attack. (His father died of congestive heart failure and had several heart attacks starting at the age of 39). He is also taking 2000 mg of niaspan a day. After about 5 years his cariologist dismissed him. His GP has never done so much as an ekg in all these years.

[webito]

Hello Ray
Thank you for the input on the Q10.
I know I 've lost a lot of muscle mass and I am still losing.
My cpk levels shows that there is still wastage.What do you think it will be the right amount of l-carnitine I should start taking to regain my muscles?
Also while taking L-carnitine would I be able to do moderate weightlifting and keep my cpk levels at bay?
Regards
webito
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[Ray Holder]

Hi Webito

If your CPK figure is raised, you are certainly in need of L Carnitine, 500mg a day is a good starting point for the first 3/4 days, and then increase by another 500 mg for 3/4 more days, and so on until either you get some improvement, or your bowels object. A dose first thing in the morning is most useful, and add another one or two later on (within the total you have arrived at) if you feel you need them, but not after 4pm if possible, or you may have difficulty falling asleep.

Some find that there should be 2 hours after food, and 30/45 mins before more food when taking carnitine, to have most effect.

I believe that energetic exercise when low in carnitine will cause muscle wastage, because the muscle will feed on its own protein to make the energy required, as fat cannot be metabolised for this purpose in the absence of carnitine. Gentle exercise to maintain free movement is better until your carnitine levels get back up to a normal figure.

Ray

[webito]

Hello Ray
You allways give so much help
Thank you again
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[John Hope]

I also had swallowing problems with Lipitor. It felt like there was mucus stuck in my throat, yet I couldn't expectorate it. Also had sleep apnea (sp?) and snoring problems. All these things have stopped since I stopped Lipitor.

[BobbyH]

Hello John

Your experience sounds a lot like my own. I don't have a swallowing problem per sec but clearing my throat of mucus at times is difficult.

How long were you on Lipitor and how long after you stopped using Lipitor did the problem clear up?

BobbyH

[webito]

Hello Ray,
Since you know so much about this subject I have another question for you..
Today I went to see my doctor and I asked him for a prescription for L-Carnitine and he even didn't know it was prescription; he said It is against the law to prescribe anything without a need for it (I also showed him a copy of your previous post regarding L-carnitine) and he is sending me again for a ck test and a levo carnitine level test and if the result shows that Iam low in carnitine then he will write the prescription.
My question is : since 10 days ago my ck was elevated and tomorrow's test will be elevated too because I can see that there is big wastage activity going on my left arm (before it was on my right one) , would my carnitine test result be low ?

Again, thank you in advance
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[John Hope]

Hi BobbyH

I have now been off Lipitor for a week and feel about 10 years younger. I'd say most of the symptoms - including the swallowing troubles - cleared up after about 3 days.

I'd been on the 80mg Lipitor for a week having increased from 20mg over about a month. Prior to that I'd been on 20mg for about 18 months.
Before that Simvastatin 20- 40mg for 6 years or so. Didn't have too many problems on 20 mg Simvastatin (Zocor) I must admit. Things started going wrong when I started Lipitor.



John

[BobbyH]

Hi Webito

You may want to check out the iHerb website for your supplements. You'll be able to find the L Carnitine there along with any other supplements you may need. Prices are very reasonable. Orders are delivered within 4 to 5 days.

[webito]

Hello BobbyH
Thanks for the tip, I was at the web site and the prices are fine BUT there they have a warning for shipping L-carnitine into Canada and most likely it'll be confiscated by Canada Customs.
Have you imported L-carnitine from them or anybody else ?

Regards
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[Ray Holder]

Hi webito
I have not heard of anyone (except a UK post polio) who managed to get a carnitine test done. It is quite often done in Australia on post polios, and reveals many with the problem.

Personally I feel certain that your carnitine level will be low, mine has never been checked, people here were uncertain about where it could be done, that was 5 years ago, but as supplementation made such a dramatic difference, and as a hospital CK measurement 3 years ago after being deprived of my carnitine for a few days had gone back up, only to come down to normal quickly with renewed carnitine dosage, it all seems to follow the theory completely.

Prescription carnitine will probably be fairly expensive, but I heard that supplementary carnitine is not on sale in Canada, and getting over the border might be difficult. I get mine in bulk from *www.bulknutrition.com, but I don't know if that would work for you. Codex has a lot to answer for in this matter.
The only practical info about carnitine levels is on the W Australia polio network website, with lots of examples, it is at *www.upnaway.com.au/poliowa and click on research or carnitine.
I hope you get your carnitine quickly, I would like to know the test result figures, the deficiency is little known in medical circles generally, just in newborns and those on dialysis, but Fernando Scaglia has written a paper on the subject which will come up on Google if his name and Carnitine deficiency are put in. He had not heard of statin or polio induced deficiency, but has a lot about supplementation, and other causes, such as penicillin use.

Ray

[webito]

Hi Ray
Thanks for the response.
I went yesterday for a ck test and a carnitine test. The nurse in the lab did not know anything about this test except that it was not covered by OHIP (our Ontario Health System Plan),so she had to ask one of the lab technicians for the code and I had to pay $40.00. In 3 days my doctor will get the results and I will let you know.
Iam not going to wait for that result and hopefully wait for a prescription from him, this saturday I will travel to Buffalo, NY which is 1.5 hour by car from Toronto and buy it in any health store over the counter and Iam not going to declare it in my way back just in case.

Regards

[BobbyH]

Hi Webito

I have gotten all my supplements from iHerb including L-Carnitine without any problems whatsoever. I have them ship by DHL international and it clears Customs with no problems so far.

I haven't tried GNC, they may carry it. You can check their website, its US based but if they have it you can then check to see if local stores in your in the GTA to see if they stock it.

You may also want to check out a Naturopathic Doctor in your area. They carry a number of supplements and if they don't carry it they may be willing to get it for you. The Naturopathic website in Canada is *http://www.cand.ca. The website has a practioner locator tool to help you find a doctor in your area.

A couple of suggestions to investigate for you.

[webito]

Hi BobbyH,
Thanks for all the great info, I'll let you know.

Regards

[cjbrooksjc]

webito: Another site in the US is Nutraceutical Sciences Inst. (gonsi.com). I have found the prices competitive and the quality high for all products. I don't know how they ship (DHL, FEDEX, UPS), and, as I am in the US, no feeling for customs inspections. We buy Rx meds from Canada, why shouldn't you be able to buy supplements from us? Anyway, you can check out the site, and make your own decision.

Regards,

Brooks

[webito]

Hi cjbrooksjc,
Thank you very much for the info, I'll check them out and try to get their shipping details.

Regards

[webito]

Hello Ray
I've got my results back, my ck was elevated again and my carnitine level was normal.
Iam taking Q10 1500g per day and I started the L-carnitine after I went to the lab for the tests. I started the L-carnitine last saturday at 500mg for 3 days and increased to 1000mg for 3 days and this is my 2nd day at 1500mg . I am not sure of any difference good or bad yet.
Do you think taking the L-carnitine will be useless if my level is already normal?
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[Ray Holder]

Hi Webito

Did they tell you what were the free and acyl figures for the carnitine, I would have to refer back to the POLIOWA website to give an opinion. If your CK is high you most certainly need carnitine, it brings mine down to near normal in hours.

Ray

[webito]

Hi Ray,
This is what my report reads:

free carnitine 41.7 umoL/L >15 days:26 - 60 umoL/L
total carnitine 42.9 umoL/L >15 days: 32 - 84 umoL/L

I hope this can give you an idea.
Also ,because all the muscle wasting and my fasciculations my doctor and my neurologist thinks that most likely is ALS but I still have to go for more test, including a EMG next march.
Regards

[carbuffmom]

Hi webito:

I have also been diagnosed with ALS after taking statins for 13 years. If I can be of help, feel free to contact me. Good luck with your EMG.

DEB