Simvastatin - six weeks in and feeling not quite right. Help

[caf]

Hi - I'm a woman in England with familial hyperlipidaemia (I think that's hypercholesteraemia in the US) and was prescribed 20mg simvastatin/zocor in January by an endocrinologist. I had no symptoms other than small xanthelasma marks round my left eye. Must admit to being about 35lbs overweight despite a healthy diet sabotaged off and on by chocolate ...

Neither my father or three brothers have ever had weight or cholesterol problems. My mother was given statins about three years ago but she's 82. She doesn't have my condition, just slightly high cholesterol. I can't find any evidence in two generations of large extended family, either, of this hereditary condition.

Anyway, in January I decided not to take the simvastatin because it's a chemical and I'm into healthy eating etc, plus I think at 50 I'm far too young to go on any medication long term. Instead I tried to reduce my cholesterol levels through diet — including flax oil etc. I got the HDL down to about 0.8 but not the LDL, which is 4.8.

I'd been taking 60mg CoQ10 anyway, to help with weight loss and noticed that I had been feeling nicely energetic.

Next check up, the tests showed that the HDL had dropped but the LDL hadn't much. The UK combined reading had come down from 6.7 to 5.8.

The endocrinologist was very unhappy and doubled my statin dose to 40mg daily. Eek! I couldn't bring myself to tell the truth — that I hadn't been taking them. He assumed I'd been eating a very high sat fat diet that had counteracted the drugs.

So I took fright and decided to get the original 20mg dosage instead — the pharmacist was surprised I had been given the 40mg prescription and was happy to give me the smaller dose.

Anyway, I started taking them on July 2. A bonus was that it got me off to sleep much more quickly than usual, though I felt a bit drowsy in the morning. Otherwise, no difference noticed.

Then about 10 days ago I started to feel tired during the day. It has got worse. There's a general feeling of weakness. I can hardly sit up straight sometimes. I've also had odd pains in various places off and on. Slight shooting pains in my head once or twice. Also, an unexplained pain in the ball of my left food on Saturday bad enough to make me limp. Also, stiffness in my ankles especially in the morning and in my lower back. Also a bit of memory loss/feeling slightly spaced out but that could always be something else. And a general feeling of weakness, as if I'm coming down with a virus. At time of writing I feel fine, just slightly tired.

But by this morning I was worried enough to have started to research side effects in earnest.

I'm now thinking of stopping the statins. Has anyone any comment to make that could help me? I'm appalled to read the accounts of suffering on this site and feel very sympathetic to everyone whose lives have been affected. I'm very keen to avoid anything worse happening to me. I've decided also to seek a second opinion from another doctor too.

I'd be very grateful for any observations. Thanks!

[cjbrooksjc]

caf: You will find it difficult to gain an empathetic ear among the medical profession. I think there may be a few in the Motherland, but I can't recall any names for you. Here in the US there is Dr. Peter Langsjoen. Google his name for a cardiologist's view on the dire effects of statins and the need for CoQ10 supplementation. Also, AND FIRSTLY, go to the top of this page and 'click' on Statins Home Page; there is a wealth of information there, including information on natural cholesterol reduction. Finally, not to alarm you, but your symptoms are typical, and you can expect them to broaden and worsen over time. My strong advise is to stop taking this poison. I know your health care system requirements make you hesitate and give you cause for alarm, but I will NEVER take another Statin and can only offer my opinion; health care systems be damned.

Best Regards,

Brooks

[cjbrooksjc]

caf: If you want a real life history of what this stuff can do (Lipitor and Zocor) so you'll know what you have to look forward to - click on my email icon below and send me a note. I'll email my own history to you.

Brooks

[caf]

Thanks, Brooks. In the past couple of days I've done a lot of googling, especially looking for Dr Peter Langsjoen's work. There was also an interesting article on a US site called Red Flag, but I couldn't access it as there's a note saying it's closed to non members for a few months.

Update: I stopped taking Zocor on Monday night, a few hours after posting on the forum. Yesterday (Tuesday), I woke up without the fuzzy edges I'd been experiencing daily on the statins. I felt a fantastic surge on energy all day and walked for a full hour at lunchtime at a good speed. Yippee. I hadn't been able to do that for a few weeks, as the side effects began to show — and grow. However, I realise it could take a few weeks to get the stuff out of my system, and sure enough I'm not quite so chipper today. But still, the only way is up.

I'm lucky — I'd only been on the drug for six weeks or so. I also rang my mother and she's now begun to cut down her dose too. She's been on it for years, possibly as many as seven but she can't remember. She's had symptoms of muscular weakness, fatigue, memory problems and acting/talking slightly age inappropriate occasionally. I now think it could be statin side effects. I particularly noticed what the space doc says in his story about thinking he was a 13-year-old boy for a while ...

(Please note, she doesn't have dementia of any sort - that's not what I'm talking about)

She was given Zocor by her doctor about five years ago, probably just because she had reached a certain age. She doesn't have a cholesterol problem. I bought her some CoQ10 and posted them to her today.

I've also bought some higher-dose CoQ10 for myself, to give my system a boost.

Anyway, I look forward to reading your story. In the meantime, I will check out the natural alternatives.

[cjbrooksjc]

caf: Sent you the info. SO GLAD to hear you got off the drug. Remember - Statins tend to diminish your physical abilities until the damaged mitochondria in your body can regain healthy function; so, don't be discouraged if you don't have a great deal of stamina for the first month or so or if you feel physically or emotionally down the day after exertion - that will improve. As for your mother - it's enough to put a gun in my hand (but, I am American, after all). If your Mom had no cholesterol problems and her Dr. put her on Statins, he should be tied to a stake and shot! (again, American) Her symptoms are, like yours, common to Statin sufferers. That the people in whom we place our trust, even our lives, should be so callous in our treatment simply astounds me! I wish you both the best!

Regards,

Brooks

[poohhel]

Caf it looks like Brooks has you well taken care of here in the forum... but welcome. I only have a couple comments to make regarding your initial post.

1) You mentioned with diet your "HDL had dropped but the LDL hadn't much" ... Technically your HDL is good cholestrol and you want that to go UP not down... And as far as I have researched... raising HDL can only be done through exercise. (If anyone knows another way, please let me know)

2) You also stated "I realise it could take a few weeks to get the stuff out of my system" -- It could take longer than a few weeks to repair damage caused, so don't loss hope. I was on Vytorin for 16 months and have been off now for 5 months and still am battling the demons... some of my problems; i.e. neuropathy in my feet may even be permanent... I only tell you this because some doctors will tell you if you haven't found relief in a couple months of stopping statins--then it must have not been the statins to begin with and they try to encourage you to try them again. My doctor went as far as to prescribe Zetia which is not necessarily a statin but there is proof that side effects from statin toxicity will reoccur within about 16 weeks after starting Zetia. See Zetia board for more information if needed.

Anyway good luck to you and your recovery and again welcome to a very sympathetic board. ~ Helen aka poohhel

[caf]

Thanks Poohhel and Brooks

Interesting reading what you wrote.

I am still experiencing tiredness - well, fatigue might be a better way to describe it. Must say, it is a very sympathetic and supportive forum. It's been a big help to me.

Best to you

Clare

[kimsuoil]

I recently found a new product that is supposed to be better than fish oil. Krill is a small shrimp-like marine crustacean. There are 85 types of krill present in the world's oceans, the most abundant is the Antarctic Krill. Studies show that taking Krill oil will raise HDL 44% and lower LDL 32%. I just started taking 1.5 grams per day. I will get my HDL checked on Oct 16 and let the board know if it worked.

Kimsuoil

[cjbrooksjc]

Kimsuoil: Many of the forum members would be v. interested in your Oct results. Thanks.

Brooks

[poohhel]

Kimsuoil: Brooks is correct... We would like to know your test results in October. Please be sure to post. Thanks, Helen -aka- poohhel

[kimsuoil]

I will post my numbers hopefully on Oct. 16. In the past 2 weeks I have noticed that my blood pressure has dropped from 130/70 to 118/63....is it the krill oil? I have also dropped 10 lbs since I have been eating healthier since mid Aug.

Kimsuoil

[adec]

There was a 2004 study that showed very beneficial results from supplementing with krill oil on lipid profiles. Yet there might be concerns regarding the enviornmental impact of depleting krill from the seas. For instance, whales are a declining species who depend on krill for their survival. Then, there's just the overall expense and premium of krill oil compared to something like salmon oil.

The solution might be to supplement with astaxantin derived from algae, and a good distilled salmon oil. The major benefits of krill could come from it being such a good source of astaxantin and canthaxanthin. These are both the cartenoids that help give shrimp and lobster their red coloring.

Especially astaxantin itself has been found to be ten times more powerful an anti-oxidant than any other cartenoid, including: vitamin E and A, lutein, xeaxanthin, lycopene. Astaxanthin is also one of the few cartenoids not to convert itself to vitamin A. This means astaxanthin is less toxic than any other anti-oxidant.

Generally I've found eating farm-raised shrimp and salmon to super beneficial for raising HDL. Both farm-rasied shrimp and salmon are fed cartenoid pigments (Phaffia Yeast) to increase their appealing red coloring. Otherwise, a fair amount of astaxanhin in harvested shrimp and krill is found in their shells. And while salmon have a fairly low amount of astaxanthin, or around 5ppm, it's found mostly in their flesh.

Therefore, I would HIGHLY recommend supplementing with astaxanthin, and eating more farm-raised shrimp and salmon to produce beneficial lipid profiles in a majority of people.

natural sources of astaxanthin
====================
salmon 5ppm
plankton 60ppm
krill 120ppm
artic shrimp 1200ppm
Phaffia Yeast 8000ppm

[Ray Holder]

Hi caf (Clare)

Reading your first post again, i noticed that your only symptom for Familial problems was the small Xanthelasma spots. I looked this up on google, E medicine, and FH only accounts for about 50% of cases, a low hdl/ldl ratio can be the cause, and you said your hdl was low.

I wonder what was your total Cholesterol figure to begin with, I believe the level at which FH is said to show up is about 8, which is what mine was, and still is after statin problems 5 years ago, but I started on a regime of cutting out pastry and shop cake with hydrogenated fat content, and it dropped to 6.9while I kept it up. Am I or am I not to be considered an FH case, my doctor has never suggested it, and I cannot find any trace in the family???

It would no doubt be a good thing to try to improve your hdl, not my department, I fear, but there are posts which could be helpful.

Hope you find some help

Ray

[Gembow]

Hi Caf!

My name is Gem. It`s my first post on the forum. I have visited a few times because I have a vested interest on what experiences people are having using statins.

I have a website on high blood pressure so I give people information on drugs that they probably are associated with.

I think you would benefit if you read The Great Cholesterol Con by Anthony Colpo. It will put you in the picture if you want to really take charge of your health. He gives you a lot of insight into the purpose of Cholesterol both HDL and LDL.

Try getting a good mineral and trace mineral ionic supplement to recharge your body and some strong antioxidants to help bring down inflammation caused by free radical damage.

Hope you feel better soon. :)

[kkolk]

STOP TAKING IT NOW... I have been permanently disabled by this drug and lack of response by my PCP and Cardiologist. I am furious...