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Posted: Thu Aug 13, 2009 7:04 pm Post subject: A long story, a few questions
A brief intro. I started Crestor in Jan 2007. I went to India that year for a prolonged trip and had to get a batch there. I had no side effects and the price was much better - I stayed on it until very recently.
Around June of this year I had strange symtoms: a "varicose vein" started developing and everytime I excercised it would "develop" further down my leg (yet more detail here: *http://www.spacedoc.net/board/viewtopic.php?t=1540). Fearing injury, I went to see an internist. I told him of all my issues with that (this led to ultrasounds from a vascular surgeon telling me my veins, valves, were fine and there was no sign of DVT) but my internist also asked me to get an ultrasound on my abdomen as I felt like some fluid was retained there at one time. Long story short - ultrasound let to 3 CT scans of my chest, abdomen and pelvis. Nothing of significance to note. A bit before my visit, I started feeling dizzy/lightheaded...at the time I thought it was related to my veins, circulation, excercise. As time went on it became more and more common - whether I was exercising or not (standing was enough, and eventually even sleeping). July 1st - I went to the ER - feeling short of breath, heaviness in my limbs. Coming from a history of heart problems - I went in. One day later, I was fine (no stroke, no heart attack nothing)- doc told me to stay on Crestor and take aspirin. I left still feeling dizzy/light-headed and a bit weak.
I came to a realization. Right about when my symptoms started in June I had run out of my batch of Crestor from India and started my Crestor from the US. I immediately started reducing my dosage, some days were strangely symptomatic, others I was feeling better. However the dizziness remained, weakness was building. I went in circles with a GI doc, ENT and then Ophthalmologist. They all recommended that I stay get off Crestor and see what happens - there was nothing in my abdomen that could be discerned by blood test, ENT reported a slight ocular abnormality that was never acknowledged by my Opthamologist. I was fine otherwise.
On July 21st I stopped Crestor altogether after having reduced dosage for a week or two. On August 5th, after coming to this site, I started 100mg of CoQ10 with Vitamin E. Two days later I started on the Kaneka brand recommended by some and am staying with that for now.
Almost within a few days I felt better regarding my dizziness/lightheadedness from taking the CoQ10. The weakness has been more stubborn and some days have been still bad. Last two weeks I've also noticed slightly blurred vision on occasion and a sensitivity to bright lights, this comes and goes, it's so subtle I don't realize it in the midst of the other issues. Some days I'm so exhausted all I can do is crash on the couch.
My questions for those still reading:
I have been taking a multivitamin with the Healthy Origins 100mg Kaneka CoQ10. Is a multi vitamin ok to take (ideally one that would cover some more of the necessary supplements, more later) or would direct Vitamin E be better? Can you recommend specific brands that have been recommended here before (for Multi vitamin and Vit. E)? Regarding the multivitamin - is there a recommended brand that would cover some of the supplements mentioned here: *http://www.spacedoc.net/aging_mitochondrial_mutations
I don't have a lot of pain at this point. Would you recommend that I start a doseage of acetyl-L-Carnitine? At what dosage would one usually start with and adjust as necessary? Are there any particular brands that have been better than others?
I realize a lot of this will be try it and see as I won't react the same as others, however any feedback you could give would be appreciated.
Joined: 28 Nov 2007 Posts: 462 Location: granbury, texas
Posted: Thu Aug 13, 2009 8:47 pm Post subject:
Start with 200 mg co-q10 and work up to 1600 I repeat 1600 mg over 2-3 weeks stay at that level for 3 months and rest---no exercise AT ALL...none take omega-3 fish oil 1,000 mg per day
NO niacin which is probably in your multi. B6, B12 & folic acid 100, 250, and 400 and magnesium (oratate) ...acetyl l-carnitine and alpha lipoic acid 400 and 200 mg is what I take now...don't remember what I started at..... you may br vit D deficient have it checked....I was already on 500 mg vit c x2 per day vit e may make the co=q10 less effective Sylvia posted some info on that recently but I too foggy right now to find it...
Is there anyone else experiencing/experienced blurred vision during their adventures with Statins?
I think this started a couple of weeks ago - but was so subtle and clouded by all the other crap I was feeling, I haven't noticed it much. But it seems the last few days this has become more obvious. I see spots initially when I go outside, it takes a second sometimes to see something clearly. There is a bit of sensitivity to bright lights (sunlights, computer screens, lights on cars). I just saw an ENT and Opthamologist (the ENT because I thought he coudl figure out an alternative for my lightheadedness/dizziness - he just agreed there was a slight ocular abnormality but wanted to see what getting off of Crestor would do). The opthamologist saw no problems whatsoever, I've never worn glasses. Both of these visits were within the last month.
Last thing - I upped my meager helping of CoQ10 (100mg -> 200mg) and had an evening of headache, nausea and an onset of lightheadedness/dizziness that seemed as if it was fading. I'm going to try to split a pill later today and see if it's easier on me...I've read that I should be seeing any issues with this until I get into the 1000s mg, so this is disappointing.
I will get on top of the rest of the supplements soon as my body will allow a visit to the grocery store. Thanks for the advice and thanks for reading.
Joined: 28 Nov 2007 Posts: 462 Location: granbury, texas
Posted: Sat Aug 15, 2009 3:48 pm Post subject:
sorry to hear about your problems with coq10 ...I had no peoblems all the way up to 1600 mg... but then headaches and dizzyness were problems I experienced with the statins for some time before I started the suppliments.... not so much nausea
My vision changed almost overnight during my lowest period, I believe due to the dehydration that comes with rhabdomyolosis. at the time I was requiring 130-150 oz of liquid per day and was only putting out 1/3 of what I was taking in (I measured in and out and kept a journal). when chronically dehydrated your body takes water from any internal source it can... once I started to replace electrolytes (by drinking gatorade only) all of the dehydration related problems disappeared...after a short time except my vision never completely recovered to its former state.
I do not recall if I was sensitive to bright lights but it's certainly possable...
How is your blood pressure? do you require more that 60-90 oz/day of fluids? are you experiencing constipation ? is your mouth dry at night? is your urine dark and/or cloudy? do you have kidney pain?
you might try gatorade or pedialite for electrolyte replacement an imbalance there can produce a host of symptoms
see this excerpt:
Recognize that lightheadedness, cramping, confusion, nausea, muscle spasms and twitches are all symptoms of an electrolyte imbalance. This can be caused from either too much or not enough fluid replenishment. Take steps to correct an electrolyte imbalance if you experience any of these symptoms.
[quote="eers"]Is there anyone else experiencing/experienced blurred vision during their adventures with Statins?
While on Crestor 5 mg, I experienced blurred, cloudy vision and sensitivity to light. I mentioned this to my Eye Dr. at last years exam. This years exam disclosed I have cataracts in my right eye, for which I will have to have surgery.
Just one year for cataracts that require surgery!
Google "crestor and vision problems", lots of info there.
Joined: 13 Dec 2006 Posts: 1136 Location: Fort Worth, Texas
Posted: Sun Aug 16, 2009 12:38 am Post subject:
The vision in both my eyes changed with statins. The blurring went away in time with the supplements (I suppose), but my vision is not at all what it was. As for the dizziness an headaches - CoQ10 does tend to lower BP, and if you have normal BP otherwise, you may be experiencing that phenomenon. I would not expect it at the 200 Mg level, but pop another 200Mg and get your BP checked at the market freebie unit. AND... Get your supplements from the internet - the grocery store will take you to the cleaners for the stuff! IHERB, VITACOST, NSI, etc. sites are all reliable.
I ended my previous life as a camel a few months ago and started drinking something like 4-6 16oz glasses of water a day. There are probably days where I don't maintain that, or maybe my body requires more. I'm going to try the "hyper hydration strategy" for a few days and bought some gatorade as well to see if this will help. This makes sense and I will let you know after a few days.
David, thanks also for the FAQ link in the other post. That was very informative and succinct version of what Dr. Graveline mentioned in his book. I think that is my next effort -- to go and try to get these through iHerb as they were very reasonable with the Healthy Origins CoQ10 I got there.
I will also check my BP - even when I was in the ER I've never really had an abnormal reading, so perhaps that could be it. I really want to get my CoQ10 level up and start the recovery.
The alternative is getting as much of all these supplements from foods - I don't know if I can eat that much liver but one step at a time.
Thank you all for the advice. I will let you know what develops...
Joined: 28 Nov 2007 Posts: 462 Location: granbury, texas
Posted: Sun Aug 16, 2009 6:52 pm Post subject:
I didn't hyper-hydrate just needed high volume of liquid and was craving salt...listen to your body.....a mantra I now preety much live by
also during the time I only drank gatorade I ate 2 bananas pey day
16 X 6 is 96 oz was that all you are drinking.. or was there other liquids? if so you probably are responding to dehydration 60 - 90 oz per day is "normal" I gage my position on the curve by how much liquid I'm requiring and when it starts to go above 90 - 100 oz/24 hrs I go inactive for several days to several weeks depends on how foolish I've been
you may not hear from me for a while.... aparently I've been quite the fool of late
My sarcasm doesn't translate well on these boards - "hyper hydrate" is a relative term for me as I know I don't drink enough water in all likelihood and you were probably very correct in your initial recommendations to me. If you can have an objective opinion in a couple of days - I feel a bit better and my vision has improved a bit after increasing my uptake significantly this weekend.
I'm usually eating a banana a day myself. It does energize me and it's usually part of my mornings. I think I will try to have another in the evenings.
96oz - I probably have some green tea on occasion or maybe something else, but for the most part I've stopped all caffeine and sodas so it's usually water. 96 oz is probably on the higher end for me frankly (that would be 12 - 8 oz glasses - of water a day for me) and I doubt I make more trips than that to the water cooler. I will keep an eye on this as well in the future and up it accordingly.
Please go ahead and take care of yourself. Thanks very much for all of your advice.
So yesterday ended early with a lot of fatigue and weakness. My walking was becoming a chore - I felt like I was disconnected from my feet and just dragging them around with me at points. Energy was totally in the dumps despite a lot of gatorade, fruit - although my body didn't want to eat all day. At 100mg of CoQ10 I thought I was not giving what the body needed...so I forced myself into another round of CoQ10 at 4pm.
Brooks, I usually take a 100mg tablet and then take another - I'm not taking 200mg at a time although that's a consideration for the future. I thought this would be more of a timing thing - too little spacing between the first dose and the second was the problem, so at 4pm I took my 2nd dose (first was around 10am) - last week they were more like 4 hours apart. I could definitely not make it into the drug store for the BP test, at least not this time.
Within 20 minutes I was feeling very jittery - as if I had 3/4 cups of coffee. It wasn't as bad as last week when I tried 200mg in a day for the first time. I don't have serious issues with the dizziness/lightheadedness. However, the weakness has not subsided, I'm definitely home bound today and thinking I should start another dose soon.
So...I'm also wondering if it's the particular brand I'm having a problem with. I'm using Healthy Origins Kaneka 100mg softgels. I was under the impression this is one of the best ones I could use...perhaps I should experiment with another. Does anyone else have any suggestions on that?
Also, I've been trying to avoid the temptation of shoveling all the supplements into me simultaneously just so I could have a better idea of what each is doing, symptoms and so on. But at this point, are there any others that folks have found useful for weakness/fatigue specifically to help? Maybe B6, B12 and Folic acid? I might have to brave a trip to the grocery store somehow for this (or anything else recommended). I don't really have a lot of pain at this point...the fatigue is the biggest hurdle right now.
Anyone suffering fatigue should try D-Ribose. I have been amazed.
My 80-year-old parents, who have always been "anti-supplement," both "confessed" to me recently that they THINK it is doing them a lot of good. I suggested they quit for a few days to see. Neither would !!
Don't play around with small amounts -- do that later on, if you want. Get a heaping FULL teaspoon and mix it with a fruit drink. (You must do that as you need to "untrick" the liver as it views this pentose sugar as a hexose and thereby inappropriately lowers your blood sugar for a while which does not feel good. If you put it in your coffee, add some real sugar along with it.) And do it three or four times per day every four or five hours. If it works for you, you will know in within 24 hours -- two days at the VERY most. If it does not make a difference you can feel, trash it: ADP disintegration was not your problem.
I do not have time to explain how it works, but it is on my list for a (potentially a Looooong) post before long. (Dr. Sinatra does a good job of it in one of his books.) I cannot guarantee that it will work for you -- it depends on the reason for the fatigue, but it is damn sure worth a try. If it works, like it did for me, you are set. Stuff is expensive though.
I get mine here, but most any such place should have it. Don't even think about trying to buy it at a supplement retail store -- if you can find it at all. It is easily twice as expensive and is only in capsule form. Forget the capsules.
Well I've started to go "all in" on the supplements. On the day I stayed home I bought B Complex (however this includes Niacin now that I recall. David recommended not taking Niacin, can someone explain why -- maybe I need to get something else). I also got Acetyl-L-Carnatine and Alpha Lipoic acid.
Yesterday I was able to surprisingly tolerate the second (collective 200mg) of CoQ10 and was feeling a bit better energy wise in the evening (I take it in the morning and again at 4/5pm). My feet still felt a bit strange and coordinating them was awkward walking around. In the late evening I took Acetyl-L-Carnatine.
Today I repeated the process - 200mg CoQ10, B Complex (w/Niacin), Acetyl-L-Carnatine + Alpha Lipoic acid. Tomorrow I'm going to try to ramp up to 300mg. Was still feeling weak but was able to leave the house, now just resting.
Biologist - I'm going to give D-Ribose a shot and put in my order. Let's see if I can start putting a dent in the fatigue.
I agree - I read a couple of posts about "overdoing it" and "paying for it later", I guess this was my first painful experience to enforce that lesson.
Last week was a little improvement and my enthusiasm and overgrown lawn beckoned me and well...here we are...
I have been keeping a detailed journal of all my meds, food intake and general feelings since I left the ER at the beginning of July. I think it's a good suggestion of yours to add exercise into the mix.
Well I got some blood results in, and I'm hoping someone can benefit from this and maybe draw some parallels.
A bit of history: I've been off of Crestor as of July 21st of 2009 completely. Since then I was experiencing severe fatigue, dizziness/wooziness, blurry vision, muscle twitches and a slew of other issues. On September 10th, I found I had a Vitamin D level of 16.2 and was put on 50,000 IUs per week. This dosage doubled as I was only at 27.7 a month later. Incidentally, although I've never took note of this before, on June 22nd I had a blood test that showed a TSH level of 3.22, which is considered borderline hypothyroid.
So I've now found another doctor who's done a complete workup and I'm generally satisfied with him, although I'm not sure of his outlook toward statins. He's at least VERY thorough and spent at least one hour personally attending to my interview/physical. The latest blood tests show:
TSH - 4 - I'm now being told to get on synthroid 75mg daily
Total Cholesterol - 279 (6/22 had this at 178)
Triglycerides - 190 (6/22 - 146)
HDL - 37 (6/22- 3
LDL - 190 (6/22 - 111)
Most surprising of all - Vitamin D at 38. Still on the lower end after nearly 5 months of supplementation (by the way - for anyone who cares I find that Nature Made tablets (not gel caps) daily are better than the prescription in my opinion. I take 6000 IUs/daily.
I would have liked to see my total cholesterol a bit lower, if only for psychological comfort, but frankly the last 8 months I've had nearly no exercise so that's probably a contributing factor. Also, at one point, I just wanted to eat real natural food - and wasn't being cautious about cholesterol rich foods (milk, eggs) vs not. I am going to try to pick up my exercise and work on some discipline with my eating and see where that takes me in the next few months.
I am also a bit relieved to hear that I have a thyroid problem. After this much time, so many doctors, the first doctor could have looked into the possibility of hypothyroid - that might in some cases contribute to "dizziness" I complained perpetually about, and definitely the fatigue and so on. And who knows how much of this is really interrelated between the Vitamin D deficiency, hypothyroidism and Crestor nearly killing me .
I haven't searched here to see if anyone else developed hypothyroidism issues post-Statins or maybe part of the "statin intolerance" could be associated with those that are hypothyroid? Who knows...but I'll bet it's one of us before it's someone in the medical community.
BTW, my sarcasm is still alive and well.
Thanks for reading and I hope the days ahead for all of you are one step better.
eers......I'm new to the forum. My statin story is long but very similar to those already told. I've been on statins for about a year, my first was simvastatin. To make a long story short, I was experiencing many of the same side effects, muscle pain and weakness, joint pain, fatigue...etc. This went on for months and I had not a clue as to why I was so tired and in pain. My Dr thought it might be simvastatin and told me to stop taking it and start taking Crestor 5mg. Again, could not tolerate it and have just stopped statin treatment two days ago.
I found your post regarding Vitamin D and thyroid levels very interesting. I have been on Synthroid for 25 years. Same dosage all that time, TSH levels never changed...ever in 25 years. I recently had a yearly physical with my PCP and my blood test revealed that my TSH levels dropped indicating hyperthyroid AND my vitamin D level was very low....16. I was put on 50,000 IU per week for 3 months. I just started my third month. Also, my Synthroid has been reduced.
I've read posts from others complaining of low levels of Vitamin D and thyroid levels while on statin therapy. This cannot be just a coincidence!!
BTW, I'm 55, in good shape, cardio and strength train 5 days per week. Although, it has been a struggle to workout at times.
Not looking for a reply. Just wanted to share my thoughts.
I am suffering from statin drug damage and I am a mod. at a Thyroid forum for men only. I have been at this many yrs. I started going to this site when I found out my Thyroid and Cortsiol levels were low.
At this forum they are down on T4 only meds like Synthroid and use NTH meds like Armour.
Problem is the FDA pulled Armour off the market some time ago. We were left out in the cold looking for other NTH meds. Now Armour is back on the market but it's changed and does not work as well as the old Armour.
So now most of us are on Synthroid meds but we also take some T3 only meds with this called Cytomel I add 5 mcgs 2x's a day and find I feel as good on this as I did on Armour the older brand.
One thing I found out about Dr.'s that treat and dose people using TSH labs are they don't know what there doing.
I have found Endo's are not good Dr.'s for this problem in the USA. The TSH is the message from your brain the Pituitary that tells your Thyroid to make more Thyroid hormone. So as your on meds and take supplements that help the Thyroid meds work as your levels go up your brain sees this and stops sending this TSH message to your Thyroid to make more because you don't need any more.
But you don't want to drive TSH to zero because your brain makes some Thyroid hormones for it's self.
I have lost count how many times my wifes Endo when she seen one lower her Synthroid meds because he only tested TSH. Then she would have a set back and he would tell her she is Depressed.
One needs labs that test Total T4 & T3 and they need to be up pasted mid range. Also one needs Free T4 & T3 tested the Free T3 needs to be in the upper end of the range some need it pasted it to feel better.
The forums much like this are good for finding help on Thyroid.
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