Co-Q 10 questions...

[Cry Tears]

Hi anyone....I'm needing some info on this suppliment.

Short version:
Is there any contraindications taking the Co-Q 10 with my medical history?
Do any of you take this...have you found it helpful?
Is there any problems I should be aware of in taking it?
Will it make me skinny, happy and rich?
Will I be able to play the "Warsaw Concerto" in Carnegie Hall this weekend?

In put from my fellow BT sufferers is much appretiated! Thanks, cheryl

Heres the long version that gives some of my med history:
My veterinarian....hubbies best freind said that I should really take it, that it will help with my joint pain, auto immune problems...
I have Crohns disease that is really flaring pretty bad right now.
I am nauseated any time I think about eating...am living on soda pop and Zofran, a very spendy nausea pills @ $30 a pill...if I'm doing my math right!

Anyway...I don't absorb well and food passes too quickly thru my system.
Some times I do absorb just fine and get over dosed while other times I'm very deficient.
I began having IBS soon after my total historectomy when I was 36..they took everything!

I have Hashi Motos (Hypo Thyroid body temp always under 97* even on the hottest day) so that keeps me unthin....notskinny....toofluffly....OK: fat!

I also have harmonal issues....can't play worth a dang!
So I wear a vag Esta-ring, and a wedding ring!

I had a gallbladder surgery go bad....got a nerve damaged in my bile duct.
Nothing can be done to fix me...so I "live" with pain in my side that goes clear to me back.... that grabs me when it spasms.

I also had a baseball sized intestinal AVM...Arterioveinous Malformation (Basically an anuerism that bleed for years leaving me severely anemic.)
For more than 2+ years I'd have bi-monthly blood transfusions. It was a virtual nightmare.
It was found by accident when I swallowed the little camera pill...battery died, got stuck in my intestines...opened me up, nearly half my small intestines diseased from the Crohns...they removed nearly 3 feet in 2 places and after surgery I had numerous complications...it was a long 17 days in the hospital that fall.

Iv'e had numerous bowel obstructions perhaps from the prior surgeries where they replumbed my guts, or more diseased intestines. Usually happens in the fall...3 times I've ended up spending minimum of one week in the hospital with a nose tube down my nose....hate that!

I was NEVER advised to take B12....began to suffer many more puzzeling symptoms...loss of balance, burning lips, Peripheral Neuropathy a moderate level of classic sock glove pattern. Severe fatigue. Mind confussion, deep depression. Muscle twitching and charlie horse spasms. Severe fatigue.

Very hoarse voice, finally DX as Thyroid disease. Couldn't chew due to muscle weakness...difficulty swallowing...I drueld constantly.

I was DX with Fibromyalgia years ago after increasing IBS symptoms.
I have chronic bladder and sinus infections.

Very Painful intercourse DX as knotted muscles at the trigger points....
There is help for this! Physical therapy! Really does help. But a hassel.

It hurt my spine to put my chin to my chest.
I had brown spots in my vision.
Muscle weakness 1st DX as Polymyositis..
then changed to Peripheral Neuropathy, then thought I had ALS:eek: ...more testing proved not..thank God!

I NEVER have headaches.....knock on wood...now that I've said it.

I finally found BT...where I read about B12...began taking it and within 10 days I began to heal. Its not been easy because of the other health issues.

Boy am I rambling...sorry...but need to give you the entire picture.
I take Immuran for the Crohns....low dose Chemo therapy
Prednisone 10mg day...for the Crohns.
Synthroid for the Thyroid
Stuff for pain on bad days....not the smoking kind tho.
B12 and other vits and mins. also condrotants for my joints.

Thanks! Cheryl

[annelb]

CoQ10 is generally thought of as safe even in large doses. Here is the PDR site http://170.107.206.70/drug_info/nmdrugprofiles/nutsupdrugs/coe_0084.shtml

Although the PDR site mentions GI problems with dosage as high as 200mg. this abstract says that the GI symptoms cannot be related to dosage. Also dosage up to 1200 was thought to be safe. Risk assessment for coenzyme Q10 (Ubiquinone). http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16814438&query_hl=1&itool=pubmed_docsum

Coq10 is being looked at for neurological diseases, mitochrondrial disorders and heart disease.

I take 150mg of Coq10. I started it years ago because of heart disease. The heart needs a good supply. I have no idea if that is the correct dose for me. My cardiologist says he doesn't see a problem with that dose. I have gluten sensitivity/celiac disease and do not have any GI problems from CoQ10.

The only downside I have found is the expense.

Good to hear that you are doing better on B12. It is sad that doctors don't often check for the things that could be taken care of easily - like vitamin deficiencies.
Anne

[mrsdoubtfyre]

but with your issues, you may not reliably absorb it.

CoQ-10 is touchy, and some brands do not work at all.

Try this source, for one of the quality types:
www.epic4health.com

[annelb]

If Q-gel is better absorbed should I decrease my dose if I were to change to it? I currently take Sam's CoQ10 150mg.
Anne

[mrsdoubtfyre]

That is a hard question to answer.

It is really difficult to know if CoQ-10 is being absorbed. This is the main reason I was told by a doctor once why Merck did not pursue the combo product with CoQ-10 and Lovastatin.

I think that if your gums are doing well, and skin, etc, at the dose you are using, then it should be fine. But people like Cheryl with GI pathology and possible poor absorption, would be more of a unique case, where the
better product should be used. 150mg of CoQ-10 is not alot. If you read the Parkinson's literature they are using MUCH higher doses. Same with the Ataxia group.

If Cheryl is NOT using a statin which would block synthesis, then her own liver should be making some CoQ-10 for her. We all do basically. I don't think we know enough to explain the effects of very high dosing in PD... it might be a genetic issue, etc. So really exact answers are not possible now.

Theoretically you could lower your dose with the Q-gel... but I think with all the stuff many of use, cost is a factor as well. It is really up to you in the final analysis.

[annelb]

Thanks, MrsD. Since going gluten free my gums are in great shape and my skin looks so much healthier. I still show malabsorption on Enterolab stool tests - hope next year's results will look better since I have gotten rid of some hiddens sources of gluten.

I think I will stick to what I am doing for now but will keep the info on the Q-gel for possible future use.
Anne

[Cry Tears]

I didn't realize this is made by your liver...interesting...
My liver is enlarged and very dense, I had Hepatitis type A 35 years ago....so this makes for even more reason to take a higher doseage....seeing it is rather benign in nature.
I'm not taking any statins...cholesterole lowing drugs...me cholesterol level was 180...so I'm not worried about that....and I'm mostly vegan....but not 100% as I'm eating more and more because of my Crohns.
I am having some serious naseua issues....can hardly eat anything as I will just vomit it back up.
Time for more ERCP's....think the Crohns is traveling faster than I am. Gosh, does my body ever stop trying to kill itself!
At least I'm not hearing voices yet....slapping forhead saying "Shut up,all of you!"....OK...I'm nearly there.....this is driving me crazy....and I'm hating this driving the big white bus!
Went out to dinner with hubby last night....fancy place....had to literally run outside before I lost what I ate. I'm downing Zofran...anti nausea meds @$30 a pill! Thank God for insurance! But this is getting to be too much lately.
Hope its JUST the Crohns and nothing else.
Blessings,cheryl

[orthomolecular]

There is actually one amino acid that is recommended for people who may have malasborption problems from gluten issues. I am sure they can give you more info on this in the Gluten Sensitivity / Celiac Disease page of this forum.

[Stacey]

For those wondering about absorption and dosage levels. I take Co-Enzyme Q10 in a special delivery system called Isotonix. Some of you may have heard of this, it's pharmaceutically manufactured to be isotonic so that it will deliver over 90% of the ingredients to your system without any being broken down from acid in your stomach. I take 300 MG, but this is what my doctor has recommended for me.

[Stacey]

In other words, Isonotix are in a pre-digestive form, therefor your stomach doesn't need to break it down so it's directly absorbed into your body through your small intestine.

[nopain]

Soda pop is one of the worst things you can put in your body if you have any kind of mineral deficiency.

Soda Pop ranges in ph from 2.8 to 3.4. Your bloods PH is 7.35-7.4 get this out of range and they shovel dirt over you head.

The PH Scale is logrithmic. So a PH of 3 is literally 10,000x more acidic than where your body needs to be. So what your body does each time you drink soda is pull minerals - generally calcium from your bones, teeth, and wherever it's most convenient into your blood Ca++ Ionic Calcium neutralizes this attack and balances your blood PH.

Sodas with caffiene are even worse as they also impair bone maintenance.

It's contradictory to think one can be healthy and drink large amounts of Soda Pop.

You can buy PH Test Strips and see just how acidic you are right from your own home. I've tried several but the ones I like are from a company in AZ. You can buy them online at http://www.ph-ion.com/ (I am not affiliate with this company)... they also sell cleanses and greens and the like, but I've only used their strips.

It's a tall order to balance Alkalinity with foods, and keep track of Glycemic Foods and throw in all the minerals we need.

But you can certainly help you overall health by giving up the soda.

[mrsdoubtfyre]

I agree that soda is harmful in quantity (not occasionally for a treat).
Each time you drink a soda you are missing nutrients that other drinks may
provide. Sugared sodas contain high fructose corn syrup and this is very bad for your liver in high quantities, and is thought to be a possible contributor to
diabetes (acquired type).

The stomach however is naturally acidic(typically MORE acidic than any drink), unless you artificially remove the acid with drugs (Prilosec or Zantac etc) and or antacids.
The pH of the stomach is actually higher than most sodas'
http://www.madsci.org/posts/archives/may98/892927858.Ch.r.html
Sodas that contain phosphoric acid, prevent calcium absorption by the body, by
the content of the phosphate, not the pH. When the stomach dumps into the
small intestine, bicarbonate neutralizes the acid, and any calcium present in the food just eaten, can combine with the phosphate in the drink, to make that
calcium not available for absorption. Drinking very acidic drinks CAN however, leach your tooth enamel. Not all sodas contain phosphoric acid.

If you have pancreatic disease, then you cannot naturally buffer your stomach contents well, since the pancreas is the main source of bicarb.
And if you have renal tubular acidosis, you may have blood acid issues, caused from that.

But we do need acidic conditions to absorb B12, iron, calcium, folic acid and zinc. These nutrients are blocked by making the stomach less acid.

The very narrow range in pH that the blood has, may show trends (not extremes) for various reasons. Hyperventilation, or holding the breath,
renal issues, diabetes, extremely high protein consumption, some drugs,
can push you to one or the other extreme. But we cannot live outside
the normal buffering range.
Blood pH is a very complex system:
http://www.chemistry.wustl.edu/~edudev/LabTutorials/Buffer/Buffer.html

Excessive consumption of phosphate is thought to upset the balance in bone maintenance.
http://72.14.203.104/search?q=cache:SA-4iqAtu7YJ:www.lf3.cuni.cz/studium/materialy/vnitrni_lekarstvi/Bone.doc+excessive+phosphate+bone&hl=en&gl=us&ct=clnk&cd=7

The metabolism of phosphate is very complex... as the above link shows.
Vit D is involved, calcium, presence of other drugs, disease states etc.
http://www.nlm.nih.gov/medlineplus/druginfo/natural/patient-phosphorus.html

Excess phosphate intake also leads to low magnesium:
http://www.traceminerals.com/research/magnesium.html

[Aja]

I don't post much, but I was checking in after a long absence and saw your message. I am taking Co-Q 10 and believe it is helping. Anyway, I have to say in spite of all you are dealing with, I couldn't help but notice your sense of humor and your great writing style! You are talented! Good luck with the meds and I wish you well!

Aja:)

[Jonathan Steele]

With your condition the isotonic form would probably be the best for you.

However, have you or your husband ever heard of boosting your intracellular levels of glutahtione? It is done by foods or two different kind of supplements, both of which are in the PDR.

Glutathione is the master antioxidant so it trumps Co-Q 10 so to speak. It also helps with the neruopathic pain and about 27 other things. The same source of undenatured bovine whey protein is used in dogs with similar exciting results.

You can also get a chemical version of it.

I could not find any studies directly looking at your condition but there are over 100 K studies on it in various forms and most major diseases. In almost every case, (yours included) there is a decrease in glutathione (as is Co-Q 10.

The difference is that since the GSH is the master antioxidant, all other antioxidants depend on it to fully facilitate their action.

Next time I am at a seminar where this is being discussed, I will run it by the doctors.

The results for the diseases it is used for are outstanding.

Best wishes.

[Kira]

I know this is an old post but I wanted to say that, as a patient with mitochondrial disease, I am well-acquainted with CoQ10 and have a couple of comments.

First, the Tishcon CoQ10 (www.epic4health.com (http://www.epic4health.com) or Q-gel) that people were talking about early in this post is widely regarded in the mito world as high-quality. It has been used in many of the clinical trials for CoQ10 use in mito and is thought to be well-absorbed. Tishcon CoQ10 is available in several different brands of OTC CoQ10 though... they make the CoQ10 part and then some OTC company puts it in a pill and sells it. Off the top of my head, I can't think of all of the brands, but it can be googled.

The other thing to know is that there are two types of CoQ10 available... ubiquinone and ubiquinol. Ubiquinol is harder to find but is the active form and is considered better. Look up Cyto-Q's website (Solace Nutritionals) to read about ubiquinone vs ubiquinol. However, Cyto-Q is only sold as an FDA-approved medical food for people with inborn errors of metabolism (specifically, mito) and you have to send paperwork that it was prescribed by your mito doc and you have mito to order Cyto-Q online. BUT there are other brands that cell Ubiquinol instead of Ubiquinone.

In terms of the safety of taking very high doses... I can't comment on anyone's particular medical condition... but I do know that those of us with mito are prescribed extremely high daily doses of CoQ10 and the only side effects seem to be some minor GI upset when initially titrating doses upward, if anything. I take 1600 mg/day (divided into 4 doses of 400 mg) and go through hundreds of dollars' worth per month. I don't think that there would necessarily be a benefit to taking so much if you didn't have a mitochondrial disorder, but for me it is a crucial med. This is because I have a genetic defect in a mitochondrial enzyme called NADH Dehydrogenase 5, which is part of Complex I... Complex I directly passes an electron from NADH to Complex III using CoQ10, so having enough CoQ10 directly addresses an aspect of my disease. Plus, people with mitochondrial disease have to be particularly careful about taking tons of antioxidants because we are prone to accumulating more oxidative damage to our mitochondria, which causes disease progression... and CoQ10 is an excellent antioxidant. Also, you can get secondary CoQ10 deficiencies when you have mito, although my labs have shown that I am fine with CoQ10. I do have various other secondary metabolic deficiencies (Complexes III and IV, carnitine, fatty acid oxidation) from my Complex I deficiency... but CoQ10 is okay, and they STILL want me to take boatloads of the stuff.

It is expensive, and the more effective forms are even more expensive (Tishcon, ubiquinol). Cyto-Q is really expensive but some insurance companies are starting to pay for it for mito patients since it IS FDA approved as a medical food for patients with inborn errors of metabolism... though many insurance companies (including mine) keep denying coverage. Actually, for a few years, CoQ10 in general has had FDA approval as an orphan drug for mito, Parkinson's, and some types of pediatric heart failure... but insurance denies it despite repeated appeals even though it is an essential part of mito treatment. Tishcon CoQ10 is currently in Phase 3 clinical trials for mito, so hopefully the insurance situation will change soon. Right now it is ridiculous... the won't even order it in the hospital and I have to bring my own to take, even when I am admitted with severe mito flares. It is not cheap, especially when you go through 8 200-mg caps per day and go through a $25 bottle every 3-4 days.

[pab]

kira, have you tried appealing their denial of payment thru your state insurance commission?

[Kira]

kira, have you tried appealing their denial of payment thru your state insurance commission?

We haven't gotten to the level of state insurance commission yet with appeals, but may need to in the future. Right now the next step is apparently to appeal with the agency that coordinates benefits for state employees (which is who administers my insurance and pharmacy benefits manager). I am not sure what is going on with that appeal but know that we sent in paperwork a while ago. Probably due for a phone call...

We (metabolic genetics clinic and me) have had quite a conflict with the inpatient pharmacy folks, too. They also have an appeal process to get meds added to the formulary. They keep saying that they can't add CoQ10 because it isn't FDA approved and so they can't guarantee quality of the manufacturing process... I keep saying that it actually IS FDA approved if they order the right brand (Cyto-Q), just FDA approved as a medical food instead of as a drug. And also that the Tishcon CoQ10 is FDA approved for pts with my disease, as an orphan drug. Of course it is much cheaper and easier for them to tell me I have to just bring my own. I don't actually mind bringing my own since I would have to pay for it anyway if I were at home... the problem is that it is a crucial med for me, especially during mito flares, and if I didn't happen to bring it with me (such as during an emergency admission) then under their current policy I just plain wouldn't get it while hospitalized. I get hospitalized FOR MITO FLARES and yet they won't order a med I need FOR MITO FLARES... their excuse is that it isn't FDA approved and yet it IS FDA APPROVED... we have showed them paperwork and websites over and over about this but keep getting hung up in their red tape because this formularly committee has to actually bother to meet and approve it.

I can't wait until Tishcon finishes the clinical trials (currently in Phase 3) so we can get "real" FDA approval for our med rather than just the "medical food" FDA approval we currently have for the Cyto-Q.

Okay enough venting... Sorry to get a bit off-topic.