CoQ10: I’m new here. Am 73 years of age... - Early CKD Support

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CoQ10

HRWB profile image
HRWB
19 Replies

I’m new here. Am 73 years of age; CKD stage 3 - egfr currently 54. Has anyone with CKD used Co-enzymeQ10 as a supplement to boost energy? And what strength?

What are the pros and cons of this supplement for those of us living with CKD?

Any advice appreciated.

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HRWB
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19 Replies
rebeccalloyd profile image
rebeccalloyd

There are a couple of replies from a year ago on this site from members:- healthunlocked.com/early-ck...

rebeccalloyd profile image
rebeccalloyd in reply to rebeccalloyd

And I found this which suggests caution:- webmd.com/diet/supplement-g...

HRWB profile image
HRWB in reply to rebeccalloyd

Thank you for those two links. Unfortunately, the webmd site doesn’t explain why the need for caution in the case of CKD. It would be interesting to know the ‘chemistry’ behind that statement. I guess it is a case of keeping a close eye on blood test results to monitor any significant changes.

Lynndeb profile image
Lynndeb

Hi HRWB

I was diagnosed with CKD 3 just over a year ago with an eGFR of 63 and creatinine of 98. Since then I've bounced from an eGFR of 43 to my current 68, and creatinine of 119 to my current 77. Like many, I was 'officially' diagnosed after I'd obviously had CKD stage 3 for many years... I think the above fluctuations are all based on how hydrated I was and how much protein I'd had leading up to each test - this is my guess.

I have ME/CFS and I've been taking CoQ10 as Ubuiqinol for many years, and I don't think it has had any negative effect on my kidneys. Here is a link, which might help you: prohealth.com/library/dr-sa.... The Dr Myhill has a lot of information on her website regarding energy.

As I've been typing Rebeccalloyd has posted an interesting article on CoQ10, but personally, I haven't experienced any side effects, but we are all made differently. I used to take 100mg daily with oily food, and now as my levels are low I take 200mg daily, and this has been prescribed by the doctor helping me with the ME/CFS symptoms. I'm 69 and I've been taking it on and off for the last 12 years.

Have you had your iron levels checked, especially B12 and Ferritin...

All the best, Lynn

HRWB profile image
HRWB in reply to Lynndeb

Thank you very much for the link and details of your own personal experience relating to CoQ10. The report by Dr Sarah Myhill is very interesting indeed. Like you, Lynn, I have been diagnosed with ME/CFS - but that was when I was a teenager. Back in 1955, it was referred to as Royal Free Disease! The ‘label’ and the understanding have moved on since then. However, although my legs were paralysed for some time, I recovered, returned to school and have since led a full life, despite always being lacking in energy.

Last year, I was prescribed Atorvastatin (having resisted such medication for thirty years!). The side effects were extremely debilitating, so I am no longer taking statins! I decided to try 100mg CoQ10 to aid my recovery. The effect has been wonderful and I now feel well again. My concern relates to any long term effects on CKD, but your experience is reassuring. As you say, we are all made differently - but I appreciate your positive reply.

Thank you - and best wishes for your own recovery.

rebeccalloyd profile image
rebeccalloyd in reply to HRWB

I've been prescribed Atorvastatin because of slightly raised cholesterol and slightly raised blood pressure... just like that. No advice about what I could do to lessen cholesterol given that I don't eat any junk or processed foods. So my latest effort is to eat a lot more fibre in the form of porridge oats and wheat dexterin, hoping that it will lower cholesterol, and as far as the BP is concerned, I have my own blood pressure monitor and I'm going to take the average and use that in the Qtest that the doctors base their diagnosis on re CVD or heart attack/stroke, given that my blood pressure taken in the surgery is always going to be above my norm. NICE, the people who control much of what can happen medically in the UK, reduced the cutoff figure on the Qtest from 20 to 14 a few years ago apparently, which means most people over the age of 75 in the UK will be offered statins. Can you believe it? The Qtest taken for me was 14, hence the statins. I've found the Qtest online and have been taking my own readings. I'm not there yet, but I'm working on it, I think the important bit of the maths in that test is the cholesterol level. Whatever the outcome, I'm not taking the statins, I have decided. If I had very furry tubes and a great banging heart, I might do. But at this stage, I think it's madness. Psychologically, it would put my in the fading-away-old-people category. I ain't going there, I'm only 71. The outcome of a Qtest of 14 means that out of 100 people in a room, 17 of them will go on to have strokes or heart attacks in the next 10 years. I don't mind those odds quite frankly.

HRWB profile image
HRWB in reply to rebeccalloyd

It sounds as if you are doing the right thing and taking responsibility for your own health. My experience is that here, in the UK, GPs rarely offer any advice to patients. If a prescription cannot solve the problem, then we are left to our own devices. That is probably partly due to the pressure on GPs in the current NHS climate and partly due to the minimal training in diet and nutrition that is available to doctors.

Since stopping Atorvastatin, I have turned towards a more plant-based diet plus fish. No dairy, no added salt, low sugar and red meat only very occasionally. It isn’t easy to balance the fats, carbs and proteins in a way that will encourage a healthy heart and healthy kidneys.

I wish you well with all that you are doing to improve your own health situation. I’m sure you have made the right decision.

rebeccalloyd profile image
rebeccalloyd in reply to HRWB

Lots of fish! Just discovered sardines, perfect oily fish. You are right about how little doctors in the UK can do. Diet has to be most if not all of the solution.

HRWB profile image
HRWB in reply to rebeccalloyd

Yes, sardines are definitely a good source of Omega3 for heart health. Unfortunately, those of us with CKD need to eat sardines with caution. They have a particularly high level of purine - (as does alcohol and offal). Salmon is a safer, heart-healthy fish. Purine breaks down to form uric acid in the body. When kidneys are working less efficiently, uric acid can build up to trigger a flare up of gout - which is extremely painful! See goutcure.com for a chart of food purine levels.

Happy eating!

rebeccalloyd profile image
rebeccalloyd in reply to HRWB

Ah, I see. I will take that on board. Thank you HRWB.

Lynndeb profile image
Lynndeb in reply to HRWB

You're very welcome and I'm glad it was of some help. How amazing that you should make such a recovery when you were so severely effected by ME/CFS - I very much doubt that you had any help in your recovery.

Thank you very much for your good wishes, and I too wish you very good health.

Bunkin profile image
Bunkin

I’ve been taking it 3 years now. I use it to help control bp. No bad effects for me

HRWB profile image
HRWB in reply to Bunkin

Thank you, Bunkin. Three years is a reasonable test period. Pleased that you have no adverse effects. That is reassuring.

Sally10255 profile image
Sally10255

my kidney doctor doesn't take much of anything and suggested to me to think of everything going in as needing filtered. So I don't take vitamins, supplements, etc. My bp is really controlled by lots of cardio, water, and little sodium.

HRWB profile image
HRWB in reply to Sally10255

Thank you, for your reply. From the point of view of kidneys, your kidney doctor is, no doubt, 100% correct. But we have to take care of the rest of the body, too!

If diet can provide all we need, that’s fine. As we age, the body produces less CoQ10, but it is difficult to supplement enough from diet alone. Do we look after our heart or our kidney? We need both, so have to support each, without harming the other. That is where I am at.

But I am happy to stand corrected. Always open to advice - and appreciate contributions on this site.

Sally10255 profile image
Sally10255 in reply to HRWB

greatest of luck!! It is tough to wade through all the advice.

HRWB profile image
HRWB in reply to Sally10255

You are quite right! It is really tough to wade through all the advice - especially when so much of it is either conflicting advice, or not supported by scientific evidence or indirectly promoted by some pharmaceutical company hoping to reap in the profits.

That is what makes all the personal experiences on this site so valuable. It is a genuine reminder that we are all different and will respond in different ways - but it is still helpful to exchange those views.

Sally10255 profile image
Sally10255 in reply to HRWB

so true. When I had my kidney stone, I found out pain meds are bad, now stomach meds bad, U bet so much is that we don't know about. I read like 38 million have kidney disease and most don't know it. Mine was discovered with blood work, a few tests, then a 6 mm kidney stone just decided to move on down. . Probably been there for a long time destroying kidney.

HRWB profile image
HRWB in reply to Sally10255

As you have discovered, medication is not always the answer. I hope that you will read widely to find the right answers to your health issues. Best of luck.

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