HbA1c you later! Diabetes and M.E. in combo

Here's the promised update on the diabetic clinic yesterday afternoon.

Nearly an hour's wait. Not too bad, then! A nurse came specifically to tell me I would be next in to see the principle diabetic and endocrinology consultant Dr M.

I was the most compliant and least disgruntled patient in the impatient waiting area. As usual. Others were getting sarcastic and restive. As usual. So why she bothered  to come to me to do any special pleading I have no idea. Perhaps she was disarmed by my wry smile of understanding I flashed at her as she beetled in and out of the blood pressure office laden with files and test results.  I wasn't even next one in, either, as it turned out.

I could see from the boards that the other two registrars, Dr V and Dr H, the female doc I'd seen the last two times, were also seeing patients. I had seen the male registrar pop his head out the door while I was in the "weeing and weighing" curtained-off area while I was being checked in, standing on the scales with my sample bottle held in one hand.

I managed to balance without my walking stick for the duration of the short session behind the curtain. I leaned on the wall in between the weighing and measuring shenanigans. Not during, or I might have appeared to have taken off several stone in weight, or, possibly, to have smuggled in stones in my pockets. It has happened in the past, I'm sure, considering the hard time diabetics are often given, whether under or over the prescribed BMI. I'm fortunate since carb counting began to be well within the limits, even erring on too thin if I don't watch it. "You haven't got a bum at all, have you?" Unquote.

Blood pressure was a bit up, but not alarmingly. White coat syndrome, or just the strain of negotiating a draining walk and bus-ride to the hospital, already using up most of my precious M.E. energy "spoons" for the day. The overhead lights in the Outpatients Clinic are like lasers beaming mercilessly down into your eyeballs. Speaking as an ME patient. I wished I'd worn my shades. The floor was already feeling like a cakewalk by the time I was finally summoned in to Dr M's office.

He acted delighted to see me. Apparently I haven't actually seen the head honcho since 2004. He remembered me fondly. And vice versa. He's a cheerful, professional doc you can trust and also have a laugh with. He remembers me pre-M.E. diagnosis in 2006, but unlike his colleague, Dr V, he knows my GP and knows from my history that I have M.E. now complicating my Type 1 so didn't ask "Why do you use a stick?" or wonder if it was diabetic neuropathy-related.


Yesterday, for once, there was no pricking-your-feet-to-make-sure-you-can-still-feel-them or inspecting the bruised and atrophied lumpy injection sites. No stripping at all, yesterday.


It was almost a full pat-on-the-head, the lass done good day, this time, to my immense relief.


Last September, last check-up, my HbA1c result (the "lie detector" actual three month snapshot of average blood glucose control) was a perfect 6.9%.


Yesterday it was an even more delightful 6.1%, a drop of .8, which had us both beaming. I'd felt that I'm probably not quite so exact now with all the carb measuring and lo-carbing as I was then, so I certainly must be getting it. 


"You certainly HAVE cracked it," smiled Doc M.

From other things he confided, I guess I'm in a minority of those who take carb counting principles seriously on board and make them work for their diabetes. It has so transformed my diabetic control, I'm quite evangelical about it still. I know others don't find it so helpful, and the take-up for the carb counting courses and D.A.F.N.E. training, by the way Dr M spoke, seems to be very low still. Sadly. I wonder how long the Diabetic Education and Resource Centre will last in the current economic cuts?


He wants to check me in another 6 months for liver function, as this can be damaged over time by the Ibuprofen I am regularly forced to take to combat nerve and muscle pain from the M.E. Not that they really help, and not that I have ever once taken any tablet more than I feel is absolutely vital.

I confessed I had even discontinued the lunchtime Metformin dose as I'm hypo so often. Taking less insulin, while keeping it enough to cover my needs, when my sugars suddenly take on a life of their own when I'm ME crashed or sick, is always a challenge.

The frequent hypos they have tried every which way to tackle, remain. The hypo warning symptoms they struggled for over a year of experimenting to give me back, are still stubbornly absent, until I fall as low as 1.9!  Most folk, as Dr M admitted, would have been comatose before they got to that figure, or rushed off to A&E under a blanket with a glucose drip in their arm.

My retinal screening improvements delighted Dr M. If it wasn't now for the M.E., I'm a model Type 1 in many ways. A success story for the department, as they are for me, after so many idiotic diabetic clinics over the 27 years since my pancreas turned up its toes. The M.E., however, can still demolish my best efforts at good diabetic control in a second. For hours. Or days. Or months at a time.

The only cloud on the horizon, albeit a predictable one, is my cholesterol. It had been perfect all the years I was taking Simvastatin. But the same drug, as for so many others, particularly M.E. patients, seemed a suspect in so many of my side effects that, on the advice of a nurse and Dr H, I tried to go without it. It's a few months now that I've not been taking my statins. No surprise, then, that my cholesterol had climbed unchecked above the acceptable 4 into the 6 range again.


Dr M empathises, and isn't sure how it'll work, but is now trying me on the lowest dose (10mg) of Atorvastatin (Lipitor). We'll see how it goes. If that doesn't work, we'll need to think again whether the cholesterol is such an issue, balanced against the M.E. side-effects. As ever, I'm totally willing to try anything. What doesn't kill you, makes you stronger, if only in depth of experience!

CoQ10-ergy! Still hoping!

Well, it's been over a week now that I've been trying the CoQ10 and stopped the statins. Time for another quick catch-up!

The pitch has been queered a bit this week as I developed a cold which forced up my blood sugars and left me achey and feverish.

However, the cold has dried up very quickly (by my own horribly low standards of recovery speed!). My throat is  quite sore, still, which is either from the cold, or maybe the typical M.E.-type of razor-bladey throat.

My Mum was over at the weekend as usual to help with domestic stuff. The weather was so beautiful last weekend here in northern England. Warm temperatures up in the 60s, sunshine getting everyone out in the gardens. Mum,  bless her, gave my back lawn its first taste of the lawnmower this season, while I pottered, sitting down on a chair most of the time, to do a spot of pruning. 

I managed well enough, with frequent rests and naps to keep me going, but considering I had a virus this week too, I'm really pleased to have achieved as much as we did.

I've had plenty of "payback" from that activity since then, in the first three days of this week. (The sun's taken its hat back off and the temperature has plummeted!) But on the whole, since stopping the statins and taking the CoQ10, my head has felt "clearer" and I've been able to wake earlier and felt more alert, I think. 

My current dose is about 100mg CoQ10 a day, taken in the morning. This means taking 10 capsules of 10mg, from a bottle of just 100! As you can guess, this is rapidly diminishing the stock of pills. But I have some more on order, the cheapest I could find online from a company doing a BOGOF (buy one get one free) deal. The new tabs will be a higher dose of 100mg each, and I'm getting 30 capsules with 30 extra free for £14.99 from a company called "Simply Supplements" at 

www.simplysupplements.net

I did some comparison of the prices per mg of more than a dozen brands and this was the cheapest I found online. However, after clicking send, I realised I hadn't compared the unit price of the Holland and Barrett original purchase from a branch in town. This actually proved the cheapest (about 10p per mg compared to 24p per mg). One online pharmacy was actually charging 99p per mg, while most seemed to be about the 50p mark. This is frankly unaffordable longterm, but if I am convinced of their good effects, as I said before, I can just keep them in reserve for days of particular energy need.

The original Enada Nadh has quickly run out, and as it has a very similar function to the related coenzyme, I am persisting with the readily available  CoQ10 alone. Mainly because it is well documented in the M.E. community and also among the statin takers of the world, of whose number I'm a member on both counts!

I've slept quite well, most nights, and the main difference is a clearer (if not totally clear!) head. I still struggle for words and co-ordination when I'm getting tired etc, but onward and upward! I don't think I'm as itchy as I was prior to stopping the Simvastatin. A patch on my left shoulder blade has calmed down a little.

Sadly, the online delivery from Simply Supplements was promised for the following day if ordered before 6.  I ordered on Sunday evening and even allowing for the weekend etc, it's now Wednesday! Still, I'm not quite out of the original stock yet, so if they come soon, I'll be able to go seamlessly onto the 100mg capsules by the end of the week, in the build up to Easter with its extra energy challenges!

As ever, watch this space!

So pharmacy, so good

 Went to collect my repeat prescription stuff this morning and got collared for the usual annual review with the pharmacist to make sure your meds are still right for you and that you understand what they're all  for. This is a good plan, I think. Helps to give people a chance to ask any questions without taking time at GP, and maybe catches any mistakes or abuses.

Once in the little office (bang next to the queue waiting for the till who can hear every word of the review through the door!) the pharmacist went through my diabetic stuff item by item and on to my Ramipril: "Yes, that's right, for high blood pressure."

Finally it was the turn of the Simvastatin. A well-timed opportunity to ask for a professional opinion. I explained that a diabetes nurse had suggested I try coming off the statins a couple of years ago to see if there was any improvement in symptoms. I also asked if she could check exactly when I was first put onto them. Can't trust my own foggy memory of it being not long before massive M.E. flare-up!

Trouble is, I've come back home without finding out. So much concentration to explain and listen and sit and stand and juggle the heavy doors etc etc that it completely slipped my mind. I know she'd started to look on the computer as I asked! Also, the doc has filled the order for needles instead of Ibuprofen painkillers. Both these items are on the second sheet of my repeat prescription. Did I tick the wrong item in my brainfoggy state? Probably!

The upshot was that the pharmacist agreed that it might do no harm at all to stop taking the statins for a while, and if I find an improvement in symptoms, then I can update my GP and go from there. 

All good. What surprised me a bit was that the pharmacist had never heard that statins could deplete the body's CoQ10. It seems widely documented online. It's even used as a selling point for CoQ10 outside the context of M.E./CFS, for those on statins! But she was still in the dark!

Given that, I was less surprised that she hadn't heard that many patients with M.E./CFS were also deficient in CoQ10.

But then, nothing surprises me about general lack of awareness of M.E. both in the medical world and the wider public and media!

Sneezing and shivering today which is just a cold, no doubt, not M.E. related at all. Slamming headache and achey now either with the virus or the after-effects of this morning's energy-heavy local outing. I felt less brainfogged before that, I think, and only woke twice or three times through the night (once at 2am with a hypo, when I stumbled out to get the restorative jelly babies from the bedside drawer and ended up tipping them all over the carpet. Still finding them this afternoon! Lol!)

Time will tell, but I'm still more than up for it!

Running out of spoons! Welcome to the energy juggling circus!

How 's it going today, flower? You DO look well!

Had a better night last night and slept through most of it. Which was nice. And refreshing!


Woke early with the Song thrush (I nearly just wrote "thrush" but that would have been a different problem altogether!) and the sunshine. No statins again last night. Supposed to be collecting a repeat prescription for more statins (along with loads of other meds) this afternoon, but not planning on actually taking any more Simvastatin any time soon.


Head felt clearer today, compared to often. Very clear, for me, which is delightful! That could be no more than a "good" day, I suppose, but it's always a great feeling, and I survive on balanced optimism!

Aches and pains at a minimum, which isn't that often the case. Took my 15mg Enada NADH with water about half an hour before breakfast. Blood sugars a bit up this morning 13.2 mm/ol, nothing unusual, but nowhere near perfect. Somogyi Effect or Dawn Phenomenon? Whatever! That's not my concern in this study.


Took 50mg CoQ10 with brekkie. Had a small spoonful of olive oil to swig it down with. Yes - it sounds disgusting but my breakfast was only fruit so didn't contain the right accompanying fats today, and I don't have the capsules that come with Vitamin E (an oil). Something to think about if I can afford to buy another lot after this.


Decided after breakfast chores, feeding the birds, catching up with emails etc, walking slowly round the sunny garden to take a few photos for my blog, that I'd better test this energy out properly.

As ever, it's all I can do to keep on top of jobs around the house and garden, even on the better days, so my first stop was cleaning the downstairs and upstairs loos which I managed perfectly well. (Oooh! Doesn't she look WELL? Yes, dear. *rolls eyes*).

Then I decided I'd take the dustpan and brush to clean up any obvious major fluff etc ready for a proper hoover through later or, if need be, another day. I started with great enthusiasm (as always!) downstairs and then it was time for the stairs, landing and bathroom. I managed all and felt pleased as I was finishing the bathroom carpet. So far so good.

 I went downstairs. This is a good day indeed, I thought. Then I began to make a drink. For the energy-bankrupt among us, drinks don't make themselves. There's reaching for a mug, walking across to the sink, cupboard, bin, drawers, pushing plugs, filling kettle, lifting said kettle, spoon, mug, balancing, pouring, stirring, turning, negotiating worktop edges. 

Sounds crazy, I know, but no wonder we're sometimes too tired to drink or eat what we prepare. 
And that's just for one!

 If there's a mate or mates with you, that involves talking, listening, understanding, showing caring by processing what you are hearing, co-ordinating jokes or replies if you actually want to show the real you inside this awkward mess, through the crash of cups and hiss of steam as your wrists buckle and you try not to misjudge the distance to your mouth or forget your train of thought!

All this costs units of energy for each part of a task. We start with a limited number of "spoons" as one clever lass explained it to her friend (bless you, Christine Miserandino at butyoudontlooksick.com!) Go look at her wonderful explanation of what it's really like to live with illnesses where you have limited energy for seemingly trivial tasks that others take for granted, here:

The Spoon Theory by Christine Miserandino 

It's such a great explanation of diseases like Lupus, M.E., CFS, M.S., Parkinson's Disease, Huntington's Disease, Hashimoto's Thyroiditis, Fibromyalgia, Gulf War Syndrome and so many other "invisible illnesses" which mean energy can't be taken for granted any more. Out of sight "invisible" doesn't ever mean out of mind, for those who live with them (even less out OF our minds!) Well, not more crazy than we were before, anyway!

As I picked up the coffee mug, I could feel the world slowly (not very slowly!) collapsing into painful slo-mo round me. No. Not hypoglycaemic. Just M.E.'s "post-exertion malaise", that hits like a sledgehammer at any time after exercise. That's why graded exercise is often counterproductive when administered to people with ME/CFS by therapists with no imagination or real experience of such conditions. The after effects of exercise are just that. After. Not when you see us "well" (haha!) doing it. Any time from a few minutes, to a couple of hours or quite often, the next day. Even when the "exercise" seems minimal. I wasn't exactly dancing as I brushed!


My hands, knees and back felt, if it doesn't sound too ludicrous, nauseous. So did I. My ears were ringing like an express train was going through a station inside my head. My temperature began to rise (no, I don't mean a bit of a hot flush!) and I was starting to get unsteady. My vision was starting to be blurred. My head was banging and my muscles felt as if they were turning to water. Water and fire and fog. My stomach felt so raw from the weak core muscles in my torso. My throat was getting sore and dry and my neck glands tender. Painfully tender.


I lay down for a minute or two (I wish it was that short!) to recoup my energy to begin again. But for the rest of the day I've not been able to. I managed to boil a kettle for soup, but wasn't even up to cooking, let alone eating much for lunch. Certainly nothing involving a series of complex "spoon" wasting processes!

Still, taken as a glass half full, that's a big achievement for me. I always think "what if somebody visits today without giving me a day or two to prepare?" I love visitors, even if my M.E. raddled body sometimes pays after they've left, unbeknown to them. I wouldn't want to be a recluse completely,  just to save the energy it takes to love your friends and be loved by them. (That's usually a very small and self-selecting group of true friends, as anyone who hasn't been able to have the common decency to be 100% fit again within the fortnight will know only too well!)

Folks are very kind in "not noticing" a layer of dust or a stray pair of knickers down the back of the radiator, but I know. I'd sooner be prepared so I can at least keep what energy I've got to help my guest have a laugh and to enjoy each other's company, not be secretly whittling whether I've had the energy/warning to check the milk's not gone off!



Not out of the woods with the M.E., yet, then, but I'm still thinking that stopping the statins may well maximise my chances of keeping a clear head, a more normalised sleep pattern and hopefully no extra muscle pain from the CoQ10 deficiency. If so, and the statins are hindering not helping, triggering even worse troubles, how can the medical establishment justify not warning people with diagnosed diseases of the central nervous system that they should either

(a) avoid statins or

(b) take hefty CoQ10 suppplements to redress the loss?


I certainly shall be!  I'm determined to be  fighting in the future to help make others more aware of these matters so we can all make informed choices about our own body's particular needs, and support one another with humour and hope.


I hope as my body starts to get statin-free and my CoQ10 built up a bit more, my cells will be increasingly able to make a better shot at sparking their own energy, as they have in the past after periods of severe illness.

Sooner rather than later, preferably!

Sleeping Beauty. Well, sleeping, anyway!

Statins? Better out than in ?

Statins? Is there something we should be told?

Reading up yesterday online about CoQ10 brought up lots of people's appalling experiences of the side effects of statins, which deplete CoQ10 in the body.  As I mentioned in my last blog entry, I was put on Simvastatin not long before my total collapse with M.E. that left me housebound and bedbound for much of the time back then and still affected now most days, even five years later.



A friend emailed me after reading yesterday's blog (thanks, friend, you know who you are!) to share his own experience of the devastating effects of taking Simvastatin. From a fit and competent athlete, he went to a life of severe pain to the extent he was considering hip replacements! When my friend had stopped taking them, he was quickly free of the intense muscle pains his own doctor had failed to link to the statin therapy! His doctor still insisted the statins could save life with lowered cholesterol. But what's the point if you are too crippled by their side effects to have any quality of life? Let US decide what's right for us, given all the facts, please!

Another friend of his with Parkinson's disease (another illness that involves the central nervous system) was experiencing his own dire consequences from taking statins that left him unable to drive from pain. Merely stopping taking Simvastatin made those extra crippling symptoms disappear within days!


Another friend of mine, in her seventies now, also had to discontinue taking statins some years back because of the pain caused in her muscles and nerves. Online, the anecdotal evidence that some are made much worse by statin "therapy" is overwhelming. If you're in any doubt, just do a bit of googling on "statins"!


A couple of years ago, after going on the Type 1 Diabetes Carbohydrate Counting course that helped me reduce my high insulin intake by about a sixth and so very rapidly drop the extra few stone I'd piled on after becoming unable to exercise and walk/cycle everywhere as I'd done all my life before M.E., a diabetes nurse was looking at my meds list. She saw the statins there, recommended for all diabetics with a history of heart disease or stroke in the family (my maternal gran died at 52 from atherosclerosis, my dad had a stroke at 45 and died without recovering at 66 plus lots more related circulatory disease on both side of my genes).


Although she had no experience of M.E., she knew some of the symptoms like profound disabling fatique and muscle/nerve pain, and suggested I try coming off the statins for a week or so to see if it made any difference. I did, and maybe because I was going through a "better" period, didn't really notice a dramatic difference and so didn't pursue it further.

I went back on them so (typical me!) the doc wouldn't notice my statin prescription had been reduced without consultation, to spare her feelings! I was also euphoric over the new better diabetic control and being freed to lose the weight the M.E. had so frustratingly slapped on me. (Glad at last to be free of the misguided question: "Ooh! I thought they must've put you on steroids!" on top of everything else!).

Now I read online that one doctor with a particular interest in M.E (Dr Sarah Myhill - who got struck off at one point, I believe, for not toeing the party line of the NHS and drug companies with her insightful advice to desperate patients), says:

"My guess is that statins by reducing the cholesterol that the brain loves, are contributing to our current epidemic of Alzheimer’s Disease. Certainly it is rare for my CFS patients to tolerate statins – nearly always they are made ill by them." (c) Dr Myhill's own website @ www.drmyhill.co.uk


Then a full explanation here on the U.S. www.ncbi.nlm.nih.gov site:

"The results show that lowered levels of CoQ10 play a role in the pathophysiology of ME/CFS and that symptoms, such as fatigue, and autonomic and neurocognitive symptoms may be caused by CoQ10 depletion. Our results suggest that patients with ME/CFS would benefit from CoQ10 supplementation in order to normalize the low CoQ10 syndrome and the IO&NS disorders. The findings that lower CoQ10 is an independent predictor of chronic heart failure (CHF) and mortality due to CHF may explain previous reports that the mean age of ME/CFS patients dying from CHF is 25 years younger than the age of those dying from CHF in the general population. Since statins significantly decrease plasma CoQ10, ME/CFS should be regarded as a relative contraindication for treatment with statins without CoQ10 supplementation."


So now's the moment to try again.

Last night I stopped my statins (40mg per day), to see if they indeed are causing me more grief than I realised. I'm continuing with the CoQ10 (50mg today), which will hopefully redress the balance of the CoQ10 the statins have leeched over the years! Also, continuing with the Enada NADH (15mg) my other friend recommended from her sister's positive experience of it, which is yet another way to supplement the mitrochondrial pathways to ATP energy my body lacks.


Thanks to all friends online and off for your wisdom, kindness, patience, humour and loving support over a lifetime. One day, you'll have the real me back, game for anything, overtaking dawdlers in the street, full of beans... but maybe not statins, any more!

I could open a ruddy pharmacy, me! But maybe statins won't be wasting space there for long...