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Complications 1-2 years after drastic improvement in Hba

LPP

LPP

Member
Messages
8
Location
S.Wales
Type of diabetes
Type 1
Treatment type
Pump
Hi all, I'm a bit of a lurker but just wondering if anyone has any experience of this.

I really struggled to keep my sugars under control as a teenager/early 20s, I lead an extremely active lifestyle and the regime just wasn't working for me. I was assigned a consultant whose interests were geriatrics and type 2, it was all a recipe for disaster and my Hba was between 13 and 18 for 8 years in total. Then I changed hospitals and discovered the joys of the insulin pump in Sept '12, which I adore. My Hba came down to 8 within 6 months and has been between 6 and 7 sincce June '13.

I was checked for retinopathy in May '13 and there was very slight hints of retinopathy but they didn't want to see me until December. In November I took myself in to hospital as I could barely see and was diagnosed with proliferative retinopathy, it was a case of light the touch paper and it was one of the worst cases they've ever seen in someone my age (22 at the time). It's been an uphill struggle with lots of setbacks (vitreous haemorrhage, vitritis, persistent oedema, exudates to name a few!) but with a hell of a lot of laser (which hasn't damaged my fields beyond passing a HGV sight test :) ), monthly lucentis injections and a saint of a consultant we've brought it back from the brink. I don't think I'll ever fully realise how lucky I was that he was working the day I went in!

Anyway, I digress. In Oct '13 I developed stomach problems, nobody ever really got to the bottom of it. They started for no real reason, I have a good diet, don't really drink much alcohol or caffeine and eat at sensible times and good meals, my only real hang up food wise is that I'm partial to a Greggs! It responded more to gaviscon than omeprazole/PPIs, and it's pretty well managed now and only flares up with stress/if I've drunk coffee on an empty stomach. It responded well to motilium which encourages teh stomach to empty itself, it was almost like it just ground to a halt every now and again and I never experienced any intestinal problems, just stomach pain/sickness.

So it's coming up to two years since I got my sugars under control and started winning battles contributing to the war, but I have such bad lethargy and my muscles ache like I've been hit by a train all the time. I sleep for 12 hours a day and can't maintain the active lifestyle I'm used to. I'm fit, a healthy weight (10st and 5ft8). I am prone to shingles but that hasn't flared up for a while now. I just don't know what's wrong with me, there are days where I can barely move. I see my diabetic specialist on 20th Aug and I don't want to go to my GPs as they tell me my blood counts are normal and it's just my diabetes, and to talk to my consultant. I know the retinopathy problems happen throughout yout body, it's just more noticable with your eyes. I was just wondering if there was a muscoskeletal condition that's common in diabetics and flares up like retinopathy does?

My kidney functions are extremely good and I'm just at a loss as to why I'm feeling like I am. At 23 I really shouldn't be constantly feeling like I do and needing to sleep so much just to lead a really basic, slow-paced life?

Sorry for the long ramblind post, it's just difficult to explain and if there's anyone who has experienced this and has some suggestions as to an avenue to explore to heal it I'd be eternally grateful!

Martha
 
It's hard to know what to say. Your long period of high glucose levels obviously took a toll. It is known that a rapid improvement in BG levels can aggravate retinopathy but the lower levels are better in the longterm
A sudden improvement of control, perhaps with a 3% HbA1c drop, causes an increase in retinopathy progression for 1-3 years. After 3-4 years of very good control retinopathy usually stops progressing completely and most patients will never need laser again
Click to expand...
http://www.diabeticretinopathy.org.uk/retinopathyprogression.htm
So for your eyes the better glucose levels eventually translates into better outcomes . I suspect this is the same for other micro vascular complications .
It is less than 20 days to your consultant appointment and I think that your GPs advise to talk to your consultant is good advice . You need though to make the most of the appointment.
I would write down your history (he may not have all the details in front of him) and concerns . He is best placed to answer your queries ( TBH anything we say will be at best speculative)
 
Thanks for your response, I appreciate it. I guess my mind is just in overdrive trying to work out what's going on!
 
I too have experienced an increase in complications post good control, for over 17 years in fact and yet the complications still haunt me.
My control was not very good during my teenage/twentys, unfortunately there was not a lot of support and help when I was younger but as the years have gone by it's great to see there is a lot more support and info out there.
I have been told that this is due to "Diabetic Metabolic memory syndrome" , but that's not to say that by continuing your better control you might keep on an even keel now, it might be worth asking if you could have your Thyroid function tested. Jot things down and take a list of questions with you to your next consultation I'm sure they wont mind, good luck.
 
Hi LPP,
Have you considered something not diabetes related? I have ME and no matter how much rest or sleep I had I was always tired to the point of exhaustion.
 
Hi LPP

Do speak to your consultant and state that your GP wants Consultants opinion.

As said in another posting elsewhere my GP filed away results of B12 that were off the scale. Fortunately I got all my results printed and emailed my consultant. My consultant saw me and explained that she had sent my results on to a haemotologist for expert opinion.
My consultant then emailed me a list of things that my GP needed to look at and get my liver and spleen ultrascanned and my lungs xrayed and look at white cell count etc to rule out leukaemia.

My gp and I discussed and now waiting for scans...

Definitely worthwhile speaking to consultants. They do have more time to discuss.

I too had stomach probs and paid privately for my first consultation with gastro andwas then sent for all tests on nhs. I offered to pay privately, but he said no, nhs you will be done in weeks. This came back as slow colonic transit. Withdrawal totally from jelly babies and anything with gelatin in and also adding more fat in to my diet with a teaspoon of ground flaxseeds and a teaspoon of chia seeds has completely restored my stomach. I no longer have any medicines at all for my stomach. The stomach had full up and under tests done, however I had anexcellent gastro chappy that really listened to me. So he also ordered a shapes test and this proved without any doubt that food was not travelling through my body at any speed within normal parameters.

Consultants are fantastic. Far longer time to sort problems than the 6 mins you get to talk with gp's.

My diabetes hosp outside the ccg area which is why they do not automatically get my blood results and why I have to email them. This is not normal!!



Loving life
 
CarbsRok said:
Hi LPP,
Have you considered something not diabetes related? I have ME and no matter how much rest or sleep I had I was always tired to the point of exhaustion.
Click to expand...

After reading the OPs blood tests seemed normal was also wondering if something like ME or Fibromyalgia could be behind feeling like this. But AFAIK , don't think there's any way to confirm this and usually it's diagnosed when all other avenues which can cause similar problems have been ruled out, which can be a long process.

I read stress and depression can cause Fibro to flare up causing generalised nerve pain, and reduced movement because of pain and fatigue can contribute to the tight aching muscles particularly around shoulders and legs.
 
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