Not Quite Diagnosed

[Jayb72]

Hi, I’m a 45 year old male. I already have spinocerebellar ataxia type 2. This is a neurological condition that affects balance, coordination, speech, swalllowing (the list goes on). My ataxia is progressing and I have dizziness, tremors, high blood pressure, bladder problems, arthritis and muscle wasting. This makes exercising very difficult. I was retired on ill health grounds so do not work. Recently, I thought I had a UTI (I have had many so have got to know the signs) and when I went to the GP, they dipped the sample and then asked for a finger prick blood test - this was 9.2.. They then said to go and wait in the waiting room for half an hour and drink some water. I did this and they repeated the test. This time it was 9.0. I have since had a full blood test and am awaiting the results however, they rang and said that they needed to repeat the full blood count but the diabetes nurse still wants to see me.

I may have symptoms but it is difficult to say which are my condition and which are diabetes. If my readings were 9.2 & 9.0 what’s the likelihood of adding diabetes to the list? Incidentally, there doesn’t appear to be a link between Ataxia and Diabetes.

 

[HSSS]

I know nothing of your other conditions. I would say it very much depends on what you ate and how long prior to the finger pricks. Two full blood tests seems normal to confirm a diagnosis despite my experience. When you get the results get the name of the test and the actual figures not just a “normal” prediabetic” or diabetic” reply.

Posts on here will get plenty of replies and experience to help you navigate the results whatever they may be.

This page on this website https://www.diabetes.co.uk/diabetes_care/blood-sugar-level-ranges.html shows you the normal and diabetic ranges for various tests that may be done.

 

[Rachox]

Hi jayb and welcome to the forum.
I’m so sorry to hear about the problems you are facing. Your finger prick tests sound a little high but random ones are difficult to interpret accurately as it’ll depend when you last ate. I expect the ‘full blood tests’ as you call it are HbA1cs which is a clever test which determines the amount of excess glucose stuck to your red blood cells. As red blood cells live for 8 - 12 weeks it will estimate your sugar levels over the last 2 - 3 months. Diabetes should only be diagnosed after two raised HbA1cs to be sure there was no error with the first one.
If your tests do come back positive you’ve come to the right place for help and support. Let us know how you get on.

 

[HSSS]

Diabetes should only be diagnosed after two raised HbA1cs to be sure there was no error with the first one.

Mmmm I had an hb1ac and then a week later a fasting serum blood glucose at my insistence of a second test as I was in denial. Tbf it was confirmed and nothing I saw on fingerpricks said otherwise but my surgery was happy to diagnose on one.

 

[Rachox]

Mmmm I had an hb1ac and then a week later a fasting serum blood glucose at my insistence of a second test as I was in denial. Tbf it was confirmed and nothing I saw on fingerpricks said otherwise but my surgery was happy to diagnose on one.

I did say ‘should’, I know it’s not always done. I had 2 eight days apart, in that eight days my reading went up from 67 - 70

 

[Antje77]

I may have symptoms but it is difficult to say which are my condition and which are diabetes. If my readings were 9.2 & 9.0 what’s the likelihood of adding diabetes to the list? Incidentally, there doesn’t appear to be a link between Ataxia and Diabetes.

Those numbers could very well mean you have diabetes. Could be a one-off too, due to food, a cold, steroids or something else. Your hba1c test will tell you more.
With those numbers, no symptoms are expected, really. The nasty thing about diabetes is that the symptoms become only clear when blood sugar is much too high, hence the amount of undiagnosed diabetics.

I didn't Google, so I might be completely wrong, but as far as I know your spinocerebellar ataxia is a problem in the cerebellum stemming from something amiss in the genes. Nothing to do with immune system, so I wouldn't expect a correlation really. If you do have diabetes it's probably more to do with stupid bad luck.
The good luck part is your doctor picking it up despite having a pre-existing condition. All too often they tend to shove all our problems on the known condition without investigating further.

Please let us know how things progress, good luck!

 

[Jayb72]

Those numbers could very well mean you have diabetes. Could be a one-off too, due to food, a cold, steroids or something else. Your hba1c test will tell you more.
With those numbers, no symptoms are expected, really. The nasty thing about diabetes is that the symptoms become only clear when blood sugar is much too high, hence the amount of undiagnosed diabetics.

I didn't Google, so I might be completely wrong, but as far as I know your spinocerebellar ataxia is a problem in the cerebellum stemming from something amiss in the genes. Nothing to do with immune system, so I wouldn't expect a correlation really. If you do have diabetes it's probably more to do with stupid bad luck.
The good luck part is your doctor picking it up despite having a pre-existing condition. All too often they tend to shove all our problems on the known condition without investigating further.

Please let us know how things progress, good luck!

You are quite correct about the Ataxia being genetic (I’m adopted so had no idea it was heading my way). There are many types of SCA and from what I understand, it’s primarily the lack of exercise which then leads to weight gain which in turn leads to diabetes.

 

[HSSS]

We wouldn’t all quite agree. Insulin resistance leads to over production of insulin which in turn stores glucose as fat. Inactivity and too many carbs can and do increase insulin resistance. At the least it’s chicken and egg despite how daily rag wants to blame each us for our own fate. Genetics too has a role in it. My first reaction was but I’m not that fat or lazy, plenty are worse than me and they don’t have it. Well maybe they do but don’t know or maybe they will later or maybe their genes were luckier than mine.

 

[Resurgam]

I am firmly of the opinion that it is the reverse situation - that it is the diabetes which leads to easy weight gain.
I gain weight very easily and can put on a pound a day eating a 'normal' high carb diet - all my imagination I have been told - I am obviously gorging (they love that word) on sweets and junk food to be putting on weight like that. Exercise only leads to increased appetite, in my experience, and only my present low carb diet seems to be safe in that situation.

 

[Antje77]

You are quite correct about the Ataxia being genetic (I’m adopted so had no idea it was heading my way).

One of my best friends (not adopted and with a twin that is the mirror image of their father) had SCA, no idea what type, and no-one in his family tree had it, so you might not have known even if you'd known your ancestors to the 7th generation. Something with recessive genes and stuff I guess.

from what I understand, it’s primarily the lack of exercise which then leads to weight gain which in turn leads to diabetes.

Agree with above posters that it's not that simple. If it was, many more people with a sedentiary lifestyle would have diabetes.
Most people don't get it , regardless of lifestyle, so I'd go with bad luck genetically again.
Besides, your SCA probably makes you work harder to do everyday things, which makes for more exercize, and tremors, even as they are involuntary, are exercize too!

 

[Jayb72]

How right you are! I am permanently exhausted and very often sleep in the afternoons. I sometimes walk into our local village (20 mins each way and I use a rollator as I am prone to falls) but that leaves me wiped. Most SCA sufferers report extreme fatigue and I guess is because we do have work harder all the time! Thank you to all who have replied - very useful. My diet will have to seriously change if I do have diabetes.