Diary Day 112: CFSME Makes You Diabetic, Discuss.

A year ago I had a series of blood tests at my GP’s. 

The blood tests were standard screening for, amongst other things, how my body reacts to glucose. This is known as a fasting insulin test.

When I was diagnosed with ME in 2010, the gateway blood tests that are done to confirm the diagnosis returned results in the normal range. i.e. I was not diabetic or at risk of diabetes.

5 years into a CFSME diagnosis and the fasting insulin test returned a result that indicated IT had happened – I had a fasting insulin test result of 7.1. My doctor told me that would indicate that I am diabetic.

The doctor did another test to confirm. That’s called a HbA1C. It looks at how your body reacts to glucose over 3 months. That result came back and it was normal – 41%.

My GP came to the conclusion that I was something called pre-diabetic. She put me on a watching brief. At the same time she told me that there are 2 things I could do in order to turn around, or reverse, the slide towards diabetes. They were:

  1. Change your diet and lost weight
  2. Considerably increase your exercise.

At that point my GP and I had a full and frank conversation about the limitations of having CFSME.

“How can I do something about getting diabetes if I can’t exercise??” I asked her.

“If you could do more exercise then that would be the more beneficial for you,” came her reply.

Graded Exercise Therapy 

If you follow the tag and category on this blog about Graded Exercise Therapy you’ll read about my experience of doing it in an NHS CFSME clinic and why.

For me, a potential diagnosis of diabetes was so, so, much worse than the diagnosis of ME. It would be the straw that breaks the camel’s back. I did GET to help the pre-diabetes, not because I thought it was a treatment for ME.

If I hadn’t had CFSME, I wouldn’t be pre-diabetic. Period. I simply wouldn’t. 

I’ve had 5 years of very, very little exercise, I’ve put on weight also and I can’t shift it. It’s hardly surprising, is it?

Then there’s the ‘what’s the underlying biology behind CFSME’ question as well.

NHS Dietician to help pre-diabetes

To tackle the diet and weight issue I saw an NHS dietician. Unfortunately at no point did she tell me I had to go onto a low carb diet, which would have made the journey I’m now on much, much easier to manage.

In the last year I’ve not been well enough to return to my GP and tackle the issue, however I went back this week.

I discovered that my fasting insulin test increased between June and July last year, which definitively indicates I’m diabetic ( 7.1 to 7.3 to 7.4 over 2 months.)

However my HbA1C is STILL NORMAL !!!!

My doctor said various things, but the first one was that I needed re-testing to see what’s properly going on.

Today’s test…

Today I had another set of blood tests: fasting insulin, HbA1C and a glucose tolerance test.

The last means I had to have my bloods taken after fasting for 12 hours, drink a gloopy sugary drink, wait and continue fasting, then return after 2 hours to have my bloods tested again.

I discovered my BMI is increasing, not decreasing, but my contra to that, my weight is coming down. Despite that, I’m now considered obese.

Everything is a maddening mix of test results and I am left convinced of one thing and one thing only…..

CFSME is a metabolic disorder 

There’s been a lot of discussion in the community about this and some academic articles that have been published also. I’m not going into that here, what I will tell you is what happened in the conversation with my GP.

I think that there’ll be other People With CFSME out there who could be facing the same confusing and difficult news. Here’s what I said to my GP and visa versa.

Consultation with my GP about CFSME and pre-diabetes 

It was a new GP I didn’t know.

I wrote a list of things I wanted to cover and I took a notebook in and asked him to wait while I wrote things down.

I’d rehearsed what I wanted to say about CFSME in advance. I said this as I sat down:

I said:

  • I’ve had CFSME for 6 years.
  • I did not have any pre-diabetic symptoms when I had the gateway screening tests to be referred to the CFS Clinic.
  • I am pro trying to reverse diabetes however I do have limitations to the amount of exercise I can do.
  • If I am nervous about trying additional exercise, that’s because of post-exertional malaise, and not a poor attitude.
  • Can I ask you how up to date you are with the current research about CFSME?

Dr said:

  • OK, I prefer the term CFS to ME, so that’s what I’m going to use.
  • Your results are confusing. We need more clarity.
  • Diabetes must be managed – if you are diabetic it will improve your fatigue.

I said:

  • ME is more than fatigue, it’s about a lot of other symptoms too.
  • I have done Graded Exercise Therapy.
  • I want to deal with this holistically
  • I do get out of my house to do some exercise every day – that’s what GET did for me.

He said:

  • I’m not saying CFS is a mental health problem, but if you did have a mental health problem and were fatigued, I’d suggest certain things to treat that, and would expect to see an improvement in other symptoms.

I said:

  • I can tell you CFS is not a mental health problem so I’m pleased you’ve said you don’t believe it is either.
  • Do you think that there’s a possibility that CFSME is a metabolic disorder and these results indicate that, as opposed to indicate diabetes and that’s the reason why the results are (my words) all messy.

He said:

  • We don’t know. We do know what we can do about diabetes, though. The evidence is clear that if you lose weight, do more exercise and change your diet to a low-carb diet, you CAN reverse this, however it’s easier to do this before you are diagnosed with Type 2 diabetes, it’s difficult to do that afterwards.

At this stage of the consult I’m thinking, “exercise, exercise, exercise, how the f** can I do more exercise. It’s clear I have to…”

So, he’s referred me to a local exercise programme to work with a physiotherapist to see how I can increase more tolerance for exercise.

Then we had another conversation, about the CFS Clinic. 

As he was writing notes on a form, I said:

“It’s such a dangerous diagnosis, you know. 

He looked up.

“At the CFS Clinic, they ask for gateway tests, which I’ve had done, twice. When I’ve raised any other symptoms with them they confirm that they are ME symptoms, but they never refer for more tests or ask for any to be done. 

“This is a diagnosis of exclusion, right? If it’s a diagnosis of exclusion then why has no-one tested me for alternative causes of the things they tell me are ME. Like my temperature problems, cold hands, cold feet, cognitive problems, dietary disruption, my levels of anxiety that are beyond what is classed as generalized anxiety or a panic attack? They attribute everything to ME, not me.”

The doctor looked up at me again, smiled slightly and interrupted.

“OK. You’ve got this diagnosis but that doesn’t mean to say that everything from now onwards is not tested and checked. We will check. I can tell you that if you are diabetic, your weight may come down with medication and you’ll definitely feel better for not having the fatigue that comes with the disease. We’ll monitor you also.”

He handed me the forms.

“Thank you Doctor,” I said, “about being so understanding about the ME. Not everyone is, and you were, and it makes a difference.”

He gave me a genuine smile that time, all lit up inside.

I find out my tests results next Tuesday. I can’t be the only one going through this, right ?

Copyright Lindy, 2016. 

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