Diary Day 113: Diabetes and MECFS – The Results, GP Advice, The Barriers To Change

Yesterday I Googled “MECFS and Type 2 Diabetes.”

There were various links on the 1st page of search results. The link is in that sentence. Included in the list was this blog’s category “MECFS and Type 2 Diabetes.” You can find all my posts on this subject by clicking on that link to the right of this page.

Page 1 Google – no health-based research in the search results

On page 1 there is no reliable ( health-based) research into the relationship between the two.

What I mean by that is no research carried out by one of the ME Charities or health researcher into whether if you have MECFS, you are at increased risk of developing Type 2 Diabetes and what the treatment regimen is once you do.

There are some links to chat rooms where similar questions are being asked to the ones I’m asking, however the picture is unclear.

Writing about Type 2 Diabetes and MECFS 

It looks like in writing this other people in my situation may find this blog too.

I’m very much welcoming any person’s comments and input – it’s a new situation for me and having CFSME does bring very significant barriers to making the changes that could reverse the impact of being type 2 diabetic.

Please do go ahead and post a comment on the bottom of this post.

What are the tests to say whether you are diabetic or not? 

Last week I posted about being sent for tests to explain better to my GP what is going on with my body.

The tests had 3 parts to them:

  1. Fasting Insulin Test (FIT) – A ‘snapshot’ – no food for 12 hours prior to the test and only drink water. Blood is taken and the test is done first thing in the morning. It has to be done first thing because of the way our bodies chemistry works.

 

  1. HbA1C – a ‘long term report’ – this is a convoluted term meaning how much glucose has been circulating in your bloodstream over 3 months. Blood is taken. It is also usually done first thing in the morning and can be done at the same time as the FIT.

 

  1. Glucose tolerance test (GTT)– this is to show how well sugar (glucose) is cleared from your body. It is done first thing in the morning. You drink a very sugary drink to introduce a lot of sugar into your system very quickly. You do not eat or drink beforehand or during this test so the test is often carried out at the same time as a fasting insulin test. Your blood is taken before you drink the drink, you wait for 2 hours, then it’s taken afterwards, then you can eat.

Some of you will see some problems or barriers for moderate / severe ME patients in carrying out these tests in the first place.

I made sure I had a lift to the hospital first thing as usually my best sleep is between 4:00 am and 10:00 am. There were no questions about my current health condition and whether I needed any additional support during the tests (from the hospital or my GP.)

Remaining in the hospital for 2 hours during the GTT was difficult. There was nowhere to lie down and I was hungry and tired. When I got back, the exertion made me sleep for the rest of the day.  The irony that it’s exactly this sort of behavior that increases my risk of developing Type 2 Diabetes is not lost on me.

However as happens when you have CFSME, my body and mind took over.

What’s a barrier? 

A ‘barrier’ is something that prevents a patient from accessing or being treated for a particular illness or disease. The word is used extensively in health care and not only to do with MECFS or Diabetes.

What did your results say? 

There are ‘normal’ results which mean you aren’t diabetic, ‘mid-range’ results which indicate you are pre-diabetic – this is also called insulin resistance – and test results that are so abnormal that you are diabetic.

In the past my fasting insulin tests have returned results of 7.3 and 7.4. This is in the range that someone would be termed diabetic.

However the FIT is not the only test a doctor looks at. They also look at the HbA1C. In my case each of the 3 times I’ve been tested over the last year my HbA1C has returned a result of normal, at 42%.

This week my test results were FIT – 7.6, HbA1C – 42%, Glucose Tolerance Test, 9.6%.

So I have an abnormal fasting insulin result, a high GTT and a normal long term insulin result.

Am I diabetic? 

Yesterday’s doctor took a view that the trajectory of my results indicate that I am diabetic. She asked me some questions first though. They were:

  1. Do you notice a relationship between the food you eat and symptoms like fatigue?
  2. Do you have to go to the loo frequently?
  3. Do you crave sugars?
  4. Are you losing weight without being on a diet?

To the first question I answered: “I am always fatigued, I have CFSME. However I do notice a relationship between eating sugars or carbs and increased fatigue. Sometimes I slump asleep straight after eating.”

Yes, it’s challenging to distinguish between ME symptoms and symptoms that might indicate diabetes. I spent the last week noting down how I felt after eating and what I was eating.

This, again, is quite a demand to make on a house bound moderate ME patient. It is potential barrier not only to effectively diagnosing Diabetes in someone with ME, but also for the ME patient in understanding what foods trigger problems with blood glucose.

Add brain fog into the mix (problems with thinking, recall, memory and being articulate), you can see that this consultation had different demands for me.

Am I ? 

My GP said Yes, she thought I am diabetic. She added that she thinks it had been ‘rumbling on for a while.’ I burst into tears and sat there through the rest of the consult sniveling and wiping tears off my face while I was taking notes.

She said she knew it was a lot to take on board. I sat there saying:”you don’t understand, I’ve tried to stop this happening, I’ve done Graded Exercise Therapy, I’ve seen a dietician, I go for a walk every day. I thought I’d dodged the bullet on this one.”

CFSME or Diabetes? 

She was sympathetic. Then I added: “it’s something ME is doing to my body, I’m sure it is…it must be. It’s not only because I’m sedentary, this has happened alongside something else.” She didn’t answer that.

Then she and I discussed medication. She said that at this stage I didn’t need Metformin ( the first choice drug to treat diabetes), that she’d refer me back to the dietician again if I wanted it, that I would be referred to a 2 day Diabetes management session and that she wanted to test me again in 3 months.

She must have seen my face when she talked about the Diabetes management session. I asked: “how long is it and where does it happen?”

She said she wasn’t sure. “Because sitting in a room upright for any length of time is a real problem for me and concentrating on information being delivered while I do it is another.”

“Oh. OK,” she replied, “if you find that’s a problem for you, I’ll still refer you and if you can go along, go.”

She pressed me about being referred to the dietician but the elephant in the room wasn’t talked about at all….

Is there a relationship between MECFS and Type 2 Diabetes? 

5 years ago, when I took the first tests to establish whether I had MECFS or I had another illness producing the same symptoms, I did not have an abnormal fasting insulin test result. I was, therefore, not at risk of becoming diabetic.

The FIRST thing I thought of a year ago when I received my first very high FIT result was:

“What’s the relationship between ME and Type 2 Diabetes.” 

For me it seemed obvious that it couldn’t be as simple a decline as not doing a lot of exercise and bang, you get it. I haven’t changed my diet – it’s still very healthy and generally good and has always been – so the only changes in the last 5 years are:

Being ill with CFSME

Not being able to tolerate exercise 

Everything else is the same.

High Serum Ferritin Result 

Amongst all the other tests, like cholesterol and Thyroid function that were given to me yesterday was a new one. It measured the levels of Serum Ferritin. 

Serum Ferrin measures the amount of iron stored in your body. That is important for the red blood cells in your body to do their job properly, including carrying oxygen around your body. Low Serum Ferritin is known as Anaemia.

I was aware of anaemia, however I wasn’t aware of what happens when you get a high Serum Ferritin result. Guess what? Yup. I’ve got one.

I had to look this up – guess what (again) a high Serum Ferritin result can indicate ” a chronic disease process” it can also indicate “inflammation.”

Uh huh. Really?

Is this a test that can indicate MECFS? 

Apparently there’s no test that can indicate MECFS – well – how about this catalogue of tests I’ve received back?

My GP really, really, doesn’t know about ME. She thinks it’s about fatigue. She suggested I did more exercise (so did the GP last week, by the way) and both times I had to speak up and say that exercise is a problem because of the post-exertional malaise that happens afterwards.

“I do exercise,” I said, “not as much as I should do, or did do,” I added, “I know my baseline and I get out of the house every day and walk. I do that regardless. That’s what Graded Exercise Therapy did for me.”

“You need to lose weight and do more exercise, ” came her reply.

I looked at her, wordless.

This is an open blog post which I’ll be tweeting to the ME Charities. I know, 100% that I’m not the only ME patient with these results.

They are the specialists –  what can be done in this situation – what does a High Ferritin result mean for someone with CFSME and what advice can they give me that I can usefully adopt and take back to my GP?

Copyright Lindy 2016. 

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