What tests should I request?

[outdamnspot]

I've had crushing fatigue for a long time now. A lot of it's probably depression-related. But for the past 3 months a new symptom has emerged that's incredibly disruptive, namely wild blood sugar dysregulation. I haven't tested my levels, but have suffered from hypoglycemia (not to this extent, however) all my life, so can recognize it. Basically, any formerly useful compounds like caffeine etc. are just crashing me further and causing bottomless hunger. It's costing me a lot because if I go out for the day, I am constantly eating.

I'm seeing a very good GP (maybe for the first time). Each appointment is an hour and he encourages you to email etc. He said he believes it's hypoglycemia based on my self-reporting, and that the best test is a 4-hour glucose tolerance test, but he doesn't want to necessarily put me through that to confirm what's probably obvious.

He wants to prescribe an anti-depressant for the mood/fatigue, which I'm fine with, but I was also wondering if there was any testing I should ask for, since the amount I'm eating to stay level clearly isn't normal; I've gained 12kg in 3 months. Someone on another forum suggested hypothyroid can cause blood sugar dysregulation and that the standard thyroid test most GPs ask for isn't enough -- that one needs to request a full panel. Is there anything else I should request? Can GPs check other hormone levels, or would that be an endo's province?

I'm a little bit nervous to ask, since I don't want to seem like I've just done some basic online research, so I guess if anyone had advice about the best way to frame these requests, that would be helpful too.

 

[A.B.]

I shouldn't be interfering but I have doubts that this GP is good. Constant hunger, hypoglycemia, 12kg in 3 months should be sufficient reason to have various endocrinological tests run. Instead he wants to avoid a glucose tolerance test and prescribe antidepressants... err what?

Antidepressants tend to cause weight gain and hypoglycemia is not even a symptom of depression.

And yes thyroid issues can also cause hypoglycemia.

I would avoid coffee and cocoa and try a diet like this for a while: http://www.mayoclinic.org/diseases-...rt-answers/reactive-hypoglycemia/faq-20057778

Not sure what you should do with the GP. Referral to an endocrinologist might not be a bad idea.

 

[minkeygirl]

I was going to say see an endo. Glucose tolerance test is nothing to find out if you have sugar issues. It should be the first thing

And if you are hypoglycemic, how exactly will antidepressants help?

Any doc can run hormone tests. I'd still push to see a good Endo. Imo

No doc should be threatened by you educating yourself about your health.

 

[Jonathan Edwards]

I think you need to confirm that this is actually hypoglycaemia. I am not sure what a glucose tolerance test would contribute since it is largely designed to investigate hyperglycaemia. If you are eating enough to gain 12Kg in 3 months hypoglycaemia would be difficult to explain and if you really are hypoglycaemic then you need other endocrinological investigations.

 

[Scarecrow]

I haven't tested my levels, but have suffered from hypoglycemia (not to this extent, however) all my life, so can recognize it.

I was absolutely convinced I had hypoglycaemia based on a conversation I once had with a vet(!) when I was doing work experience but my sugar levels turned out to be just fine.

Some symptoms of hypoglycaemia can be very similar to orthostatic intolerance. Is that something you've ever considered? Some find caffeine make it worse, others find it helpful.

 

[A.B.]

I am not sure what a glucose tolerance test would contribute since it is largely designed to investigate hyperglycaemia.

A 4 hour GTT can demonstrate postprandial hypoglycemia which is not uncommon among ME/CFS patients.

I had a normal 2 hour GTT but a clearly abnormal 4 hour GTT.

Once postprandial hypoglycemia has been demonstrated an endocrinologist can try to figure out what is going on. Even if the underlying cause cannot be identified, knowing that the problem exists is helpful as it can fully or at least to some degree be managed with a proper diet, which removes a source of constant physiological stress that worsens fatigue.

 

[Jonathan Edwards]

A 4 hour GTT can demonstrate postprandial hypoglycemia which is not uncommon among ME/CFS patients.

I had a normal 2 hour GTT but a clearly abnormal 4 hour GTT.

Once postprandial hypoglycemia has been demonstrated an endocrinologist can try to figure out what is going on. Even if the underlying cause cannot be identified, knowing that the problem exists is helpful as it can fully or at least to some degree be managed with a proper diet, which removes a source of constant physiological stress that worsens fatigue.

I cannot see anything on PubMed specifically about hypoglycaemia in ME/CFS and have not heard of any data - do we actually know there is a relation? If there is one then it would surely provide an important lead for research. As far as I can see insulin-related metabolism was studied in the 1990s and some preliminary evidence for high insulin levels found but I have not yet found anything on postprandial hypoglycaemia.

 

[outdamnspot]

I shouldn't be interfering but I have doubts that this GP is good. Constant hunger, hypoglycemia, 12kg in 3 months should be sufficient reason to have various endocrinological tests run. Instead he wants to avoid a glucose tolerance test and prescribe antidepressants... err what?

Antidepressants tend to cause weight gain and hypoglycemia is not even a symptom of depression.

And yes thyroid issues can also cause hypoglycemia.

I would avoid coffee and cocoa and try a diet like this for a while: http://www.mayoclinic.org/diseases-...rt-answers/reactive-hypoglycemia/faq-20057778

Not sure what you should do with the GP. Referral to an endocrinologist might not be a bad idea.

I don't mind you interfering, since I presume you're just concerned about my wellbeing. The doctor is *nice*, which is a big, big plus. He doesn't have an ego. He only takes on treatment-resistant, complex cases and will spend an hour with you each time, going quite in-depth. I paid a lot to see another private GP before him and she ran a fasting glucose test, told me my symptoms can't be hypoglycemia-related and wanted to prescribe an AD, so him believing me is a start.

I've had severe depression/OCD for 8 years, which has been very bad again lately, so I think he was just wanting to try help that, rather than prescribe it *for* the hypoglycemia.

My problem is I get very flustered in doctor appointments, don't assert myself, then deeply regret it. I don't really know how to ask for endocrinological tests run because I guess I only have a very vague, vague understanding of that area, rather than any conviction it's what I need. Since he encourages emailing, and seems to be like an overall understanding guy, I was thinking of maybe sending something like this:

Hi Dr x ..

Here is the list of anti-depressants I've tried (he asked me to send a list through) ..

I hope you don't mind me saying this to you in writing, since it's easier to express myself that way sometimes, but I feel concerned that I haven't necessarily conveyed how distressing or disruptive the hypoglycemia is. The problem with suffering from anxiety is that it can be easy to be labelled a hypochondriac, so I try not to press things, but I really just feel like I'm surviving day-to-day (or meal-to-meal even) at the moment. Literally everything I earn is being spent on food, I've gained an additional 2kg since I last saw you (making for a total of 14kg in 4 months), and I cannot sleep more than 4 hours a night without waking up ravenous.

I definitely understand the place for an AD, but feel a little bit concerned because, out of the last two I tried, Agomelatine made the symptoms worse and Reboxetine made only a slight improvement. I'm not really well versed enough to feel entirely confident about asking this, but I was wondering if it might be worth pursuing endocrinological testing at all, or arranging a referral? I'm aware e.g. that hypothryoid can contribute to blood sugar dysregulation. Is it possible this is something we could discuss at the next appointment?

Regards,
"Outdamnspot"

What do you think?

 

[A.B.]

I cannot see anything on PubMed specifically about hypoglycaemia in ME/CFS and have not heard of any data - do we actually know there is a relation? If there is one then it would surely provide an important lead for research. As far as I can see insulin-related metabolism was studied in the 1990s and some preliminary evidence for high insulin levels found but I have not yet found anything on postprandial hypoglycaemia.

It's one of those things that are regularly reported by patients, but not everyone seems to have it. So we don't know for sure. I would be surprised if the prevalence of this problem isn't higher in the ME/CFS population.

Most doctors will miss it because they look for diabetes (morning fasting glucose, A1c, 2 hour GTT). It's not life threatening either. Glucose counterregulation does work in these patients but the more counterregulation is needed the greater the resulting stress and fatigue.

 

[A.B.]

What do you think?

You could buy a home glucose meter like the ones used by diabetics and prove or disprove that you're suffering from episodes of hypoglycemia.

 

[barbc56]

Isn't hypoglycemia, different than bouts of low blood sugar from not eating, now considered a non disease outside the context of diabetes? Or is it?

At one time I did have this diagnosis but that was forty years ago. I was also extremely underweight. I have always had a lack of appetite even when I gained weight, probably from medications I take as well as lack of exercise.. Sometimes even the smell of food makes me nauseous. This has become much worse since I got sick. My mother was the same way. She was always very thin but didnt have me/cfs/fm.

Barb

 

[outdamnspot]

You could buy a home glucose meter like the ones used by diabetics and prove or disprove that you're suffering from episodes of hypoglycemia.

I've been wanting to -- it would be very helpful -- but can't afford it right now.

Sorry, I meant did you think that mock email to my doctor sounded relatively inoffensive and okay, in lieu of feeling certain about bringing the matter up in person.

 

[JamBob]

If you can save up a tenner, it's really worth getting a home monitoring kit, they usually come with 10 strips - that's ten chances to test when symptomatic. Also, if you know the right stuff to say - companies will literally give you one for free as they get their money back on strips.

Eg. if you know someone who's a diabetic, maybe you could apply on their behalf and have it sent to your house http://www.diabetes.co.uk/promotions/verio-iq-giveaway.html?ref=tu5

When you refer to hypoglycaemia - is hunger the only symptom you have or are there other symptoms? For example, I take insulin, when I get low blood sugar, I get very sweaty, shaky, turn very pale, am cognitively impaired such that I can't even find words and have trouble carrying out simple calculations.

If you just have hunger alone, I'm wondering if it could be other things, maybe endocrine.

I'd also ask for a referral to an endocrinologist - they can rule out different causes. GPs aren't set up to do dynamic testing.

Also, what kind of food are you eating? If you eat a lot of carbs, could you change to a more protein/fat-based diet? That can help level out blood sugar rebound issues.

 

[panckage]

I'm a little bit nervous to ask, since I don't want to seem like I've just done some basic online research...

LOL that is what you should be doing! If you can find reliable sources (not from an internet forum) print them out and take them with you to your doctor. They appreciate that. You aren't asking for opiates or Ritalin. You will be fine. Voice your concerns with your doctor. You are a good patient!