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Is this RH? Help figuring out if I have RH!

S

sas129

Newbie
I have had symptoms of RH my entire life; since a young age, my family knew that food was a big "thing." Almost every day without fail, about 3-4 hours after lunch, I would crash. I would have terrible headaches, shakiness, trembling, and weakness. I fainted several times growing up. My parents knew it was related to food, and if I didn't eat regularly, I would crash. Even more, this crash often occurred quite suddenly.

After a lot of research, I thought I should see an endocrinologist to get this diagnosed formally. However, the doctor seemed to think my symptoms were a result of decreased insulin sensitivity, since it's true, immediately after eating carbohydrates, I do feel extremely foggy. She had me do a two hour GTT. Here are the results:

0 minute mark/fasting glucose:
Blood glucose, 80 mg/dL
Blood insulin, 5.2 µIU/mL

Only 10 minutes after consuming the glucose drink, my blood glucose was 157 mg/dL.

Blood glucose at 60 minute mark: 84 mg/dL

Blood glucose at 120 minute mark: 90 mg/dL
Blood insulin, 40 µIU/mL


These are the only test results I have. However, when I got home after the test, I experienced one of my severe crashes. One of the worst I have ever had. My doctor interpreted my tests as normal, and told me that my symptoms are not a reaction to blood sugar changes. I wonder, though, if that's true.

Are these results consistent with RH that you all have experienced? Is a blood insulin of 40 at the 2 hour mark consistent with RH? Is the very quick spike from 80 to 157 normal?

Thanks for your input!! If you guys think these results are still consistent with RH, I will ask her to look into my results more.
 
Hi and welcome to the forum!

I would say that the test didn't go on for long enough.
It needs to continue for a minimum of 5 hours to spot RH, not 2 hrs.
And it most certainly needs to continue until after you have experienced 'a crash'.

Can you go back to your doc and explain that the test for RH is a longer glucose tolerance test than they ran, in order to pick up the symptoms as they happen, and you would therefore like it run again, properly?

To be fair to your doc, here in the UK very few docs have even heard of RH, and unless they are willing to take the time and effort to research the testing protocols, they wouldn't know that the tests are usually done with longer tests, and often with stays in hospital and 72 hr fasts, to eliminate other conditions.

I am afraid I can't help you with coming up with a diplomatic way of kicking your doc up the backside to broaden their horizon. I have always been stunningly unsuccessful in managing it with mine! I even took in a series of home testing results, but he refused to look at them.

On the bright side, many more docs have heard of RH nowadays, so times are changing, and there must be a lot more info out there for them, if they are willing to look it up. The fact that we get more and more people turning up at the forum with official diagnoses, suggests that the word is getting out.

Good luck.

You could always get yourself a home test meter and measure your own blood glucose through 'the crash'. Then take them in to show the doc. I hope you have better luck than I did.
 

Hi @sas129 and welcome to the forum.
Without a true series of tests, it could be any condition that is linked to endocrinology.
It could be Hypoglycaemia, and as @Brunneria has said that a two hours glucose tolerance test is not long enough to get the knowledge to see what happens after food.
You seem to have as the doctor has interpreted a decreased insulin response, wether the resultant quicker than normal spike would lead to a hypo, because of a secondary insulin response, you would only find out from having a extended OGTT.
Your symptoms are similar to a sugar crash, as you say after carbs, but again, this could be because of the levels of fluctuations in your blood glucose levels are continually up and down. I would assume you have normal fasting blood glucose levels. So this is a reasonable assumption.
As always with something as similar to Hypoglycaemia and with the symptoms you are getting, I would start a food diary and discover which food is causing the crashes.
Get a glucometer and track your blood glucose levels after eating.
There is a possibility that you have a food intolerance such as gluten or like me a dairy (lactose) intolerance. These sort of allergies/intolerance have a similar effect with the symptoms you describe.
Only tests recommended and done under supervision can get you a true diagnosis from an endocrinologist who has experienced with the rarer types of endocrine conditions.
If you ask your GP, to refer you to a specialist who has the experience.
We are only guessing, but don't give up the battle, it took me a long time in getting my diagnosis, meanwhile, a food diary, a lower carb diet well balanced with good healthy saturated fat. Will help you have a certain amount of control.
Let us know how you get on.

Best wishes
 
 
I had a 2 hour GTT. My fasting was 90, then one hour after the drink I was given it shot up to 145, and by the next hour was at 34. I crashed (not crashed the car, my mum had driven me to the blood place) in the car on the way home.
Not all reactions are as quick as mine was, but it definitely showed RH. Since your sugars looked okay, it's possible you could be experiencing pre diabetes, hypoglycemia. Either way, as the others have suggested, see your endocrinologist and push for more tests, get a food diary, and maybe get an allergy test done. The body is a crazy thing and LOTS can go wrong for seemingly no reasom.
Best of luck to you. I hope this helps, and I hope you keep us updated.
 
Rylando88 said:
Sorry to be uneducated but what is RH?
Click to expand...

No worries! Most doctors haven’t heard of it, so no reason why you should!

RH = reactive hypoglycaemia
It is one of the conditions that exist on the glucose dysregulation spectrum.
Basically it is where a person’s body over reacts to carb intake and instead of producing the correct amount of insulin to control blood glucose, they produce too much. An ‘overshoot’ as it were. This results in a hypo.

Rather like a T1 injecting too much insulin will result in a hypo.

Although of course there are significant differences between T1 and RH. RHers are often not diagnosed properly and may be told their symptoms are anxiety and/or depression, and medicated for that instead. They have no blood glucose monitor and get these weird hypo symptoms several hours after food. It often takes a loooong time to work out the carb-hypo relationship, and it is v difficult to get a diagnosis.

On the plus side, most RHers’ own bodies and glucagon production will eventually deal with the hypo, by dumping adrenalin and a cocktail of other stress hormones into the body. But that brings its own issues when this happens on a regular basis. Sometimes after every meal. The symptoms are often ‘diagnosed’ as panic attacks and neuroses, when in fact they are treatable hypos.

Edited for typos
 
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Rylando88 said:
Sorry to be uneducated but what is RH?
Click to expand...

Reactive Hypoglycemia is actually a very common experience among T2D...that is rarely diagnosed. More often that not, it is simply being dismissed as lack of will power...

The intense uncontrollable hunger that comes a couple of hours (2-4 hours) after a high carb meal.

 
Ahh I see! I’ve just had a brief look into it and it seems like it’s often missed or mistaken for other conditions which must be a pain!!!
Sounds very hard to deal with, and much like a rollercoaster trying to balance it!

Hope you manage to get sorted xx

 
sas129 said:
Are these results consistent with RH that you all have experienced? Is a blood insulin of 40 at the 2 hour mark consistent with RH? Is the very quick spike from 80 to 157 normal?
Click to expand...

I would say that because your OGTT was a standard 2 hour instead of an extended 4-5 hr test, the results are clinically inconclusive.

But based on your description and our collective experience...it fits very well into reactive hypoglycemic episodes. Either you get an extended OGTT or your can get a FreeStyle Libre Flash CGM to track your meal response.

You may well see sharp rise and drops like these with the accompanying symptoms heart palpitation, cold sweat, nervousness, intense hunger...hangry :-



 

There are different 'types' of Hypoglycaemia or RH as is often quoted, because of course it is a generalisation of having the symptoms, episodes of Hypoglycaemia.
I have been diagnosed as ' Late Reactive Hypoglycaemia'.
I must have had the condition at least ten years before diagnosis, and four years after being misdiagnosed as T2.
Just to explain, there is Reactive Hypoglycaemia, the condition.
Then there is other endocrine conditions, which have the symptoms, which is similar to RH, but is a reaction to the hormonal response to food.
Also, like T1, known as the rebound effect.

It is a controllable condition, there is no cure, but like me you can be healthy and fit, but a very low carb diet is essential, because the hypos are caused by the very weak initial insulin response, the glucose dumping which triggers the overshoot to counter the high glucose. The overshoot is too much and the hypo episode is inevitable.
We cannot treat hypos as a T1 would, because that would create even more episodes of going high then low, as you say a rollercoaster.
To stop all that happening, a very low carb diet, would prevent the spike, if no spike, no hyper, no hyper, no overshoot, no hypo.
It has worked for me!
That is my layman's version of my experience and living with the condition since 2013.
I might add that, that those with type two can be a consequence of having RH and there is little or non existent research into endocrine conditions as such.
Mainly because of high insulin levels, insulin resistance and high glucose levels after food.
Of course, unless the supervised tests are done, you cannot diagnose which type you have.
And again, I have read that some pancreatic conditions can be asymptomatic with Hypoglycaemia.
The reason why doctors assume other conditions is because of training and not recognising the symptoms, not having the availability of testing. As with diabetes, high insulin levels are not tested for and would be a good example of early signs of prevention.
 
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