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I have RH and I think I'm developing Fasting too

G

Gmax

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8
Hi, I was diagnosed with RH in Dec 2017. I have had it since I was very young although it got worse as I got older. I also have Coeliac and other food intolerances. My hypoglycemia is caused by insulin over-production as I don't digest carbohydrates very well. I don't have high sugar spikes although they do go up. I now seem to be developing Fasting Hypoglycemia. I wake up every morning or sometimes through the night with hypoglycemia, I don't have a monitor so I don't know why its happening. I was wondering if anyone else has had this problem. To be honest I am fed up. I am constantly visiting my GP/ hospital doctors and getting nowhere. My dieticians talk about diabetes not RH and can't seem to get the crossover from Coeliac to RH. Every time I get glutened, it takes a few weeks to get back in sync with the RH. So even though I am very careful with my diet I still feel awful much of the time. Eating small meals doesn't help, but balancing carbs and proteins does. I think really I'm tired as I don't sleep for very long and also I'm worried about things progressing. I know I need to go back to the GP, but if anyone has any experience of both RH and fasting that would be great.
 
@Gmax I may be missing something here but if you do not have a monitor how do you know what your levels are doing?
 
@Gmax when you say you are very careful with your diet, is that mainly for your coeliac? What are you eating on a typical day?

I eat a GF diet too, so I appreciate how horrid it is to be tripped up by some pesky gluten hiding somewhere.
 
Before I got the diagnosis my GP took several blood tests, some of which I had strong hypoglycemic symptoms and my blood sugars came back within the normal range. Eventually they sent me to see an endocrinologist who did trials over a 6 hours period. These results showed that my sugars did go down but not excessively low and then recovered. I think the lowest was 2.7. Otherwise I just use the symptoms that I experience and assume they are the same. After my diagnosis I had no further treatment offered.
 
Perhaps it woulds help to buy yourself a BG meter and some test strips.
After a week or so of testing when waking (including in the middle if the night) and after eating, you will have some evidence to present to your GP rather than assuming the cause is the same.
 
Testing is the only way to be sure that the symptoms relate to low sugars.
 
Ok I'm not sure which machine, but I'll go to a chemist and ask for advice. Thanks for your help
 
DCUKMod said:
@Gmax when you say you are very careful with your diet, is that mainly for your coeliac? What are you eating on a typical day?

I eat a GF diet too, so I appreciate how horrid it is to be tripped up by some pesky gluten hiding somewhere.
Click to expand...
No I do have to be careful for GF but I can't eat lactose oats and sesame, plus I try and balance each meal so that I eat proteins and carbs together. I need to eat regularly to avoid the hypoglycaemic episodes. I carry apples, sultanas and nuts with me to eat if I need them. My food is all cooked from raw ingredients and I take leftovers for lunch. I usually eat eggs for breakfast. A typical evening meal would be made from chicken, tomato passata and veg,somtimes pulses or beans with a small portion of rice/potatoes (2/3tbsp), flavoured with various spices.
I find eating at home quite easy, but travelling is very difficult.
 

If your diagnosis is RH, and because of the tests, I don't doubt you have hypoglycaemic episodes, if that is the case you have intolerance like me, to carbs!
Which means that every time you eat carbs your could and almost always trigger an overshoot of insulin, this is why you feel awful all the time, never mind the coliec.
I am also lactose intolerant and all grains effect me badly, so do potatoes and other foods.
I was diagnosed over five years ago now, and since then, I have avoided carbs as much as possible. I have found that not triggering the overshoot, you avoid the Hypoglycaemic episodes.
The only way you can find out what certain foods you are intolerant to is by using a glucometer and a food diary, it is essential you discover, what happens to you when you eat.
All the symptoms, you describe is because your blood glucose levels are continually going up and down, as you are trying to counter the awful symptoms and as you have been advised to eat every time you feel awful.
The underlying cause of your symptoms is food and how your body copes with it.

Fasting, I can and do fast intermittently, I have found that my body is happier and healthier when I fast, there is certain different ways to fasting. Again only by trying and testing, can you know what is happening.
Before going very low carb, I had terrible night time experiences, hypos, vivid colourful dreams, sleep deprivation and fatigue during the day, add on the other symptoms, it is a hellish situation.

I can understand why you are confused and seeking help, your doctor, endocrinologist, probably have little experience with treatment of RH, they as my endocrinologist did at first, follow the recommended dietary advice, for such a condition, and would not recommend going without carbs as much as possible.
You have to have carbs, don't you?
Well, no you don't!
If you had an allergy, would they recommend eating what you are allergic to?
No, they wouldn't!
It is the same, because eating what causes the symptoms and the dreadful reaction to them is making you ill and your health is suffering because of it!

I have been on a very low carb diet for about five years, and my last hypo was my last test, which you have had is called a extended oral glucose tolerance test over four to five hours.

The only other test you may need is a fasting test over 72 hours.
And if you are going hypo when fasting, if it is not RH, it is probably a pancreatic condition such as insulinoma, but only tests can give you a definitive diagnosis.

Speak to your endocrinologist, ask him about a fasting test.

Best wishes and welcome to our forum.
 
Thank you so much, that is the best advice I have had, it makes sense to me. I do eat small/medium amounts of carbs but I know I don't cope well with them.I have looked at low carb and keto diets but I think the conflicting evidence online made me scared I would make things worse. It's nice to know that it works for you, so I think I will try very low carb/fasting and see what happens. Then I can go back to my GP with more information about what actually is happening. I did Atkins about 15 years ago and I felt great on that, so hopefully I will have a good balance soon. Thanks
 

If you have a glucometer and a food diary to show your endocrinologist and doctors, this will help convince them that achieving a balanced diet, with the amount of protein, good fats and the very low carb count is improving your control.
Otherwise they will keep advising too keep eating carbs.
I know I have been there!
 
I suffer with similar problems. I’ve been diagnosed with RH but my sugars also sometimes drop after fasting. 2 weeks ago I was admitted for a 72 hr fasting. My sugars went down to 2.7. However at home I have recorded a reading of 2.0 after fasting. Sometimes it drops sometimes it doesn’t. I’m also being investigated for a Pheochromocytoma due to spiking bp, spiking tachycardia, kidney issues and other symptoms which can also present as RH
 

Usually, if your blood sugars drop whilst fasting, this may not be RH, it could be another type of hypoglycaemia. But obviously you need the tests to diagnose what is happening. And what with the other conditions that you have stated could drive your blood sugar downs.
I hope you get sorted.
Let us know how you get on.

Best wishes
 

Hi, I had an extended GTT which confirmed I have reactive hypoglycaemia at the 2 hr Mark. Sometimes I drop when fasting sometimes I don’t. They think I have a Pheochromocytoma which could be complicating it but still having tests
 
Discovery22 said:
Hi, I had an extended GTT which confirmed I have reactive hypoglycaemia at the 2 hr Mark. Sometimes I drop when fasting sometimes I don’t. They think I have a Pheochromocytoma which could be complicating it but still having tests
Click to expand...

Ok, that is helping, the hypo at two hours is probably because your 'glucose dumping'
may be a lot quicker than mine, your initial insulin response is probably weaker.
The fasting hypo is a bit puzzling, it could be the pheochromocytoma, as this would cause the hormonal imbalance and may increase the secondary insulin response called an overshoot in RH. But I'm only guessing.
Having more adrenaline in your blood is bound to have an effect!

Do let us know how you get on

Best wishes
 
You've hit the nail on the head. That's what they're wondering. It's so inconsistent though it seems one day it'll mess with my pulse and BP the next it'll be my sugars sometimes everything goes. I get days where no matter what I do my sugars consistently drop through the day no matter what I do or eat and won't go above 5.0 then the next day its fine. I know I've had rh for years but I could always control it and knew what I could/couldn't do and wasn't even diagnosed. Now I can't control it at all
 

The only thing I could offer is that something in your hormonal response is causing the whatever is happening, if it's not food, and it is sometimes, as it is in my case, it has to be hormonal!
It's not the answer you want but as you have stated, they are investigating, and keep on top of them to do more, keep battling, don't give up!
If your endocrinologist is as good as mine, he will get to the bottom of what is happening. It may seem sometimes that they have no idea what is going on, but if you have read anything about hypoglycaemia tests, it is a progressive diagnostic series of different tests which eliminates other conditions. Only when these tests have been explored fully can the doctors give a diagnosis and a treatment regime, or as with RH, no cure, just management of blood sugar. But with some hormonal conditions, the imbalance can be helped with medication.

I take an inhibitor called sitagliptin, this helps reduce the spike and increases the initial insulin response to whatever causes the spike. But it does not stop the trigger or the hypo! So I manage by diet alone, and use the inhibitor as a insurance against any mistakes in my control.
I was advised that as long as I kept good dietary control, the insulin levels, background insulin would be in balance and reduce the episodes of Hypoglycaemia.
The weight loss and continuing keeping my blood sugar in normal levels, being in ketosis as much as possible, has helped me so much!

Have they told you of further tests other than the proposed retest?
 

I read this and so pleased, Lamont D !

As I had RH ( I had 4 hours glucose tolerance test and I had trembling after that). But I was not diagnosed RH because the glucose level was not lower than 3.0... I also have blood sugar spike, my blood sugar is up and down just like a jet coaster...

My doctor gave me various diabetes medicines
Such as Metformin( this made me absolutely unwell ), Jardiance (Empagliflozin : this gave me cystitis) and Diamicron ( Gliclazide : this gave me a sever dizziness).

But I can take Januvia ( Sitagliptin ) !! I am happy with this.

I decided to have low carb diet.

I have gluten intolerance, lactose intolerance and I do not have digestive enzymes for oil/fat...

As you mentioned if we have RH, we have intolerance to carb.. , so true !

I do not have low blood sugar now. No, I had once.. but not like before...

I eat a lot of salad with meat.. this stabilise my blood sugar with Sitagliptin.

I am pleased to read your article. You are so knowledgeable and experienced!! Also very helpful !! Thank you very much !! I feel I am in the right track to manage my blood sugar !
 

Hi, @Catkysydney,
Hope you are in good control,
3.0 in everyone's medical books is a hypoglycaemic episode.
As with most medical care people, they believe that a hypo has to be treated immediately, it took my endocrinologist two glucose tolerance tests to see how low I could go, of course with supervision. Going hypo more than a few times because of food, is Hypoglycaemia wether it is RH or another Hypoglycaemic condition.
It is unfortunate that the training is quite rare and can be completely ignored or given some other condition.
Medication is also another problem for hypoglycaemics, what works for me, might not work for you. The range of meds that I have heard about is frightening, given to hypoglycaemics for no other reason than it might work because someone else with a similar symptoms had a beneficial effect for a while.
I just don't understand the glicizide, it would definitely make me go hypo without food!
Unfortunately, there is no cure, but a drug like sitagliptin, can help and it has helped me, no side effects either!

I'm glad to help you and thanks for the praise!
That is why we are here!

Best wishes
 
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