Hi,
Welcome to the forum from me..
Not my medical bag. But I will tag in @Brunneria & @Lamont D who may have some pointers for you..
Hi, again, obviously it sounds as if you have had an oral glucose tolerance test, it was probably an extended test (eOGTT), did you have a cannula fitted? Was bloods taken before and during, same with finger pricking tests or CGT readings taken every fifteen twenty minutes? Were you told your blood was for c-peptide or GAD?
Depending on results, the next stage is probably a fasting test to see if you go hypo without food. If you do, it's not Rh.
Again depending on results, if it is Rh, then another eOGGT is likely to be used to ascertain how much you are effected by glucose quickly into your body, more bloods for initial insulin response, and how much insulin is produced by the insulin overshoot triggered by the glucose.
This is why a food diary is essential because the trigger point from carbs is different for all of us, which foods are the worst. What we can tolerate.
keep asking
Best wishes
I have almost been wishing I was hospitalised so that a team of specialists would be looking at my problems at the same time and talking to each other about what might be going on.
I had a basic oral glucose tolerance test – not with cannula fitted. I think it went for about 2 hours, with one blood sample taken before the glucose drink and two afterwards. So not the extended one.
Showed normal readings according to GP. I felt a bit unwell after drinking the glucose drink but it did not bring on the postprandial symptoms I normally have. Mind you, my postprandial symptoms are usually 2 to 3 hours after eating.
I have to wait 6 weeks until my next endocrinologist appt. When I questioned him about further testing in the meantime, for possible RH because my symptoms worsen after b'fast and lunch, he said that RH is difficult to diagnose by testing. He did recommend a dietitian so I will try to get an appointment with her.
I used to see another endocrinologist about 10 years ago for an unrelated problem. I am going to get a referral to her from my GP and get a second opinion.
I seem to have a mixture of autonomic, adrenergic and postprandial symptoms. I have almost been wishing I was hospitalised so that a team of specialists would be looking at my problems at the same time and talking to each other about what might be going on. Trying to pursue it in dribs and drabs myself is proving extremely time consuming.
Hi Sarah T. I was diagnosed with RH 18 months ago and saw both an Endocrinologist, a Gastro Enterologist and a specialist dietitian. I had a 48 hour urine collection test, an endoscopy, CT scan of my stomach and finally a 5 hour glucose tolerance test. The first tests were to rule out a pancreatic tumour and anything else that may have been causing my symptoms - typical RH hypo symptoms plus chronic diarrhoea every morning on rising. The latter was put down to excessive adrenal activity. The GTT delivered my RH diagnosis almost immediately as after the initial spike, my blood sugars fell through the floor down to 2.8. At that point they stopped taking blood via a cannula and fed me! Seeing the dietician and eliminating sugars and carbs and keeping a food diary enabled me to start feeling better almost immediately. I have done lots of refinement to my diet which means eating every 2 1/2 to 3 hours since then with trial and error. We are all slightly different in what can be digested e.g. caffeine. Some people can and others can’t! I think it’s vital you have the extended GTT ASAP and wish you luck with getting the right diagnosis so you can start to feel better very soon. Ask any questions as they come to mind.
No, not UK based. I am an Aussie.
What I meant was, if I were ill enough to be hospitalised, I would be given a barrage of tests and be seen by various specialists quickly. They would be (hopefully) making a concerted effort and liasing to rule things in or out.
As it is, I'm driving the whole thing, asking my GP to follow up on this or that possibility, tracking down specialists, trying to understand test results, etc.
Hi again,
The reason RH is difficult to diagnose is because it is a series of tests designed to eliminate other conditions until the only logical explanation is reactive hypoglycaemia or a similar type of hypoglycaemia.
The eOGTT test is the first step and shows that too much glucose will initiate an overshoot of insulin that drives your blood glucose levels into Hypoglycaemia.
This is why a food diary can help your doctors understand what is happening.
I hope you get a dietician that understands the post prandial symptoms you are getting, and how carbs have an effect regardless of how 'healthy' carbs are supposed to be.
Let us know how you get on!
Keep battling.
Best wishes
I have a further question – what if I just buy a blood sugar monitor and test myself?
I have been trying to get my symptoms investigated for a year now, and it seems to be going nowhere. No luck in getting an extended eOGTT from first endocrinologist (who turned out to be not very helpful), now running through everything again with second endo (she is good but we have to do everything again). I have a previously diagnosed endocrine condition that may or may not be implicated, so we are checking that again. It will be some months to get that done (discontinuing meds, having tests, waiting, having tests again) and if there is nothing wrong adrenally she might look at RH then.
So normally I would not do anything medical off my own bat, but these days blood glucose monitors aren't too expensive, and I am not going to act on the results without my doctor's advice.
Would self testing be useful? I presume if my blood sugar is in the acceptable range at various times, including when my symptoms are worst, that would pretty much rule out RH.
Hi again,
I'm not too sure that being ill as I know how ill you can get with RH especially very low hypos, would help with a hospital admission, they would treat the hypo with treatment that probably wouldn't help you.
On my eOGTT, the nursing staff and the doctor on duty thought because of my hypo, I should be treated as a T1 or T2 should be treated and they made me drink a glucose drink and even worse a sandwich, which I didn't eat! They still were trying to ram carbs in me even an hour later when I was going high again, I stopped eating, I lasted about another hour and a half and went hypo again!
They got hold of my specialist endocrinologist who had an idea what was going on and he decided then to up my blood glucose levels slowly, as I settled in normal levels, they sent me home, I was in hospital for that one test for about twelve hours.
Normally in the UK, a specialist endocrinologist who would have an idea would not be called in, only on referral from other doctors.
The likelihood of getting the right tests is probably low.
Getting the correct tests is important, but not as important as what you have started doing already, a diagnosis is not necessary, if your testing and recording, your symptoms are giving you typically RH results then the best way to get through this is your dietary lifestyle.
Most tests are used to eliminate other metabolic conditions.
Only if you don't have these other conditions can it be RH.
For example, a 72 hour fasting test is to prove you don't go hypo while fasting. If you do go hypo, it will be one of the pancreatic conditions, such as insulinoma.
If you need more information please ask.
Best wishes
how much money are you willing to throw at this?
My view, based on personal experience of RH, and quite a bit of testing, first with a glucometer, and later with a Abbott Libre, is that testing with the glucometer is of limited value, while the Libre is much more use.
My hypos (thankfully v rare nowadays) hit hard and fast, and my bg rises very rapidly afterwards.
When using a glucometer I used to feel rough, get my brain in gear enough to work out it was a hypo, get it together to test, then scratch my head because the reading was 4.7mmol/l or something.
Which obviously wasn’t a hypo - yet I felt as though I had been run over by a truck.
when using the Libre, the whole story was revealed in a dramatic graph.
bg dropping sharply, to something like the 2s or below (Libre stops measuring if you go low enough), then a sudden change in graph direction (think a V not a U shape). Thats the point where the horrible hypo symptoms start to arrive. After the lowest reading. Then the bg rises sharply, as my body scrambles stress hormones to release stored glycogen from the liver, which gets glucose into the blood... and that is the point I would have usually get it together to test and see a reading in the 4s. Long after the actual hypo hit its low point and was busy rising again.
Lots of people take the view that ‘it isn’t a hypo unless you can prove it’ using a glucometer.
I take the view that I had hypos for 30 years before I knew that glucometers existed.
Then glucometers were quite unhelpful in ‘proving’ that my hypos were ‘real’.
Then I got a Libre, and Lo and Behold!
I have proof that I wasn’t lying all my life.
Makes me larff.
I have a further question – what if I just buy a blood sugar monitor and test myself?
I have been trying to get my symptoms investigated for a year now, and it seems to be going nowhere. No luck in getting an extended eOGTT from first endocrinologist (who turned out to be not very helpful), now running through everything again with second endo (she is good but we have to do everything again). I have a previously diagnosed endocrine condition that may or may not be implicated, so we are checking that again. It will be some months to get that done (discontinuing meds, having tests, waiting, having tests again) and if there is nothing wrong adrenally she might look at RH then.
So normally I would not do anything medical off my own bat, but these days blood glucose monitors aren't too expensive, and I am not going to act on the results without my doctor's advice.
Would self testing be useful? I presume if my blood sugar is in the acceptable range at various times, including when my symptoms are worst, that would pretty much rule out RH.