Hello! Newbie help!

Hi, there are so many symptoms of RH that it's a bit of a lottery what symptoms you get.
You may have insulin resistance, but the underlying cause of RH is insulin overproduction.

I was in the same predicament a few years ago. Too much insulin in my blood, became insulin resistant, lost weight, no T2 but RH!

My bloods were very high, and was misdiagnosed as T2.

Don't know about c-peptide tests, mine came back normal.
Have you other symptoms, have you a monitor to record your blood glucose levels.
What sort of a diet are you on? Have you been told not to eat carbohydrates and sugar?

Alicki said:

Have been told no sugar and no high carbs. Specialist on 28th!

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Unless you get lucky like I did, then, that's what a lot specialist endocrinologist will probably say, if you have RH, then it's all carbs, even low GI ones.
Some you can have very little, some not at all.
The only way I live my life is very, very low carb.
It makes me healthy!
If I didn't, I would be very ill!
You need to gain the knowledge about RH and how control is critical to your future health. Control is the key to unlock feeling really good.
You need a food diary, blood glucose monitor, an understanding family and a change of attitude towards food.
By understanding what happens when you eat, you will perhaps understand what the wrong types of food will do to you. Whilst the right types of food will alleviate symptoms and help with your high blood glucose levels.
This will have to be a life changing commitment and may go against most medical advice.
Through my experience and the help of a endocrinologist who has done some good work on RH, many endocrinologist wouldn't even know about RH.
It is quite rare and unique to everyone that has been diagnosed.
Hope this helps.

Hi and welcome!

I use the freestyle libre gadget, and one of the things i regularly notice is that instead of getting a single smooth rise and fall on my bg readings, carbs will often give me a double peak.

Obviously, this is just speculation, but am wondering if something similar happened on your test.
Will try and find a screenshot to show you. Here you go:


Obviously, your circumstances were different, but double peaking is (as i understand it) an RH thing.
Would you agree @nosher8355 ?

Mind you, doesn't mean there aren't a whole range of other possibilities - i just haven't heard of them.

The reason why RH is unique and why we are all different within the blood glucose disorders is because firstly the spike is singular in its ascent.
Then having reached its zenith, it double spikes on the way down and again it is variable and time wise, different in all of us and also differently timed every time we eat, but individual.
I spike about half hour after eating, then eventually hypo between 3 and half hour to four to five hours. I eat very low carb little and often throughout the day.
Only by stopping the spike, can we prevent what happens after.

nosher8355 said:

The reason why RH is unique and why we are all different within the blood glucose disorders is because firstly the spike is singular in its ascent.
Then having reached its zenith, it double spikes on the way down and again it is variable and time wise, different in all of us and also differently timed every time we eat, but individual.
I spike about half hour after eating, then eventually hypo between 3 and half hour to four to five hours. I eat very low carb little and often throughout the day.
Only by stopping the spike, can we prevent what happens after.

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I've just reread that @Brunneria, does it makes sense?
I just typed and posted!

Alicki said:

Hello,

Thanks for your replies. I will buy a glucose meter and strips this week. My problem is that I'm producing too much insulin which is making me go RH after one hour then if my research is correct gluagon??? (Spelling) kicks in and things go back to normal. Nausea, heartburn, indigestion are the worst part.

As this is new and came on with such force, I'm going to see a pancreatic specialist to check that there's nothing else going on. bloods are good and MRI is clear but my endo can't explain why this came on so suddenly - aside the fact that weight has messed up my pancreas.

Thanks a million for standing by me. This is making me nervous and I feel overwhelmed.

Best
Alicki

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Just happened to be on here as I'm not in work till later.
Correct, apart for the spelling, (lol), glucose from food, glucagon from liver, glycogen from hormonal response and insulin from pancreas.

If it was five years ago, it would have been termed 'idiopathic' RH. Because, that means 'unknown'. But they have found why it happens. It is known as post prandial RH. But we prefer RH for obvious reasons.

What can I say about the feelings you are having. Well, the anxiety and fear of the future is normal, it could also be symptomatic. My head was all over the place.
The fluctuations in blood glucose levels disrupts your body and mind so much and if you have read the list of symptoms you can get, it is a wonder how we function if we didn't treat it.

Unfortunately, you are going to go through the testing and experimenting stage.
And it's important, that you do this slowly and carefully. I found this part exciting in some way. Because, I found I could still enjoy my food but the eating will become so important that it can become a bit obsessive. In fact the first time I have eaten anything at a different place where I wasn't in control was the other weekend, that's over two years since diagnosis.

If you have read my story, my endo saved my life, I was in such a mess because of ignorance of my health care team, not many doctors know about RH.
You will get resistance to low carbing, but the thing is, low carb works, nothing else does, we've been there and done it.
My health was really bad. My endocrine system was killing me and now because of my diet, the only thing I have is RH.
My digestive system and organs were not working properly. You name it, I had it, because of the visceral fat, it was strangling my organs. I had high blood glucose levels.high BP, and so on.

We will guide you through it, that's why me and Brun, set it up, with contributions from others, we are a growing number of unique people, who are weird because we produce too much insulin.

If you have RH! Then you don't have a problem with your pancreas as its working, just too much.
The more you learn, the more you will get a grip of this, it will take time.
Just nice and slow, before you get your monitor, @Brunneria will give you the details of the cheapest. Or contact your GP to see if he will give you a prescription.
Until you do get your monitor, just eat little and often, to try and not to get the highs and lows. My meals today, gammon, salad, a bit of fruit, more meat, more salad, Greek full fat yoghurt, a bit of choc and a little bit more fruit (berries) not bad!

Off to work now, get back later if you have questions.

Definitely shop around before you splurge on a meter and test strips.

You need a fresh strip for every test, so those costs are ongoing, and prices vary hugely.

The cheapest I know of is the SD Codefree, available online from Ebay, Amazon and direct from Homehealth the manufacturer.

But you can buy meters in most pharmacies - they just cost more.

Hi Alicki, I just wanted to welcome you to the forum.

I'll leave the advice to Nosher and Brun as they have loads more experience, but we're all here for each other. There's no need to go through it alone.

I hope you get some answers and are feeling better soon. Be patient with yourself and do what works for you. We're all different.

1. Some of us do. Not all. See the pic I posted above for what typically happens to me. Everyone is different.

2. Complicated - At its simplest, we eat carbs, our blood glucose rises, we release insulin which pushes the excess glucose into cells for storage, glucagon switches/counteracts insulin to switch it off when its job is done.

3. Suggests you are either eating too much salt, or too many additives (causing water retention and thirst followed by flushing it out a day or so later), or your kidneys are working overtime, or your blood glucose is spending some time over the 10-11mmol/l mark, causing you to dump glucose (washed out with pee) via the kidneys. Only a blood glucose meter and a series of tests by your doc can tell you which of those options is happening... There are other options too, but I am no medical expert.

Best thing to do is to look around the main diabetes.co.uk website
Lots of info there on blood testing and what it means.
Then come back and ask questions.

As an RHer, your glucose levels will be different from T1s and 2a, but the principles are exactly the same (and we are all different) so you need to map out your own, keep records and a food diary to spot problem foods.
There are lots of Apps that will help, if you have a smart phone.

Alicki said:

Hi,

Just bought meter, expensive strips.

Can you give me some advice on the best way to test my blood sugar? When to test?

Thanks
Alicki

Ps: will keep me going until doc appointment

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Hi again,
There is a sticky at the top of our forum page for blood glucose monitoring.
But usually, pre meal, one hour, to find spike, two hours to see if the combination of food is good or bad. And in the long run, patterns of how we are doing because we do alter after weight loss and new diet etc.
It's all in the sticky!