Finally, a diagnosis!

[HessianHerman]

Initially diagnosed as T1 at 22 years old, then they backtracked that and diagnosed me as potential T2... Then they thought there was maybe something up with the pancreas so away I went for a CT scan, the little ****** is fine. It took the consultant five mins to see the problem with a libre. I eat, I rise to 10mmol, or thereabouts, then three hours later the good stuff happens and I'm incapacitated mentally and physically by an onslaught of problems brought on by a plunge into the jittery wastelands of hypoglycemia.

I had my suspicions it was this for a while, but now shes confirmed it. Obviously she told me to eat complex carbs every three hours. I tried that. I did not like it. Sure, I'm digesting it more slowly but I still hit that mild hyper ceiling and set off the rollercoaster.

I heard about keto a while back. Over the past several weeks I have been lowering and lowering my carb intake, tapering it off. Today I woke up, had a coffee, bit later had an omelette, then for tea I had a steak and some veg. Perfectly stable sugars. No hypers, no hypos.

What a relief.

The psychological effects of uncontrolled RH are devastating. I became seriously depressed. I couldn't do anything without hypoing and releasing those fear hormones - I lived in a state of almost constant fear and terror. To learn that, for many people here, Keto was the magic bullet, well that's not something I'd ever even have known if it wasnt for the internet and this forum. I'd have continued to eat carbs every three hours and become more and more despondent.

Sure, I'll have good days and bad days, but if I can go even just one day without a hypo thats a victory. I want to thank everyone here, in particular those who espoused the benefits of this diet. There's no cure for RH, but keto seems as good as.

Are there any others here with positive stories regarding RH and keto? Something that can spur me on when I feel low (mentally, not glycemically). I mean, I'm only 25 and last month I was ready for throwing in the towel. Keto may possibly have not just made me happy, but made me into an actual functioning human being capable of more emotions than the fear and sadness and confusion that comes along with a terrible ride on the BG rollercoaster, the most depressing rollercoaster there is.

I may be posting regularly as I delve further into the low carb/keto lifestyle.

Good vibrations to you all!

 

[Brunneria]

Hi and welcome,

am delighted that you have found a way of eating that works for your RH. It works for mine too (as long as I avoid gluten too).

my understanding is that you can’t have T1 (not producing your own insulin) and RH (producing an overshoot of insulin), so have they revoked your T1 diagnosis? Or are you experiencing RH until your beta cells fail enough to rely on exogenous insulin?

 

[HessianHerman]

Hi and welcome,

am delighted that you have found a way of eating that works for your RH. It works for mine too (as long as I avoid gluten too).

my understanding is that you can’t have T1 (not producing your own insulin) and RH (producing an overshoot of insulin), so have they revoked your T1 diagnosis? Or are you experiencing RH until your beta cells fail enough to rely on exogenous insulin?

Thanks! I think they are going to do further tests, but it seems a pretty safe bet that the T1 was a misdiagnosis. When I was first diagnosed I'd take 1 unit of Novorapid with a load of chips and fried chicken and then hypo almost immediately. It wasn't fun. The clinic were baffled when I stopped injecting insulin and spent all day within normal ranges.

 

[Lamont D]

Hi @HessianHerman
Welcome to the forum.
Well your story sounds familiar, I have had all that and more, I actually believed everything they told me regarding diet until I got a referral.
I remember some of it but not all of it. It wasn't pleasant going hypo every day and not knowing, I called it my hypo hell!
Have you had an extended oral glucose tolerance test?
RH, you are correct no cure, but Keto let's you eat and feel normal afterwards. If you can't control the hypos, do you have normal fasting levels? Because fasting helps, I have said often that my body doesn't like me eating. Fasting gives you a clear mind.
It's nearly eight years now for me, and I only eat fresh cooked meat, lots of eggs and salad, I like some other vegetables, but not cooked greens, I am intolerant to dairy but I can have some Greek yoghurt. There are quite a number of things you need to find out. Finding out about your food is important in getting a balanced diet.

Let us know how you get on, the thing about doctors is that most GPs haven't a clue about RH, you have to wonder how many are out there struggling with their life because of the carbs!

Keep safe

 

[HessianHerman]

Hi @HessianHerman
Welcome to the forum.
Well your story sounds familiar, I have had all that and more, I actually believed everything they told me regarding diet until I got a referral.
I remember some of it but not all of it. It wasn't pleasant going hypo every day and not knowing, I called it my hypo hell!
Have you had an extended oral glucose tolerance test?
RH, you are correct no cure, but Keto let's you eat and feel normal afterwards. If you can't control the hypos, do you have normal fasting levels? Because fasting helps, I have said often that my body doesn't like me eating. Fasting gives you a clear mind.
It's nearly eight years now for me, and I only eat fresh cooked meat, lots of eggs and salad, I like some other vegetables, but not cooked greens, I am intolerant to dairy but I can have some Greek yoghurt. There are quite a number of things you need to find out. Finding out about your food is important in getting a balanced diet.

Let us know how you get on, the thing about doctors is that most GPs haven't a clue about RH, you have to wonder how many are out there struggling with their life because of the carbs!

Keep safe

Thanks Lamont. Now that you have changed your diet to low carb, do you have a bit more freedom in your life? As in, do you hypo daily or have you managed to form a routine/diet that prevents them from happening for the most part?

I appreciate your response. This is one strange condition.

 

[Lamont D]

Hi @HessianHerman,
If I was to say that I don't have hypos, now!
I never had one until last summer, after a bad period of personal experience.
However since, I have not had a hypo, I learned from my fasting test that very low carb and fasting is how to control the condition.
I am permanently in normal range of my blood glucose levels. My body likes it there.
I was diagnosed in 2013 and have been in ketosis for most of this period.
You don't need them, carbs are bad for me.
If you think that you are carb intolerant, then avoiding them is how to feel better again.

Keep safe, keep asking.

 

[HessianHerman]

So I've been easing into Keto, doing it properly. Mixing it with intermittent fasting, watching the nutrients and taking vitamins etc. I have a routine going now.

I generally don't eat until 6pm, but snack on nuts and drink coffee with soya in to keep my levels steady. Then at 6pm I'll have some meat (chicken, a steak) with some veg on the side. After that I eat full fat Greek yoghurt with salt and vinegar nuts and blueberries mixed in.

Thats it. Maybe something else in the evenings (a nut bar or the like), usually unnecesary though but I do enjoy a smoke of the devils lettuce some evenings and when the munchies strike it takes some serious willpower not to demolish a bag of Revels and start the rollercoaster off.

Below are two separate days on the libre. I dont need to tell you which is which. One of them is a day of following the NHS guidelines (eating complex carbs every 3 hours) and the other is me following what I've stated above.

I haven't felt this good in a very long time. You have to commit is what I've learned. No half measures. And you have to ease into Keto, so don't stop all carbs suddenly or you may not have the best experience.

I shall check in again soon.

Happy new year everyone!

 

[Lamont D]

Hi again, yes do let us know how you are doing.
And that was only complex carbs?
Wow!
I see what you mean about not being in hypo levels.
A lot of doctors not knowing the symptoms, the pathology, the tests would dismiss this as normal.
I concur with your appraisal.

Stay safe