Is this to be expected?

[Emerson]

Hello,

I was diagnosed with RH around 6 months ago. I have been following a low carb diet but found after a few months I felt improved but I feel like there is something missing, I find I have extreme hunger and feel lightheaded nearly every day. I am unable to concentrate properly or walk very far. I am extremely fatigued and still not able to work full time (my job requires a lot of brain power and can be stressful). I am now feeling like I’m returning to how I felt before I was diagnosed and am frankly scared of going back to that stage again. Please could someone offer some advice. I am wondering if I should eat some complex carbohydrates or if I should go back to see my endocrinologist (my next appointment isn’t until December) or whether this is how I am now and is to be expected when living with RH?!
Any advice would be greatly appreciated.
Best wishes, Mary

 

[Grant_Vicat]

Hello,

I was diagnosed with RH around 6 months ago. I have been following a low carb diet but found after a few months I felt improved but I feel like there is something missing, I find I have extreme hunger and feel lightheaded nearly every day. I am unable to concentrate properly or walk very far. I am extremely fatigued and still not able to work full time (my job requires a lot of brain power and can be stressful). I am now feeling like I’m returning to how I felt before I was diagnosed and am frankly scared of going back to that stage again. Please could someone offer some advice. I am wondering if I should eat some complex carbohydrates or if I should go back to see my endocrinologist (my next appointment isn’t until December) or whether this is how I am now and is to be expected when living with RH?!
Any advice would be greatly appreciated.
Best wishes, Mary

Hi Mary,
I'm sorry that I can't help answer this, but I can't think of anybody better than @Lamont D

 

[Lamont D]

Hi Mary,
I'm sorry that I can't help answer this, but I can't think of anybody better than @Lamont D

Hi Mary.
A couple of questions if you don't mind?
How low carb did you get to? 50g, 100g?
If you could give us a normal days meals?
Do you fast? The reason I ask is that you got a good response from your fasting test, I just think that intermittent fasting could help.

Best wishes.

 

[JoKalsbeek]

Hello,

I was diagnosed with RH around 6 months ago. I have been following a low carb diet but found after a few months I felt improved but I feel like there is something missing, I find I have extreme hunger and feel lightheaded nearly every day. I am unable to concentrate properly or walk very far. I am extremely fatigued and still not able to work full time (my job requires a lot of brain power and can be stressful). I am now feeling like I’m returning to how I felt before I was diagnosed and am frankly scared of going back to that stage again. Please could someone offer some advice. I am wondering if I should eat some complex carbohydrates or if I should go back to see my endocrinologist (my next appointment isn’t until December) or whether this is how I am now and is to be expected when living with RH?!
Any advice would be greatly appreciated.
Best wishes, Mary

Low carb can mean you eat less salt, as you don't have spuds, bread etc... Could you be missing electrolytes? Wouldn't bring it up, but you mentioned being light headed, and that usually happens to me when my blood pressure is low... And low blood pressure could be a possibility on this diet, if you don't add in an extra pinch of salt here and there.

Just guessing though. Maybe have some broth every day and see whether that helps?
Good luck!
Jo

 

[Antje77]

I have been following a low carb diet but found after a few months I felt improved but I feel like there is something missing, I find I have extreme hunger and feel lightheaded nearly every day. I am unable to concentrate properly or walk very far. I am extremely fatigued and still not able to work full time

Are you eating enough?
If you cut the carbs but aren't compensating those calories with more fats and protein you might accidentally be on a low calorie diet.

I am now feeling like I’m returning to how I felt before I was diagnosed

Do you use a glucose meter to see if how you feel could be related to your blood glucose?

 

[Emerson]

Hi Mary.
A couple of questions if you don't mind?
How low carb did you get to? 50g, 100g?
If you could give us a normal days meals?
Do you fast? The reason I ask is that you got a good response from your fasting test, I just think that intermittent fasting could help.

Best wishes.

Thanks,
I am between 50g and 100g, never above.
A usual day is:
BF: 2 boiled eggs. 1 avocado
L: chicken salad
D: Fish with vegetables
Snacks: nuts/olives/cheese
I’ve not tried fasting as I’ve felt like I’ve needed to eat to give me more energy. Not sure though how much of that is psychological!

 

[Emerson]

Low carb can mean you eat less salt, as you don't have spuds, bread etc... Could you be missing electrolytes? Wouldn't bring it up, but you mentioned being light headed, and that usually happens to me when my blood pressure is low... And low blood pressure could be a possibility on this diet, if you don't add in an extra pinch of salt here and there.

Just guessing though. Maybe have some broth every day and see whether that helps?
Good luck!
Jo

Thanks, I have been adding extra salt, although I haven’t had my blood pressure checked in a while (and it has always been on the low side)

 

[Emerson]

Are you eating enough?
If you cut the carbs but aren't compensating those calories with more fats and protein you might accidentally be on a low calorie diet.

Do you use a glucose meter to see if how you feel could be related to your blood glucose?

Thanks. I have been counting my calories and am eating enough. I haven’t lost any weight in the past two months.
I have a CGM and I stay between 4 and 6

 

[Lamont D]

Thanks,
I am between 50g and 100g, never above.
A usual day is:
BF: 2 boiled eggs. 1 avocado
L: chicken salad
D: Fish with vegetables
Snacks: nuts/olives/cheese
I’ve not tried fasting as I’ve felt like I’ve needed to eat to give me more energy. Not sure though how much of that is psychological!

I know it sounds a bit harsh but I believe the good feelings you got on the test gave you energy from the not eating carbs or in keto. It is the carbs that has you on the rollercoaster of highs and lows.
You felt better because your BG levels were in normal levels continuously for hours and hours!
You don't need carbs for energy. Your body will cope without them like I do.
You are intolerant to carbs, if you have RH. Even 50g is too much and will start the reaction.
Try intermittent fasting. Try and get your BG levels in normal for longer.

I do understand the reason wanting more energy, it will only make it worse,.
The fasting test made me realise, I could do without a lot of food, and strangely eating less or eating only when I wanted, not dictated by the labels of timings of meals. And zero carb or being in keto have me more energy than I wanted.

Do have a think about it! It isn't easy, control is key.

Best wishes

 

[Giraffe 95]

Hi, Endo told me 6 months ago that he was 90% sure I have RH. But they tried the food tolerance test twice and aborted due to not get blood samples.
I feel the same, have changed my diet to lower carb but often have low energy and feel weak. Find I have to eat every 3 hours now, it’s such a pain. Also get very tired.
Could you up the protein?
I can’t tolerate pasta, corn flour, bananas, alcohol, but I can tolerate some sourdough, new potatoes. CGM shows I’m 4-6 most of the time but often drop below 4 for no good reason. I find exercise triggers hypos too.

 

[Lamont D]

Hi, Endo told me 6 months ago that he was 90% sure I have RH. But they tried the food tolerance test twice and aborted due to not get blood samples.
I feel the same, have changed my diet to lower carb but often have low energy and feel weak. Find I have to eat every 3 hours now, it’s such a pain. Also get very tired.
Could you up the protein?
I can’t tolerate pasta, corn flour, bananas, alcohol, but I can tolerate some sourdough, new potatoes. CGM shows I’m 4-6 most of the time but often drop below 4 for no good reason. I find exercise triggers hypos too.

Hi @Giraffe 95 welcome to the forum.

A quick answer, it all depends on your intolerance to food. And with your monitor, testing around mealtimes will help you understand what is going on.

Other than the oral glucose tolerance test(?), Have you had any other tests?

For now could you read through the RH forum. Lots of information.
Best wishes.

 

[Giraffe 95]

Hi @Giraffe 95 welcome to the forum.

A quick answer, it all depends on your intolerance to food. And with your monitor, testing around mealtimes will help you understand what is going on.

Other than the oral glucose tolerance test(?), Have you had any other tests?

For now could you read through the RH forum. Lots of information.
Best wishes.

Thank you I have read through the forum.
It was a mixed meal test- with drinking ensure and taking bloods through a cannula. My glucose shot up to 13 once I drank the ensure, but was aborted as they couldn’t get bloods out of the cannula.
Is this common?
I have a endo appt in a few weeks. I have been wearing a CGM as evidence, due to failed tests.
Is they a reason they don’t use CGM for reactive hypoglycaemia the way they do with diabetes? I

 

[Lamont D]

Thank you I have read through the forum.
It was a mixed meal test- with drinking ensure and taking bloods through a cannula. My glucose shot up to 13 once I drank the ensure, but was aborted as they couldn’t get bloods out of the cannula.
Is this common?
I have a endo appt in a few weeks. I have been wearing a CGM as evidence, due to failed tests.
Is they a reason they don’t use CGM for reactive hypoglycaemia the way they do with diabetes? I

I can't see any reason why not. With the mixed meal, extended oral glucose tolerance test, it is what reaction you have to the test. The need for cannula blood is to lab test, looking for some imbalance in your blood, maybe a deficiency, hormonal or Vitamin etc. Also an insulin test. C-peptide, GAD. Hopefully something will show up to help with diagnosis.
Be prepared for your specialist appointment. If you are using a CGM, take the results of that, with a food diary, showing pre meal and two, three and four hours after. This will help the endocrinologist decide what test is next, possibly an extended oral glucose tolerance test or a fasting test depending on your blood panel results.
Write down your symptoms, note changes after food, even if you think they are daft. It will all help.
Let us know how you get on.
Best wishes.

 

[Giraffe 95]

Thank you, it is really kind of you to offer advice.
Ok I will go prepared and document to the appt.
I think it’s unlikely the glucose tolerance test will work on me either. The intravenous team have tried on two separate occasions to cannulate me and have had no success! They manage to get a few blood samples, but not at the intervals and frequency required for the test. I found it very stressful.
I have noticed that on days when I have eggs, bacon, spinach and a tiny bit of sourdough for breakfast, my glucose level is more stable the rest of the day. Is there something in having a very high protein breakfast when you break fasting? Thank you

 

[Lamont D]

Not only the protein but the saturated fat,

Thank you, it is really kind of you to offer advice.
Ok I will go prepared and document to the appt.
I think it’s unlikely the glucose tolerance test will work on me either. The intravenous team have tried on two separate occasions to cannulate me and have had no success! They manage to get a few blood samples, but not at the intervals and frequency required for the test. I found it very stressful.
I have noticed that on days when I have eggs, bacon, spinach and a tiny bit of sourdough for breakfast, my glucose level is more stable the rest of the day. Is there something in having a very high protein breakfast when you break fasting? Thank you

That is a low carb meal, except maybe the sourdough. But then could be ok. It is so individual how intolerant you are.
Low carb or zero carb, being in ketosis, has a positive effect on stable blood glucose levels. And having stable levels is the best treatment to get control. Do have a look at dietdoctor.com for some great ideas.
Keep asking.
Have they got an idea why they struggle to use a cannula?
Best wishes.

 

[Giraffe 95]

Not only the protein but the saturated fat,

That is a low carb meal, except maybe the sourdough. But then could be ok. It is so individual how intolerant you are.
Low carb or zero carb, being in ketosis, has a positive effect on stable blood glucose levels. And having stable levels is the best treatment to get control. Do have a look at dietdoctor.com for some great ideas.
Keep asking.
Have they got an idea why they struggle to use a cannula?
Best wishes.

Yes initially when I learnt I had the condition, I went low carb, but found I had bad carb withdrawal, very weak and no energy.
I’m just very hard to get blood from, Even when very hydrated etc. At the hospital the intravenous team even used a scanner and cannulated a deep vein but it only lasted for one tube of blood. They said being fasted and anxious doesn't help, but I don’t know the reason.

 

[Oh766]

Thank you I have read through the forum.
It was a mixed meal test- with drinking ensure and taking bloods through a cannula. My glucose shot up to 13 once I drank the ensure, but was aborted as they couldn’t get bloods out of the cannula.
Is this common?
I have a endo appt in a few weeks. I have been wearing a CGM as evidence, due to failed tests.
Is they a reason they don’t use CGM for reactive hypoglycaemia the way they do with diabetes? I

A reading of 13 is diagnostic of diabetes… As is anything above 11.1. Was that a finger prick or CGM? If cannula or CGM, I’m shocked they didn’t diagnose you on the spot.

 

[Oh766]

A reading of 13 is diagnostic of diabetes… As is anything above 11.1. Was that a finger prick or CGM? If cannula or CGM, I’m shocked they didn’t diagnose you on the spot.

Sorry I meant cannula or finger prick. CGMs can obviously be unreliable! I know mine can overshoot.

 

[Lamont D]

Yes initially when I learnt I had the condition, I went low carb, but found I had bad carb withdrawal, very weak and no energy.
I’m just very hard to get blood from, Even when very hydrated etc. At the hospital the intravenous team even used a scanner and cannulated a deep vein but it only lasted for one tube of blood. They said being fasted and anxious doesn't help, but I don’t know the reason.

Did you go low carb, low enough? Did you do low carb long enough to properly be fat adapted?
It's called carb flu. And of course it's individual but can take a couple of weeks to get through it.
There is another way of carb reduction from day to day. So starting now, your carb intake is say 200g.
Tomorrow go for a reduction of 20g, then day after another 20g, another 20g, until you get under 100g, then slow it down by 10g per day, until you get to a day when you see if that level suits you, it may be as low as 10-20g. Even 50g may suit you. For some, going total zero works better.
Have you never given blood for blood transfusion service?

 

[Lamont D]

A reading of 13 is diagnostic of diabetes… As is anything above 11.1. Was that a finger prick or CGM? If cannula or CGM, I’m shocked they didn’t diagnose you on the spot.

Hi @Oh766 and welcome to the forum.
How was your RH diagnosed?
If your fasting blood glucose levels are in normal, and you spike to 13mmols after a mixed meal test or oral glucose tolerance test, doesn't mean you are diabetic, because, diabetic or prediabetic levels are diagnosed by hba1c levels. So if your fasting levels reflect your hba1c levels, being in normal levels, then you are non diabetic.
The unusual thing about the 13mmols reading is because it is an higher than normal blood glucose result for that test.

Best wishes.