Confirmed RH

[Mollynell1]

Hi, I've been reading a lot of the info and posts on here and I'm finding it really helpful. I've had a blood test which came back low sugar and needing further investigation. I then had GTT, the first test was normal after fasting and then I had the sugary drink and the second test came back abnormally low. When I got home from this test I was feeling really unwell with jelly legs and uncontrollable shakes. My doctor said he needed time to discuss the results with someone in the know! This was last Friday but I'm continuing to really struggle and feeling very down as I'm normally such an active person and feeling like my lifestyle has been turned upside down. I'm weighing about 9st 4lbs at the moment, which is light for me. I've been unable to work the last couple of days but I really need some answers. Do you think RH is why I've been feeling so poorly and this is what I do actually have? Thank you

 

[Jaylee]

Hi @Mollynell1 ,

Welcome to the forum!

I'm going to tag in some guys with RH that maybe able to help.
@Lamont D @Brunneria

Good luck.

 

[Mollynell1]

I've just had the doc on the phone and he said I have RH but not to dwell on it and to try and get back to normal activities asap! He's putting me in touch with a dietitian, I think getting back to normal activities is easier said than done at this moment

 

[Mollynell1]

Hi @Mollynell1 ,

Welcome to the forum!

I'm going to tag in some guys with RH that maybe able to help.
@Lamont D @Brunneria

Good luck.

Thank you

 

[Resurgam]

After a couple of long bouts of illness and many different antibiotics I had - I think - RH in my early 20s, but it was just dismissed as me overdoing things - I was very active at the time.
I went onto low carb - as per Atkins, and that seemed to sort out the trouble. I have low carbed for a very long time, but the doctors did not approve. It controlled my over reaction to carbs very well, and my weight too.
Just recently as I was low carbing to control full blown diabetes I had the same problems come back, the mid afternoon slump in energy, but having my first meal earlier and about 5 grams of carb with it seems to have sorted it out. I am 66 now, so a long and active life is possible.

 

[Mollynell1]

After a couple of long bouts of illness and many different antibiotics I had - I think - RH in my early 20s, but it was just dismissed as me overdoing things - I was very active at the time.
I went onto low carb - as per Atkins, and that seemed to sort out the trouble. I have low carbed for a very long time, but the doctors did not approve. It controlled my over reaction to carbs very well, and my weight too.
Just recently as I was low carbing to control full blown diabetes I had the same problems come back, the mid afternoon slump in energy, but having my first meal earlier and about 5 grams of carb with it seems to have sorted it out. I am 66 now, so a long and active life is possible.

Thank you Resurgam that's very reassuring x

 

[Brunneria]

Hi and welcome!
And congratulations on getting a diagnosis. That is a great step forward.

It will be very interesting hearing what suggestions your dietician makes especially if you spend the time between now and your appointment reading (here and elsewhere) on RH.

But the important thing is that now you know its name, you can start to get a handle on it.
Am really pleased for you.

 

[Mollynell1]

Hi and welcome!
And congratulations on getting a diagnosis. That is a great step forward.

NIt will be very interesting hearing what suggestions your dietician makes especially if you spend the time between now and your appointment reading (here and elsewhere) on RH.

But the important thing is that now you know its name, you can start to get a handle on it.
Am really pleased for you.

Thank you Brunneria, I'm so pleased I've found this forum. I'm sure there's going to be many highs and lows along the way but to know I'm not alone means a lot x

 

[Lamont D]

I've just had the doc on the phone and he said I have RH but not to dwell on it and to try and get back to normal activities asap! He's putting me in touch with a dietitian, I think getting back to normal activities is easier said than done at this moment

Well done on getting a diagnosis.
Welcome to our forum.
Getting back to normal, that is something that your doctor cannot understand.
We are not normal! Who is?
We have a rare condition that doctors are not trained to treat. Unless you get a endocrinologist who has experience in Hypoglycaemia, then, getting your life back to something like normality is not going to happen.
The dietician will probably be just as uninformed about why and how foods cause your pancreas to behave after what we eat!
We are here because of the lack of understanding about our condition.
We have had a lot of success with our experience.

The condition can be controlled, and it is diet and avoiding foods that you are intolerant to is the answer. But it is so individual, that saying don't eat such and such, is the answer, it may be but not necessarily so!

You will need a monitor, a food diary and a change in your lifestyle.
RH can be really horrible if you don't change your diet but you can and will get healthy if you do.
I know, I've been through it all!

Do you know which type of RH you have?

Any questions or not sure of something, please ask.

Knowledge is important and when you find out what happens, it becomes clear why your diet is so important.

Again welcome to our forum.

Best wishes.

 

[Mollynell1]

Well done on getting a diagnosis.
Welcome to our forum.
Getting back to normal, that is something that your doctor cannot understand.
We are not normal! Who is?
We have a rare condition that doctors are not trained to treat. Unless you get a endocrinologist who has experience in Hypoglycaemia, then, getting your life back to something like normality is not going to happen.
The dietician will probably be just as uninformed about why and how foods cause your pancreas to behave after what we eat!
We are here because of the lack of understanding about our condition.
We have had a lot of success with our experience.

The condition can be controlled, and it is diet and avoiding foods that you are intolerant to is the answer. But it is so individual, that saying don't eat such and such, is the answer, it may be but not necessarily so!

You will need a monitor, a food diary and a change in your lifestyle.
RH can be really horrible if you don't change your diet but you can and will get healthy if you do.
I know, I've been through it all!

Do you know which type of RH you have?

Any questions or not sure of something, please ask.

Knowledge is important and when you find out what happens, it becomes clear why your diet is so important.

Again welcome to our forum.

Best wishes.

Hi LamontD, I don't know which type of RH I am, my doc has arranged for another 2 fasting blood tests 2 wks apart, maybe that will give more answers? He also didn't think I needed a monitor but after reading some posts on here I realise a monitor is a good idea. I have a food diary and a list of what I think are my good foods and bad foods. Thank you very much for your advice.

 

[Mollynell1]

Hi LamontD, I don't know which type of RH I am, my doc has arranged for another 2 fasting blood tests 2 wks apart, maybe that will give more answers? He also didn't think I needed a monitor but after reading some posts on here I realise a monitor is a good idea. I have a food diary and a list of what I think are my good foods and bad foods. Thank you very much for your advice.

Could you recommend a monitor for me to get please? Thank you

 

[Brunneria]

@AM1874 has some great info on the two lowest cost meters in this post
http://www.diabetes.co.uk/forum/threads/help-please.122747/#post-1496383
(Thanks AM1874)

 

[Mollynell1]

@AM1874 has some great info on the two lowest cost meters in this post
http://www.diabetes.co.uk/forum/threads/help-please.122747/#post-1496383
(Thanks AM1874)

Perfect, thanks

 

[Lamont D]

I will tag @Brunneria to give you the information you need about monitors.

Could you recommend a monitor for me to get please? Thank you

Hi LamontD, I don't know which type of RH I am, my doc has arranged for another 2 fasting blood tests 2 wks apart, maybe that will give more answers? He also didn't think I needed a monitor but after reading some posts on here I realise a monitor is a good idea. I have a food diary and a list of what I think are my good foods and bad foods. Thank you very much for your advice.

Are they oral glucose tests?
Or just hba1c, or full panel blood tests?

An extended oral glucose test is good diagnostic information to see how much insulin you are creating, how fast you spike, and how quickly you hypo.

Best wishes

 

[Mollynell1]

I will tag @Brunneria to give you the information you need about monitors.



Are they oral glucose tests?
Or just hba1c, or full panel blood tests?

An extended oral glucose test is good diagnostic information to see how much insulin you are creating, how fast you spike, and how quickly you hypo.

Best wishes

They're not oral glucose tests, he said they've got all the info needed from the one I had last week. I was tested at 2 hrs after sugary drink and was too low but I could feel I was getting unwell about an hr after. I'm not sure if it's just to see what my readings are in the morning, as the week before I had a low reading first thing in the morning.

 

[lindisfel]

They're not oral glucose tests, he said they've got all the info needed from the one I had last week. I was tested at 2 hrs after sugary drink and was too low but I could feel I was getting unwell about an hr after. I'm not sure if it's just to see what my readings are in the morning, as the week before I had a low reading first thing in the morning.

Hi Mollynell,
I peak after carbs at c.1hr after first bite. At 2hrs after first bite I could be well on my way to an hypo. You need several tests after a glucose drink to plot your peak and low. Some have a double response to carbs. I used to have two hypos per day. I will not have had one for two years come next September because of eating low carb and good fats with a moderate amount of protein.
You need your own meter, I have a Codefree, they are very cheap and the strips are economically priced.
best wishes
Derek

 

[Mollynell1]

Hi Mollynell,
I peak after carbs at c.1hr after first bite. At 2hrs after first bite I could be well on my way to an hypo. You need several tests after a glucose drink to plot your peak and low. Some have a double response to carbs. I used to have two hypos per day. I will not have had one for two years come next September because of eating low carb and good fats with a moderate amount of protein.
You need your own meter, I have a Codefree, they are very cheap and the strips are economically priced.
best wishes
Derek

Hi Derek, I have ordered a codefree monitor, hopefully it'll be here before long as I'm still having regular hypos even although I've changed my diet. I'm thinking I have a problem with either dairy or fruit. Thank you for your reply

 

[Mollynell1]

Just wanting to share, I'm having such a good day today Big smiles, I'm so hoping it's not short lived but feel like I've turned a corner for the moment anyway! So grateful to all you guys for your help and giving me a better understanding of what I need to do.

 

[Lamont D]

Hi Derek, I have ordered a codefree monitor, hopefully it'll be here before long as I'm still having regular hypos even although I've changed my diet. I'm thinking I have a problem with either dairy or fruit. Thank you for your reply

I can have fruit but only in small pieces.
You will find that berries apples, pears, strawberries have a lower effect than pineapple and other exotic fruit.
Dairy, full fat dairy like butter, cream, cheese and yoghurt are much better than semi-skinned, or low or no fat!
When the manufacturer takes away the fat, they replace with sugars. Avoid low fat dairy. Unless like me, you have an intolerance to dairy!

Keep asking, and I'm so glad you have turned the corner, there will be days, when you feel awful, but these days will go away and when you actually get continuous good energy, you will wonder why our doctors don't advise lower carb!

Best wishes

 

[Mollynell1]

I can have fruit but only in small pieces.
You will find that berries apples, pears, strawberries have a lower effect than pineapple and other exotic fruit.
Dairy, full fat dairy like butter, cream, cheese and yoghurt are much better than semi-skinned, or low or no fat!
When the manufacturer takes away the fat, they replace with sugars. Avoid low fat dairy. Unless like me, you have an intolerance to dairy!

Keep asking, and I'm so glad you have turned the corner, there will be days, when you feel awful, but these days will go away and when you actually get continuous good energy, you will wonder why our doctors don't advise lower carb!

Best wishes

I haven't had any fruit today, so it's looking like that is a no no. That's good to know about dairy products, I had no idea! There's so much to learn but I'm definitely going in the right direction thank you