Argh, so confused!

[MollyLouise]

First and foremost, I am sorry for how long this post will be. I'll keep it as brief as I can but bear with me, please.

I'm a 22 year old female and in December 2014 was given the diagnosis of hypoglycaemia. It was also suggested I may have reactive hypoglycaemia and/or hyperinsulinism in addition to the aforementioned. I am not a diabetic with no family history of diabetes other than my maternal cousin being T1DM.

Health wise I am okay. I have PCOS and have always battled with my weight. I am boarding on being obese in terms of BMI and actively work towards losing weight but I do struggle with this.

I have been told about the increased risks of T2DM due to my weight, PCOS and possible hyperinsulinism. Up until recently, my blood sugar would average 3.0-4.0mmol (lowest to date 1.4mmol) and I had an extremely poor rise after eating.

Over the past month I have been having unexplained episodes of hyperglycaemia which I have not been prepared for. Sugars have been as high as 18.3mmol but more commonly between 9.0mmol and 10.0mmol. These are not related to meal times and I continue to have hypoglycaemic episodes too.

I am under the care of an endocrinologist and have been awaiting a follow up appointment since April 2015. I feel like I am banging my head against a brick wall with this entire thing and really I am so lost. Does anyone have a clue what might be going on? Why now am I having hypers?

Thanks.

 

[noblehead]

Hi @MollyLouise and welcome to the forum.

Why don't you chase the appointment up, if you ring the Endo's secretary they will hopefully speed matters up, so give them a ring in the morning and explain that you want to be seen asap.

 

[Lamont D]

Hi, @MollyLouise
Welcome to the forum.
I have reactive Hypoglycaemia.
Please read the link below, then ask any questions about anything!
I have been through what you are going through.

 

[MollyLouise]

Hi @MollyLouise and welcome to the forum.

Why don't you chase the appointment up, if you ring the Endo's secretary they will hopefully speed matters up, so give them a ring in the morning and explain that you want to be seen asap.

My consultant's secretary is on leave currently and has not provided a date for which she will return to the office, though I am hoping it's soon as she's been out of office for at least 3 weeks now!

 

[MollyLouise]

Hi, @MollyLouise
Welcome to the forum.
I have reactive Hypoglycaemia.
Please read the link below, then ask any questions about anything!
I have been through what you are going through.

When did you receive your diagnosis? I've got to the point now where I don't care what condition I have, I just want to know what it is and begin managing it properly. I feel so lost!

 

[Lamont D]

When did you receive your diagnosis? I've got to the point now where I don't care what condition I have, I just want to know what it is and begin managing it properly. I feel so lost!

I had my diagnosis over two years ago.
Many of the things you describe are actually symptoms of hypoglycaemia.
All of the worry, the anxiety, and how you feel are symptoms.
It is the fluctuations in your blood sugars, that is causing the symptoms.
I control my bloods by very low carb lifestyle.
In simple terms, I am allergic to carbs and sugars, so I avoid them as much as possible.
If I don't hyper, then I don't hypo. It is the carbs that's doing it!
Since then I feel great and have lost a lot of weight.

If you are Hypoglycaemic then you are probably producing too much Insulin.
And if you are, welcome to our unique club.

Read the thread, read the low carb forum, read my blog, just reading your first post is so similar to my fight to get the right diagnosis.

 

[ButtterflyLady]

My consultant's secretary is on leave currently and has not provided a date for which she will return to the office, though I am hoping it's soon as she's been out of office for at least 3 weeks now!

If this is an NHS service, wouldn't there be another person you could speak to? If your blood sugars have risen to high levels since the time you started waiting for the appointment, that is a clinical change the endo needs to know about, to enable them to re-prioritise you. Can your GP write to the endo and tell them what has changed?

 

[MollyLouise]

If this is an NHS service, wouldn't there be another person you could speak to? If your blood sugars have risen to high levels since the time you started waiting for the appointment, that is a clinical change the endo needs to know about, to enable them to re-prioritise you. Can your GP write to the endo and tell them what has changed?

I called the hospital today and spoke to the general receptionist who advised that all clinics my Endo holds have been suspended and there is no option to see another consultant. I simply burst in to tears, for which I later apologised and felt so stupid, but I am just at my wits end with everything.

To make matters worse I am moving to a new area soon and will need to have my care transferred to the local hospital there. My understanding of this is that I need a new referral from my GP and therefore have the 18 week wait all over again, but I am hoping I can be prioritised due to the history and sudden change(s) in my condition.

Thanks for your help.

 

[Lamont D]

I called the hospital today and spoke to the general receptionist who advised that all clinics my Endo holds have been suspended and there is no option to see another consultant. I simply burst in to tears, for which I later apologised and felt so stupid, but I am just at my wits end with everything.

To make matters worse I am moving to a new area soon and will need to have my care transferred to the local hospital there. My understanding of this is that I need a new referral from my GP and therefore have the 18 week wait all over again, but I am hoping I can be prioritised due to the history and sudden change(s) in my condition.

Thanks for your help.

Hi again @MollyLouise
I'm certain that your new GP would understand your anxieties.
If you have to and I did, I got my GP to refer me to another hospital endocrinologist. I now travel to Manchester, to see mine! Get back on to your GP before you move and set up another referral.
Did you read about the lifestyle you may need to improve your life and your health?
Your post is screaming out at me about your symptoms, the sudden crying on the phone, the desperation and the anxiety. You need to get control.
You need to start eating small meals throughout the day, at least every two to three hours throughout the day.
Ask me questions, please! I will try and help.

 

[MollyLouise]

Hi again @MollyLouise
I'm certain that your new GP would understand your anxieties.
If you have to and I did, I got my GP to refer me to another hospital endocrinologist. I now travel to Manchester, to see mine! Get back on to your GP before you move and set up another referral.
Did you read about the lifestyle you may need to improve your life and your health?
Your post is screaming out at me about your symptoms, the sudden crying on the phone, the desperation and the anxiety. You need to get control.
You need to start eating small meals throughout the day, at least every two to three hours throughout the day.
Ask me questions, please! I will try and help.

I did have a read of it, thank you so much for sharing that with me. Thank you for all of your help, too.

Do you have input from a dietician? I am not sure whether I would benefit from one or not. I have looked in to a GI diet and think it is something I could commence but not without difficulty, I fear. Would I benefit from carb counting? What about limiting my sugar intake?

 

[Lamont D]

I did have a read of it, thank you so much for sharing that with me. Thank you for all of your help, too.

Do you have input from a dietician? I am not sure whether I would benefit from one or not. I have looked in to a GI diet and think it is something I could commence but not without difficulty, I fear. Would I benefit from carb counting? What about limiting my sugar intake?

Sorry not to reply earlier as I was watching blazing saddles!
Ok, a GI diet is too high in carbs for me!
I don't count anything! I just very low carb!
A dietician is just a trained health service employee!
My endocrinologist told me not to bother with his dietician because he knew I had to go very low carb lifestyle.
I am permanently in ketosis, which means I don't go above 6mmols ever!
I get my energy from my muscle fat and not from carbs!

 

[Lamont D]

[QUOTE="MollyLouise, post: 928526, member:
What about limiting my sugar intake?[/QUOTE]


You need to eradicate all sugars!

There are some artificial sweeteners that will be ok, but I try and not use them at all!

 

[MollyLouise]

[QUOTE="MollyLouise, post: 928526, member:
What about limiting my sugar intake?

You need to eradicate all sugars!

There are some artificial sweeteners that will be ok, but I try and not use them at all![/QUOTE]

Wow, that must've been hard at first, surely? I have looked in to some books which may be of use to me as I attempt to regain control over my blood sugars, but I am wondering if there are any you would specifically recommend? Thanks.

 

[ButtterflyLady]

I called the hospital today and spoke to the general receptionist who advised that all clinics my Endo holds have been suspended and there is no option to see another consultant. I simply burst in to tears, for which I later apologised and felt so stupid, but I am just at my wits end with everything.

To make matters worse I am moving to a new area soon and will need to have my care transferred to the local hospital there. My understanding of this is that I need a new referral from my GP and therefore have the 18 week wait all over again, but I am hoping I can be prioritised due to the history and sudden change(s) in my condition.

Thanks for your help.

I suggest you go to your GP and tell them about your high sugars, and the problems getting an endo appointment. He or she should be able to refer you somewhere else instead. And don't worry, I think we've all burst into tears dealing with medical appointment delays and issues. It's a normal reaction to an abnormal situation. Hang in there, hugs.

 

[Lamont D]

Ill give you a tip, you like me are unique, so everything that you have learnt about eating, diet and lifestyle is totally different to what you have grown up with!

I am a guinea pig for my consultant, I have had to find by testing, experimenting, testing, recording, comparing and retesting. To find out what I can eat and what I can't!

The low carb forum is great for ideas and recipes. But the bottom line is, I literally eat a lot of meat, a lot of salad, with the occasional fruit and homemade soups and stews and curry.

I have no dairy, except for full fat plain Greek yoghurt.

Don't have rice, pasta, potatoes, bread (one slice of Bergen bread a day), pastry, cereals or any factory processed ready meals or processed foods.
Fat free or low fat is bad for me! I eat fat off the meat! That's how I get my energy!

I eat loads of eggs, protein, mushrooms, tomatoes.
A full English breakfast is good cooked in saturated fat like goose fat or coconut oil.
It's not easy, but as I've survived it and feel the benefits of this way of eating, I can't but praise the people who have helped me understand what and why, this condition is controlled.