So many questions!

[EmilyKB]

Hello fellow Hypoglyceamiacs

I’m very new to this. I’ve never posted in a forum before. I’m feeling a bit down and isolated about this condition. It’s frustrating how little people know of it and I’m sure lots of people I know feel like I’m just being a bit fussy about feeling “a little low”.
I have a lot of questions! I hope some of you might be able to help me.

For background info I started suffering from symptoms in 2003. I was living in Egypt and had a particularly awful case of food poisoning which lasted a few weeks. I suspect this was the cause because soon afterwards I started getting what I referred to as “wobbles”. The GP dismissed me over and over. It wasn’t until 2016 when I was incorrectly diagnosed with gestational diabetes that I had the glucose monitor and was able to go back to the GP and show her my readings of 2.5 etc.
I was diagnosed with RH in October 2017 after dropping to 1.8 in the Prolonged GTT and having to stop the 72 hr fast after 50-something hours when my levels went to 2.2

Firstly have any of you ever managed RH during pregnancy? I’m considering a third baby but don’t want to be diagnosed with GD again and don’t want to do the GTT again - I’ll just have an initial big spike and then a whopping hypo. From previous pregnancies and times breastfeeding I have really struggled to manage my blood sugars but I was undiagnosed then so eating lots of the wrong foods.

Secondly does anyone have issues with gluten? Could it be related? I’m gluten intolerant but never used to be.

Also is having a vitamin B12 deficiency related? I’ve had to have injections for this before.

And lastly do you all have your own blood glucose monitors and do you regularly monitor your levels? I have the machine but not the strips or needles because I don’t have them on prescription? Should I be going back to the GP and demanding it? I’ve been discharged by my consultant because I refused medication and wanted to treat this with diet. But if I’m honest I’m struggling. Days at work are easier to manage because I’m less active. But when at home I’m really struggling to cope because I’m always on the go with small children!!

Any advice or knowledge very welcome. This forum is a god send for me. I’ve learnt more from this forum in the last 2 hours than I have from my GP and consultant put together!!

 

[DCUKMod]

Hello fellow Hypoglyceamiacs

I’m very new to this. I’ve never posted in a forum before. I’m feeling a bit down and isolated about this condition. It’s frustrating how little people know of it and I’m sure lots of people I know feel like I’m just being a bit fussy about feeling “a little low”.
I have a lot of questions! I hope some of you might be able to help me.

For background info I started suffering from symptoms in 2003. I was living in Egypt and had a particularly awful case of food poisoning which lasted a few weeks. I suspect this was the cause because soon afterwards I started getting what I referred to as “wobbles”. The GP dismissed me over and over. It wasn’t until 2016 when I was incorrectly diagnosed with gestational diabetes that I had the glucose monitor and was able to go back to the GP and show her my readings of 2.5 etc.
I was diagnosed with RH in October 2017 after dropping to 1.8 in the Prolonged GTT and having to stop the 72 hr fast after 50-something hours when my levels went to 2.2

Firstly have any of you ever managed RH during pregnancy? I’m considering a third baby but don’t want to be diagnosed with GD again and don’t want to do the GTT again - I’ll just have an initial big spike and then a whopping hypo. From previous pregnancies and times breastfeeding I have really struwho hasggled to manage my blood sugars but I was undiagnosed then so eating lots of the wrong foods.

Secondly does anyone have issues with gluten? Could it be related? I’m gluten intolerant but never used to be.

Also is having a vitamin B12 deficiency related? I’ve had to have injections for this before.

And lastly do you all have your own blood glucose monitors and do you regularly monitor your levels? I have the machine but not the strips or needles because I don’t have them on prescription? Should I be going back to the GP and demanding it? I’ve been discharged by my consultant because I refused medication and wanted to treat this with diet. But if I’m honest I’m struggling. Days at work are easier to manage because I’m less active. But when at home I’m really struggling to cope because I’m always on the go with small children!!

Any advice or knowledge very welcome. This forum is a god send for me. I’ve learnt more from this forum in the last 2 hours than I have from my GP and consultant put together!!

Hi Emily, and welcome to the forum. A big well done on achieving a formal RH diagnosis, as many really do struggle to achieve that.

I'm going to tag @Brunneria and @Lamont D who both have RH, but Lamont_D is a chap, and Brunneria isn't a Mum, but I'm sure they'll be very interested to "meet" you and share experiences.

Good luck with your prospective pregnancy.

 

[Brunneria]

Hi and welcome!

Sorry, don’t have a clue about pregnancy. I can wildly speculate the following, based on my own non-preggers experiences:
- my RH was always controllable with diet - but I didn’t always have the knowledge or self control to maintain that control
- hormonal ‘stuff’ always makes my blood glucose control more difficult, because I crave carbs more, and then have more jangly blood glucose after eating
- I can only imagine that pregnancy hormones could make that worse, but I don’t know by how much

Regarding gluten, YES!
I have found that by eliminating gluten I found that my RH just about disappeared, and my carb tolerance went up.
But in order for that to happen, I had to go strictly gluten free for months. It took 2 weeks for me to start feeling the benefits, and months before I got the full benefits. That is quite a commitment to see if there will be any benefits for you, with regard to your RH.

If you have been diagnosed with an ongoing problem with hypos, then you can make a strong case that you need a prescription for test strips. I would say they are vital if you are driving (have a look at the DVLA regulations for diabetics who are prone to hypos). You certainly shouldn’t be driving if you are at risk of a hypo, and you should be testing before driving. You can argue this with your doc to get strips on prescription, but I don’t know if it will work. I doubt if doctors see this situation often.

Hope that helps!

 

[Lamont D]

Hi Emily and welcome to our forum.
Yours is a often repeating experience because of the limited knowledge on how to get a true diagnosis.
I had a right battle to finally get a referral and was extremely lucky to find a specialist endocrinologists who knew about RH.
There are a few types of hypoglycaemia, did they say which, or just Rh?
Do please read our forum, it is a personal condition and we all have different symptoms and method of treatment, as in gluten intolerance, I'm wheat intolerant but not gluten! Weird or what.
This is the reason why we need to use a monitor and I got my endo to write to my GP to supply a prescription for whatever you need to get really good control. Using a food diary to find which food is bad for you!
The more you read, the mote knowledge you can use for you.
What sort of dietary advice have you had?
Can you figure out why the hypo happens?

In my quest for information around the internet, I did come across some interesting hypothesis about GD being similar to a form of Rh. But no proof, but I would Imagine that being in good control of your blood glucose levels would always help regardless.

Keep asking

Best wishes

 

[Kaz261]

Hi Emily and welcome to the forum.

Well done for getting a formal RH diagnosis as many seem to struggle with this! I was diagnosed almost 4 years ago now and after many months of experimenting with food and feeling pretty rotten at times, I have now practically eliminated most of the symptoms.

I first became aware of my RH about 18 months after having my second child. Looking back now though I think I may have had mild symptoms while pregnant. I was always ravenous and craved carbs all the time!

Like Brun, I find my bs harder to control when hormones are involved so pregnancy could make things a little more tricky for you.

For me, a reduced carb diet has worked wonders. I’m not in ketosis as I don’t seem to be able to get over the “carb flu” period. Without some carbs I am just completely zapped of energy and with 8 and 4 year old kids to look after, I need to have my wits about me!

I have reduced my carbs dramatically to around 100g max per day, but eat more healthy fat and protein.

You need to get a monitor either from your GP or self funded if possible (I didn’t get anywhere with my GP on this one). I did a lot of testing in the early days, but I learned so much. I now only test if I eat something new or a different portion size, or if I feel a bit wobbly.

Incidentally, I was offered Metformin by my Endo, which I refused. He was fine with it and didn’t have a problem with me trying to control my symptoms with diet. I did have to go private though to get a diagnosis.

Good luck with it all.

Kaz

 

[EmilyKB]

Thanks everybody that’s really great advice and so great to hear about other people’s experiences.

Firstly I had not even thought about the driving situation. That’s very worrying. I always have lots of advance warning about hypos and would never drive when I’m feeling unwell.
What has everyone’s experience with the dvla been like??

I’ve only been diagnosed with RH - nothing more specific. My consultant has told me herself she knows very little about RH! But she’s very interested and I had no trouble being diagnosed by her once I was finally referred. The problem was getting the GP to refer me in the first place.

I have found that anything gluten is terrible for my blood sugars too and I have also given them up for a few months. I had been getting chronic hives and terrible tummy aches and they’ve all gone since I cut out the gluten.
But mainly just anything carb or anything sugar is dreadful for me. Also caffeine, heat and any physical exercise really ramps up how quickly the glucose levels drop. When I’m at work I’m mostly at a desk and it’s far easier to manage my levels than when I’m at home with the children and on the go.
I can go a few hours between eating if I have high protein foods. But anything naughty and I need to eat every hour or so.
I’ve recently realised I’ve been lazy and just eating lots of the wrong foods to avoid the lows. I joined slimming world because I’d put on loads of weight. Managed to lose it all but with sw you can have a lot of carbs with potato and pasta and I’ve slipped back into bad habits again and I think I’m keeping myself in a constant state of hyper! Which also isn’t good. It’s all so complicated!

I guess I know what to do - high protein and low carb diet - but I’m just resisting it a little at the moment. I’m hoping if I can regularly monitor I can get a better idea of what exactly is going on and what works best for me.

 

[Lamont D]

Once you realise that to eat carbs makes you ill and affects your health.
And then you find that not eating carbs, gives you energy and makes you feel better, and of course your health improves. It is just a case of sticking to those foods that you can tolerate.
I discovered early that doing more energetic exercise really makes you ill, it does sound weird, but it is weird how our bodies work because of RH, so weird it has to be and some gentle exercise, such as walking, swimming, housework and generally keeping busy will help with control of your blood glucose levels.
In my experience, I go for a fifteen minute walk, fifteen minutes after a small meal.
This not only helps with reducing the spike and digestion, it helps keep the insulin response down as well, it helps reduce insulin resistance and also helps with weight issues, and the most important, is it just doesn't knacker you out.
The longer you low carb, the more energy you have, fasting is the same if you can.
I eat very little these days and use intermittent fasting and I work full time in a very demanding job. On my feet all day. Very rarely do I feel lethargic or tired.
You definitely need to monitor your blood glucose levels and what you eat and discover the foods you can't tolerate. I live by my food diary, I'm so glad I started one years ago. Portion size is important as is how often you eat. You don't have to stick to regular meal times, eat when you want and test and record.

 

[Kaz261]

Firstly I had not even thought about the driving situation. That’s very worrying. I always have lots of advance warning about hypos and would never drive when I’m feeling unwell.
What has everyone’s experience with the dvla been like??


I also never considered that driving would be an issue until I had a letter from the DVLA earlier this year advising me that I need to renew my driving licence. The letter said you need to advise them of any changes in your health and when I looked up the notifiable conditions, hypoglycaemia was listed.

I contacted them and they sent me forms to fill in - all of which were aimed at diabetics. Long story short, they requested that I attend a medical examination at my GP practice (which consisted of my GP answering questions on a form designed for people with diabetes!). He did no physical checks and told me that he saw no problem at all with my fitness to drive.

I await the DVLA’s decision so keeping my fingers crossed! I should hear within the next 6 weeks hopefully, so will let you know the outcome.

Kaz

 

[EmilyKB]

Hi Kaz,
I’ll be keeping my fingers crossed for you too. It all sounds positive though if the GP can’t see an issue with it. Please do let me know how you get on

 

[Brunneria]

If you go to the https://www.gov.uk/health-conditions-and-driving webpage you will find a whole list of medical conditions that need declaring. I was stunned to find out that I should have declared a pituitary gland tumour that I have had (and been driving with) for over 30 years. I was horrified and reported myself immediately! lol.

You won't find RH mentioned, but you WILL find Hypoglycaemia. Just click on the link and follow the instructions.
I filled in a form and sent it off electronically, and got a letter 2 weeks later saying that they were satisfied with my situation but if anything changes (control, meds, symptoms) then I must report them immediately.