Not sure what's going on neither do my GP or endo

[Enyaj_84]

Hi it's a bit of a mystery but during my second pregnancy I began hypoing going as low as 2.5, it never resolved on delivery. It got worse. Up to 10 hypos a day. They presumed I had an insulinoma but tests ruled that out.

3 years ago fasting insulin was 5.6. Cpeptide was 1.71 and sugars were 4.2. however 2hrs after meals I would sit anywhere between 3.2-9.8. I started low carbing yet saw no improvement. endo started me on acarbose 50mg which sometimes helped sometimes didn't. I began chromium supplements which definitely helped more. So for two years I was low gi very low carbing and medicated I saw periods of improvement then nothing.

Fast-forward to this year. I delivered baby number 3 and developed ketones and sugar in my urine. gtt at 24 weeks showed fasting at 3.9 non fasting at 3.0. Very bizzare. I noticed I had to up my carbs (still low gi though) and eat very often. I delivered my baby and things resolved for 4 weeks then at that point ketones were high, sugars were all over going from 3-8.8 so I began low carbing, acarbose and chromium again. symptoms briefly improved but weeks later ketones reappeared and I have funny turns of extreme muscle weakness, burning, chest pains, stomach pains and a violent head ache. I can't again function unless I eat carbs and small amounts of sugar. This happens a lot each day. Odd considering this time last year they would make me hypo. We went private for a gtt with insulin and cpeptide that showed fasting insulin now 3.9, cpeptide at 1.66 and sugars at 5.2. non fasting insulin at 25. cpeptide at 6.55 and sugars at 5.3.

GP and a+e have advised I stop all meds and supplements until endo reviews me at 6 months pp. They feel my diet, meds and supplements are possibly hiding something.

I feel it could be lada. Any thoughts welcome. Sorry it's a long read.

 

[Lamont D]

Hi,
Obviously we cannot diagnose you, but as someone who is just as weird as your results are showing, the main thing that comes across from your post, is your GP and specialist doesn't have a clue.
My advice, and I've been down this road, as all my GPs(a lot!) And a certain endocrinologist really didn't have a clue what was going on.
You have to ask your GP, to refer you to an endocrinologist that really knows how to diagnose unusual endocrine problems.
You have to fight your corner and get the treatment you need.
Was the OGTT, (oral glucose tolerance test) a two hour or prolonged test?

The only treatment my weirdness has is very, very, very low carb!
You do have to get through the initial cold turkey process of having only natural carbs in protein and vegetables. Once past that period, you should find that quite a few symptoms will disappear. I'm not saying that the diet is the only way forward but it has worked for the weirdos that have RH!

My condition has normal glucose levels, negative c-peptide, fluctuating bloods when eating carbs and most importantly hypos.

Keep on at your surgery, fight for a good endocrinologist, don't let them fob you off.
I eventually got mine after a decade of feeling absolutely rubbish.
My life changed through diagnosis and changing my diet.
Hope you do!

 

[Enyaj_84]

Hello Lamont D and thank you so much for your response. I realise it's a long read.

I had completely cut out carbs and saw no improvement (fasting sugars were hitting 6.9) which is why my endo started acarbose 50mg 3 times a day. I decided to try them again recently and saw no improvement (although fasting sugars are about 5.4 atm) it's confusing everyone. We have fought hard over the years and been through 3 hospitals with this. It's actually draining me this time. People have given up helping which is why we turned private, maybe it's not a bad thing getting fresh ears. it was a 2hr gtt I had.

I just don't hypo anymore and have high ketones which confuses us all some more. These funny turns take longer to come out of and requires carbs. I could bring myself out of them with nuts and cheese previously and felt better instantly.

I am pleased to hear you got a good endocrinologist and managed to work out what worked for you this gives me hope. I will keep fighting on.

 

[Lamont D]

Hi @Enyaj_84
There is a condition that I came across a while ago whilst researching my condition. It is called 'idiopathic postprandrial syndrome'.
It has all the classic symptoms of hypoglycaemia but you don't go hypo!
The symptoms are as similar to what you describe.
Of course, I could be talking rubbish.

There is a thread in our forum, go to top of page, click on forums, scroll down to the Reactive Hypoglycaemia forum, click on that, it on the second page.
Read and come back and ask questions.
It also has a good page written about the condition on Wikipedia.

Alas, as with all these weird conditions, it is controllable by diet. There is no magic pill! But a healthy individually balanced low carb diet should work for you.
Best wishes.

 

[Enyaj_84]

That's not something I have come across before. Thank you. I shall look it up and also pop over to the RH forum and have a read.