Reactive Hypoglycaemia, blood tests results and possible LADA?

[Caolain]

Hello its been a while since I posted but I am still facing the same issues with my RH.

I got diagnosed in the private sector by a consultant endo and the public sector doctors ( the endo ) wouldn't accept the diagnosis. He tried telling me "my mind can play tricks on me" and sometimes your mind can trick you. He tried demeaning me and told me he doesnt think I have it but couldnt explain the symptoms, calling them bizzare. I pushed for further testing and refused to listen. I asked for a extended OGTT and GAD65 Antibodies and anti islet antibodies.

My 4hr OGTT came back at 3.7 and I got my diagnosis of RH in the public sector health system. ( I was right again )
My Anti Gad65 antibodies came back at 5.0 U/mL which is worrying for me as sometimes that can be considered a low positive. It said that 0.0-0.5 is neg, then 5.1-25.0 is equivocal and >25.0 is positive. They wrote me down as negative and he made no further comment on it.
My anti islet antibodies came back as negative and I got no blood "level" result for that.
My Fasting C peptide is 1.9 ug/L
My Fasting insulin is 4.27 mIU/L

I dont see this endo until november 2024

Could this possibily be an early onset of type1?


Title edited by mods for ease of search

 

[Caolain]

Ive been diagnosed with reactive hypoglycemia and still experience issues with it. Ive been dealing with this since Early 2020 I believe. I experience constant joint pain, diarrhoea. Ive had ceoliac and chrons rulled out.

Tests:
My 4hr OGTT came back at 3.7 and I got my diagnosis of RH.
My Anti Gad65 antibodies came back at 5.0 U/mL which is worrying for me as sometimes that can be considered a low positive. It said that 0.0-0.5 is neg, then 5.1-25.0 is equivocal and >25.0 is positive. They wrote me down as negative and he made no further comment on it.
My anti islet antibodies came back as negative and I got no blood "level" result for that.
My Fasting C peptide is 1.9 ug/L
My Fasting insulin is 4.27 mIU/L
ANA Antibodies came back as 0.1
I had my CRP latex ( C reactive protein ) tested 3 times in the past 3 years and it has always been 5.00 mg/L

I dont see this endo again until november 2024

 

[Lamont D]

Hello its been a while since I posted but I am still facing the same issues with my RH.

I got diagnosed in the private sector by a consultant endo and the public sector doctors ( the endo ) wouldn't accept the diagnosis. He tried telling me "my mind can play tricks on me" and sometimes your mind can trick you. He tried demeaning me and told me he doesnt think I have it but couldnt explain the symptoms, calling them bizzare. I pushed for further testing and refused to listen. I asked for a extended OGTT and GAD65 Antibodies and anti islet antibodies.

My 4hr OGTT came back at 3.7 and I got my diagnosis of RH in the public sector health system. ( I was right again )
My Anti Gad65 antibodies came back at 5.0 U/mL which is worrying for me as sometimes that can be considered a low positive. It said that 0.0-0.5 is neg, then 5.1-25.0 is equivocal and >25.0 is positive. They wrote me down as negative and he made no further comment on it.
My anti islet antibodies came back as negative and I got no blood "level" result for that.
My Fasting C peptide is 1.9 ug/L
My Fasting insulin is 4.27 mIU/L

I dont see this endo until november 2024

Could this possibily be an early onset of type1?

As you are probably aware, we can't diagnose.
However, in my experience, if you do have RH, then unless something changes to your metabolism and your autoimmune changes, you will probably not get T1 or T1.5 diabetes.
However, again, it is more likely to lead to T2.
I got misdiagnosed with T2 years before I got a true diagnosis.
It was great you battled your way through the health system and I had a similar story to tell about my first specialist he just didn't have a clue.
And My second got me the tests necessary.

A short line on your brain. I say this because there can be some debate about why you go hypo.
Why do you have excess insulin to drive your BG levels into hypos?
From following the science, the brain, has a link between the gut, the organs and the brain, so the pancreas must get a signal to and for the overproduction of insulin.

You are or could be non diabetic. And only control of your dietary requirements, can be the treatment for the symptoms, the reaction and the hypos.
I take it you have read our forum?
If so, diet is very important.

Have you had any advice?
I was given my endocrinologist contact, if I needed him.

Just a final thought, you may need further tests, an eOGTT is usually followed by the tests including a fasting test. As the tests used to a true diagnosis of RH, needs you to spend a few days fasting, to ensure that it is food that is the cause and not your organs or metabolism.

Keep asking and let us know how you get on.

 

[Melgar]

Hi there @Caolain maybe I'm getting my unit measurements mixed up, (I only got as far as an O level in Math and that was a very long time ago!) but it looks like your C-peptides are extremely low at 1.9ug/L I am used to working in pmol/ls so I'm a bit out to sea with that unit of measurement. That said I am sure someone will be along and correct me if I'm wrong. Of course we cannot offer up anything that looks like a diagnosis, as it goes against forum rules, we can just give you our own personal experiences.

I have Coeliac and it is a very positive thing you tested negative for it. I also get a skin reaction from gluten that is also an autoimmune reaction to gluten ingestion. I can, however, relate to what you are saying around getting a proper diagnosis especially when you are getting symptoms that don't make sense to you. I had my c-peptides measured because I was getting hypos and my C-peptides were lowish in the 500's (pmol/ls). I do not produce enough insulin. As I am still controlling my blood sugars they will not do any antibody tests until my sugars go way up (I live in Canada). Which is fine, but I would like to know. They cannot rule out type 1 diabetes, so I feel your pain on that one. As for the antibody tests, some people test positive for low level antibodies and never go onto get diabetes. They can be a passing thing. There are people on here with a better understanding of antibody levels. Obviously your endo was not concerned with your level GAD antibodies.

@Lamont D will be able to enlighten you on all things related to RH. There is a RH forum here with a wealth of knowledge.

 

[EllieM]

Hi @Caolain can you double check the units of your cpeptide result? My googling suggest they should be nmol/l, pmol/l or ng/ml ?

 

[lovinglife]

The moderator team feel that the two threads "Further Testing Results" in the RH forum and "Possible Type 1.5?" in Type 1.5/LADA forum are best combined, as they contain the same information and it's confusing to have two threads about the same thing. We have also deleted some posts from the thread as they were no longer needed

 

[Lamont D]

I think this thread should be in the RH forum.
The op. Is diagnosed as RH.
And if someone who was trying to find information on RH, might be interested in the thread.

 

[lovinglife]

Hi @Lamont D

Moderators are happy to move it to the RH forum if @Caolain prefers it there (just ask in the thread @Caolain)

In the meantime we have edited the title from RH to Reactive Hypoglycaemia so that the search facility will pick it up