Have you heard of this?

A couple of things, first I would see an endo. It sounds very complicated for a local doctor. Generally a lower carb diet helps stabilise BG, there are also some newer meds that may also help. The endo will have an opinion on your 3-4, when not on hypo inducing meds.
When you are on insulin, you need to be above 4. You and your doctor may have chosen 5 for a bigger safety margin.

I hear your frustration. T2 can be an umbrella definition. Perhaps it's time for a second opinion from another endo. If it's insulin dependant T2 and then a reactive hypo period. I wouldn't dismiss a low carb diet helping a bit. Nor one of the newer meds like GLP-1 or DPP4, that can also be used while you are on insulin.

At 100U of insulin, another endo may have some suggestions for the insulin resistance. How did the GLP-1 go when you were on it? It didn't help with the insulin resistance or as in studies a "32% reduction in postprandial glucose excursions"
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7192270/


when you flip, do you feel hypo and can't drive your car? There are no legal requirements when not on insulin.

Hi @Type2RollerCoaster ,

Welcome to the forum.

What insulin are you prescribed when you are needing to use it?
Having low BG without using any medication is not a symptom of type one I'm afraid. Hypos in a T1 (in short.) tend to be a hazard of miscalculated or Ill timed exogenous insulin..? (To name just a couple of reasons for lows.)

There is a condition called "reactive hypoglycemia," which happens regarding low BGs with no medication?
Which could be another avenue for you to explore..
Unfortunatly I know very little with regards to RH. Though I do empathise regarding the low numbers you are reporting.

I'll tag in @Brunneria & @Lamont D who both have RH & may help.

optimist1 said:

when you flip, do you feel hypo and can't drive your car? There are no legal requirements when not on insulin.

Click to expand...

Hi, pending on which country or state.
There may well be a "legal obligation" involved regarding fitness to drive, if registered as an insulin dependant (or any other known listed condition) with the relevant driving authority..

Hi and welcome,

I’m one of the people that @Jaylee tagged in about reactive hypoglycaemia, but if you are eating the same thing every day, at roughly the same times every day, but your insulin requirements are shifting/switching over months, then that is not like any RH I have ever heard of.

To my non-medically trained eye it looks like your pancreas is switching its own insulin production off, then after a while, back on again.

Posters on this forum mention experiences like this in a couple of circumstances (though not to the same extent or regular cycle).

the first is the T1 honeymoon period, while the insulin producing beta cells stutter and fail due to the autoimmune system progressively killing off beta cells. Sometimes insulin injection requirements vary significantly. Then eventually the reliance on injected insulin becomes more consistent and things settle down.

the second is when the pancreas is damaged through injury, or disease (often pancreatitis). This is called pancreatic insufficiency type 3c diabetes. The pancreas is unable to function properly and injected insulin is needed. Again, depending on the pancreatic damage (sometimes bouts of pancreatitis), insulin production can vary over time.

so have you ever had pancreatic issues? And can you get a referral to an endo with experience in that field?
Have they run the tests to establish whether you have T1? These would be to establish if you have antibodies that are killing your beta cells.

my suggestion is that you get a second endo opinion. Someone who understands 3c and can investigate/eliminate that as a possibility.

I will tag in @Tophat1900 since he has 3c and can give his point of view. (Thanks Tophat, I seem to be tagging you regularly at the mo )

good luck, and I hope my comments have helped a bit.

edited for typos

I would hope your endo checked for antibodies, insulin secreting tumours and the other known reasons for these symptoms. This endo seems to have run out of ideas and as I and others suggested another opinion would be warranted.

Jaylee said:

Hi, pending on which country or state.
There may well be a "legal obligation" involved regarding fitness to drive, if registered as an insulin dependant (or any other known listed condition) with the relevant driving authority..

Click to expand...

Yes, the endo would have to change notification. As he went on and off insulin.

optimist1 said:

Yes, the endo would have to change notification. As he went on and off insulin.

Click to expand...

This is how it stands with DVLA. It's the licence holder's responsibility to declare insulin use.
All the doc can do is endorse a fitness to drive..
https://www.gov.uk/diabetes-driving

However, we digress...

Type2RollerCoaster said:

Hi my name is Boston. I was diagnosed with type 2 diabetes in 2019 landed in the hospital with a blood sugar of 40.1 (I live in Canada so I know there is different blood sugar scale here but 5 is normal and I was 40.1) and could no longer see properly. Since then I've been been on a roller coaster that my doctors can't figure out.

For a few months my sugar will be so high that I need Janumet and almost 100 units of insulin per day to keep my sugar under 10 (otherwise it like to hang out at 25+). Then all of the sudden my sugar will drop into the 2-3 range and I have to stop insulin injections completely. I will have to keep sugar snacks on me at all times. This will last for a few months and then bang, I turn back into a raging diabetic for a few months..
Im so tired of hearing the usual speech oh you keep your sugars in a good range remember to eat lots of protein and fiber... what they don't take into consideration is the 100 units of insulin that I have to take per day in order to keep myself under 10 whilst eating almost no sugar whatsoever, and then cutting out all insulin and then forcing myself to eat sugar just to keep my sugar above 5 when I flip again. They obviously don't know the answer so they're just saying what they say to everybody else but I'm not everybody else I have a severe roller coaster going on here and I'm getting really tired of it.
Can you please help me? I can't be the only human being on this planet with this massive problem!
Thank you kindly,
Boston

Click to expand...

Would it be worth asking your specialist anout getting a scan of your organs ie pancreas and/or liver maybe other organs too. Liver can play a big part in insulin production when you’re taking insulin (I only found this out recently) so it might be worth considering. I’m no doctor but to me it sounds like you might have a type of malfunction on one of your organs or other hormones which is interfering with insulin production. I would seek a second opinion if you can. I feel they need to investigate further rather than just blaming it on diet.
It sounds like an awful time for you and can not be good for your mental health not to mention your physical state.

Hi, @Type2RollerCoaster, welcome to the forum.
I have been diagnosed with RH, and for over ten years till I was diagnosed I was on the same rollercoaster ride as you are on, not one doctor didn't think it wasn't type two. Until I had hypo in front of my GP and referred me to a specialist endocrinologist who also saw that I was having hypos.
I was seriously ill. And yes it was down to food.
I would seriously have a think at the similarity of the symptoms you are getting. Have an open mind, what you are experiencing may not be food related but obviously your pancreas does work overtime now and then. You may be experiencing insulin resistance on top of hyperinsulinaemia which is too much circulating insulin, the more insulin needed may not be enough, and for some reason, you have these symptoms.
@Brunneria is right in saying that the way you describe and your specialist can't work it out. It does appear that something is out of balance with your hormonal response. What hospital tests have you actually had?
Have they tested for insulin levels?
Can you fast?

Because of your OCD, this would mean that changing your diet would be a big thing, but if it helped with diagnosis, surely knowing is better than suffering.

Lastly, what is your breakfast?

@Type2RollerCoaster , just to make sure, during this time with rollercoasting blood glucose, have you been on other medication like steroids or antibiotics or such?