Feeling a bit lost! Just RH or not?

Type 1 and LADA
1

Hey everyone! I’ve read quite a few forums and looks like many of you have lots of helpful information, would love some insight if you could read my story pleasee

I’m 27, healthy weight 55kg and active. My mum has graves disease and raynauds and my dad has rheumatoid arthritis.

A few months after I caught covid last year I started having odd unsettling symptoms (not sure if it’s related at all but just throwing it in there) they were going on for months before j figured what I was actually experiencing was reactive hypoglycemia.

This came about after my gp found a slightly high bg of 8.1 while testing me for something else. As soon as that happened I bought a checker, I drank some of a sugary drink and my bg spiked to 11 then dropped to 3 and caused nasty symptoms.

So I rang my gp and told him and he tried to dismiss me saying ‘it’s normal for blood sugars to fluctuate’ ‘eat something if you think its low’ after a few dismissive doctors one took me seriously and got me an appointment with a consultant endocrinologist. The consultant hands up said ‘I don’t know what is wrong with you, I’ll order an OGTT’ I told him I’d read reactive hypoglycemia can be a condition on its own with no underlying cause. He said ‘it CAN but its mostly only seen in overweight people’ he wasn’t convinced it was just spontaneous RH in my case so ordered GAD antibody test and to measure c-peptide during OGTT.

Fast forward to the test I did spike and eventually drop to 3.0.

These episodes started becoming more and more frequent to the point it was happening every day. The highest reading I’ve gotten is 11.6.
It’s very erratic and hard to predict, sometimes it won’t spike much at all or send me in to a low, sometimes even so little as a piece of bread spikes me right up then drops me in to a low, sometimes it will stay high for over an hour before it drops. Sometimes I spike high but it will drop significantly (not in to a low) then start climbing again. It’s not just if i eat a carb heavy meal, just seems like my pancreas has no idea what it’s doing.

My fastings seem higher than they were 4 months ago when I started testing. are always over 5.5, usually about 5.8-6.3, highest being 6.7 after 11 hours fasting.

My doctors seem like they just have no idea what to tell me, from what they tell me I get the impression if they’ve come across RH the person has been overweight

I went to my results appointment a couple of days ago, I got a different endo from the first one and he diagnosed me with reactive hypoglycemia. He didn’t give me any information other than denying me a blood checker because I won’t ‘pass out’

I asked him if there was any chance this could be a warning or turn in to diabetes, he told me ‘absolutely not’ and I asked how can you be sure and he said ‘it just won’t, you’re slim it’s ok’ I then asked ‘OK do you know why I have I randomly developed this?’ And he said he doesn’t know. I found it rather odd he was so sure it was just RH and COULDN’T turn in to diabetes when the original doc wasn’t convinced it was just RH. I asked for my c-peptide results and he said they haven’t got them back yet. I thought c-peptide results could be quite telling? The GAD was negative, he didn’t tell me the actual number, they haven’t run any other antibody tests.

I told him I was concerned about my fasting numbers and he told me a fasting of 6.7 was totally normal, is this true?

My symptoms can get quite bad… headache (sometimes severe), weakness, blurry vision, fast heart rate, sweating anxiety etc. And occasionally confusing and slurring words. I thought it was odd he told me I didn’t need a blood checker when other doctors have told me not to drive if its below 5 lol

Anyway I’d love to hear some guidance! I feel a little lost with it all and not sure if I should feel satisfied with what they told me or if I should push for more answers?

I have seen before people having similar symptoms before being diagnosed with LADA, I’d love to hear your stories and if anyone experienced anything similar during their onset?

Thanks!:blush:

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I don’t think any of these doctors have given good advice yet. Reactive hypoglycemia is a real thing and many of us have experienced it before diagnosis. I am a T1D and experienced RH episodes in the year before my diagnosis of T1D at the age of 30.

My understanding of RH is relatively simple. A healthy pancreas releases insulin in two phases. The initial phase is a relatively large release of stored insulin in response to a meal. Then the pancreas releases a steady drip called the second phase. The second phase is intended to clean up any glucose that the first phase insulin missed.

It is common with diabetes for the first phase insulin response to fail first. When the body senses high blood sugar after its first phase release effort does not do its intended job, then the second phase insulin secretion is pushed harder. If this second phase insulin over-produces for the amount of glucose in circulation, it will drive the person into hypoglycemia.

Normal fasting blood sugar runs from 3.9-5.5 mmol/L (70-99 mg/dL). A fasting sugar of 6.7 is not normal but it is not extreme either. It should serve as a warning to yourself and your doctor that your blood glucose metabolism is not healthy. I sometimes think that doctors do not like diagnosing any condition that is borderline or in a gray zone.

When you get your c-peptide results, that may help clear up your situation. If you are developing LADA, Type 1 diabetes, the number may not be below the lower limit but it will be lower than usual. If the c-peptide is above the upper limit, that’s suggestive of T2D.

Someone who is experiencing slow onset T1D or LADA can be caught before their c-peptide drops below the lower lab limit. Don’t let this extinguish your curiosity. It appears that it’s your job to stay curious enough for both you and your doctor! Persist in your inquiry until you get answers that satisfy you. Good luck.

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This is a little ‘out of the ordinary.’ Its gonna trip up the Doc’s, so you will need to keep a close eye on them.

I think that you should have a blood sugar checker in your car, at home, and at work. You might not pass out, but if your having bad symptoms, it can interfere with your ability to drive safely or perform your job.

Give yourself a little cushion while you get to know how this might effect your day to day life. For example, maybe you want to leave the house 15 minutes early on the drive to work incase you don’t feel well and need to pull over for 10 min to recover.

You could try eating less carbohydrate and see if that helps prevent some of the wild swings in blood sugar.

It sounds like you are able to feel low blood sugar very well and know when it is occurring. Fix it and then allow yourself 15 minutes to recover from lows before doing anything too important. That will help prevent accidents.

It doesn’t hurt anything at all to keep on the lookout for LADA…just in case. If you do develop LADA, the Docs are not good at diagnosing it, so expect to have to “stand up for yourself” and be pushy. It sounds like you are being very proactive and doing a very good job. Keep on with the good work!

Anybody feeling like they want a check for hyper/hypothyroid? Any possible relationship? Hashimoto's Disease and Blood Sugar Imbalance | Paloma Health

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I have had reactive hypoglycemia too, it’s actually quite common in type 1.
I was experiencing it as my first symptoms but I didn’t know what it was. Eventually it turned into type1 diagnosis.
It took a few months from the early symptoms.

People who are older are the ones who usually are tagged with that diagnosis of LADA,and often it progresses slowly.

That’s why doctors often diagnose it as type 2.

It’s not normal that your sugars go that high.

I hope you can convince a doctor to do some type1 antibody testing so you can sort this out.

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@Katerinax, there is a lot to process in your question. 6.7mmol/L or 121mg/dl are not extremely high, but are not normal. As to reactive hypoglycemia, some of my earliest memories are of hypos that I thought were just normal hunger. It wasn’t until I was diagnosed and was talking about needed to eat because of the shakes.

My co-worker, did not understand what I was talking about. That was a lightbulb moment for me. Regular episodes of hypoglycemia is not something most people experience.

The cause of the majority of RH is generally unknown. As a type 2 DM, I think in my case it was caused by insulin resistance.

When BG rises after a meal the Beta cells secrete insulin. Those of us whose glucose receptors resist the attachment of insulin will experience BG levels above 6.7mol/L (121mg/dl). This stimulates the Beta cells to secrete more insulin in order to overcome this resistance and to reduce BG levels to normal.

This surge of insulin can really drop blood glucose levels to below normal resulting in hypoglycemic symptoms.

From the Mayo Clinic’s M. Regina Castro, M.D.

  • Eating a balanced diet, including lean and nonmeat sources of protein, and high-fiber foods, including whole grains, fruits and vegetables
  • Avoiding sugary foods and processed simple carbohydrates, such as white bread or white pasta, especially on an empty stomach
  • Eating food when drinking alcohol, if you drink
  • Eating several small meals and snacks throughout the day, about three hours apart during waking hours

Reactive hypoglycemia usually presents around 2 1/2 to 3 hours after a meal. A diet that eliminates all simple carbohydrates and restricts complex carbs reduces the spike in blood glucose levels and the resulting spike of insulin levels.

Along with this is a mid meal snack of of a food with a balance of carb/protein/fat can stave off a hypo before it occurs. The temptation to eat a lot of high carb foods during a hypo is the wrong way to go. That begins the cycling again of high BG, high insulin and another hypo.

Some have mentioned that the experienced RH prior to developing type 1 DM. That may well be, however, people who have reactive hypoglycemia are more at risk for developing type 2 DM.

As to your doctors, I just don’t know what to say.

One other thing, some 6% to 12% women of childbearing age have poly cystic ovary syndrome (PCOS). PCOS can really affect metabolism, especially of blood glucose management.

I just met with an endo yesterday for the first time. When I was looking at available endos, I learned that there are endos and then there are endos. By that I mean there are specialities within the field.

I was lucky, I did not know anything about this doctor, who was referred by my primary care physician. He is an endocrinologist, specializing in diabetes and metabolic disorders.

There are still some doctors, regardless of gender, who turn a deaf ear to the concerns of their women patients. I don’t know if this is the case here, but it certainly happens. My wife was having a severe UTI that required a surgical procedure. One urologist suggested a prescription of a tranquilizer.

Good luck to you, Katrina. Try the carb restricted diet with the small mid meal snacks.

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Thank you for your responses everyone!

I did think it was silly that the doctor said I wouldn’t need to be in possession of a blood checker. I have a cgm on to monitor as it helps me to prevent a low before it happens, self funded ofc.

I do find my blood sugars rise considerably as I wake up, I imagine this is due to dawn phenomenon? It is common for that to happen when you just have reactive hypoglycemia? Or is that indicative of lack of insulin or insulin resistance? I know the same process happens in nondiabetics but from what I’ve read the insulin secretion happens at the same time to stop a noticeable rise.

I did have a follow up appointment for Dec 31 in which my doctor was meant to check up on me and do my A1C again. But I just got a letter saying it’s been cancelled and I’ll have an appointment after I do the 72hr fast (if required) so assuming I don’t have a tumour there will be no more appointments, essentially abandoned by the endo team. I also assume that means they aren’t planning on informing me on my c-peptide results… there were some tests done that they never informed me of the results until I asked at my appointment. The doctor actually argued with me that I had recieved my results in the post but they were different tests he was referring to.

I was wondering why the doctors seemed so clueless about anything blood sugar, when I asked one about antibody testing he said it wasn’t his area, and would maybe explain why the other doctor thought 6.7 was a normal fasting number. They are general medicine endos not specialists in diabetes.

Someone else with reactive hypoglycemia told me I should be on the diabetes register now and have an eye kept on me and recieve medical checks. But by the looks of things that’s just me sent on my way. I know it could just be RH but I have been told it’s odd and unlikely as I am young, active and a healthy weight.

I feel a bit let down by the medical team by being misinformed and told there is nothing wrong with confidence without them even having my cpeptide results, and not willing to do any more followups or antibody testing.

Not sure where to go from here, online it always says best to catch anything early but in real life seems doctors don’t wanna know until you are hospitalised for high blood sugar :confused:

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I suspect we’re stuck in an old paradigm where no one wants to give a diagnosis of “diabetes” without an elevated HbA1C or a very high random glucose — I believe 11.1 mmol/L was the cutoff for random. Maybe this is pre-diabetes?

Here’s an excerpt:

An FPG level >126 mg/dl (7.0 mmol/l ) or a casual plasma glucose >200 mg/dl (11.1 mmol/l) meets the threshold for the diagnosis of diabetes . In the absence of unequivocal hyperglycemia, the diagnosis must be confirmed on a subsequent day. Confirmation of the diagnosis precludes the need for any glucose challenge.

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My sugars do spike over 11.1 sometimes but in the case of reactive hypoglycemia they do not seem concerned with any highs as it doesn’t stay there past the 2hr mark.

I did tell a doctor my concerns that my sugars spike that high at all and how there is commonly glucose in my urine from the spikes but the doctor said it didn’t matter and he would ‘understand if my sugars were at 26’ his words I believe.

I did express my worries of prediabetes or a progression to type 1 or 2 because my fastings are in the prediabetic range often but he brushed it off saying there’s no risk and those fastings are normalm

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just an update. The doctor I previously described has sent a letter to my gp. I honestly don’t know what to do with that or think about it.

On the day as I previously described he told me my sugars went to 3.2 (what they caught) it was 2.8 at its lowest on my meter which I compared with the hospital one multiple times and they were the same value, however this was a different time than when they drew blood.

I asked if he was going to diagnose me with something and he said ‘yes, it’s called reactive hypoglycemia’ he then proceeded to deny my request for a blood checker saying I don’t need to check despite it being clinically too low to drive, leaving me with no way to know.

Well to the letter he sent to my gp he has written ‘possible reactive hypoglycemia’ as diagnosis, even though he diagnosed me with it during the appointment. He also lied and said in the letter that I requested a CGM funded by the NHS to which he declined. I did not ask for this as I know they are only licensed to give them to type 1 diabetics.

He has also pointed out in the letter that he told me that it’s doubtful my symptoms are blood sugar related??? This did not happen, he told me they are low but I would not ‘pass out’ in his words. How can he say they are not even related to blood sugar???

He also states he denied my ‘request’ for a cgm as apparently it is doubtful my symptoms are due to hypoglycemia, what?

I am so confused, none of this is what was spoken of or said during the appointment, he diagnosed me with reactive hypoglycemia during my appointment and now he is telling my doctor my symptoms are not due to hypoglycemia or even blood sugar related. How can this be?

I know they didn’t drop dangerously low but still low enough for any reference I’ve read including NHS to be in fact, hypoglycemia.

The NHS site says not to even drive if its under 4.4, if it’s under 3.5 you are hypoglycemic and should treat it and retest in 15 minutes. But he’s saying with 3.2 my symptoms are not even blood sugar related at all?

I really don’t even know what to do with this one. I rang his secretary and asked to speak to him to ask him to clarify his letter and misinforming my doctor with conversations that didn’t happen. And how he diagnosed me with reactive hypoglycemia then said my symptoms have nothing to do with hypoglycemia in the letter.

Feel so confused and betrayed at this point by them, regardless of the lies it just doesn’t even make sense to me at all.

I feel massively violated that he’s lied so much about what happened and what was said etc

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Are you seeing lows overnight that have a corresponding morning high?
It sounds like dawn phenomenon.

You can purchase an over the counter A1c checker.

https://www.walgreens.com/store/c/walgreens-at-home-a1c-test-kit/ID=prod6248361-product

This happened to me recently. In my area, I know that the labs are totally overwhelmed and backed up with samples, and so they are super slow to process. Your going to need a different Doc. This one sounds difficult. There’s absolutely no reason why you can’t call the nurses and ask for the test results. If they can’t tell you, there’s a problem. Our covid incidence is off the charts here again, so that’s why I suspect I am seeing the system start to fail in minor ways. It might be similar in your area.

Be persistent and find a new provider - preferably one with good nurses. You have interviewed this Doc and he is not a good fit. That happens. Try not to take it personally. If you didn’t schedule with someone who was recommended to you, then they prob just set you up with the dude who had the most openings (who is often the guy that no one wants to see). Think of it like a bad blind date. Endos have been changing jobs like crazy (just like everyone else).

Its possible that you are destined to become a diabetic. It doesn’t hurt to shop around for someone you can do business with. The most urgent thing on your plate is to find a way to manage those lows if they are making life difficult for you.

Are the lows making life difficult?

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They have been troubling me, especially with major drops rapidly impacting my ability to drive.

However, in more recent weeks I haven’t been feeling many lows, it still drops but not to a point that I am symptomatic.

I don’t know if it’s just resolving itself? Is that common with reactive hypoglycemia?

I was wearing a cgm when I was particularly bad, I found the odd time around my period it would drop into lows multiple times a night then raise when I woke up. I noticed a pattern using the cgm that it always dropped significantly during my period, is that normal?

But yeah I haven’t dropped actually low in a few weeks, my fastings the last couple of mornings were around 6.1. Is it common for it to just resolve on its own or is it possible this could be my sugars creeping up? I really dont know.

The endo cancelled my next appointment so he has kinda kicked me out of the endo clinic by telling my doctor it has nothing to do with blood glucose levels.

Thank you for your response!

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Also btw I have had my thyroid checked and it is all fine and they checked my cortisol levels etc too so is not addisons

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I think you are over-reacting to your doctor. I don’t know what you are reading about driving, but I suspect it says something like “don’t drive with a low Blood glucose IF YOU ARE A DIABETIC TAKING INSULIN”. Which doesn’t apply since you are not diagnosed with diabetes, and are not taking medication.

Anecdotally, I used to work with a skinny guy in his 30’s who had reactive hypoglycemia. I don’t know how old he was when diagnosed, but it did not change to any type of diabetes in the 15 years I knew him - but he still had RH. He never needed medication, just diet changes. Maybe you can explore that with a dietitian.

And I agree with your doctor that you don’t need a glucose meter, let alone a cgm. Since you have apparently bought a cgm anyway, bear in mind that the numbers reported by the cgm are at best approximations and not actual BG measurements. For someone like me, an insulin using T1 diabetic, they are great for watching developing trends. But I never consider the reported numbers to be actual BG readings.

Be glad you don’t have diabetes - it is, to put it mildly, a PITA. The best good use of a meter or cgm for you would be to check which meals give you a reactive low, if any, then eliminate those meals, after which you should hopefully be able to lose your meter/cgm in the back of a kitchen drawer.

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