Just sharing my story/looking for similar stories

~Nattie~

Newbie
Messages
2
Type of diabetes
Prefer not to say
Treatment type
Diet only
Hi everyone, just looking to join the community, and find some friends who share my condition I suppose. Feeling lonely as I know no one in my real life with diabetes.


My story starts when I was about 12, when I hit puberty basically. I began having extreme low blood sugars, which I would correct by eating up to 5 bowls of Froot Loops lol (not kidding tho). Now that I am more educated I would have considered those definitely reactive hypoglycemia, as it would often happen after taking in large amounts of carbs, like if I had a giant slice of chocolate cake, mmm... So I never saw a doctor, even though it was concerning, I love my parents dearly, but am still confused by the fact they never took me to a doctor until I was 17. At 17 I saw a doctor, was told I was perfectly fine, later in life when I got diagnosed in 2020 at the age of 22 I got to see those old result, found out I was at least considered prediabetic at 17 and not "perfectly okay".

The reason I even went in 2020 was because I was used to checking my sugars when I felt bad, which usually ment catching a low. At some point though seeing lows on my monitor switched to seeing highs upwards to 600-700. By this time I was so scared that I had put myself on a low carb diet after doing minimal research, not the first time I had been on one either, my parents are avid dieters, so I had done low carb a few times in my life. By time I was able to get into a doc a few months had passed doing the low carb diet, but I was still diagnosed with an a1c of 6.5 by my PCP. He considered me type 2 (due to me not being a child), and then put me on metformin. Shortly after diagnosis and getting metformin my a1c began to rise until I hit my highest ever of 8.8 and being on a pretty high metformin dose. The metformin never seemed to make any difference, and all dips in my a1c seemed to only relate with how little carbs I was eating.

I have been off and on my low carb diet for the last 3 years now, and I am to a point where I have to eat such a small amount of carbs to maintain my numbers (between 70-120) i'm 100% getting burned out. I'm miserable, but I have an a1c of 5.1 currently, my lowest ever, and I doubt it will be maintained for much longer, but i'm staying positive. My carb intake probably amounts to less than 10 carbs on a regular basis. I do not indulge. I don't really desire to be so strict either, but the intake of 1 extra gram of sugar messes it all up.

Now 2023 begins and I finally am seeing people with endocrinology backgrounds and getting appropriate tests. I found out in January that I am type 1/LADA/1.5 at age 25 (I really am unsure of which term to use, it is confusing and I only just found out I am not type 2, and have yet to really be given much help with the matter) I have also found out I have Hashimotos tyroiditis, which has been absolutely kicking my butt with symptoms.

Currently my only line of defense for my diabetes is my diet, but I can see why my carb intake has to be so low now as I probably have lost some beta cell function in the last 3 years making my control from diet much harder. I'm in limbo until April where I see an actual endocrinologist, and I am banking so hard on him actually helping, so far no one else I have seen (and shelled out a lot of money for) has helped me.

Anyways that's my story so far, I'm in the middle of a pretty hard stressful time dealing with my health and am just on here hoping to get some of those stressful thoughts out of my head and talk to like minded people. All or any advice is welcome, if anyone wants to share their story that's also welcome. I'm not new to diabetes, but am very new to being type 1/LADA, I know very little about it and next to nothing about insulin. I'm still a bit scared thinking I'll have to be put on it in the next few years due to my new diagnosis. It's clear low carb diets are very important, but it's not working on it's own for me anymore.

This may have been a bit of a my story/vent, and like I said anyone is welcome to share theirs and vent here or to me if they need to. Thanks if you read the whole thing!! Sorry it was long!
 
Last edited:

EllieM

Moderator
Staff Member
Moderator
Messages
9,887
Type of diabetes
Type 1
Treatment type
Pump
Dislikes
hypos and forum bugs
Welcome to the forums @Nattie , you do sound to have been having a difficult time.

Are you confident that you've had the correct tests/diagnosis now? (I am assuming you've had cpeptide and GAD for the LADA/T1 diagnosis but there are a few other types of diabetes that some endocrinologists test for).

As a T1 diabetic for 53 years I am pretty happy both with current technology (cgms are marvellous, I was diagnosed before glucometers existed) and with insulin. If you aren't producing enough, insulin is your friend, and though it may take you a while to get used to it, it really is a life saver.

My understanding is that some LADA folk can avoid insulin for a while (sometimes years) by low carbing, but if your insulin production continues to reduce you will need insulin eventually. T1 diabetes used to be a fatal illness before insulin was invented 100 years ago.

'm in limbo until April where I see an actual endocrinologist
Are you able to check for ketones if your blood sugars go high ? Though nutritional ketosis is fine if you are on a keto/low carb diet, diabetic ketoacidosis (DKA) is a life threatening condition that needs a trip to A&E and insulin if you get it.

Tagging some LADAs/T1s
@Marie 2 who is both LADA and from the US, though she doesn't do keto,
@ert because I know she avoided insulin for a couple of years by low carbing .

@Lamont D may have some comments about the hypoglycemia, though am guessing that may no longer be an issue if your insulin production has gone down???


Once more welcome

ps if you're from the US then you are probably using mg/dL to measure blood glucose. Many of the UK forumites use mmol/L - just multiply their figures by 18 to translate.
 

Marie 2

Well-Known Member
Messages
2,424
Type of diabetes
LADA
Treatment type
Pump
Hugs @~Nattie~ I was misdiagnosed for over 8 years. I wasn't skinny and I assume they automatically decided type 2. I had had an uncle that was a type 1 and I told my pcp and then my endo and asked if I could be a type 1. I was told no and never tested, not until I switched doctors and got a new endo. But like you my numbers had kept getting worse, luckily the medications made me sick and I was put on insulin. LADA is slower progression and some believe going low carb puts less of a burden initially on your pancreas and that delays full onset. 35% of type 1's are misdiagnosed as a type 2 at first and over 50% of people develop type 1 after the age of 30. Medications and lifestyle changes work at first because you still make some insulin for a while as a LADA. Unfortunately the misunderstanding of type 1 being a young persons disease is still way too common even amongst the medical field. Thyroid issues are also very common with type 1, as our bodies like to attack the thyroid too.

You will need insulin. Some people can put it off for a bit by diet. But eventually you need it. I am of the belief the sooner the better. That you get used to using small amounts so you become familiar with it before the choice is taken away from you. It will also allow for more freedom with what you eat.

I never low carbed and still do not. I eat what I want although it's mostly pretty healthy food as I am a vegan. I definitely felt a lot better once I started insulin. That makes sense as I could actually utilize the energy from the food I was eating once I started it. Sure, you have to learn dosing for insulin. The sooner you learn to carb count and the appropriate dose the better. Insulin for us is a lifesaver...... literally. The technology, the insulins out now, let us lead pretty normal lives. We just have to make some adjustments to do so.

I just want to add. I was happy when I heard I was a type 1, not because of being a type 1, but because it explained everything. I had given up asking, but when I switched doctors who then sent me to a new endo, she tested me without me even asking. The frustration of trying to deal with my rising BG levels were explained and while I was already on insulin, I wasn't using it right. With that understanding I really started to thrive and get my BG level under good control. I now average a 5.1 A1c or a 32.

You do need to be careful. We lose the ability to make any insulin. We end up needing insulin for any amount of carbs and even protein. Any amount of carbs, if you aren't making any insulin, can send us into DKA which can make us sick fast. You end up reaching the threshold of not making any or enough insulin. Make sure you have some Keto sticks to test and read up on the symptoms of DKA, it happens fast and if you have symptoms you need to go to emergency pretty quickly.

 
Last edited:

Lamont D

Oracle
Messages
17,601
Type of diabetes
Reactive hypoglycemia
Treatment type
I do not have diabetes
I was misdiagnosed with prediabetes in 2001, then T2 in 2009.
Then, because of my GP not understanding why I was hypo, got referred to a specialist endocrinologist who after many tests, got me a true diagnosis of reactive hypoglycaemia. That was a decade ago.
My quick advice for an appointment is be honest, be prepared, take any recent readings you do make, then ask for the tests you need. Especially with the problems with hashimotos and insulin levels. Make sure the full blood panel tests, includes insulin levels and c-peptide, and if they do them, the GAD test as well.
If you still have high insulin levels and not T1, a six hour extended oral glucose tolerance test could be used for information about how your body copes with carbs.
I have heard of childhood hypoglycaemia, that could explain your early years but to persist, could mean that after So long, your hba1c levels being in higher levels than normal. Hence the diabetes symptoms and diagnosis.
There is no reason why you can't continue with low carb, it has had some impact on your symptoms and your health in some ways.
I have found that being in normal BG levels continuously by using intermittent fasting and having a keto diet is so healthy for me.
If it is Hypoglycaemia in what ever form, a keto diet is a must. Overproduction of insulin is really bad for you.
Get that diagnosis, hope you get an endocrinologist who understands what is happening to you.

Let us know how you get on.

Best wishes.
 
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Messages
9
Type of diabetes
Type 1
Treatment type
Insulin
i think many people don't realize how common misdiagnosis are. I've heard countless stories like these over the years. All the more reason for doctors to go through additoinal testing, if you're gonig to be treating a person with Diabetes. There should be more accountability imo
 

Lamont D

Oracle
Messages
17,601
Type of diabetes
Reactive hypoglycemia
Treatment type
I do not have diabetes
i think many people don't realize how common misdiagnosis are. I've heard countless stories like these over the years. All the more reason for doctors to go through additoinal testing, if you're gonig to be treating a person with Diabetes. There should be more accountability imo
The biggest problem I found and have discussed this with many GP's. That diabetes is a more specific branch of medicine that to be a specialty, needs similar training as an endocrinologist. And a lot of that training is specifically T1, and the continuous misdiagnosis you see are mostly the lack of training but also the textbook teachings of T2, which is based on elements of T1.
And the textbook teachings also don't understand how food and drink that contain too much carbs and sugars impact for someone with an imbalance in hormonal response.
Eating too many carbs when someone is intolerant to them, will never bring high blood glucose levels down.
The Eat well plate is synonymous with no understanding of how homeostasis works.
Believe it or not, too many doctors are prescribing insulin, when the body is all ready producing too much insulin, but because of insulin resistance they don't understand why the body is producing too much insulin with high blood glucose levels, and topping it up with more carbs is just unbelievable.
There is also a reluctance for doctors to advise not eating some carbs, known as complex, healthy, fibre and such. This is because they are taught that our brains need glucose from carbs to sustain brain health. As most followers of keto, will tell you, that you become more clear minded when you don't eat carbs!
Not all GP's are in this group, you get the odd one that doesn't follow NICE recommendations. And through my experience in the last few years, some more including my GP has had the benefit of seeing what low carb diet can achieve without reverting to meds or insulin.

But, the biggest reason why T2 is never diagnosed earlier is due to the fact that during the prediabetic stage is that an insulin levels tests, c-peptide are never done.
This should be done as everyone in adulthood should have these full blood panel tests done every twelve months. A lot of other conditions could be detected earlier as a M.O.T. Prevention has to be better and cheaper than the present system.
If you have spent time in a diabetic ward, you would certainly change this system.

Stay safe.
 
Messages
9
Type of diabetes
Type 1
Treatment type
Insulin
The biggest problem I found and have discussed this with many GP's. That diabetes is a more specific branch of medicine that to be a specialty, needs similar training as an endocrinologist. And a lot of that training is specifically T1, and the continuous misdiagnosis you see are mostly the lack of training but also the textbook teachings of T2, which is based on elements of T1.
And the textbook teachings also don't understand how food and drink that contain too much carbs and sugars impact for someone with an imbalance in hormonal response.
Eating too many carbs when someone is intolerant to them, will never bring high blood glucose levels down.
The Eat well plate is synonymous with no understanding of how homeostasis works.
Believe it or not, too many doctors are prescribing insulin, when the body is all ready producing too much insulin, but because of insulin resistance they don't understand why the body is producing too much insulin with high blood glucose levels, and topping it up with more carbs is just unbelievable.
There is also a reluctance for doctors to advise not eating some carbs, known as complex, healthy, fibre and such. This is because they are taught that our brains need glucose from carbs to sustain brain health. As most followers of keto, will tell you, that you become more clear minded when you don't eat carbs!
Not all GP's are in this group, you get the odd one that doesn't follow NICE recommendations. And through my experience in the last few years, some more including my GP has had the benefit of seeing what low carb diet can achieve without reverting to meds or insulin.

But, the biggest reason why T2 is never diagnosed earlier is due to the fact that during the prediabetic stage is that an insulin levels tests, c-peptide are never done.
This should be done as everyone in adulthood should have these full blood panel tests done every twelve months. A lot of other conditions could be detected earlier as a M.O.T. Prevention has to be better and cheaper than the present system.
If you have spent time in a diabetic ward, you would certainly change this system.

Stay safe.
well said!!!