Plese help - LADA or RH

[necki]

Hello.

Yesterday, I wrote a message in the Lada subforum, but until now I did not get any answers, then I read the subforum of the RH, and everything says that I have this disease.

On Tuesday, I have an appointment with a doctor, but I have the feeling that they will not seriously deal with me.
How is the RH disease confirmed? Today I had ultrasound of the stomach and the outcome was normal. No tumors or anything similar, in short, excellent results.
What's happening to me? I'm really worried.
My post from LADA subforum:

Hi to all.
I have diabetes type 1.5 aka LADA...or just maybe Type 1 since March 2017. I am 30 years old, 165cm high, 59 heavy.
I was in hospital for 10 days and i started to injecting NovoRapid and Insulatard Insulin.

Since March 2017 I have been injecting a small amount of insulin. 0,5 IU (insulin units) for 1 BU. Sometimes i could eat one small meal without injecting insulin.
I was in honeymoon phase from Mai to August 2017. Then i had one surgery and from August 2017 till now i started again to injecting NovoRapid.

So far everything was fine. The values of hb1ac are completely normal (5.6%) A few days ago my hypoglycemia started.

That's why I stopped injecting insulin again. Now I have a problem that, despite the fact that I stopped insulin, i have daily 3 hypos.
Yesterday i had 46mg/dl.

I took two glasses of coke, because I was very scared. Right after that, I went to the hospital. The doctor says that I was feeding this day incorrectly.

I took almost 8 units of carbohydrate this morning at 2:30. The values were almost normal until 6pm. About 16:30 I ate 2 small chocolates. By then, the values were 120mg / dl. Chocolate caused sugar to rise to 170 mg / dl. But quickly after that, sugar suddenly began to fall, and so it reached 46mg /dl.

I did not sleep with fear all night, because I was afraid that sugar would start to fall off. Happiness did not happen. I woke up this morning with 112mg / dl.
Today I ate around 10:30 the first smaller meal. Maybe 1BU. At around 1:30 pm, the sugar began to start falling again abnormally. Fortunately, I noticed more quickly than yesterday, so I ate one banana, 1 protein candy bar and drank a little coke.
Right after that, I ate one small meal. Black bread, salami and one baked egg. After all, sugar was 90mg-130mg /dl.

At around 17:00 I started to notice that sugar would start to fall again. That's why I ate one smaller meal. It's was obviously too late because sugar has fallen to 66mg / dl. So I drank one glass of coke. At 18:50 sugar was 172mg / dl, at 19:30 it was 111mg / dl.
Because of the renewed fear that sugar will continue to fall, I ate a little sugar from wellion (1shot) (maybe 3ml).

Now the sugar is at 123mg / dl and I hope that by tomorrow it will remain so that I can sleep a little.

I forgot to mention that since January 2018 I am taking Vitamin B12 Methylcobalamin 1000 mcg.
Why do I take this vitamin? I have tinnitus for 19 years and the last case has worsened so much that I can not sleep normally. I have read a lot of articles on the internet so that vitamin b12 can help. And really, tinnitus decreased.

I also read on the internet that vitamin b12 could also cause hypoglycemia. Since I no longer know what to believe, I stopped stopping this vitamin.

I ask for your advice. What to do? I'm very worried.

Thank you. I apologize for the mistakes, because English is not my mother tongue.

 

[Brunneria]

Hi and welcome @necki

Don't worry about your written English. I think you are communicating very well.

I have RH, but no experience of LADA or insulin injections, so I do not know if your current hypos could be caused by a honeymoon period. Maybe your pancreas is suddenly producing far too much insulin due to LADA? And maybe this will stop in the future and you will need insulin injections again?

I will tag in @Juicyj and @himtoo in case they know anybody with LADA who may have experience of this.

Since i have RH i can only give you a bit of information about that.
RH is all about avoiding the hypo by eating foods that keep blood glucose steady and avoiding carbs that cause blood glucose to rise and fall quickly.
I expect that you have been taught about LADA that you need to treat a hypo with sugar and quick acting carbs.
But with RH the trick is to eat in a way that prevents the hypo from happening. To do this, you would need to find out what is causing the high blood glucose that triggers the later hypo. With me, all the sugar in your drinks and the bread, candy, coke and banana would be making me hyper, then hypo. Instead i would be eating meat, fish, eggs, cheese, green vegetables, salad, mayonnaise, butter, olive oil, etc. These would digest slowly and slowly affect blood glucose. So there would not be a hyper then a hypo.

You could try eating like this and see what happens. Eat good meals without carbs and check your blood glucose every few minutes to see what happens. If you have a hypo then treat it immediately. If you do not hypo then you will have a list of ‘safe’ foods. Then you could try eating foods that may have caused a hypo like coke or bread or bananas. Test very carefully to see what happens to your blood glucose. If you hypo after carbs and do not hypo after ‘safe’ foods then you have learned a lot and can discuss that with your doctors.

I am glad that you have experience of insulin, a meter, and understand what hypos are like. That will help you to work out what is happening.

It is important that you find out whether you have LADA or RH so I hope your doctors listen do you and run more tests.

Here in the UK they diagnose RH by doing tests to eliminate other conditions and then you take a 72 hour fasting glucose tolerance test. They monitor your glucose to see when and if you hypo during the test.

I am very sorry you are having so many hypos. It must be making you feel ill and frightened.

 

[Lamont D]

Hello.

Yesterday, I wrote a message in the Lada subforum, but until now I did not get any answers, then I read the subforum of the RH, and everything says that I have this disease.

On Tuesday, I have an appointment with a doctor, but I have the feeling that they will not seriously deal with me.
How is the RH disease confirmed? Today I had ultrasound of the stomach and the outcome was normal. No tumors or anything similar, in short, excellent results.
What's happening to me? I'm really worried.
My post from LADA subforum:

Hi to all.
I have diabetes type 1.5 aka LADA...or just maybe Type 1 since March 2017. I am 30 years old, 165cm high, 59 heavy.
I was in hospital for 10 days and i started to injecting NovoRapid and Insulatard Insulin.

Since March 2017 I have been injecting a small amount of insulin. 0,5 IU (insulin units) for 1 BU. Sometimes i could eat one small meal without injecting insulin.
I was in honeymoon phase from Mai to August 2017. Then i had one surgery and from August 2017 till now i started again to injecting NovoRapid.

So far everything was fine. The values of hb1ac are completely normal (5.6%) A few days ago my hypoglycemia started.

That's why I stopped injecting insulin again. Now I have a problem that, despite the fact that I stopped insulin, i have daily 3 hypos.
Yesterday i had 46mg/dl.

I took two glasses of coke, because I was very scared. Right after that, I went to the hospital. The doctor says that I was feeding this day incorrectly.

I took almost 8 units of carbohydrate this morning at 2:30. The values were almost normal until 6pm. About 16:30 I ate 2 small chocolates. By then, the values were 120mg / dl. Chocolate caused sugar to rise to 170 mg / dl. But quickly after that, sugar suddenly began to fall, and so it reached 46mg /dl.

I did not sleep with fear all night, because I was afraid that sugar would start to fall off. Happiness did not happen. I woke up this morning with 112mg / dl.
Today I ate around 10:30 the first smaller meal. Maybe 1BU. At around 1:30 pm, the sugar began to start falling again abnormally. Fortunately, I noticed more quickly than yesterday, so I ate one banana, 1 protein candy bar and drank a little coke.
Right after that, I ate one small meal. Black bread, salami and one baked egg. After all, sugar was 90mg-130mg /dl.

At around 17:00 I started to notice that sugar would start to fall again. That's why I ate one smaller meal. It's was obviously too late because sugar has fallen to 66mg / dl. So I drank one glass of coke. At 18:50 sugar was 172mg / dl, at 19:30 it was 111mg / dl.
Because of the renewed fear that sugar will continue to fall, I ate a little sugar from wellion (1shot) (maybe 3ml).

Now the sugar is at 123mg / dl and I hope that by tomorrow it will remain so that I can sleep a little.

I forgot to mention that since January 2018 I am taking Vitamin B12 Methylcobalamin 1000 mcg.
Why do I take this vitamin? I have tinnitus for 19 years and the last case has worsened so much that I can not sleep normally. I have read a lot of articles on the internet so that vitamin b12 can help. And really, tinnitus decreased.

I also read on the internet that vitamin b12 could also cause hypoglycemia. Since I no longer know what to believe, I stopped stopping this vitamin.

I ask for your advice. What to do? I'm very worried.

Thank you. I apologize for the mistakes, because English is not my mother tongue.

I have RH!
I think that you need tests!
I know very little about Lada/1.5.
But I do know that insulin is your problem if your scans are ok.
You do have other conditions that could effect your body, hormones that will alter your health.

There is the standard hba1c test to see how your blood glucose levels are in the last couple of months.
There is a c-peptide test and a GAD test to find how your insulin levels are.
There is a two hour glucose tolerance test and a five hours extended glucose tolerance test. These will track your blood glucose levels after quick acting glucose to see how high you spike and if you go hypoglycaemic.
There is a breakfast tolerance test, to see how you tolerate certain food types.
There is a fasting test, over several days, that will see if you have other pancreatic conditions.
Most of these tests are used to eliminate other conditions.
Most of these tests are done under supervision in a hospital.

In my opinion, you probably don't have RH, but you are having rebound effects of getting your insulin right for the amount and type of food you are eating.
This rebound effect is a similar effect we RH ers always get from too many carbs.

Best wishes

 

[necki]

Hello.
For the last 3 days, I have been fed with LCHF diet. Not exactly totally free of carbohydrates. I reduced the carbohydrates by 70% (only 6 BU yesterday). The situation is better, I was without dangerous hypoglycaemia, and general feeling is better. The problem is, because I have no idea what to eat, besides, I do not even have appetite.

I lost a couple of pounds, which of course worries me. I have only 57kg and i am 165cm high.
All these days I measured the sugar even at night and I did not notice any hypoglycaemia at night. Usually, sugar is stabilized from 19:00 in the evening.

Morning sugar was dependent on what I ate the day before. On the first day after this diet, sugar was 4.3mmol / L. The second day was about 5, this morning at 7:40 was 5.7mmol / L. I did not have breakfast until now, the values remained the same.
So far I've done ultrasound of the stomach, which did not show any changes, for example, tumor or something similar.

Today, I have an appointment with doctors, but I have the feeling that they will not have any idea what's happening to me.Now that you have a little more information, I would ask you again, can this be connected with the RH?

 

[Brunneria]

Hi again, glad you are feeling a bit better, even if you don’t have a diagnosis of what happens.

I donkt know which country you live in, so i don’t know which foods are available, but the simplest way to lower carb in foods is by avoiding sweet fruit, bread, rice, pasta, root vegetables including potato, and replacing them with veg that grows above ground, salads, less sweet fruit like berries, meat, fish, eggs, cheese and dull fat dairy.

If you have a look around the low carb section of the forum you will find lots of threads discussing food and food items which may help you.

This link tells you the basis of a low carb diet very quickly and easily.
https://www.dietdoctor.com/low-carb/60-seconds

But please don’t assume that you are not LADA. It is too early to say. This may just be a honeymoon period. You really do need to get tested for a proper diagnosis.

 

[Lamont D]

Hello.
For the last 3 days, I have been fed with LCHF diet. Not exactly totally free of carbohydrates. I reduced the carbohydrates by 70% (only 6 BU yesterday). The situation is better, I was without dangerous hypoglycaemia, and general feeling is better. The problem is, because I have no idea what to eat, besides, I do not even have appetite.

I lost a couple of pounds, which of course worries me. I have only 57kg and i am 165cm high.
All these days I measured the sugar even at night and I did not notice any hypoglycaemia at night. Usually, sugar is stabilized from 19:00 in the evening.

Morning sugar was dependent on what I ate the day before. On the first day after this diet, sugar was 4.3mmol / L. The second day was about 5, this morning at 7:40 was 5.7mmol / L. I did not have breakfast until now, the values remained the same.
So far I've done ultrasound of the stomach, which did not show any changes, for example, tumor or something similar.

Today, I have an appointment with doctors, but I have the feeling that they will not have any idea what's happening to me.Now that you have a little more information, I would ask you again, can this be connected with the RH?

It's good you are feeling better because you lowered your carbs intake. If you are asking for an opinion, I'm not going to oblige because Hypoglycaemia can only be diagnosed by hospital tests, but there is definitely something there!
If I was you I would definitely, stay away from carbs. It helps with control and how you feel.
Now that I know you have a way of testing, you could start keeping a food diary.
In this diary, you can monitor your food, how it affects your blood sugar. Testing before eating, one hour after, two hours after, then if necessary three hours.
This way you can see which foods are causing the symptoms.
This will also help with your medical team. It will also help you see trends on how you are feeling, with the results and trends as you progress.
I would still insist on an endocrinologist, you need the tests!

Let us know how you get on.

Best wishes

 

[paulus1]

please go to your doctor and request a test. to be lada you would have had to have tested positive for the gad test. as your not using insulin at the moment. i would be concerned that your going low. i dont like the sound of your condition its not normal for diabetes. you must eat

 

[SimonCrox]

I would never be patronising, but your English is excellent; if I spoke a second language this well, I would be very pleased and very proud. May I ask what country you live in and what your mother tongue is?

I agree with the above, vitamin B12 is not known to cause hypoglycaemia, but it probably would not do any harm if a dose or several doses are a bit late.

So the problem is that you have developed hypos with symptoms and low glucose values eg 46 mg% = 2.6 mmol/L. Your BMI is about 21.6 ie normal weight.

So, several possibilities.

1: You have some other form of diabetes / glucose intolerance, and not type 1 diabetes. Have you lost weight, which might have corrected ketosis prone type 2 diabetes? Did you have some other acute illness / infection when your diabetes was found? Did you have thirst, passing a lot of urine when diabetes diagnosed? Did you have raised ketone levels when diagnosed?

2: Your insulin might be working longer than expected if your kidneys were not excreting it; you might go hypo if your thyroid glands or adrenal glands were underactive.

3: Starting some medication might make you hypo eg quinine, and tramadol; ACE inhibitors have a slight effect also

4: stopping some medications eg steroids, olanzapine/quetiapine,salbutmaol tablets, thiazides and beta blocker tablets which raise the glucose level, might cause hypos.

Bottom line is you need to see your doctor about this.

best wishes

 

[necki]

I turn to the forum again to try to clarify all the events in my body.
So far I have tried low carb diets, which somehow worked.

Then I slowly returned to normal meals, where I was getting more and more carbohydrates.
The problem is because I do not know exactly how to eat, because the situation is constantly changing every day.

For a few days, the sugar after a meal was 8.3-9.4, which then slowly drops from 5.5-6.6, a few days later sugar was after the meal also 11. For example, on Saturday sugar was after one small meal 14.

I did not want to lower my insulin, because I was afraid that the sugar would fall again. It was around 20:00 in the evening; sugar in the morning was around 7.7.

From the last Saturday, episodes of hypoglycaemia recur.
Whenever this happens to me, I go to the Internet to read about the symptoms and I always get on the Inuslinoma tumor. Is there a chance I have it? Ultrasound, as I already wrote, did not show anything, but maybe it can not be detected at the ultrasound such a type of tumor?
What tests should I ask my doctor?

In 2 weeks, I have an appointment where they will re-measure the amount of insulin in the body, anti-body and everything that is usually tested, to establish a diagnosis of diabetes.
To the question or I had ketones in my body, I answer yes. When I was admitted to the hospital last year, I had ketones in the urine.

What worries me most is the possibility that I have a tumor.

 

[michita]

Hello

I had similar experience. I'm Gad antibody positive and type 1/Lada.

if you are using insulin and experiencing hypos it might be just a matter of miscalculation/mismatch but apparently early stage type 1 itself (without insulin) could give you RH like symptoms.

Prior to diagnosis I suffered from sever and frequent RH like symptoms and I asked this question. In my case I feel being on a high carb diet made the symptoms worse and didn't help.

 

[Brunneria]

I turn to the forum again to try to clarify all the events in my body.
So far I have tried low carb diets, which somehow worked.

Then I slowly returned to normal meals, where I was getting more and more carbohydrates.
The problem is because I do not know exactly how to eat, because the situation is constantly changing every day.

For a few days, the sugar after a meal was 8.3-9.4, which then slowly drops from 5.5-6.6, a few days later sugar was after the meal also 11. For example, on Saturday sugar was after one small meal 14.

I did not want to lower my insulin, because I was afraid that the sugar would fall again. It was around 20:00 in the evening; sugar in the morning was around 7.7.

From the last Saturday, episodes of hypoglycaemia recur.
Whenever this happens to me, I go to the Internet to read about the symptoms and I always get on the Inuslinoma tumor. Is there a chance I have it? Ultrasound, as I already wrote, did not show anything, but maybe it can not be detected at the ultrasound such a type of tumor?
What tests should I ask my doctor?

In 2 weeks, I have an appointment where they will re-measure the amount of insulin in the body, anti-body and everything that is usually tested, to establish a diagnosis of diabetes.
To the question or I had ketones in my body, I answer yes. When I was admitted to the hospital last year, I had ketones in the urine.

What worries me most is the possibility that I have a tumor.

I can understand how worrying this must be.
Waiting for test results is the worst part of it. Then as soon as the results come in, we move on to the next stage, whatever it is.

I can’t give you any advice about the likelihood of an insulinoma except to say that they are very, very rare, usually operable, and people can make a complete recovery.

If it helps at all, I have a benign tumour of the pituitary gland. It produces excess amounts of prolactin, not insulin, but it has been there about 35 years, and I am still here, and very happy about it. Expect to be here for a few more decades too!