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Do you have these symptoms?

Do you have these symptoms?

  • Yes

    Votes: 2 66.7%

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L

Lunaray

Member
Messages
6
Hi, I’ve been ‘diagnosed’ with prediabities/ hyperglycaemia however my doctor also suspects that I could be something else entirely and I wanted to ask if anyone has symptoms like me?
I’m a female 32, 5.5ft, 8.3 stone. I’ve been suffering from this for over 10 years.

I can not eat anything with wheat or sugar or consume large amounts of carbs without swelling up.
Also I’ve found anything refined, or even alternative sugars like maple syrup or honey are a big no for me. (small amounts of complex carbs are fine as long as I keep to a small serving.)
Also NO alcohol.

Symptoms include;
  • Face and eyes swollen
  • Blurred vision
  • Fatigue
  • I become swollen the next day after sleeping
  • Sleep for normally the next 3-4 days (getting up for water, food and bathroom.) I do not leave my bed. I feel better the next week or so.
  • Brain fog
  • Mouth feels dehydrated
  • Painful hands, painful enough to not be able to make a fist.
  • Painful legs, bellow the knees. Most of the time it’s the most painful part.
  • Migraines (I sleep in a dark room for what I call my recovery time.)
  • Moods swings (during this time and I don’t want to talk to anyone.)
  • Red rashes on my face and itching
  • After eating for example a spoon of honey I feel really energetic, heart beating then I crash and feel super tired and weak. (Then the next day I get swollen and as described above I have to wait a week to feel normal again.
  • I also, after eating these types of foods never feel full (literally feel ravenous all the time) and want to continue eating the things I can’t, it turns to a vicious cycle. I gain weight and then diet and it’s an endless cycle. I’ve never been above 8.10 stone.
  • Stress also triggers this and so does vigorous exercise.
I’ve been told to loose weight by my doctor 7.0 stone although I’m finding this very difficult.
I’ve been told to eat complex carbs (which has helped!) and to do exercise 1 hour after eating the complex carb meal, which has also helped.
What has also helped which I’ve found on my own is lemon, vinegar and fermented foods which get my swelling down and relieve me of pain.

I’ve gotten better with a lot of trial and error of what I can and can not eat, but saying no to all desserts and baked goods has been a struggle for me.

I’ve spoken to my mum and grandma and it seems to me they had the same problem however now they both suffer from diabetes. I assume my condition is hereditary and so does my doctor.

If you know of anyone or have these symptoms I would be grateful if you could just remark as my Doctors have had a hard time diagnosing me.
(Also i may have missed a few things so please feel free to remark if you feel you have additional symptoms.)

Thank you so much

Luna Ray
 
Lunaray said:
  • Face and eyes swollen
  • I become swollen the next day after sleeping
Click to expand...
Sounds like an allergic reaction to something to me - see if your doctors can do some tests to find out what it is you're allergic/reacting to, might be more than one thing - obviously I'm not medically trained but to me that sounds like a bad reaction that you need to find out the cause for (so that you can avoid it)
Lunaray said:
I’ve been told to loose weight by my doctor 7.0 stone although I’m finding this very difficult.
Click to expand...
According the NHS's BMI calculator, 7 stone would put you quite underweight for your height, not surprised you cant get there.
 

Thank you for you’re reply.
My doctor is a diabetic specialist and I did think it was weird that he told me to lose that much weight as I know I’m not fat. I’ve changed my diet multiple times for trial and error and found that a vegan diet suited me best as it helps me stay away from a lot of desserts, processed foods and baked goods. (Which took me a very long time trying to stay away from.)
I’ve been feeling a lot better due to my diet and I can now finally exercise with no problems!! I have completely cut out wheat and sugar and substitute with rice and oats as my primary carbohydrate. Complex carbs work best with me. Also I eat tofu and whole foods limiting my sugar to a small portion of fruit everyday. I have to eat small portions throughout the day, however the only challenge is going to be when I’m out and keeping packed lunches and snacks wherever I go.

Another annoying thing is the fact that when I see a new doctor (as I have seen multiple and abroad) is that they want to see me in my bad state, they get me off of my diet and want to see me at my worst. I so badly want to be diagnosed so that I know what I have. I’ve been going round in circles for over a decade. I don’t think I can go through this again so I came across this site and thought maybe someone out there might have what I have.

I’ve also found out that my auntie and her daughter have hypoglycaemia.
My mum and me have similar symptoms and she went through life not really knowing she had a problem, however she can see my symptoms are worse because on occasion after eating something sweet I have passed out, which now makes me nervous going out by myself.

Sorry when on, just want to put out as much information that I can. Will take what you said and maybe get some allergy tests, (after this pandemic) thank you!!!
 
Sounds like allergies. Have you been to an allergist and had intolerance tests done? That there is family history of hypoglycemia also suggests that there could be a metabolic problem too. Retraining the body to use fat for energy may help. Have you considered a ketogenic way of eating?
 

Hello @Lunaray , and welcome

As you probably know, we have no possibilities to try to give you any form of diagnose, so all I can give, are some suggestions...

Have you checked with your Doctor, if this could be RH, or Reactive Hypoglycemia, in combination with some other problem?
I'll call @Brunneria , and @Lamont D , who are very knowledgeable people, so we can hear (well, read), what they think...

Edited to add: was thinking, if RH has been a problem for a longer time already, the Reactive Hypoglycemia could in itself give some problems, such as joint problems, as you mentioned already - and that probably because of shifting blood sugar values then, as I see it...

Mike
 
Last edited:
There are a lot of issues here and I concur with others that this does sound probably intolerance or allergies, a combination of both, or a metabolism condition.
It could be also RH, but your doctor needs to do the elimination tests.
The majority of your symptoms are typical RH, but your symptoms are different from mine.
It is interesting that your relatives have had hypoglycaemia.
Have you ever had hypoglycaemia episodes? Do you have a glucometer?
Have you had a blood panel result, including Hba1c levels?
Please read the RH forum, it will definitely give you some idea of what is happening to you!
What tests have you had?
The reason your 'diabetic' doctor doesn't understand Hypoglycaemia, is because they are not trained to recognise symptoms of hypoglycaemia!
I was misdiagnosed with T2 over a decade ago and it took a specialist endocrinologist to recognise the symptoms, then do the necessary tests for a true diagnosis, if your doctor doesn't understand the symptoms get a referral, with a specialist in Hypoglycaemia.
It does seem that it is food related.
It will come as a shock that even complex carbs may not be the ideal dietary solution and looking at another dietary lifestyle change. Complex carbs are mostly wheat, oats, , with RH, grains are usually not recommended. But my worst is starchy vegetables such as potatoes!
What works for me is a ketogenic diet. This eliminates most carbs.
I know what you have gone through, it was only eight years ago that I first saw my endocrinologist, but I was first misdiagnosed with prediabetes in 2001, then T2 in 2009. It was a battle and is still misunderstood by most doctors.

Keep asking, have a good look at the RH forum, even if it isn't RH or something similar, you will recognise what others are going through.

Keep safe
 
I’ve had a mixed meal test however my doctor said that this didn’t indicate hyperglycaemia.
Although when speaking with the specialist who conducted the test, I asked her that if I had either brought my own food/ the mixed meal test was just carbs and sugar that that’s the point when I have a severe episode and literally pass out. (She is happy to do the test again and I have to wait for this to be rescheduled.)

Reactive hypoglycaemia and lethargy
Glucose 4.7 mmol/L
Sodium 142 mmol/L
Potassium 3.9 mmol/L
Urea 3.4 mmol/L
Creatinine 57 umol/L
Acute kidney injury alert 0
Estimate GFR >90 mL/min/1.73m2 Auth
HbA1c 5.4% Auth
HbA1c 36 mmol/mol Auth

HCT 0.389 l/L
MCV 88 fL
MCH 30.2 of
MCHC 342g/l
RDW 12.1%
Platelets 227 10^9/L
Neutrophils 4.7 10^9/L
Lymphocytes 2.3 10^9L
Monocytes 0.4 10^9/L
Eosinophils 0.1
Basophils 0.0
Nucleated RBC 0

HbA1c (IFCC Aligned) 36 mmol/L
Total protein 69g/L
Albumin 43 g/L
Total bilirubin L7 umol/L
Alkaline phosphatase. 73iu/L
ALT 14 is/L
Cholesterol 3.5 mmol/L
Triglycerides 0.5 mmol/L
HDL cholesterol 1.43 mmol/L
LDL cholesterol 1.8 mmol/L
Non- HDL cholesterol 2.07 mmol/L
Cholesterol:HDL ratio 2.45 ratio
WBC 7.6 10^9/L
RBC 4.4010^12/L
Hb 133g/l
HCT 0.389l/L

Glucose 3.9 mmol/L
Insulin 11 pmol/L
C peptide 287 pmol/L

Insulin 11 pmol/L
C peptide 339 pmol/L

Insulin 11 pmol/L
C peptide 442 pmol/L

Insulin <10 pmol/L
C peptide 311 pmol/L

Insulin 16 pmol/L
C peptide 305 pmol/L

Loads more tests like these : however I’m usually on a varying diets at this point. I usually didn’t eat when I went out so that I can actually go out otherwise Id feel tired and wouldn’t be able to see my doctor - I was still figuring things out and if I had an appointment or knew I had to go somewhere I’d eat accordingly but would be very hungry.
I used to starve myself at university and school/work, eat an apple in the morning and when I got back home be able to eat something “normal” because I could crash at home. I didn’t really have a clue what was going on. The symptoms now are so much worse.


When I’m at home and have taken a blood prick test bad episodes;
Sugar levels go down to 4.2
Blood pressure drops 90/42 5-10 minutes after an episode

I do not have celiac, I’ve had this test done.
I’ve gone to an endocrinologist she also couldn’t understand but it was abroad and was more focused on me not being a vegan and eating carbs - (I’ve had the worst luck with doctors and them understanding my situation which has also made me reluctant and why I’m glad I stumbled onto this community.) Thank you all for understanding and being helpful, from the bottom of my heart!!!
 
Lunaray said:
When I’m at home and have taken a blood prick test bad episodes;
Sugar levels go down to 4.2
Blood pressure drops 90/42 5-10 minutes after an episode
Click to expand...

Something is obviously going on but 4.2 is not a hypo (non-diabetics can easily sit at that level or a bit lower). I'd concentrate more on the blood pressure drop to be honest and ask the docs to look into that - cos that does not look healthy.
 
I agree with the others that it looks like a food reaction to me.
If you keep a v detailed food food diary, you may spot a pattern, or group of foods triggering this.
 
The only thing I noticed before diagnosis and I was having most of the symptoms as you, was that lethargy is a symptom of blood glucose levels fluctuating, uncontrolled.
Most symptoms are worse, when your blood glucose levels are not in normal levels.
I found that once my levels stabilised in normal levels for longer periods the symptoms diminished. And because I stopped triggering the insulin, the hypos stopped!

Hope that helps.

Keep safe
 
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