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Undiagnosed but high blood sugar

Crying! The endocrinologist said I don't fit the criteria for his ward so he won't help me. He also said my blood glucose results are "not exciting" and that 2.6 is "normal". what the ****?!

The surgeon has no idea about what's wrong. He doesn't know what specialist would help and he hasn't ordered any tests.

The psychiatrist said that I have an eating disorder because I chose to cut out carbohydrates.

Nobody is going to help me, they're offering me mental health support in the community but that is pretty pointless.

I am going to be discharged tomorrow and expected to go home, even though I can't walk without collapsing for most of the day. They said I'm probably collapsing because of my low body weight. I don't understand how I am supposed to look after myself and gain weight.
 
Oh no. Poor you. Can you do a moderate low carb, like 100 g of carbs a day, slow carbs?
 
Oh dear.
@nosher8355 sounds like Ballofwool needs some advice on eating 7-8 times a day, and drip feeding carbs.

I am soo sorry love, but this is waaayyy outside my experience.

If the endocrinologist is washing his hands, all I can suggest is that you demand a referral to someone else.
And if that takes ringing around to other hospitals and teaching hospitals to speak to people, then go for it!

I would also be writing a letter of complaint about a so-called endocrinologist who claims that a blood glucose of 2.6 is 'normal'.
 
OMG!!!!!

How can anybody never mind an endocrinologist dismiss a level of two??????

I'm gobsmacked!

Ok, what I would do now, and you might not want to, even if you have an eating disorder, which I'm not dismissing as possible, but to keep your levels as close to normal as possible so that you feel better is to advise you to eat as @Brunneria suggests, is you eat constantly throughout the day. Obviously this needs some planning and you will need to eat very little and often, about every hour or so.
This can be moderate to low carb and high in calories and protein and will include eating full fat for example as soon as you wake
Full fat yoghurt with a handful of berries. With coffee or tea, full fat milk or cream.
Small piece of fruit with tea or coffee. 1 hour
A cut of meat with some veg. Whatever your choice.2 hours
2 or 3 egg omelette with anything veg. 3 hours
Small piece of fruit 4 hours
Homemade soup, slice of Bergen, with butter on. 5 hours.
A green smoothie, from brunnerias recipes. 6 hours
Bacon, egg, sausage, fried!! 7 hours
Piece of fruit. 8 hours
Yoghurt berries, chocolate! A treat at night.
Drink enough water to stop you dehydration and put enough salt in to help you.
Drink tea and coffee with full fat milk or cream throughout the day.
Of course you can transform this to your own tastes.
Homemade curry for example, you make it in bulk and freeze it in small containers for portion size. If you roast a joint of meat, this can last for a few days in the fridge, same with veg.
There is such a large choice that will satisfy you and you will eat enough not to lose weight.
By eating every hour (ish) your bloods will remain in the normal range. It is similar to topping up your tank or battery so you don't run out of power!

Hope this helps!
Keep well!
 
I would look for another endocrinologist, who knows about blood glucose disorders.
Nobody should be allowed to let someone have a hypo and dismiss even if it is a eating disorder.
Return to your GP and ask him to refer you to another endocrinologist.
Someone who will not dismiss low bloods as normal and has experienced Hypoglycaemia.
Don't do nothing. You will have to eat and get better!
 
Hugs. Don't panic, he's not the only endocrinologist in your area. Legally the NHS must provide you with an endocrinologist who will diagnose and treat your condition. Everyone knows 2.6 is not normal. I would ask your GP to refer you to someone else, and when you are strong enough, you have good grounds for making a formal complaint.

If your GP won't help, it might be quicker to see a private endocrinologist, if you can afford it. You shouldn't have to but this is a tough situation and you may not have the energy to fight the system at the moment. It's more important to find an endo who will help. Maybe a private endo can see you once and write a stern letter to your GP about why they should insist on an NHS endo who is competent.

The psychiatrist is wrong. They will be thinking of the condition orthorexia, which is an obsession with the type of food eaten, such as avoiding an entire food group. All of us low-carbers are at risk of being labelled with this if a mental health professional thinks we are going to extremes with it. I think your decision to limit carbs is entirely rational and sane, because they give you hypos. You are just trying to treat your condition, while you haven't yet seen an endo who is competent enough to diagnose it. Once you have a diagnosis, psychiatrists will have to respect that and leave you alone.
 
Hello everyone!

I've been recovering from my recent hospital stay. Finally, after about 6 weeks, I'm starting to feel like I have a clear head again. I have gone on a mission to eat food every single hour, and I have gained all my weight back to reach a BMI of 18. By eating every hour, I can tolerate eating a high carb diet, because I eat so often that I avoid the hypo that happens after about 1-2 hours. Obviously this isn't practical as a long term solution... I can't eat every hour if/when I start working again (unless I have a very understanding boss)!

I've become a bit suspicious. For some reason, two separate endocrinologists have told me that my 2.6 mmol/L on multiple occasions (within an hour or two of eating) is a "normal" reading, so they've really down-played it, to the point of making me feel like I'm going mad. I've not come across anyone posting on this forum who is going down to 2.6 on a regular basis, and if that were happening then I would think they would visit their doctor!

These endocrinologists say that unless you go below 2.2 then you're not "truly" hypoglycaemic. Around 2.2 (e.g. on my 72 hour fast), I was basically unconscious, and I later realised my memory of events had been completely erased by the hypo. Why do they wait until someone is unconscious to consider the blood sugar a problem?!

when I've spoken to other doctors who have access to my endocrine notes, they've all said "you're getting hypoglycaemia", so it is only the endocrinologists that seem to be denying it.

I am seeing an endocrinologist again in about a week. I am going to demand to know what my diagnosis is. They are not doing any further tests on my blood sugar, so why don't they give me a diagnosis...? I don't think they "believe in" reactive hypoglycaemia. In a previous appointment the endocrine doctor specifically told me it was not RH, but when I asked why, there was no answer...

I've been testing my blood sugar at home. It normally goes up to 8, 9 or 10 after a meal. Im a bit worried I'm just giving myself diabetes!
 
It sounds really difficult, I hope this endocrinologist will pay attention and be able to help you.
 
Rillum said:
It sounds really difficult, I hope this endocrinologist will pay attention and be able to help you.
Click to expand...

Thank you, Rillium!

Fingers crossed for some success in getting some sort of diagnosis or treatment next week. Will update if I get any luck!
 
Good to hear how you are getting on - and congrats on getting the weight back.

I would wait til after this round of appointments and then do as @nosher8355 suggested - insist on a referral to another endocrinologist. Doesn't sound like they are working in your best interests!
 
I do believe that your quick hypos are symptomatic of hypoglycaemia in what ever form.
Keep annoying them and your GP, you are getting a rough ride.
Glad you have found a way to keep temporary control by eating hourly, if that what it takes, then do it, it must be brain crunching and a real pain but hang on in there.
I've said before that you are as weird as us RH ers!
Your doctor's haven't a clue! If 2.2 isn't a hypo, what is?
Glad you are putting weight back on and are clear minded, now is the time to demand better specialist in blood glucose disorders.

If you did mention your fasting or waking bloods, I missed them, can you tell us, especially if they are in normal range.

Best wishes, keep at them!
 


Thank you Nosher, I will definitely take the advice of you and Brunneria and ask for a new specialist! But I will give the endocrinologist one more chance in this appointment next week, just in case he has finally managed to come to a diagnosis or treatment.

I didn't try any fasting blood tests except the normal overnight fast, I was worried I might burn off all my food again if I stopped eating so regularly. My waking blood sugars ranged from 4.2 - 5.5 on a few different days. I think those figures are ok.

My mum actually did a 72 hour fast on herself at home because she wanted to see what would happen to someone who isn't me. She only went below 4 on day three, eventually reaching a low of 3.1, but then going back up to 4.0 spontaneously.

I went below 4 within the first 24 hours, reached 1.8 on finger prick tests at around 50 hours and didn't come back up spontaneously. Interesting I thought.
 

That fasting is normal blood glucose levels, like me!
If that is your hba1c normal level as well. That's means we are not diabetic.
My 72 hour fast, I never dropped below 4.1 at all!
You did, and you went hypoglycaemic.
You have something that is unusual and a similar one is dumping syndrome but I believe you are more than that.
I would ask for tests for insulinoma or other pancreatic disease, but that means less insulin not an excess!
I'm lost for an answer, like your endocrinologist, Lol!! But I do know!!
You have a blood glucose disorder!

And that is what you should be treated for and not left to follow your own path. You needed help and the only place you got it was on here.
I find that shocking!

I sympathise and empathise, as I needed this forum to help me before I found my special endocrinologist!
I do hope you find yours!

Keep the good work going, give them hell!

Best wishes for next week!
 
Hello,

Hope you don't mind me posting again, this forum has really helped support me so far!

I am seriously disappointed. I went to see the endocrinologist, and he said I seemed to be fine. He wasn't willing to do any more tests on me and he will never give me a diagnosis. This is what he said.

I cried for hours. I don't think my doctor will ever refer me to a new endocrinologist, because this one will write a letter saying that nothing is wrong. How can he say this when his tests showed my blood sugar was 2.6?!

He blamed everything on my low weight, but that is ridiculous. I know many people who had a BMI equal to ( even or lower than) mine and none of them have had these problems. Also, my BMI is now at 18 which is the lowest end of the "normal" range. You would think that would prove his "underweight" theory wrong, but he simply ignored that... I think It's just a way to blame me for everything, rather than actually make a diagnosis or do anything to help!

He happened to find a vitamin D deficiency on my blood test results so he gave me a prescription for vitamin D pills. I could have just bought those at the chemist myself. I got the impression he was only writing the prescription to try to get rid of me with harmless, cheap vitamins!
 
Well, vitamin D is really, really important. I'm at home, being unable to work for the last 1.5 years because of vitamin D deficiency. It means your muscles can't work properly and some of the muscles slowly get smaller and smaller.
 
So, maybe that could actually help you. Muscles are really important for glucose metabolism. I hope to get lower insulin resistance, when I get more muscles again.
 
Rillum said:
Well, vitamin D is really, really important. I'm at home, being unable to work for the last 1.5 years because of vitamin D deficiency. It means your muscles can't work properly and some of the muscles slowly get smaller and smaller.
Click to expand...

Thank you for explaining this Rillium, that is interesting. I didn't realise vitamin D was so serious, it's amazing the knowledge that I can get from these forum members. It could help explain why I feel so weak.

He just told me to take all the vitamins at once, and keep doing this every month.

I was disappointed because it just seems they found an extra problem, it's hard to see how it could be linked to blood sugar.
 
Rillum said:
So, maybe that could actually help you. Muscles are really important for glucose metabolism. I hope to get lower insulin resistance, when I get more muscles again.
Click to expand...

You beat me to it! I guess it is linked to blood sugar after all!
 
There's been some research showing more of a risk of diabetes with vitamin d deficiency
 
With your low bmi, you probably don't have a very high muscle mass.
 
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