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Reactive hypoglycemia - flat curve response

misdiagnosed

Member
Messages
15
Location
Preston Lancashire
Type of diabetes
Prediabetes
Treatment type
Diet only
Ok - I was diagnosed as borderline diabetic in 1986, and was put on a diet. In 2010 I read books from the library about reactive hypoglycemia and switched to that diet instead, and got much better results.
But I suspected that my husband has reactive hypoglycemia and we did a home GTT test on him, as our GP in the UK refused to give him that test.
The results we got from that showed that he has flat curve response reactive hypoglycemia. He has nearly all the symptoms shown in "the low blood sugar handbook" by ED and Patricia Krimmel. That book is very informative and I fully recommend it.
His fasting was 5.9 then throughout the full 6 hours he remained lower than his fasting and finished at 4.1 Also he had dropped lower than his fasting within 1 hour.
The problem we are having is convincing the GP's in the UK that he has this condition, as they say he has to drop much lower than than to have reactive hypoglycemia. All the specialists in America and Austrialia have much better information than UK, as they recognise that this is flat curve respose reactive hypoglycermia and they say it is not how low but how soon it drops and how long it is below the fasting level that counts for more, added to this the patients symptoms. Obviously we would prefer a more accurate intravenous test, and the GP's are simply refusing to test my husband with the proper 6 hour GTT test that we beleive is required to diagnose this problem.
GP's in UK seem to have no undrstanding of this condition either. Cus I have read in many reactive hypoglycemia books that symptoms can take 4 months to improve even on the correct diet. And our GP's say that he would have been better after just one meal!
My husband is suffering from terrible mental health problems, and medication didn't last for him and made him worse. I read in these books that medication will not last for someone with reactive hypoglycemia if they don't change their diet.
We have 4 children and we want them to also be tested - to reduce future serious problems. But we are simply getting no help from the GP's in the UK for this. Does anyone have any advise for us in England please. I already have all the good advice from the charity group in America www.hypoglycemia.org - but we need proffesional support from Enland UK please.
They keep using all the wrong tests. I don't beleive the HB1AC would find reactive hypoglycemia either, cus you are not given sugar to see the reaction that gives. Can anyone help us with this?
 
I had a normal GTT but only just (2 hours) but I monitored my own blood sugars for four hours afterwards and I went from 5.9 to 17.7 and down to 3.1 at which point I had hypo symptoms. I have been gluten free and low carb for four weeks and my blood sugars are much more stable. Unfortunately I have other things going on so can't say I feel great but I do believe I am improving my long term health and I am losing weight.

Brun and nosher are the most knowledgable pair on RH and I'm sure will help.
 
RH has its own forum now so can I suggest you cut and paste it to there. It's under diabetes discussion
 

What treatment do you want your husband to have (if diagnosed), as I understand much of the RH management pitons around eating and eating patterns which you are surely at liberty to adopt, if you feel it is in his best interests?

I am no expert or an RH sufferer, so if I am way off mark, please educate me.
 
No I had a two hour GTT at my surgery and monitored the blood myself afterwards. I dropped to 3.1 despite having eaten a high protein and fat meal so it would have gone lower without. I reported it to my GP and asked to be referred to an endo I knew was interested in RH and my GP was happy to do so. Whereabouts are you based in the country? Perhaps you should consider changing GPS?
 

Hi again, I've had a prolonged oral glucose tolerance test quite a few times.
I have always gone hypo!
I eat very low carb.

Please read the RH forum and ask questions.

Can third thread be put in the RH forum please @Administrator.
 
You are correct. He needs the correct diet. But to make him more determined to stick to his diet - it would be better for him if he was diagnosed by proffesionals, and given all the support he needs.
 
We are based in Preston Lancashire, and I would lke to know of a good GP who understands RH better near us so that we could change to them. I did phone another surgery and they were offering the HB1AC too which I don't believe will find RH. I think that test must be less expensive. I wanted to even go private for him to have a 6 hour GTT, but we have been told he still needs a GP referral for that.
Many thanks for your kind replies.
 
You could email a private provider, such as here, and ask if they could quote for the test. Their fees include the necessary private GP referral, which is usual without any interface.:

http://privatebloodtests.co.uk/epag...co_uk/Categories/Types_of_Test/Diabetes_tests

If you just Google something like "private blood tests UK", you will find loads of providers. The above use Spire Hospitals for their testing, so it's a robust, trustworthy private hospital group, used by most UK medical insurance companies.

Alternatively, you could look up Private GP Services in your area (there are several where I live), who will usually see you very quickly, for a fixed initial fee. Spire also have associations with Private GPs. I know this because I am friendly with a local private GP who does all sorts of weird and wonderful, and sometimes sensitive stuff - often that patients don't want to approach their GP about.

You don't live near me, so my contacts wouldn't be appropriate.

I make these statements as a forum member, not a medical professional, and they do not constitute medical advice.
 
ok thanks for that advise. I already tried a private hospital for the 6 hour GTT test but they said we still needed GP referal, and sicnce our GP is refusing to refer my husband - i thought I had hit another brick wall. Didn't realise that we can look for a private GP too. So thanks for that info.
 

This is one of the clues about RH, Being a non diabetic blood glucose condition, I have a normal hba1c level. And so if the symptoms dictate that you have high blood glucose levels after two hours, this is where the confusion for most medical professionals comes about, they don't understand the relation between the two.
When in hypo hell, your hba1c will be in diabetic range because you will have so much glucose and insulin and other hormones rattling around that you will yo yo between hyper and hypo!
How can you hypo when your eating regularly and not on reducing meds or eating 'healthy?'

So in the end as if repeating myself, no hyper, no hypo!
When in complete control of your blood glucose levels, and your bloods are in normal levels consistently, then the symptoms gradually dissipate and you feel better.
 
Possibly @Southport GP will know?
 
My hba1c is always normal - and why wouldn't it be when i am on a good diet. It is only when given sugar that we will truely see what that does to the pancreas and how it reacts to that. So GP's seem to need better education about this. But it is not their fault if they haven't been trained properly. I have wrote to Health Education England to complain that funds are not used to research this problem enough. A lot is understood about diabetes - but this is diffiernt in many ways and needs different treatment and different test methods too. GP's are just looking for diabetes NOT REACTIVE HYPOGLYCEMIA. My poor husband is still suffering from confusion - so it is hard for me to explain to him what i have seen in the books. This is why I feel we really need professional support with this. Cus unfortunatly he denys what i am saying and he just wants to prove me wrong. I think he craves the sugar too - so he will argue for that reason too. But if he was told by professionals it would make it easier to help him.

pg 66 in the low blood sugar handbook tells us how to determine if we have low blood sugar. It tells you how to read your own results.. And that is where I have read just how bad my husband has this.

Thankks for your kind replies.
 

Everything you say about your husband is symptomatic of RH!

I would throw away the books and test and experiment on how to help your husband naturally, by finding out yourself what makes him feel awful and what doesn't, I take you have a blood glucose monitor. Then I always say, keep a food diary and record everything you eat and your blood glucose levels in it. At first before and every half hour after to see what happens.
Then show that to your doctor and tell him/her that you want a referral to a specialist endocrinologist in blood glucose disorders.

Craving sugar or carbs is your body's response to keep giving it more glucose in whatever form. The more you have, the more you want! And the viscous circle continues and the symptoms get worse and worse.
Stop feeding the symptoms and craving and you stop the circle.
Eat between six and nine very small, very low, low carb meals a day.

As I've said, I am in permanent ketosis. The other thing I do is called intermittent fasting.
If I fast, I give my body a rest and go into into ketosis.
My blood glucose levels never go above normal range through fasting.
I've had the 72 (80) fasting test, and this was my first time in ketosis, this was so good for me and gave me my definitive diagnosis. The feeling of wellbeing after the test was brilliant.

You are totally correct, most GPs don't understand diabetes, never mind blood glucose disorders. In most forms, even hypothyroidism or hashimotos, my daughter has this!

She is going through the mill with it and low carb eating is helping so much!

If you want to, you can read my battle, I have wrote a blog about it called 'a reactionary'
It is the blogs forum and the link is below in my signature box below.
 
I have to say that i think you may be chasing an impossible dream.

It isn't that docs are badly trained. They are very well trained to look for specific markers, diagnose (or refer), and treat. If those markers are not present, they look for other issues, and progress accordingly.

RH is not on their radar. It is largely invisible to tests, and its symptoms mimic many other illnesses. They should not be blamed for this.

I think @AndBreathe 's suggestion to go privately may help you, but you will never be able to force a diagnosis no matter how much you spend. And even with a private diagnosis you cannot force your general practitioner to do what you want, afterwards.

There is a frequently quoted phrase on this forum that 80% of type 2 diabetes management is down to diet.

With RH i would take that further and say that 95% of RH management is down to diet.

I fully support the idea that RH is quite widespread and the general public would benefit from docs knowing it exists, but the reality is that even WITH a diagnosis your doc will tell you to stuff carbs every 2-3 hours and shrug because there are few if any treatments he can offer.

In contrast, switching to a ketogenic diet can be done today, the benefits will kick in rapidly. No prescriptions required. I have never had an RH diagnosis and never will. I handle it myself. I take total responsibility for the fact that what i put in my mouth affects my health, for good, or bad, and act accordingly.

People always get to choose what they are going to do. In my case, endless RH was torture and i hated feeling that way. A ketogenic diet is effort. It took reading, change, planning and commitment - but it isn't difficult, and it gave me my life back. I have more energy and stamina than 20 years ago. My mind works - no brain fog. I sleep better. I have no indigestion.

You and your husband get to choose what you each want to do, but even with a diagnosis, you will still have to go the diet route. It would be much simpler (and easier) to cut the middleman and sort your diets out now rather than waiting for a diagnosis which may never come.

If your husband chooses not to do this, then it is his choice, and nothing, and no one can make him do something he doesn't want to do.
 
I have to agree with @Brunneria, regardless of diagnosis, this condition is treated by diet! nowt else!
There is no cure, no magic pill or remedy, it is in your hands in how you go about stopping the symptoms and diet is the only way, that even my endocrinologist knows!
Being in ketosis is what we recommend because me and Brunneria have been through this and the symptoms and complications and the only thing that works is very low carb lifestyle.
It really does work!

Now I'm going to have a piece of chicken, nowt else for my afternoon Small meal, total 15gms so far today (approx!) Feeling really good!
 
Yes i get the gist of what you are saying about the diet. And we are both doing the diet now, but if we had been diagnosed sooner a lot of suffering would have been saved. We would have made changes sooner. But one needs to be made aware of the problem in the first place. I have read that RH is genetic, and my son has self harmed 5 times now, and if I had been aware of RH sooner then i beleive that would have been avoided. If people are displaying mental health problems then this should be a clue to do the 6 hour GTT tests. This is a more accurate way of checking someone for RH. We as a family can now do the diet cus we have been made aware of the problems it can cause and what is causing it. I feel sorry for people now who just have no idea at all. Until 2010 when i first read those books from America I had never heard of sugar problems causeing mental health problems. So i was too oblivious of diet being the cause. This is why I think it should be looked for by the GP. I was discovered i think by chance, but what about all the others who are totally unaware of RH. I have already wrote to parliament to complain and to Health Education England. I told government that if people were checked more for this - then it would save a lot of government money. Cus there are a lot of people suffering from mental health now. Parliament thanked me for my initiative and they also told me to go back to the GP and told me to complain to Health Education England. So I did. I also supplied a lot of links and book titles about the subject. I don't blame my husband for being misdiagnosed. I feel very sorry for him. He has been suffering for too many years.
 
You are saying the same things and have reminded me of when I got my diagnosis.
It is frustrating and you do get angry and it is similar to bereavement, you go through stages of feelings, you want to know why, when you can't get an answer or you don't get understanding that there is more going on than these people who should know, haven't got a clue! There is a huge gap in GPs understanding of blood glucose disorders.
Most of them don't understand the correlation of carbs and rising blood glucose levels.
We have been lead to believe that low fat is healthy, when it clearly isn't!
We have been told to cook with polyunsaturated fats, when we should be using natural fats!
There is a lot of self interest in government and big business has an important say in how or what we are told to eat.
Trying to get past all that, is not a one man mission and that's why this website exists, it is fighting against the tide of misinformation and understanding in the medical industry.
The posts are answered by actual diabetics, who have the condition and recommend the low carb lifestyle. Because we know it works. And more importantly, we know it is the only way to control blood glucose disorders.

It is frustrating, but we are slowly getting somewhere!
 
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