newbie with hypoglycaemia

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Hi and welcome from me too.

I see you have "Other Type" as your diabetes "label" Would you like to tell us a bit more about that? Many of us share out HbA1c readings so that we can see where on the diabetes scale we are and can celebrate with and congratulate each other when we manage to reduce it or suggest ways to be more successful it if people are struggling to do that.
Good luck with your diabetes journey and I hope gain as much benefit from this forum as I have.
 
Hello...I'm new here...Just need to talk with people who understand...I feel I have no one...
14 years ago while in hospital i was diagnosed with Reactive Hypoglycemia plus a congenital heart defect I didn't know I had. I have managed this quite well over the years but the last few months I have been having hypos of 1.9 2.2 2.9 3.3 making me very sick and passing out. I went into my GP surgery suffering a hypo but could not get seen or able to make an appointment. but as i left the building a GP rang me. I explained I couldn't speak or think...clearly eager to get off the phone she just said drink lucozade or 10 grams of glucose. I said I had a 20 min walk home she just said sip lucozade.....which i did but it still had dropped by the time I got home ....she did say she would arrange a Hb1c on me....well weeks later I called....receptionist said hb1c normal...no action needed...I am close to tears now as I am having these in the night too (I have a alarm) and at least three or four a day...I feel no one cares and that i have to live on lucozade and glucose tablets daily for ever. My family are worried my mum is diabetic my sister and my brother. ....The NHS says this is a medical emergency in a diabetic....my pharmacist said at less than 2 I must call an ambulance or go to emergency...but my GP surgery dont seem to care....I just don't know what to do anymore....sorry if I am rambling...
 
Oh goodness! Don't be sorry about rambling. That sounds dreadful. I am so sorry to hear the problems you are having! I find the hypos I have scary but at least they are not nearly that low or frequent and respond very well to treatment. Are you under a consultant? Your situation is obviously deteriorating and needs some further investigation. Do you eat regularly, like 5-6 small meals a day and top up on a night before bed to try to prevent them. If you are unable to get an appointment with a doctor or consultant then I think a trip into A&E might be the best way to get some help but choose your moment if you can so that it is not a Friday or Sat night when it is very busy.
You are entitled to know the actual result of your HbA1c, so that might be a starting point.... ring the surgery and ask for it. Are you on a Constant Glucose Monitoring System and is that self funded or NHS, If the latter, then I would expect that you are under a consultant and have some referral system back to them for reviews. Do you also get high readings or are they always either normal or low?
Hopefully the experienced members here will have more constructive input to help you, but the more info you can supply us with the easier it is to make suggestions.
 
thankyou rebrascora....Yes I do all the food tips that are suggested....I haven't seen a consultant since 2003 when I was diagnosed. My family say a CGM would be great and Dexcom said it would be perfect for me but I explained to them that I can't get anyone at my surgery to show any interest.... 2 hrs after meals its around 10... and before meals I hypo...even after snacks...
I just called my surgery they said my HbA1c was normal at 5.6
 
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Your situation has clearly changed and you need to go back to see the consultant. Ring the hospital and ask to be put through to his or her department or speak to someone in the diabetes unit there and ask for an appointment. Explain that you are having such low hypos and the extreme frequency of them and that you are frightened. The fact that you have been managing this for so long on your own and are now seeking help should indicate to them that something is amiss. If they say that you need to go through your GP then make a telephone or these days you can do an online appointment and make them aware of the seriousness of the situation and that you need to be referred back to the specialist unit for more support after managing it for so many years on your own. I find the online doctor's service very good as I can sit at home and take my time to figure out exactly what I need to tell them without getting flummoxed like I would on the telephone or at a face to face appointment.
You mentioned that you get alerts when you hypo??.... I assumed you meant via some sort of CGM system. I am sure that you would greatly benefit from one of those but the only way to do so on the NHS (not sure if a Dexcom can be authorised on the NHS but people certainly get Abbott Freestyle Libre which I know is not quite the same as CGM but would be a step in the right direction) would be via the hospital and a consultant, so the first step will be to get an appointment.
 
I should say that I am still very new and inexperienced with Diabetes so take other people's advice over mine but hopefully staff or admin here at Diabetes UK will see this and step in with advice.
 
thankyou so much rebrascora for your help....the only alarm I have is one that detects hypos at night...but it doesn't work when you are awake....I think it works on a drop in temp as it alerts me at about level 5....enough to sort it before full on low....I'm not sure how accurate it is...but at the moment it's all I have. I wish I could return the help to others on here but unfortunately I'm not there yet.
 
Your focus needs to be on getting help and support for yourself from your healthcare professionals. Sometimes you have to be firm and demand that support although it shouldn't be like that. You have a life threatening condition and you are not being unreasonable in seeking help especially when there is an indication that it is deteriorating under your current treatment plan. Explain to your GP surgery that you will need to attend A&E if you don't get help with this soon.
 
Sorry to read what a frightening time you're having. When you pass out how are you coming back round? Are paramedics coming out to you and if so what have they said about following it up with your GP/hospital?

Did the Consultant you saw in 2005 diagnose RH and discharge you with no follow up at all? Obviously something is happening and you need medical input to get to a more stable place. It's possible to have a normal HbA1c result with highs and lows cancelling each other out -your readings of eg 10 and 2 give an average of 6- the HbA1c test is measuring average glucose over approx 3 months so if you are having peaks and troughs then these can be disguised in an HbA1c result.

Make an appointment with a GP asap, take your meter along with your glucose readings and ask for referral to an appropriate clinic for medical input.
 
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Hi Sillipepper, welcome to the forum. I’m so sorry to read about your troubles. What has happened to you is bordering on unacceptable. May I suggest calling the Diabetes UK helpline? They will be able to give you some advice. The details can be found at https://www.diabetes.org.uk/how_we_help/helpline
 
Hello! Im sorry it sounds as though you had a rotten day.

Rreactive hypos happen to most diabetics sometimes and to me a lot. Treat immediately with something sugary and then some longer lasting carb e.g. a couple of digestive biscuits. Sit down until you don't feel shakey anymore. These days I carry wine gums and biscuits everywhere in my handbag.
The occasional hypo is really are part of life as a diabetic and I am mostly ready to go again 15 minutes later.
HOWEVER I have also had permanent brain damage as a result of a bad hypo so its important not to get used to them or treat them lightly! In my opinion the GP didn't help you enough today.


For whatever reason you did not feel confident handling that hypo yourself and asked the GP for help. I am sorry they were so unhelpful. They needed to.give you emergency treatment and ideally help you to get more education about dealing with hypos. They could have told you not to walk anywhere, but eat high glucose sweets next time and call an ambulance if Bgs aren t coming back up again.....

They should also have discussed putting your background insulin down (lower) at night. Night time hypos are potentially dangerous as I have found out to my cost

What sort of insulin do you use and can you take less at Night to keep to safe Until you get it sorted?

Please make a nuisance of yourself - tell them you felt very uncomfortable after your experience and would appreciate better guidance to cope with hypos, and spell out what is happening at night - perhaps they don't realise. A referral to a diabetic team might help as GPs sometimes don't appreciate how horrid it is.
 
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Hi Sillipepper, Welcome.
Reactive hypoglyceamia is a condition in which the body begins to make insulin after you have eaten a meal containing carbs to lower the blood glucose and then forgets to stop making the insulin. This results in the hypos that you are getting (I expect that you knew this).

I suspect that you are not on any medication and certainly not any designed to lower the blood sugar, but I could be wrong.

The HbA1c test is, I think, of no use or relevance what-so-ever.

The treatment is to eat low carb meals - little and often so as not to trigger the production of excess insulin.

Your pharmacist is right: very low BG - off to A&E without delay, by ambulance if there is no one to drive you there.

Ypu certainly need specialist help soon from an endocrinologist, not necessarily from a diabetic clinic.
 
Hello @Sullipepper - sorry to hear how bad your hypos are. My partner has reactive hypoglycaemia, and he was never given any medical help either, but he is managing the condition himself very well now and hardly ever hypos any more. I don't think even at its worst he ever passed out with a hypo though - he just tended to sit down suddenly on the floor and shake a lot (and carry dried fruit everywhere he went - he found that was the best hypo treatment for him, though you might need glucose with readings as low as yours).

The things he does to manage his hypoglycaemia are:
1) eat little and often - split all your meals in half so you eat a small amount every couple of hours
2) don't eat empty carbs (ie if you're going to eat carbs, make it something useful like an apple, not a sugary cake)
3) only eat carbs with other things, eg bread is only OK if eaten with something like cheese or fish
4) eat something fatty last thing at night to prevent night-time hypos (a yogurt is ideal)
5) eat plenty of fibre - eg a teaspoonful of inulin a day
6) exercise
7) never give in to the temptation to over-treat a hypo, that just leads to a cycle of more highs and lows.

There's a good article about rh on Wikipedia here, which recommends much the same things.

I hope you are able to get some help and get on top of this - it's a manageable condition, but you shouldn't be left to manage it without any help when your hypos are as low as yours are.
 
Ah! Im sorry - i completely misunderstood your post, even though I read an article about reactive hypoglycaemia before i answered, the definition i got seemed to talk about it as a posh name for a normal hypo as a result of insulin.

That sounds like a crazily difficult thing to have happen and im now waiting avidly to see how you get on - please keep us updated, wont you? Id like to learn

Could carrying sweets everywhere like a T1 D be helpful? In event of a diabetic hypo, 4 sweets followed by longer acting energy e.g. banana helps me
 
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thankyou everyone for your help and support....I will keep trying to get an appointment and for someone to actually listen....and will come back and share...my mum my brother sister and cousins are diabetic and cannot believe the advice and care I have received from the GP. just told on the phone to drink lucozade and 10 grams of glucose....and would not allow me to make an appointment...
I was diagnosed in 2003 by a GTT 6 hour test...after initially being told i was suffering panic attacks by my GP......during the test I couldn't speak and passed out causing them to abort the test and treat me....it was 1.9....the same day they discovered i had a problem with my heart and after scans etc it was found i have a congenital abnormality of the aortic arch.....plus an enlarged aorta...again I never had any follow up for this and when I ask the Gp do I need to be checked out still,he tells me he will look into it....
Recently my mum told me my dad had died (I was only 10) of a rare genetic disorder (an autoimmune disorder) called Felty's Syndrome ....again I need someone to investigate this...but I will keep trying to get someone to listen....
 
Can you change to a different GP or a different surgery? If not, it might be worth writing to the practice manager telling them your concerns, that you have two serious conditions, both diagnosed at the hospital (ie making it clear they were diagnosed by someone who knew what they were talking about), and that you aren't receiving any help from the surgery with either of them, and asking if you can be referred to the relevant hospital consultants for help with them. GPs by their very nature are generalists and tend to have limited knowledge of anything very specialist so it may be that the GP doesn't understand the severity of your hypos (and of course the trouble with a severe hypo is that you can't explain coherently when you're in the middle of having one), and they almost certainly won't know anything about your heart disorder.
 
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