Unstable BG

[Becky'Bea'K]

Hi all,
I posted here a few months ago but can't find my original thread so thought I would just post again as I don't really know where to go from here. My blood sugar has been very unstable for months now. Originally I was just having occasional episodes of hypoglycemia but things are now getting worse. I had a diabetes test a couple of months ago which came back negative but showed that I had very low blood sugar average. The doctor seemed pleased but she did acknowledge that my symptoms do sound like diabetes and couldn't understand what was going on. She seemed so sure that the results would come back positive! She recognised that gluten seemed to play a key role in making me feel very unwell so advised that I go on a lower gluten diet to stop the BG rolarcoaster of ups and downs. I now eat gluten free alternatives whenever they are available to try and keep my BG more stable, but this has only had limited effect. I have ended up at the drop in centre twice last week, once at the weekend with severe exhaustion, frequent urination (20 times in 1 day) and vomiting. Whilst I was there I told the Dr about my BG readings, a few nights ago I was 7.7 on going to bed and 3.6 when I woke up. He said that 7.7 was a slightly abnormally high reading and he wouldn't normally expect it to be that high 1.5-2 hours after food, he checked my ketones which were fortunately negative for now. He also couldn't explain why it had dropped so much in the night, but told me something was definitely wrong and what is going on with my BG is definitely abnormal if not unexplained for now. A recent routine eye test has also led me to being referred to the hospital to see a specialist due to severe eye pain as I told the optician my symptoms and she didn't seem happy to leave it with everything else going on. Basically my symptoms are severe neausea, increasing episodes of hypoglycemia, increased urination (as I say I can find myself peeing up to 20 times a day), unquenchable thirst, waking up in the night and early morning to go pee, dry mouth, very poor circulation in hands and feet which is getting progressively worse, numb fingers/skin patches, dizziness, blurred vision, breathlessness, ravenous insatiable hunger which I just can't satisfy no matter how much I eat, rapid weight loss (I gave dropped 4 dress sizes since Christmas without even trying) and increasingly high spikes in blood sugar throughout the day which are getting progressively higher. I was in hospital a few months ago with a severe kidney infection which had spread to my blood. My hypoglycemia was discovered by nurses doing finger prick tests. They thought it would improve once the infection was gone and I could eat normally again but if anything it is now getting worse! I do have PCOS which has never been properly medicated or monitored, and I know this makes me prone to being insulin resistant. I have also heard that insulin resistance can be a precursor to diabetes, but that people can have normal blood sugar readings if the pancreas overcompensates by releasing too much insulin into the blood. Could this be what is causing my BG to drop after I eat? I have never had my blood insulin levels tested. Also I am now in the process of changing my GP as my current one is useless. I have been on antiemetics since I came out of hospital to help with the nausea and enable me to carry on eating and drinking, I am losing so much weight that I am having to buy a new wardrobe of clothes as the old ones are literally hanging off me now, and I am so hungry most of the time! It's a constant yo yo between hunger and nausea so either way I just can't win! Although I'd rather have the hunger than the nausea it's very concerning when I know that something is wrong and doctors can't diagnose me. I have had numerous tests on my kidneys including blood tests, urine tests and an ultrasound since my infection and have been told that there is nothing wrong there! I just hope a new GP will agree to another diabetes test as I am not entirely sure that I trust my old one. A few years ago I had blood tests for PCOS which I was told came back negative at the time. It was another 3 years before I went back and another DR pulled up the old results and said that actually they showed I did have PCOS and an ultrasound confirmed it, so as you can see they haven't exactly been reliable as far as test results are concerned. Also I have low vitamin B12, low calcium and severe folate anaemia (although I have heard folates get washed out in urine as they are water soluble so this is not necessarily entirely unexplained given how much I am peeing). I have been on suppliments for 3 months and my GP actually told me a few weeks ago that my levels were back to normal, but another Dr has now told me this is wrong and they are still incredibly low! So I really don't trust my old GP now! Sorry I know this is a long post but this has been happening like this since last year now and still no answers and worsening health. I am getting iller as my BG becomes more unstable and have lost my job over this as I can't work the hours I need to to fulfil my contract. My boss has been amazing through all of this but due to employment law he can't keep me on any longer. I am now unemployed for the first time in my life and my job is everything to me so any advice/suggestions would be gratelly appreciated! Thanks everyone!

 

[zx10pilot]

Wow.
I'm no doctor, but it seems pretty obvious that you need to get as far away from your original GP as possible! You have got many different symptoms but only a few appear similar to the classic Diabetes symptoms (the 4T's - tired, thirsty, toilet & thin) and these are due to high BG levels, not low.
I would really hope that a new GP will take a more active role and try and get to the bottom of your symptoms or at least refer you to a specialist who can help.
Good luck
zx

 

[Becky'Bea'K]

Wow.
I'm no doctor, but it seems pretty obvious that you need to get as far away from your original GP as possible! You have got many different symptoms but only a few appear similar to the classic Diabetes symptoms (the 4T's - tired, thirsty, toilet & thin) and these are due to high BG levels, not low.
I would really hope that a new GP will take a more active role and try and get to the bottom of your symptoms or at least refer you to a specialist who can help.
Good luck
zx

Hey, thanks for the reply!
Many of the other symptoms have only come on over the past few months after symptoms such as peeing a lot, drinking a lot, tired a lot and insatiable hunger started last year. I'm wondering if it's because I left it so long that I've now developed other complications? I had a diabetes test last June after a few very high blood spikes but the results never came back, the Dr didn't chase them up and never rang me back about them despite telling me at the time she was sure it sounded like diabetes. Last year I had a few fasting blood results in high 5's/6's and very high 7's still 5/6 hours after eating, no hypos though. A few months later I became very ill with hypoglycemia and my blood sugar has become increasingly more unstable and my blood spikes are getting higher. I wish I could afford a continuous glucose monitor so that I could check more frequently but they're just too expensive to justify at the moment. Fingers crossed a new GP will begin to take this seriously, as when I went to the drop in centre last week one of the Drs said that unfortunately cases such as mine often get diagnosed once the patient ends up in hospital. I want to try and prevent that from happening if I can!! He was very lovely though and spent a good 40 minutes listening to my symptoms, acknowledging that something is definitely very wrong. This was a real luxury for me as usually when I go in to see my GP I get possibly 5 minutes max of my alotted 10 minutes, they tell me they are confused, they tell me there is nothing wrong with me, and I get sent on my way. It is possible my poor vitamin/mineral levels were caused by my hypoglycemia because I became so ill and didn't know why at the time, that I couldn't eat and drink properly for about a month, and nothing at all for about 3 weeks before going into hospital. This was all due to the severe nausea. The Dr I saw at the drop in centre over the weekend said that the nausea could certainly have been caused by low blood sugar at the time, but no one bothered to check it and I only found out whilst in hospital for the infection! I feel really good about taking steps to change my GP now as I know it is the right thing to do. I have asked to be referred to an endo as I have also been told that my inflammatory levels were 55% higher than they should have been before going into hospital, and have now only gone down to 25% higher which is still very very high I have been told. I know this could be an indicator of autoimmune but they still say they can't refer me at the moment. They said they can't refer me for my PCOS either unless I am looking to become pregnant which I am not at the moment. Fingers crossed the new Dr starts to try and get to the bottom of this once and for all.

 

[trophywench]

Are you having B12 jabs, Becky? B12 deficiency over a period can cause quite a lot of what you've described above - but it's routinely undertreated by the NHS as a whole. Or so I've been told by a number of folk that have this, anyway.

 

[TheClockworkDodo]

It sounds to me as though there may be more than one thing going on, and that's confusing the issue, but your doctor really should be sending you for more tests and trying to get to the bottom of it asap. I should ask the new one to do more detailed tests for diabetes, not just the HbA1c (blood sugar levels) but also GAD antibodies (to see whether your immune system is attacking your pancreas) and C-peptide (to see how well your body is producing insulin). It could be that all the lows are caused by your pancreas being under attack and fighting back. Unusual, but not impossible, it happened to me - for a few months before I was diagnosed I had episopes of hypoglycaemia. Then I suddenly developed rapid weight loss, insatiable hunger, and blurred vision, and was rushed to hospital and diagnosed with type 1 diabetes.

The other thing I wonder is whether anyone has considered Diabetes Insipidus (as opposed to the usual type, Diabetes Mellitus)? - I don't know much about that, I'm afraid, but I do know that the symptoms include peeing a lot and being very thirsty. Might be worth asking your new doctor about it.

 

[Becky'Bea'K]

Are you having B12 jabs, Becky? B12 deficiency over a period can cause quite a lot of what you've described above - but it's routinely undertreated by the NHS as a whole. Or so I've been told by a number of folk that have this, anyway.

Hey, thanks for getting back to me. I'm not currently receiving vitamin B12 jabs, just on tablet supplements, but I have been unwell for longer than I have been deficient so the deficiency is as a result of the illness, not a cause of it, I think, as it has made me unable to eat, despite the ravenous hunger. Still very valuable info though as apparently my vitamin levels are still low despite three months on supplements, so something to be aware of! Thanks!

 

[Becky'Bea'K]

It sounds to me as though there may be more than one thing going on, and that's confusing the issue, but your doctor really should be sending you for more tests and trying to get to the bottom of it asap. I should ask the new one to do more detailed tests for diabetes, not just the HbA1c (blood sugar levels) but also GAD antibodies (to see whether your immune system is attacking your pancreas) and C-peptide (to see how well your body is producing insulin). It could be that all the lows are caused by your pancreas being under attack and fighting back. Unusual, but not impossible, it happened to me - for a few months before I was diagnosed I had episopes of hypoglycaemia. Then I suddenly developed rapid weight loss, insatiable hunger, and blurred vision, and was rushed to hospital and diagnosed with type 1 diabetes.

The other thing I wonder is whether anyone has considered Diabetes Insipidus (as opposed to the usual type, Diabetes Mellitus)? - I don't know much about that, I'm afraid, but I do know that the symptoms include peeing a lot and being very thirsty. Might be worth asking your new doctor about it.

Hey, thanks for getting back to me, and letting me know about the different types of tests. One of the doctors I spoke to at the drop in centre last week said that there were several ways to test for diabetes and that the tests the doctors had done were not necessarily the best way to test. He seemed to think that they should be running more tests to be absolutely sure that it wasn't diabetes. I have looked at diabetes incipidus which could explain the thirst and frequent urination but still wouldn't explain the nausea, insatiable hunger and all the weight I have lost in a short space of time. It also wouldn't explain all the hypo's. What I find bizarre is that my blood sugar will also shoot up very quickly and then plummet even after eating. Earlier on I was feeling hungry and had literally 2 mouthfuls of chicken (barely anything at all as I was also feeling nauseas). I ate because I was feeling as though my blood sugar was dropping (all the usual symptoms shaking, sweating, nausea, tired, heavy breathing, palpitations etc) I checked my BG though and was in low 5's. Normally I wouldn't see a need to do anything if my numbers were in 5's but as I felt so ill and I couldn't see what direction my BG was heading in I thought I should eat in case it happened to be dropping. Eating only made the hunger pangs worse! 10 minutes after eating I felt even worse so tested my blood again and it had gone up to 6.9. A little over half an hour later I tested again and it had plummeted to 4.9. When it drops after I have eaten it tends to drop very quickly. Most of the time when I wake up in the morning I am in the 3's even if I go to bed in the high 7's. Reactive hypoglycemia has been suggested as a possible cause.

As I say this time last year I had no hypo's but consistently higher blood sugar readings, especially in the morning and several hours after eating - now it is rare that a day goes by that I don't have a hypo, and it is happening several times a week, some days more than once, and more often than not I wake up with hypoglycemia. It is exhausting trying to stay on top of this when I don't even know what I am dealing with. Diabetes keeps coming up time and time again but doctors just seem pleased that my BG is so low - they don't seem to realize that there is such a thing as too low and to have so many hypos so often is not healthy and is making me very ill. When I was in hospital with the kidney infection my blood sugar wasn't tested until I was moved onto the ward on my third night. The nurse tested my BG and it was 3.8, she seemed really worried and said that I couldn't go to sleep until she brought it up again. I said that I was too nauseas to eat and drink anything so she came back 15 minutes later and tested again and it was 3.5. She seemed quite alarmed and said that there was no choice but to do something to bring it up. She asked if I could manage some Lucozade so I agreed to try. I was so sick that I literally just put a small amount on my lips and licked it off, hoping this would be enough as I hadn't been able to keep anything down in over a week. When she came back it had shot up to 6's - I know there is a bucket load of sugar in Lucozade but was shocked that my blood sugar could rise so much and so quickly when I had literally just wet my lips with it! By morning about 3 hours later I was back in the low 4's. After that they didn't tell me what the results were but were coming in several times a day to test my sugars, in the morning, before and after meals, and before bed, so were evidently concerned about something. It was just assumed at the time that my lows were a result of me not being able to eat or keep anything down due to the infection but my hypos are now worse than they were three months ago in hospital, and I am eating and drinking normally now. Well, as well as I can with the nausea. The doctor at the drop in centre told me that the constant rollarcoaster that is my blood sugar could easily account for that though, and gave me somemore antiemetics.

Diabetes does run in my family, as does autoimmune, and I have also been told by other people who have been diagnosed that although it is rare they did not have high BG when they were diagnosed and went for several years with high blood insulin and suffered many hypo episodes before they were finally told it was diabetes. Just out of interest, you say that you suffered from many hypos too before you were diagnosed, did you also have very high blood sugar or just the hypos? I have been wondering whether it is possible to have diabetes masked if your pancreas is over compensating by over producing insulin? When this whole thing started to get bad before Christmas last year the first thing I noticed was how tired I was all the time, and I had bizarre cravings for very sweet and sugary food and drinks (which I never normally consume). I was drinking a can of fizzy pop every day, and increasingly craving sugar, and salty foods, which I found strange because I hate fizzy pops and have never been a big consumer of sweet treats.

I am somebody who under normal circumstances have have a small bar of chocolate in the fridge for weeks before I finish it. I just couldn't understand where these cravings had come from. Anything carby I would just eat, and I was also drinking an increasing amount of milk (which I normally hate) and eating more cheese, etc because of severe dairy cravings. It got so bad but then anything I drank and ate started to make me nauseas until it became difficult for me to eat/drink anything at all. I desperately wanted to but just couldn't, I felt too ill. Strangely during this time I only lost a little weight by not eating, since coming out of hospital and eating again the weight has just started to drop off me. My mum says that I have become so pale, and that I look so gaunt in my face. This is despite being so insatiably hungry that its actually really quite distressing as I know I can do nothing to satisfy it. It's as though my body is screaming out to me for food, but not getting anything from what I give it.

I am eating healthily, so no junk food, and yet still I continue to lose weight! It makes no sense to me. I really appreciate any advice/feedback I get here, as I am at my wits end with this. I hate being so ill and the fact that this has been going on for so long now and that I have also lost my job over it is heartbreaking. I know that there is something seriously wrong with me, but getting the doctors and medical profession to do anything about it is a constant struggle, even when they are sitting on abnormal test results. Its a very frightening and helpless feeling. I used to walk for miles every day and now I can't even walk upstairs in my own house without feeling out of breathe and exhausted. Whats so sad is that I am only 29!

 

[Copepod]

From what you've said, your symptoms could be due to other hormone inbalances - in the field of endocrinology, but not purely diabetes mellitus. So, please push your GP for more tests and ask to be referred to an endocrinologist. Sorry to hear you've lost your job - if you're seeking / claiming health based unemployment benefit (ESA), then your GP will be involved in supplying fit notes etc.

 

[Bill Stewardson]

Hello Becky, hope your well today.

Reading through your posts you deffo could have been me lately.
Everything you put forward has applied to me symptom wise.
My various problems stem from pancreatic and gall bladder conditions.

Once they started on my pancreas things fell into place and headed in the right direction, though T1 is a consequence.

I am NOT saying that this applies to you Becky, it could possibly be worth mentioning though.

Good luck Becky.

 

[mikeyB]

It doesn't sound like diabetes - for a start, all your BG readings are in the normal range. Perfectly normal. And your symptoms, though they sound like hypoglycaemia, are too severe to be caused by your blood sugar levels. That said, there obviously is something going on which needs investigating.

You have been diagnosed with PCOS (polycystic ovary syndrome) which can be associated with other endocrine disorders, as well as insulin resistance (which wouldn't account for your current symptoms). You need to talk to your doctor, not about diabetes, which you don't have, but all the symptoms you do have. You certainly need more investigation. But what are these abnormal test results you mention? None of the tests you talk about are abnormal.

I know you were given the similar advice by Northerner when you posted the first time. I don't think anyone on the forum can help, it isn't a diabetes related problem.

 

[everydayupsanddowns]

I checked my BG though and was in low 5's. Normally I wouldn't see a need to do anything if my numbers were in 5's but as I felt so ill and I couldn't see what direction my BG was heading in I thought I should eat in case it happened to be dropping. Eating only made the hunger pangs worse! 10 minutes after eating I felt even worse so tested my blood again and it had gone up to 6.9. A little over half an hour later I tested again and it had plummeted to 4.9.

So sorry to hear about your difficulties Becky, and I really hope you can get to the bottom of things soon. What you have described does sound odd, and very difficult for you... but at the same time it is not the consantly elevated blood glucose that would form a part of a classic T1 diagnosis alongside the other symptoms (thirst, urination and weight loss) that you describe.

Just a note on the BG levels you are describing, which may provide some comfort. No one in the world has absolutely stable blood glucose. Variations between the high 3s and 7s are relatively normal in non-diabetic people as I understand it. This is becoming increasingly clear as more non-diabetic people wear continuous glucose monitors. So while you may have a little more variation than might be expected - it doesn't look like diabetes. The real difficulty to me seems to be your other symptoms. Not that I have any medical training - just an observation really.

The other thing you need to bear in mind is that even though your blood glucose meter offers results to one decimal place, it really is not that precise an instrument. Variations between different strips in the same pot, let alone different pots or batches mean that a degree of inaccuracy and variation is allowed in the results the give. So from a confirmed lab value of 'x' your meter is allowed to give results +/- 15% different 95% of the time. And 5% of the time can be significantly further out than that.

What this means in practical terms, if you look at the table below, is that your 5 to 6.9 to 4.9 may actually be much closer together than they appear, and actually me more to do with strip inaccuracy. If you test 2 times from the same drop of blood it is not uncommon to get to completely different values.

I really hope your Drs can get to the bottom of how you have been feeling, and offer some good suggestions for suitable treatment so that you feel much better.

 

[TheClockworkDodo]

Just out of interest, you say that you suffered from many hypos too before you were diagnosed, did you also have very high blood sugar or just the hypos? I have been wondering whether it is possible to have diabetes masked if your pancreas is over compensating by over producing insulin? When this whole thing started to get bad before Christmas last year the first thing I noticed was how tired I was all the time, and I had bizarre cravings for very sweet and sugary food and drinks (which I never normally consume). I was drinking a can of fizzy pop every day, and increasingly craving sugar, and salty foods, which I found strange because I hate fizzy pops and have never been a big consumer of sweet treats.

I wasn't testing my blood sugar at the time, and I have another illness which causes symptoms similar to high blood sugar, so I wouldn't be able to tell you exactly what was going on for the few months before I was diagnosed, I'm afraid - I only knew about the hypos because my partner has hypoglycaemia and I recognised the symptoms (also I felt better after eating). Like you I started to crave sugary foods though - that was just before I was diagnosed.

However, having said that, I agree with the two Mikes that the blood sugar readings you're getting at the moment sound perfectly normal, not in the diabetic range. When I was diagnosed my blood sugar was 20, and I'd expect readings in the high teens at least for someone developing diabetes, not just high 7s.

I think you need to get yourself referred to an endocrinologist and get some more tests done though, as clearly you're not well, and it sounds as though you need more specialist help.

 

[TheClockworkDodo]

Just to add to Jenny's post re B12, I believe that anaemia means that you don't absorb B12 properly if you just take it orally - so if you have anaemia you may need to get B12 injections rather than supplements. It's definitely worth asking a specialist about this when you get to see one.

I hope you are able to get some help soon.

 

[CosmicHedgehog]

I'm not a doctor so can't really comment on your multiple symptoms, But...like you say you are definitely having hypos especially after eating. This sounds like reactive hypoglycemia. I think you should ask to be refered like others have said to an endocrinologist. It sounds like there is a lot of guessing going on and you really should see someone who specialises in this kind of thing.

 

[Amigo]

Just to add to Jenny's post re B12, I believe that anaemia means that you don't absorb B12 properly if you just take it orally - so if you have anaemia you may need to get B12 injections rather than supplements. It's definitely worth asking a specialist about this when you get to see one.

I hope you are able to get some help soon.

I suspect Jenny's point referred more to pernicious anemia which is quite different and doesn't respond to ordinary supplements as a result of lack of intrinsic factor antibodies. This link explains; - it's different to ordinary anaemia

https://patient.info/doctor/pernicious-anaemia-and-b12-deficiency

 

[Becky'Bea'K]

Thank you everyone 🙂 I literally just found out today that I am now registered with a new GP so finally rid of my previous practice! I am trying not to get my hopes up too high as I have been so dismissed and disappointed by my doctors in the past, and their inability to take this seriously, but at least it's the chance of a new start. I actually heard about another lady the other day who was diagnosed because she was having hypos. Like me I think she was tested for diabetes several times and came back negative but she got worse until she was found to have too much insulin in her blood, but obviously I don't know the full story and can't remember where I read the story now! All I know for defo is that I definitely have hypoglycemia as that has at least been acknowledged by doctors (at least that was something). All the doctors I have told my symptoms to in the past have been convinced that it is diabetes and the only thing that doesn't fit is my BG but as I say I have never had my blood insulin levels tested before. A doctor I saw at the drop in centre last week said that if one test is not showing anything they should be running other diabetes tests to triple check just to be sure as he said there are many ways to diagnose and obvs how a test is done and at what time can also have an effect. All I know is that whatever this turns out to be I just want to know. My BG was actually much higher last year when I stated testing, before the hypos came on. I didn't actually get any hypos at all last year, but then again I am avoiding most food and drinks high in carbs and sugar at the mo as I have found that these really do push my sugar up and make me feel very unwell. I am doing this on the advice of a doctor at my old practice as she said that doing this should help prevent hypos in the future, but it has made no difference to my drops in sugar so far. Because of this I really don't know what would happen to my sugars if I downed a bottle of lucozade and ate a chocolate bar. When I was indulging my sugar cravings last year I became very ill very quickly and that was when I started losing weight. Unfortuantly although I had a blood sugar metre I didn't think to use it to check my levels at the time, so I guess I will never know what they were. I just hope I can get to the bottom of this soon! 🙂

 

[Becky'Bea'K]

I suspect Jenny's point referred more to pernicious anemia which is quite different and doesn't respond to ordinary supplements as a result of lack of intrinsic factor antibodies. This link explains; - it's different to ordinary anaemia

https://patient.info/doctor/pernicious-anaemia-and-b12-deficiency

Thank you! Reading this just makes me so angry! The doctor who diagnosed me said that he wants to wait and see if he can bring my levels up himself if my inflammatory levels will go down! He only sees me once in a blue moon though and every time I see him just keeps telling me that my bloods are still abnormal but we will repeat the bloods and revue in another couple of months! I feel like a lab rat, but he is not a specialist, and whilst he is experimenting I am getting iller! Will definitely be pushing to get to the bottom of this as my health is just too important to me to play games with!

 

[Amigo]

Thank you! Reading this just makes me so angry! The doctor who diagnosed me said that he wants to wait and see if he can bring my levels up himself if my inflammatory levels will go down! He only sees me once in a blue moon though and every time I see him just keeps telling me that my bloods are still abnormal but we will repeat the bloods and revue in another couple of months! I feel like a lab rat, but he is not a specialist, and whilst he is experimenting I am getting iller! Will definitely be pushing to get to the bottom of this as my health is just too important to me to play games with!

Becky, ask him for a referral to a haematologist because it sounds like he's not specialist enough in this area.

 

[mikeyB]

Becky, to repeat what has been said, your symptoms are not those of diabetes no matter how many tests you have, or how many doctors you see. This concentration on diabetes is distracting you, and possibly your doctors, from finding out what's really wrong with you. You've not had a BG result outside the range of normality. You describe your blood sugar shooting up to 6.9. So what. That's normal if you eat something, particularly something sugary, and it's just as normal for that level to drop down fairly quickly. Normal. Don't you understand the word normal? You say you've had symptoms with a BG of 5. That is a perfectly normal BG level. If you have symptoms when your BG is normal, it's not hypoglycaemia causing them. I'm not saying you don't have symptoms, but it isn't diabetes.

 

[trophywench]

Hang on - I understood anaemia means that the normal HbA1c test won't throw up correct results - think they have to test the Fructosamine levels for that. However AFAIK BG meters - fingerprick tests - are just as accurate for a person with diabetes as they are for one without D.

However - expert on any of it, I ain't.