Freaky symptoms - Kidney disease or worse?

[SugarBuzz]

Hi. Didn't realise I already had an account here from a few years ago (back in the good old days - as I currently refer to those years). I was actually debating whether I should actually post this in a cancer thread or here, but here I am first.

I've been type 1 diabetic for 24 years (jesus christ) and apart from the first year where I was quite stable - being at home and aged 17 - my hba1c levels have ALWAYS been high. Even way off the scale at one point (13%+).
So I'm worried that all this for so many years has finally taken it's toll and I'm about to receive some really bad news.

I've been having some strange symptoms since early February - started with 'nerve twitching' in the calves initially (several places) and now it's constant and completely random like in the upper legs, sometimes in the nose, back, arm, abdomen area, once my cheek even went crazy for a minutes. Basically randomly all over the place. Also my blood sugar levels were REALLY high . . like 23.0 (old way of measuring).

Obviously after this kept me awake for 2 nights running I went to the doctor and she ordered a full blood count and prescribed me 5g of diazepam (morning & night) for 2 weeks. Though I didn't take it in the morning as I thought it is considered more an anxiety drug - which I have never ever suffered from - so only started with 2.5mg at night (occasionally 5mg) to help me get to sleep. Which I took for 2 weeks, then stopped.

Anyway, I went for my blood results around 15 days later with very concerning results. The flags were (note Spanish -Spain readings so so conversions/numbers could differ):

hba1c 8.1% - 65.03 mmol (obviously high - put just par for the course for me I guess)

Lymphocytes % was very high at 53.80% (recommended 20.70-41.70%)
Neutrophils 31% (recommended 48.40-72.10%)

Lymphocytes count 3.32 x10e3/ul (recommended range 1.19-3.18)
Neutrophils count 1.91 x10e3/ul (recommend range 1.80-8.0) - so very low end.

I'm actually terrified. As most people do ...I spent days and hours googling and researching online and this data always comes up with the dreaded C word and in particularly of the blood. Also the link between cancer cells loving sugar and insulin and then another one about a possible link between the long acting glargine insulin and cancer risk.
Anyway, back when I had the bloods taken - apart from the twitching I didn't have any other symptoms of an infection or cold which could suggest why my white cell count was high.

In addition to this my flagged results continue as:

biochemistry serum glucose 237 mg/dl (recommended 70-110) :-(

urine also showed 204.55 mg/dl of creatine (recommended range 30-125)

Which indicate some kind of kidney problem.

It was my Birthday the day after I got my results - so needless to say I went out and got super wasted - like really bad. Anyway since then I've had light headedness for 1 week now, a couple of night sweats in a row (though none the next 2 nights), the twitches continue continuously and also I've had a really 'tight feeling' - shortness of breath kind of feeling under the top part of my chest - between my pecs. I initially thought this might be from the hangover, but it's been over 1 week already so obviously something more sinister.

Also I felt brief nausea a couple of times in recent days in the late night (before bed). Also I've had the feeling of being dehydrated - like dryish lips - even though my urine has usually been running clear (or clearish) during the same time. Edit: Also I noticed a few of those tiny red blood spots appearing particularly on the front of my body chest/ribs/abdomen. Though I've had one of those on my stomach for about 2 years already (though 2-3 mm in size) - bigger than the newer ones.

Just wondering if anyone here ever got diagnosed with kidney disease and what their symptoms were or maybe even leukaemia. As I read diabetics are unfortunately more likely to get cancer unfortunately. And after 24 years of type 1 (and not well controlled - well it could be too late for me).
As those are the 2 things I'm fearing at the moment.

Also there is a lost in translation element to this as I am currently live between the UK and Spain (long story) and my Spanish is good enough to live (though medical stuff is new to me). The 2nd doctor I saw here to get my results seemed very unconcerned - perhaps a little too much.
She referred me to an endocrinologist/nutritionist. Though they don't have any of my previous medical records or history or anything. The doctor seems more concerned about the blood sugar level and asked about my diet.
So of course I'm worried about that too - as I would have thought I should be referred to the one that deals with blood disorders (oncologist) or kidney (nephrologist).

As they seem to be the 2 main worries at the moment. Well sorry for the rant. I guess I just needed to write this down somewhere. I'm wondering if I should fly back to the UK asap and see a doctor there or wait this one out and wait for the specialist here - as I have no idea how long these things take on the NHS any more.

To finish on some good news. My HDL and LDL cholesterol were also flagged on the blood sheet - because my level of good cholesterol is actually higher than the 'recommended zone' and my levels of bad just slightly below the zone. Also my resting heart beat was 50bpm. Probably due to all the sport and exercise I've done over the years and a fairly decent diet - though in effect the exercise (intense at times) and sports teams actually made it hard to ever get my sugars under control (as you never really knew how hard a training session or game would be so I probably always over compensated by 'scoffing a few chocolate bars'. Perhaps sports/gym/running etc. also gave me a bit of a blasé attitude of - well if I stay fit I should be okay-ish. Obviously not the case.

So I'm in good shape apart from kidney disease and the blood cancer, LOL.

Thanks for reading. Any comments, help, advice, greatly appreciated.

 

[Kristin251]

Can't comment on a lot of it though I wish I could as I was a medic but this isn't the place. First line of defense for ME would be to get your bs in order. Yes, cancer feeds of sugar. Start there...

 

[Resurgam]

My Hba1c was 91, and I didn't feel ill - just rather old.
I do feel a lot better for having got control of my blood glucose, so as I can't give medical advice, I also encourage you to sort out your diet and bring down your blood glucose levels.
If you eat fewer carbs you will need less insulin - though you will need to concentrate on getting it to the right levels. You are in your early 40s if my maths is right - maybe it is time to start looking after yourself?
I feel so much better for getting my blood glucose down and the diet is hardly difficult to do or maintain despite what you might read - I managed to eat Atkins for ages and felt brilliant - I just shouldn't tell doctors about it, and get told to follow their idea of a healthy diet - I never feel right eating half the junk they prescribe. Eating low carb can lower blood glucose levels drastically - just try it and test a lot - see what you can eat and get down to safer levels. No matter what might be diagnosed - or not - you should at least look after yourself day to day - there's no sense in making things worse by neglecting to do what you can in order to help yourself.

 

[Juicyj]

Hi @SugarBuzz thanks for posting an honest insight into your situation with the greatest of respect the way you have responded to the results shows you are feeling more than anxious about this. I am no doctor so I cannot comment on your results but my personal take on your situation is to start reigning those blood sugars in and start to get some better control. This sounds like the wake up call you need to really take it seriously. Has anyone discussed your control with you and is there any reason why you haven't tackled this ? what is your current regime like and are you on multiple daily injections ?

I appreciate living in Spain has its difficulties, but do you think you've been finding excuses to not manage this better, maybe living has got in the way of control ?

Start with the basics so get 'think like a pancreas' excellent read for type 1's. Start today, no time like the present to do this, record your results so write them down or get a phone app to record, look for patterns, try to analyse what you need to do. As far as cancer is concerned, who knows ?? think about what you can do today to change any possible outcomes though and to start by taking more care of your type 1

 

[JaneC]

I believe that with such a complex set of results, that they do need to be discussed with a medic rather than a load of non professional type 1's for more accurate analysis rather than conjecture and speculation. It's such a worrying time for you and I think this could make you worse. Get yourself to see someone as soon as possible which could put your mind at rest or give you a more accurate picture of what is going on.

 

[azure]

@SugarBuzz Stay away from Doctor Google! A simple headache will show up as cancer with Dr G!

But as you've been googling, I did too and I found this reassuring information about your twitches:

http://scarysymptoms.com/2012/01/muscle-twitching-all-over-your-body/

Nobody here can interpret your results but I would imagine that if you had leukaemia you'd know about it as you'd have received urgent attention. Did you ask your doctor to explain each of the results that are worrying you? If not, you should do.

You mentioned other symptoms of feeling dehydrated and dry lips. That's not surprising with a blood sugar as high as 23. I'd feel really, really **** if mine was that high. I start to feel thirsty and dehydrated around 12. If your blood sugar is frequently high, then that dehydration will build up over time.

You say your doctor has referred you to an endocrinologist - that's good news. If you get control of your diabetes, you should feel a lot better in yourself.

i second the recommendation to get the book Think Like A Pancreas - it's excellent. I also recommend brushing up on your carb counting as something's clearly off with that if your blood sugar is so high. I would guess your basal dose needs looking at too. Type 1 is a sneaky beast. You can't forget about it or think it's all sorted. It needs attention to make sure your BS stays in range - attention and hard work.

Take comfort from the fact that your doctors seem to be fine with your results and do get them to explain the ones that are concerning you.

 

[SugarBuzz]

Hi. Thanks for the responses guys, and for the attempted reassurances.

However, I think it could be too late for me. In regards to BFS I've come across similar info before, as of course when you type 'muscle twitching' into google you end up with ALS/BFS information. Though for me I doubt it's just BFS as it's not just my muscles twitching - it's like the nerves/veins all over the place - including the forehead, inner abdomen, lower back and parts of the calf area below the muscle etc.
As far as I'm aware when you contract the muscle the twitching should stop in regards to BFS - but in my case (when I tightened my calf) it didn't. Not too concerned it's ALS (MDS) though (as there was no clinical muscle weakness in my calves where I first noticed I had the twitches.

Also I have too many other symptoms. For example, my blood results - I'm almost 100% sure that BFS does not make you have a high white blood cell count.And on the date of the test (1st March) I didn't have any other symptoms - like a cold etc. which could have indicated a high white blood count due to fighting that off.
I've also been feeling weak/dizzy, my skin feels hot, sugar levels have been higher (indicating infection of some kind), I have felt dry mouth even when hydrated (and when sugars have been low/within good range during the last couple of days and urine running clear as water), certain aches even though I haven't even been training or running for 2 weeks now. I've also lost a bit of weight. I wish it was just BFS - but there's something seriously sinister going on. Also I know it's Dr Google again - but everything is out there in one study or another. Reading the "Paraneoplastic syndromes earliest sign of some cancers" just further confirmed what I suspect.


One of the worst things is being stuck in limbo - as I'm abroad - and the doctor that I saw I wouldn't describe as 'my doctor' . It's just some random I've only seen twice - as she doesn't have any of my medical records. The full blood count test (which was actually on March 1st) is the first reference they have. Then there's the issue with the language - some people don't even try and understand. Also, as with everything in life - there are good and bad doctors (you're just 5 minutes of their time after all - espeically to an unknown or new doctor) - the last GP I saw in England in early February before I came back here to Spain said 'my sugars were okay' with a hba1c of 8.3% (67.2) ***! I mean seriously, I WAS SHOCKED! I immediately left the surgery and filled in a new patient form for another surgery.

Anyway, the other problem (as anyone anxiously waiting will know) is the wait times and the slowness and perceived lack on interest in it all. My endocrinologist appointment here in Spain is not until 17th May
I mean It's a possibility I may have died or gone full on crazy by then. And if I go back to England I can't imagine that the NHS wait times will be any better.


With regards to my blood sugar levels . . in the last few days they have been well controlled, as I've been giving myself more insulin and testing my bloods like crazy (my blood meter says 75 times in the last 7 days).

Once again, thanks for reading. If anything the internet is one place I can actually put my thoughts down (and out there) as of course I have nobody to talk to about things.

 

[azure]

@SugarBuzz Csn you not phone the doctor who did your blood test and ask them about the ones that are concerning you?

If their English/your Spanish isn't good, you could get someone to interpret.

You can't diagnose yourself from Google. I'm still confident that if you had leukaemia, the doctor would have mentioned it or referred you to an appropriate specialist.

You seem to have convinced yourself that all your symptoms are "sinister", to use your word, but many of them have far more benign explanations than the ones you're proposing.

 

[SugarBuzz]

Hi. I don't know where you live, but the health services that I deal with (especially in bigger towns and cities) aren't so personal - as in there's no way you can just phone the doctor and they'll take your call. Although one good thing is that it's A LOT easier to get a doctor's appointment here in Spain than it is in the UK.

Of course, you're right about symptoms - as with most illnesses and diseases they can vary wildly and mimic others. Though my grandmother that died before I was even born died of leukaemia - so that added 'fuel to the fire'. Also as I stated before - some doctors (GP's) are simply awful - you get the feeling that some of them don't really have more of an idea than 'Dr Google' most of the time.
Case in point - I'm 100% sure than most people here would agree that for a doctor to say that an Hba1c blood of 8.3% (67.2) is "fine/okay" is pretty bad, so of course doesn't inspire confidence. Sometimes you almost feel like you have to try and do things yourself with all the thousands of websites/books/reports out there, which of course has it's own risks. But hey, I was getting pretty obsessed with that - but in effect I did read A LOT for several hours a day - it wasn't like I read one person's blog and that was that.

The twitches continue (it's been 2 months now) and are moving to new places on the body all the time (last night it kept me awake until I had to drop 2.5mg of the diazepam I still have from the initial prescription I was given - though I don't like taking that **** - as I felt drowsy as hell when I finally got up at midday and still do a bit now). One thing that's really baffling me is the severe dry mouth/sucked in cheek feeling I get - especially as it continues - even though I've been drinking enough, urine is running clear (almost like water sometimes) and my sugar levels have been good for 3-4 days now due to the crazy amount of times I've been testing and injecting. It's almost like I'm getting symptoms of being first diagnosed - drinking a lot, dry and frequent urine passing. Though as I said - I seem hydrated and last 3 blood sugars have been 3.9, 3.4 and 5.7mmol. :-o Bizarre!

Another symptom which I didn't mention is that my heart occasionally feels like it's beating a bit funny/fluttering - especially noticeable at night when it's quiet and you're not concentrating/doing other things.

I'm not sure how many times I can keep going back to the doctor - as she was more concerned about my blood sugar level and refereed me to the endocrinologist (though appointment not until 17th May as stated). I did think about presenting myself at 'A&E' at one point just to get checked out.

Of course you mainly know your own body and obviously something is not right. It's just frustrating that things take so long and you can't seem to get the tests you think you need etc.
Meanwhile it severely affects your current quality of life - i.e. - I haven't been jogging for over 2 weeks now (whereas before that was a 3 times a week thing whether outside or treadmill). I also didn't attend a course I was supposed to do as I felt too unwell.

 

[azure]

@SugarBuzz Dont underestimate the very real physical effects anxiety can have on the body. I had palpitations at night and a feeling like I couldn't breathe. It kept me awake and even woke me up sometimes. I certainly wasn't stressed when I was asleep, so I got quite worried. However, I was goi g through a very stressful time and, even though I wasn't stressed at that moment, the ongoing effect of the stress on my body caused the palpitations. They were worse when I,was tired.

All I can say is to get another appointment, speak to your doctor and perhaps specifically ask if you have leukaemia and/or kidney problems. That way you'll get a direct answer. If they say No, you can ask them to,explain the test results that are making you think that.

 

[SugarBuzz]

Thanks for the response again. I did wonder if thinking too much could have made my symptoms worse and there's certainly the possibility that I could have had at least a dose of anxiety - though I haven't had any previous problems with this at any other stage in my life and of course when this all started with the initial symptoms I didn't have any anxiety or particular stress. I don't really know too much about that angle - but I think it's probably something you can't catch physically like an infection or virus - from what I know it's more of a mental state (which affects you physically - as I'm sure I experienced several days ago when it actually felt like I was on the edge of passing out and possibly dying). But I'm ruling that out as a cause of my constant twitches, high white cell count and other symptoms.

Anyway the twitches continue :-( and a bit of fatigue - though I did force myself out for a jog today for the first time since I got the last 'scary' test results. I'll go back to the doctor in a week or 2 and request another full blood count.