Finally diagnosed, but not really sure where to start.

[silky1]

Hi

I'm a newly diagnosed diabetic as in yesterday it was confirmed - I have an appointment with the diabetic nurse tomorrow - that should be fun considering I'm also coeliac and have a high level of intolerance to dairy produce and cannot eat or drink any sweet diet foods as nearly all of them contain aspartame which makes me violently ill.

For the last 5 years I've been trying to get the doctors to listen to me that I suspected I had diabetes and this was disregarded on random blood tests - even though I barely ate anything and virtually lived on Coca Cola, Ribena or Lucozade. I've also had two bouts of acute pancreatitis where they've been unable to identify the cause - apparently it wasn't my gall bladder and I don't drink.

All this came about because I had a few funny turns and then a brain MRI which showed more white matter hyper-intensities than I should have for my age - he decided as an ex-smoker who'd been on BP medication that this was the cause and the turns may have been TIAs - he did a heap of blood tests and this time my blood sugar came back 10.9 - I'm not yet familiar with the diabetic world but I'm sure there are many others with levels higher and lower.

I was transferred back into the care of my GP and asked for a repeat Blood Glucose to be done - this time they also did a HbA1c test which has never been done before.

My Glucose came back 17.9 this time. My GP has written me a script for Metformin - although my mum (a retired nurse) says I should wait to see the nurse - my daughter - currently a staff nurse on a vascular ward was quite shocked at my results, but has also seen much worse during the course of her work.

(my paternal grandmother & aunty had late onset diabetes - but a fair bit older than me (I'm 49) and my dad was "borderline" - he eventually passed away from pancreatitis triggered by surgery to remove cancerous lymph nodes (the irony - had he not had the surgery he would probably still be here)

As part of all this I had a carotid artery scan yesterday and they were deemed perfect (much to the consultants surprise).

I have an unstable spine so can barely walk, fibromyalgia and various other problems - people find it hard to believe I still work - I do - but not like I used to and usually from home.,

I'm really not sure what I'm hoping to get out of typing here - but I am experiencing so many emotions ranging from anger, to relief that I wasn't going mad and over to fear of what the future holds for me.

 

[RuthF]

Hi I know it is tough to get diagnosis. Let's connect on Twitter I am @ruthfunk and have pics of glucose charts so you can see what is a healthy range. We eat eggs, vegetables that are low glycemic (so no potatoes or that type), grass fed meat, coconut milk. Take baby steps and watch what spikes your sugar level. Walk 30 minutes a day if you can. Walking helps a lot

 

[Daibell]

Hi and welcome. Yes, you have grand mix of conditions! I trust you were joking about the Lucozade etc; bin it and don't buy any more. As you may gather you need to keep the carbs way down. Make up with fats and proteins if you can. Was the 17.9 figure your HBa1C in %? If so it's horrendous. Can you give us some idea of your BMI. this may help guide us as to whether you are T2 or late onset T1. The metformin is unlikely to do any harm and will help a bit if T2. If late onset T1, then different medication will be needed. Do provide more info.

 

[silky1]

Hi I know it is tough to get diagnosis. Let's connect on Twitter I am @ruthfunk and have pics of glucose charts so you can see what is a healthy range. We eat eggs, vegetables that are low glycemic (so no potatoes or that type), grass fed meat, coconut milk. Take baby steps and watch what spikes your sugar level. Walk 30 minutes a day if you can. Walking helps a lot

Thanks for the welcome and the Twitter invitation Ruth, I do have an account but - very much still a novice will give it a try. ( don't even know my ID - just that it came in very helpful when BT accidentally disconnected my phone and I tweeted them re the DDA - they went from repaired in 5 days to an engineer on my doorstep 730 on the Sunday morning.

With regards to the walking - because of my spinal issues I can't manage more than a few metres without seizing up - I have spinal stenosis and spondylolisthesis including pars fractures and severe degeneration from L3 down to S2 - they were going to operate - but this was reviewed when my allergies, eczema and pretty much permanent cellulitis on my legs came to the attention of the spinal consultant It's been confirmed that lighter forms of surgery are not an option The biggest risk if because I'm allergic to penicillin and many other Antibiotics - if I get an infection - the likelihood is they will have no choice to take all the metal work back out - then I am in trouble,

Hi and welcome. Yes, you have grand mix of conditions! I trust you were joking about the Lucozade etc; bin it and don't buy any more. As you may gather you need to keep the carbs way down. Make up with fats and proteins if you can. Was the 17.9 figure your HBa1C in %? If so it's horrendous. Can you give us some idea of your BMI. this may help guide us as to whether you are T2 or late onset T1. The metformin is unlikely to do any harm and will help a bit if T2. If late onset T1, then different medication will be needed. Do provide more info.

Hi Dalbell - thanks for the welcome - sadly no - I wasn't joking about the Lucpzade - I think I've kept SKB in business the last few years.

I can't give you any more info atm - hopefully I will have more information tomorrow which will make things clearer.

Unbelievably - I don't have a sweet tooth for anything else - I don't each chocolate or desserts - they can sit in the fridge for months -- I don't put sugar in coffee and bizarrely wouldn't dream of sweetening any hot drink and haven't done so for 35 years

 

[silky1]

I know I've been waffling away - but I'm seeing the diabetic nurse for the first time, and it would be really useful for any suggestions anyone has on what I should be asking

TIA

 

[ButtterflyLady]

I know I've been waffling away - but I'm seeing the diabetic nurse for the first time, and it would be really useful for any suggestions anyone has on what I should be asking

TIA

Welcome. When you see the nurse she will most likely tell you to eat carbs at every meal... please just nod and smile but don't do what she says. This outdated advice is what the official guidelines tell the nurses to say but as you will soon find out it is harmful advice: we need to be reducing our carbs as much as we can. She may also tell you not to test your own blood glucose levels. Also outdated and harmful advice, best to nod and smile. If you feel like pressing to get a meter and some initial test strips, by all means have a go. But don't be surprised if this just causes tension.

If you are lucky enough to see one of the few nurses who "gets with the program" then you might hear positive things about self testing. If so, go with it

There are a few of us here at the forum who have multiple ongoing conditions, and some with multiple allergies too. I know of someone offline with the same spinal issues as you. Has a cortisone injection ever been considered? If you have one, NB it will raise your blood glucose for at least 10 days. But they can provide good short term pain relief. Not a permanent fix of course

Metformin may cause stomach upset and diarrhoea. If it does, try the slow release version. These side effects usually settle too.

Are you on other drugs for your other conditions? Sometimes it can be handy if we know what they are, as we can let you know where to find info about any interactions with diabetes drugs, and also effects on blood glucose. Sometimes doctors make mistakes and it's good to have info about drugs. We can then ask them to clarify things for us.

 

[catherinecherub]

I know I've been waffling away - but I'm seeing the diabetic nurse for the first time, and it would be really useful for any suggestions anyone has on what I should be asking

TIA

There is a useful article here of what to ask at your appointment.

http://www.diabetes.co.uk/forum/threads/questions-to-ask-at-a-diabetes-clinic.17091/

 

[silky1]

If you are lucky enough to see one of the few nurses who "gets with the program" then you might hear positive things about self testing. If so, go with it

Metformin may cause stomach upset and diarrhoea. If it does, try the slow release version. These side effects usually settle too.

Are you on other drugs for your other conditions? Sometimes it can be handy if we know what they are, as we can let you know where to find info about any interactions with diabetes drugs, and also effects on blood glucose. Sometimes doctors make mistakes and it's good to have info about drugs. We can then ask them to clarify things for us.

I am very lucky in a way that my daughter does the job she does and has a fair bit of knowledge and I know she will keep on at me about diet and sugar / ketone levels.

Thanks for the tip on the Metformin - I took my first one today in the end

II know of someone offline with the same spinal issues as you. Has a cortisone injection ever been considered? If you have one, NB it will raise your blood glucose for at least 10 days. But they can provide good short term pain relief. Not a permanent fix of course

I've had the injections - went through hell doing so - they didn't work - 18 months later they discovered it was because my spine was unstable because of the fracture(s) - which sort of shot all their plans for me down in flames

Off to see the nurse in 40 minutes GULP

Thanks for the tips and links both

 

[silky1]

Sorry CatLadyNZ - missed your question about the other meds - unfortunately I am

• Co-codamol effervescent or paracetamol and codeine (I tend to mix and match - I prefer the effervescent but am conscious of sodium levels)
• Temgesic SL tablets (My skin couldn't tolerate the patches which are brilliant
• Tramadol for breakthrough pain
• Diazepam PRN
• Hydroxyzine (anti-histamine)
• Tritace (Ramipril) for blood pressure
• Oral steroids for short periods to get my skin under control

I was also on amitriptyline which helped greatly but my dry mouth and thirst was worse than normal - now of course, we know it is possible that this just exacerbated my issues as I still have an appallingly dry mouth and constant thirst.

My consultant also wants me on statins - but we shall see about that one

I can't tolerate any anti-inflammatory meds - they have been identified as one possible cause of the acute pancreatitis

 

[ButtterflyLady]

Sorry CatLadyNZ - missed your question about the other meds - unfortunately I am

• Co-codamol effervescent or paracetamol and codeine (I tend to mix and match - I prefer the effervescent but am conscious of sodium levels)
• Temgesic SL tablets (My skin couldn't tolerate the patches which are brilliant
• Tramadol for breakthrough pain
• Diazepam PRN
• Hydroxyzine (anti-histamine)
• Tritace (Ramipril) for blood pressure
• Oral steroids for short periods to get my skin under control

I was also on amitriptyline which helped greatly but my dry mouth and thirst was worse than normal - now of course, we know it is possible that this just exacerbated my issues as I still have an appallingly dry mouth and constant thirst.

My consultant also wants me on statins - but we shall see about that one

I can't tolerate any anti-inflammatory meds - they have been identified as one possible cause of the acute pancreatitis

Yes I can see quite a few meds there that can affect weight as you are no doubt aware. We do the best we can. I'm on 10mg Amitriptyline which seems to help a bit with sleep and pain. I just sip water whenever I feel like it. I too can't tolerate NSAIDs as they worsen my gastric reflux/dyspepsia. I take paracetamol most days and it helps a lot.

I think eating fewer carbs can really help... I always feel better when I am not eating many. Not so heavy and bloated.

 

[silky1]

Yes I can see quite a few meds there that can affect weight as you are no doubt aware. We do the best we can. I'm on 10mg Amitriptyline which seems to help a bit with sleep and pain. I just sip water whenever I feel like it. I too can't tolerate NSAIDs as they worsen my gastric reflux/dyspepsia. I take paracetamol most days and it helps a lot.

I think eating fewer carbs can really help... I always feel better when I am not eating many. Not so heavy and bloated.

None of the meds have had any impact on my weight neither do they have much impact on my pain levels - probably paracetamol and tramadol with top up Temgesic and Diazepam is the most effective - but I've now virtually moved to Temgesic as my 2nd line painkiller and Tramadol as my third - as well as being stronger - Temgesic is far less addictive.

As a coeliac - carbs don't really figure that much in my diet - neither does fat for that matter - what does (or did) was sweet drinks.

I'm going to have to work really hard to try and change a pattern of many years - not easy as I can count on one hand the number of times I'm hungry in a week if not longer

Fats I'm going to have to be VERY careful because my Triglycerides are very high

I know I sound like I'm being deliberately obstructive and awkward - I'm not, I'm really trying to work out combining coeliac, diabetes, a sensitivity to milk and an allergy to the most widely used sweetener

On the upside (and much to the professionals surprise) my carotid arteries are perfect and I've got strong pulses in both feet.

My HbA1c was 106, my blood glucose level was 17.9 - my cholesterol was 4.7 which ostensibly sounds fantastic until you start looking at the constituents - not good

It's certainly going to be interesting I know that

 

[ButtterflyLady]

None of the meds have had any impact on my weight neither do they have much impact on my pain levels - probably paracetamol and tramadol with top up Temgesic and Diazepam is the most effective - but I've now virtually moved to Temgesic as my 2nd line painkiller and Tramadol as my third - as well as being stronger - Temgesic is far less addictive.

As a coeliac - carbs don't really figure that much in my diet - neither does fat for that matter - what does (or did) was sweet drinks.

I'm going to have to work really hard to try and change a pattern of many years - not easy as I can count on one hand the number of times I'm hungry in a week if not longer

Fats I'm going to have to be VERY careful because my Triglycerides are very high

I know I sound like I'm being deliberately obstructive and awkward - I'm not, I'm really trying to work out combining coeliac, diabetes, a sensitivity to milk and an allergy to the most widely used sweetener

On the upside (and much to the professionals surprise) my carotid arteries are perfect and I've got strong pulses in both feet.

My HbA1c was 106, my blood glucose level was 17.9 - my cholesterol was 4.7 which ostensibly sounds fantastic until you start looking at the constituents - not good

It's certainly going to be interesting I know that

Yeah, I can see you are up against it. You're doing your best... actually you are doing better than most people because you understand your conditions and treatments really well.

Are some of the other sweeteners ok?

 

[silky1]

Yeah, I can see you are up against it. You're doing your best... actually you are doing better than most people because you understand your conditions and treatments really well.

Are some of the other sweeteners ok?

Thank you - I didn't feel like it when I opened my testing meter this afternoon. I'm not a manual reader and there are 64 pages.

With regards to sweeteners - I've had sorbitol previously (I am aware it's a laxative in large doses) - they include it in one of my effervescent brands of co-codamol and not had an issue with it.

Aside from that, until today, I've never intentionally or knowingly tried any others - however, my daughter gave me what I thought would be brilliant news yesterday - that Sainsburys have stopped using Aspartame in their sweet drinks - so I bought a bottle of one of their squashes; I had THREE mouthfuls (if that) - I've been curled up in a ball in agony since - my OH has just made me tea most of which I didn't eat and my stomach is still griping now - I know the Metformin could have been responsible, but it was something of a co-incidence it happened very shortly after trying the squash - I also found it hideously sweet - far more so than any of the full sugar drinks - trouble is - that's going to taint my willingness to try others

The only hot drink I have occasionally is Coffee and that's a black sugar free Americano from my Tassimo.