A rant about things...again!

[Silmarillion]

I have been having problems with my diabetes for about 4 months now. My doctor has put it down to my inability to deal with stress lol! I obviously can't use the word I use to describe him among polite company so I'll refrain from doing so!

Since I've been diagnosed as being diabetic I've been having all kinds of problems.my original HbA1c was 148 on diagnosis. I was started on metformin. I've been feeling awful the whole time I've been on it. In fact I felt better when I was ketoacidotic and dropping weight like there was no tommorow.

I've been plagued with blurred vision. I'm visually impaired normally, and the blurred vision on top of the visual impairment is making my life very difficult!
I can just about see my computer and it's big....let alone the screen.

My blood sugars are unstable. I have a very stressful job. I can cope with the odd blood sugar spike, but recently over the space of three weeks I've been getting some very low blood sugar readings ie 2.3 to 3.1 when under extreme duress. I have felt freezing cold, sweating profusely, I haven't a clue where I am, yawning a lot, acting like I'm drunk. To me these are episodes of hypoglycaemia as they are corrected when I eat. My GP thinks I am making this up and that I'm getting hysterical because I'm looking at my blood sugar machine and I'm freaking out because it is low. This is not the case! I'm a registered nurse and I'm a very matter of fact kind of person. He doesn't believe in type 2 diabetics testing their blood sugars, and will not prescribe any test strips....I've explained that I want to do whatever it takes to achieve tight glycemic control and I'm still buying my own! ( I did get one packet out of the nurse)

I am also getting pounding headaches everyday. I'm so tired and washed out, I'm falling asleep on public transport, sleeping all the time when not at work and I'm ratty all the time and I'm usually a happy go lucky person.

He says he is going to test me for things, then he does not do it and repeats the results of previous blood tests or tells me he didn't intend ordering tests after he's told me he is going to do it. Last month he told me he had ordered thyroid function tests again as my result 2 months ago were borderline. He phoned me and told me the previous months result. I am quite symptomatic of hypothyroidism, and have antibodies that are high.

I asked him to test me for type 1, he said he would. When he called a few days later with my HbA1c results he told me he had not. Despite me sitting watching him look up the pathology he should order....he decided not to do it....didn't bother to tell me till after the fact....and I asked him why and he said its because I fit the profile of a type 2.....I said is that because I have a BMI of 30 ie I'm fat and 45... And he laughed and said yes.

There are hardly any GPs in my town in Scotland...the ones in my practice are terrible, overworked, but awful. So not many options to change Gp.....or get a sensible second opinion and my quality of life is suffering.

Sorry to rant again, about the same things over and over, but I just feel like I'm getting nowhere.

Do others get problems on metformin?

 

[trophywench]

Well if you really had DKA and were dropping weight - then you must be Type 1 as T2 cannot get DKA - how long were you in hospital with it?

But if you are T1 you can't possibly go low on just Metformin - in fact without insulin you'd be high.

Why doesn't your doctor believe what your meter says? You have showed it him? he may not believe you but meters don't lie that much, though they can fib slightly LOL

Why not go to your nearest A&E if it's that bad ?

 

[Silmarillion]

When I was diagnosed, my gp said type 2 diabetics can become ketotic.

I was in hospital for 2 days. The only blood tests they did we're Full blood count and urea and electrolytes.....not even a fasting blood sugar. They just gave my IV fluids and Iv antibiotics and increased my oral meds. One of the docs even told me my bloods were fine, and they hadn't even taken any bloods!

I asked my GP to test me for type 1 on the recommendation from folks on this forum....

I have showed him my meter.....he said a blood sugar of 3 mmols is better than when it was 28. He said he is Not concerned.

The nearest A and e is 20 miles away and I can't drive! I've been dOwn that route before! It got me admitted to hospital....my local hospital is terrible! I don't think a few medication side effects warrants a trip to emergency.

 

[MacG3]

Hi Silmarillion,

It's always a pain if you are at loggerheads with your GP. I have no medical training but deal with officious people day in and day out, so I can only help you with proving your case.

Written records always worry officious people, so I would start by being slightly OCD and recording your blood sugar levels on a spreadsheet. I would also cross reference this with information on your diet, eg. Register what you ate using a t-shirt size method, small, medium or large meal. I would also add a stress feeling to the results, again based on a 1 to 10 scoring. Then either print this out or take a laptop to your next appointment, and ask him to explain the readings or refer you to someone who can.

I too suffer from sweats / feeling cold etc. my diabetic nurse says this is due to nerve damage and should get better. The nerve damage (it has a posh name but I can't remember it and know I couldn't spell it!) was probably caused by getting my blood sugar levels under control quickly, it confuses your body apparently.

I wish you luck with your GP!

 

[graj0]

My doctor has put it down to my inability to deal with stress lol! I obviously can't use the word I use to describe him among polite company so I'll refrain from doing so!

My GP thinks I am making this up and that I'm getting hysterical because I'm looking at my blood sugar machine and I'm freaking out because it is low. 😡

He says he is going to test me for things, then he does not do it and repeats the results of previous blood tests or tells me he didn't intend ordering tests after he's told me he is going to do it. Last month he told me he had ordered thyroid function tests again as my result 2 months ago were borderline. He phoned me and told me the previous months result. 😡

I asked him to test me for type 1, he said he would. When he called a few days later with my HbA1c results he told me he had not. Despite me sitting watching him look up the pathology he should order....he decided not to do it....didn't bother to tell me till after the fact....and I asked him why and he said its because I fit the profile of a type 2.....I said is that because I have a BMI of 30 ie I'm fat and 45... And he laughed and said yes.😱

There are hardly any GPs in my town in Scotland...the ones in my practice are terrible, overworked, but awful. So not many options to change Gp.....or get a sensible second opinion and my quality of life is suffering.

Sorry to rant again, about the same things over and over, but I just feel like I'm getting nowhere.

Do others get problems on metformin?

I've just quoted what you said about the doctor and just as I was going to suggest new doctor I read the last bit. That must make life very difficult. I swapped a doctor who was 5 minutes walk away to one that is 15 minutes drive away and I'm over the moon with the service that I get. At least I haven't seen any signs of them saying they'll do something and then not. Some of them lump us all together as complete idiots and we're not. As a nurse I would have thought your doctor would have been more understanding. My wife's GP's attitude changed completely when he realised she had a degree in Microbiology and Biochemistry, a Masters in Biotechnology and worked as a patent attorney, perhaps he thought she might be a useful contact if he ever invented something.

I hope having a rant helps in that there are other people who "give a damn" unlike your GP, I really do hate the patronising ones who think they're god.

My early experience with Metformin was that it made my life hell, I became unable to leave the house without severe bouts of anxiety because of what I believe is called Absolute Diarrhea (i.e. it wasn't just bad, acute or chronic, it was the worst). That situation improved when I starting taking cocodomol for the many aches and pains I get. Better still when I cut the carbs and I believe the Sustained Release version is good as well.

All the best, I hope you can find a resolution, I wonder if the GP would react well to a kick up the backside?

PS I've been playing with smilies, please excuse my childishness

 

[pippaandben]

Although your nearest hospital is so far away do you know if it has a diabetes clinic. When I was first diagnosed and getting no info I went there and they agreed to see me and then got retrospective permission from GP. Because of the didstances involved I would hope they have a good telephone advice network - it's worth a try. Perhaps there are some other Glaswegians on here who could advise of sympathetic Drs. Are you on the slow release form of metformin? Many people cannot tolerate the "normal" one eg Metfartin!!

 

[Craftykathy]

You are having a bad time aren't you?
Somebody once told me that adrenalin,(released under stressful situations) is actually an anti- insulin. I was sceptical too, until recently: I've started continuous glucose monitoring, and along with a therapist attached to my diabetes team, have been examining the effect of my mood and emotions on blood sugar readings. It really is surprising to see the spikes in my sugars when I'm stressed or even mildly upset. It's a challenge on what to do about it , as predicting stress isn't an exact science, easier coped with while on a pump or MDI but oral meds must be near impossible.
Considering your deterioration in eyesight, and the signs of neuropathy (nerve damage) I'd say you've been uncontrolled for some time. I've found out the hard way as I neglected my control for many years and have suffered with both peripheral neuropathy and damage to my central nervous system too. I contracted Charcot foot and was in a cast for two years. My eyesight is rubbish and I have a constant raised pulse that means I have palpitations and am constantly chronically fatigued. Wether any of this is reversible remains to be seen, but what I'm saying is it's too important to accept second best care. Does your practice have a nurse who runs a diabetes clinic? Another doc at the practice who has a specialism? There should be no reason you can't make an appointment with another doc at the practice and explain not only your physical symptoms, but how it makes you feel too. It doesnt have to come as a complaint against your gp, but as another opinion. You could ask to be referred to the consultant endocrinologist at your main hospital, maybe find out his name before asking. If all this fails, try the diabetes uk helpline- they are the real specialists, and may be able to put you in touch with the local support group. You can give yourself and the professionals extra help by writing down everything you eat, exercise, and all your Bm readings for a controlled time, say two weeks or a month. What they look for is patterns in the results, but for you it's proof of your situation that builds your case for better care.
I really hope you get the care you deserve, I'm just sorry you have to fight so hard to get it. X

 

[Northerner]

This is incredibly frustrating for me, so I can't imagine how difficult it must be for you, especially with the role you have I wonder of the GP is treating you differently because you are a nurse, so that he is more ready to assume that 'a little knowledge is a dangerous thing', and therefore dismissing your problems? Actually, there is little doubt in my mind that it is the GP who has 'little knowledge' and is placing you at high risk of possible complications - both long-term and possible short term if the thinks a blood sugar reading in the 2s or 3s is fine

I would also recommend talking to Diabetes UK's Careline staff to see if they can help. They can be contacted at the following link:

http://www.diabetes.org.uk/How_we_help/Careline/

Also, although not sure if this is the same for Scotland, there is the PALS service:

http://www.nhs.uk/chq/Pages/1082.aspx?CategoryID=68

Please keep us updated. I do not think that the metformin is responsible for your symptoms, I think the problem is that you are not receiving the right treatment to help you to control your diabetes. It would be worth your while getting referred to a good consultant, even if you have to travel some distance - you wouldn't have to do it on a daily basis, and it should set you on the right track. Your GP would not be able to go against a consultant's recommendations, and you should then have access to telephone or email support from the clinic's DSNs. I know there are many people who have been referred to clinics well outside their area that have good reputations, rather than sticking with useless teams.

 

[Andy HB]

Well if you really had DKA and were dropping weight - then you must be Type 1 as T2 cannot get DKA - how long were you in hospital with it?

Sorry trophywench, but you are wrong on this one. Whilst it might not be full blown DKA, it is possible to go some way down that path with extreme insulin resistance.

I know, because I was there too. The sweet taste in the mouth and weight loss was something I had as well just prior to diagnosis.

Andy 🙂

 

[trophywench]

I apologise then.

But isn't that Hyperosmolar Hyperglycaemic State, what in the old days used to be labelled 'HONK' ? The initials stood for Hyper Osmolar Non Ketotic state, which is why - although it's exceedingly serious - I didn't think it could be ketotic. They changed the 'name' because the old term makes it sound trivial.

Obviously anyone can get 'dietary' ketosis (as in the Atkins diet) but that isn't life threatening like HHS or DKA are.

What was what you had called so I can educate myself ?

 

[Northerner]

According to Wikipaedia (and other sources, less concise!):

Diabetic ketoacidosis is distinguished from other diabetic emergencies by the presence of large amounts of ketones in blood and urine, and marked metabolic acidosis. Hyperosmolar hyperglycemic state (HHS, sometimes labeled "hyperosmolar non-ketotic state" or HONK) is much more common in type 2 diabetes and features increased plasma osmolarity (above 320 mosm/kg) due to profound dehydration and concentration of the blood; mild acidosis and ketonemia may occur in this state, but not to the extent observed in DKA. There is a degree of overlap between DKA and HHS, as in DKA the osmolarity may also be increased.[1]
Ketoacidosis is not always the result of diabetes. It may also result from alcohol excess and from starvation; in both states the glucose level is normal or low. Metabolic acidosis may occur in people with diabetes for other reasons, such as poisoning with ethylene glycol or paraldehyde.[1]
The American Diabetes Association categorizes DKA in adults into one of three stages of severity:[1]
Mild: blood pH mildly decreased to between 7.25 and 7.30 (normal 7.35–7.45); serum bicarbonate decreased to 15–18 mmol/l (normal above 20); the patient is alert
Moderate: pH 7.00–7.25, bicarbonate 10–15, mild drowsiness may be present
Severe: pH below 7.00, bicarbonate below 10, stupor or coma may occur

I think the last part is the important one - the pH of the blood. I have a vague memory of mine being 6.something, which was very low i.e. very acidic.

 

[trophywench]

Right ! so the question is, how low actually can a T2's bicarbonate and pH drop? as low as a T1, or what?

 

[trophywench]

Oh yeah - do the ketones actually appear in urine or blood for a T2, same as they do for T1 ?

 

[Andy HB]

Hi Trophywench,

I will slightly modify what I said earlier.

What I was suffering from was not full on DKA. However, I did experience weight loss and did have some level of ketones. What those levels were, I do not know because I was not hospitalised when they were apparent. I presume the ketones were present in the blood. I do not know whether they were present in the urine (but I guess that would be a natural way for the body to get rid of them from the blood?).

It was one specific thing that I was correcting you on. Weight loss because of high BG levels (due to insulin resistance rather than simply no insulin) is possible in T2, not just T1. However, as always, I did it inexpertly!

Andy 🙂

 

[Mark T]

Oh yeah - do the ketones actually appear in urine or blood for a T2, same as they do for T1 ?

Both, since in both cases we are homo sapiens.

But you can get Ketone's in blood/urine even without going to DKA/HONK. It I go for a lunchtime walk (especially before lunch) and keep up an appropriate pace it is easy to record some Ketones on a urine strip. Which means they must of been in my blood as some point as Ketones are removed from the blood by the Kidneys.

 

[trophywench]

Well those would be 'dietary' ketones, rather than your body malfunctioning wouldn't they, and disappear as soon as you had your lunch?

As it takes 2 hours (if you've a normal renal threshold that is) for 'high glucose induced' ketones to appear in your wee after they were in your blood, surely if it's not BG related, it has to be dietary?

Oh, I dunno Mark, my brain hurts now LOL

 

[Northerner]

Well those would be 'dietary' ketones, rather than your body malfunctioning wouldn't they, and disappear as soon as you had your lunch?

As it takes 2 hours (if you've a normal renal threshold that is) for 'high glucose induced' ketones to appear in your wee after they were in your blood, surely if it's not BG related, it has to be dietary?

Oh, I dunno Mark, my brain hurts now LOL

When I was very ill at the beginning of the year (I couldn't eat or drink anything without being sick for 3 weeks), my ketones were high - up to 6.4 blood ketones. However, I was managing to keep my blood glucose around 10-12 mmol/l using insulin corrections (I daren't correct further since I couldn't treat hypos). These appear to be high dietary ketones i.e. my body was using fat and muscle tissue for energy in the absence of food.

Whether I was actually suffering from DKA or not is unknown as they wouldn't take me into hospital. I don't think I was as most of my symptoms were related to not being able to eat or drink, but clearly I was on a bit of a knife edge. If I hadn't been able to control my levels to some extent with insulin I would definitely have ended up with DKA, I think.

Going back to the original post (!), it's worth bearing in mind that I do produce insulin, although I am Type 1 - I don't use any basal insulin. I don't have any Type 2 characteristics, such as insulin resistance, I'm just a strange sort of slow-onset Type 1.

I think that this shows how, for some, a person't diagnosis needs to be very carefully looked at, and if not understood then referred on and tested further. This is what is NOT happening for Silmarillion, unfortunately

 

[Silmarillion]

Trophy wench....here are the defining symptoms of DKA taken from diabetes uk.ie

How to recognise DKA:
High blood glucose levels: DKA is often (but not always) accompanied by high blood glucose levels. If your levels are consistently above 15mmol/l you should check for ketones.
Ketones in the blood/urine. Ketones are easily detected by a simple urine or blood test, using strips available on prescription.
Frequently passing urine
Thirst
Feeling tired and lethargic
Blurry vision
Abdominal pain, nausea, vomiting
Breathing changes (deep sighing breaths)
Smell of ketones on breath (likened to smell of pear drops)
Collapse/unconsciousness.

Let's see how I fitted in with these criteria on diagnosis......
My blood sugar was 28mmols
The keytone box on the urine strip turned black, and I had keystones on blood sugar machine
I was drinking up to 10litres of water per day and peeing large volumes of dilute urine
Felt like I had a raging thirst all the time for 2 weeks
I had blurred vision and still have it
I felt really really tired
Before I was admitted to hospital, I was SOB, shaking with a high pulse rate and I had right upper quadrant pain and I was delirious and couldn't stay awake.i got myself to the hospital before I became unconscious


If that's not DKA.....what would you suggest it is trophy wench? You can get very ill if you're a type 1 or a type 2. Honk is different from DkA.

HONK or hypersmolar non ketotic state is when you have no keytones in the urine, there may be mild metabolic acidosis, the person may vomit. The main indication is protein in the urine and the urine shows high osmololity. As a consequence of this the person might often have high sodium levels in the blood. HONK is quite a rare thing. I've only seen a small handful of cases. People are often very confused due to high sodium levels in the blood, they are often hyperglycaemic too and can become unconscious. The treatment is to rehydrate the person and treat the electrolyte imbalances and high blood sugar. People who have HONK are often very sick, and I've sent a few to ICU.

Hope this clears up the differences. Type ones generally don't get HONK symptoms. You can get either if you're a type 2 or type 1.5.

 

[Silmarillion]

I forgot to say DKA is a form of illness that can lead to metabolic acidosis. Metabolic acidosis can be caused by other illnesses such as respiratory failure or renal failure.

Keytones can also appear in the urine of any person who is ill, when they're not eating properly as they are burning their fat reserves for energy. This corrects itself once the person is eating and drinking properly. It is not usually accompanied by severe metabolic acidosis unless there is an underlying severe health problem that might cause it

 

[Silmarillion]

The latest...

The GP has now started me on thyroxine. I've also been to see the dietician, and she has referred me to the weight management team.
I'm finding it really hard to loose weight, even though I'm on a fairly draconian diet where I'm counting calories, sugar, carbs and fat etc and I am excercising heaps. My HbA1c has gone from 148 down to 51 in the space of 3 months...though I haven't lost anymore weight.

Still feeling awful mind you, though the GP won't change the diabetic meds