'It's your Diabetes.'

Sam50

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Messages
228
Type of diabetes
Don't have diabetes
Treatment type
Diet only
Hi Everyone,

I accompanied Hubby to the Doctors yesterday. He hadn't gone about his diabetes but it's funny how that's all we ended up talking about !

Hubby's diabetes was discovered last June whilst running blood tests to try and establish the cause of a virus which had inflamed his liver. It may (or may not) have been Hepatitis A. Anyway whatever the virus was it triggered nerve pain along the length of his spine and around his middle. He's been back several times to see his GP who each time insists that it is diabetic neuropathy due to having had high BG and then due to lowering it too fast.

Whilst acknowledging that the diabetes probably doesn't help, Hubby and I think that something else may be going on so had gone to the Drs to ask for a referral to a neurologist.

Typically having waited 3 weeks for an appointment, he ended up seeing a locum. A retired chap who has been doing holiday cover at our practice for years. Very pleasant, prepared to listen and doesn't rush you out the door but also very traditional. I don't think that he was impressed that the 'little woman' also came along. :)

Hubby described his nerve pain and the Dr said that there is a long list of conditions that cause neuropathy and that he couldn't really say what was causing it. I chipped it that we realised that diabetes was a complex condition but felt that you could easily hang all the symptoms on the diabetic coat hook and wanted to get to the bottom of the matter.
He asked Hubby to describe his pain which he did and then asked about the virus. So I briefly told him, adding that his back had been covered in a rash which coincidentally was where the pain had been and that the pain moves around. Beginning at the nape, travelling to shoulders then kidney area and now in his butt (!) and across the abdomen. Adding that I felt not being able to hug my husband was not a normal or acceptable part of being diabetic ! The doctor looked surprised at that.

So then he said 'well let's look and see what medication you are on.' Hubby and I exchanged smiles as I knew he was thinking 'perhaps it's a side effect'.

'Oh you are not on ANY medication ?'

Hubby cheerfully agreed saying that he only took painkillers.

The doctor looked at the computer screen and said 'why have you only had your HbA1C tested once since diagnosis-that isn't enough.?'

Hubby said that he was due an appointment and was waiting for the DN to contact him. He got told off for that and the doctor said-'no, no, no- you must make the appointment.It's the only way you will know how much you are controlling the condition.'
He then proceeded to give him the NHS lecture about how he really, really ought to be on Metformin and statins especially considering his age (he's 53) and that he just had to accept that he would need drugs for the rest of his life. Diabetes affects every organ of the body and he was at risk of heart attack and stroke etc etc etc

Hubby let him finish and remembering the advice of the forum smiled and nodded politely before informing him that he'd lost 2 stone in weight by low carbing, had got his BP down from 190/110 to 130/70 and had (in Dec) reduced his HbA1C from 12 to 7.7. He expected it to be lower still at the next blood test as he tests himself regularly at home and is getting near normal/normal readings.

The doctor by this point was glazing over and said well the weight loss will help but you are still above range and should be on medication. No neurologist will take you seriously if you go and see them as an uncontrolled diabetic.(!) Basically he was flapping because of the lack of results on the computer screen. Bearing in mind that we had asked for a private referral to the neurologist, so that we could talk to someone for more than 6 minutes, I thought that was a bit rich.

He was obviously very keen to 'do' something to end the consultation so requested 'urgent' tests HbA1C and liver tests and a few others.Hubby was offered an appointment first thing Monday morning:happy:

Unfortunately the past month hasn't been the best for BG not because of what Hubby has eaten (he's still very good) but because of work related stress and then he slipped over in the snow :facepalm:and tore his quadricep muscle-the pain hasn't helped-however an HbA1C is an average so we shall see what next week's test shows. Then the plan is to request another HbA1C 3 months after that on the one year anniversary of being diagnosed T2. If that is back in the normal/non diabetic range and the pain continues we will then insist on a referral.

When we got back from the doctors Hubby tested himself saying 'I bet this is sky high'. He was 6.8 :happy:

What really annoys me is that so many times Hubby has been told 'it's your diabetes'. If it is then I wish the NHS would just let him own it ! The only thing the practice needs to do is the one thing we can't....test the blood.

Apologies for such a long post - I will let you know how he gets on x
 

sally and james

Well-Known Member
Messages
1,093
Type of diabetes
Family member
Treatment type
Diet only
@Sam50 I note that you say that you are/were after a private appointment with a neurologist. While you will need to be referred by a GP, are you aware that there are private GP's around, who are far more likely to be obliging than the NHS ones? We have seen a GP privately for a referral in our local Nuffield hospital, but if you google it for your area, there may be others around.
It's an option, if you need it.
Sally
 
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dbr10

Well-Known Member
Messages
2,237
Type of diabetes
Treatment type
Tablets (oral)
What really annoys me is that so many times Hubby has been told 'it's your diabetes'. If it is then I wish the NHS would just let him own it ! The only thing the practice needs to do is the one thing we can't....test the blood.

He is expected to own the consequences of failing to control his diabetes; but, generally not to challenge what the doctor says, or have a say in the treatment. If he fails, it will be his fault - not the fault of the doctor for failing to treat the condition aggressively. Most, though not all, HCPs are still blinkered when it comes to a low carb diet for example; but this is changing slowly.

I write a letter to my local doctors' surgery, which I hand in to reception, and ask for one of the DNs to post out a blood test form for Hba1c, Cholesterol and the usual liver and kidney function tests. I provide a stamped addressed envelope.

This avoids me having to make an appointment to see the DN.

I tell them I am doing this to avoid wasting their time; but, actually, it is to avoid them wasting mine.
 

DavidGrahamJones

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Messages
3,263
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Type 2
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Other
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Newspapers
Has any one mentioned that it might have been Shingles?

The very first thing that came to my mind. I'm no expert obviously but I've seen the effect that it had on both my parents. Much more elderly than 53 and I wonder if being young makes a doctor think "not shingles".

My GP didn't diagnose my appendicitis because of my age, just as well she prescribed antibiotics for what she thought was a gall bladder infection, it was a burst appendix and peritonitis, not really confirmed until after surgery. Even the surgeon wasn't sure what he would find, even with a scan.
 

CL_in_NZ

Well-Known Member
Messages
86
Type of diabetes
I reversed my Type 2
Treatment type
Diet only
You are probably not going to like my response so sorry in advance.

Uncontrolled diabetes does cause nerve damage so I can see why he is concerned about that as a cause. GPs hear a lot about good intentions but without data they take it with a grain of salt and he doesn't have the data. Sounds like your husband has made great progress but his last hba1c levels are still too high and he needs to get them down.
 
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NoCrbs4Me

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3,700
Type of diabetes
I reversed my Type 2
Treatment type
Other
Dislikes
Vegetables
but his last hba1c levels are still too high and he needs to get them down.
I think the verdict is still out on whether he has reduced his HbA1c from the last result of 7.7. As the wife stated - they expect it will have gone down on the next test, so it looks like he is aiming to reduce it further and you're not telling them something they didn't already know.
 
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CL_in_NZ

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Messages
86
Type of diabetes
I reversed my Type 2
Treatment type
Diet only
I think the verdict is still out on whether he has reduced his HbA1c from the last result of 7.7. As the wife stated - they expect it will have gone down on the next test, so it looks like he is aiming to reduce it further and you're not telling them something they didn't already know.

It may well have dropped (hope it has!) but from the GPs standpoint he can't see that without the test results so I can see why the GP is responding as he is.
 

Guzzler

Master
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10,577
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Poor grammar, bullying and drunks.
I am in agreement with the OP here. We, as pwD, should never assume that a new symptom automatically fits in with an existing condition and neither should a GP. This is a surefire route to missing an as yet undiagnosed condition.
 
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BrianTheElder

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Messages
574
Type of diabetes
Type 2
Treatment type
Diet only
Dislikes
Snide people
Has any one mentioned that it might have been Shingles? A rash, a virus type illness and residual nerve pain sounds just like shingles to me.
Good call @Rachox I had a similar problem about 2 years ago and as a result had lots of heart tests (the nagging pain and pins and needles in my left shoulder set off the alarm bells). After about 6 months and getting the all clear on my heart, I developed a shingles rash on my back! This after having had a shingles jab 6 months earlier (I am 74). I also had shingles 3 times as a child - the myths about shingles are legion. I still get pains in my left shoulder which I put down to old age.
 
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Sam50

Well-Known Member
Messages
228
Type of diabetes
Don't have diabetes
Treatment type
Diet only
Has any one mentioned that it might have been Shingles? A rash, a virus type illness and residual nerve pain sounds just like shingles to me.
Hi Rachox- the consultant that Hubby saw last summer for a liver scan thought that it sounded like shingles so Hubby went back to see his GP. GP said 'that's not a shingles rash and shingles pain follows a particular nerve pathway and doesn't move from place to place.' So he ruled it out but then some people get shingles without the rash so who knows ?
 

Sam50

Well-Known Member
Messages
228
Type of diabetes
Don't have diabetes
Treatment type
Diet only
@Sam50 I note that you say that you are/were after a private appointment with a neurologist. While you will need to be referred by a GP, are you aware that there are private GP's around, who are far more likely to be obliging than the NHS ones? We have seen a GP privately for a referral in our local Nuffield hospital, but if you google it for your area, there may be others around.
It's an option, if you need it.
Sally
Thanks Sally- no I didn't know that was an option so I will bear it in mind if we need it. x
 

Sam50

Well-Known Member
Messages
228
Type of diabetes
Don't have diabetes
Treatment type
Diet only
He is expected to own the consequences of failing to control his diabetes; but, generally not to challenge what the doctor says, or have a say in the treatment. If he fails, it will be his fault - not the fault of the doctor for failing to treat the condition aggressively. Most, though not all, HCPs are still blinkered when it comes to a low carb diet for example; but this is changing slowly.

I write a letter to my local doctors' surgery, which I hand in to reception, and ask for one of the DNs to post out a blood test form for Hba1c, Cholesterol and the usual liver and kidney function tests. I provide a stamped addressed envelope.

This avoids me having to make an appointment to see the DN.

I tell them I am doing this to avoid wasting their time; but, actually, it is to avoid them wasting mine.
I like the idea of getting the DN to post the test results out :) I did mention to Hubby that he could ask to collect the print outs, especially as he is keen to know the results before we go on hols at the end of the month and not especially keen to see the DN.....
 

Sam50

Well-Known Member
Messages
228
Type of diabetes
Don't have diabetes
Treatment type
Diet only
The very first thing that came to my mind. I'm no expert obviously but I've seen the effect that it had on both my parents. Much more elderly than 53 and I wonder if being young makes a doctor think "not shingles".

My GP didn't diagnose my appendicitis because of my age, just as well she prescribed antibiotics for what she thought was a gall bladder infection, it was a burst appendix and peritonitis, not really confirmed until after surgery. Even the surgeon wasn't sure what he would find, even with a scan.
oh my gosh missing appendicitis is awful :eek: that could have been dire consequences for you. Although Hubby and I have thought that the viral type illness could well have been Hepatitis A, I'm not sure that leaves residual nerve pain ? (as I'm not a doctor) and ever since I learnt that some people have shingles without the rash (even harder to diagnose) I haven't been convinced by the doctor saying it wasn't.

Not everyone has illness by the textbook !

Hubby's GP although a very pleasant chap doesn't fill me with confidence. He was also our neighbour's GP and she had gallstones. He reassuringly told her that the NHS policy for this was 'watchful monitoring' (or maybe that was passive ignoring) two years down the line she had a nasty gall bladder infection. She was rushed into hospital where they found the gallbladder had turned cancerous and she died a few months later.

Which is why I always question everything. Doctors are only human after all.:)
 

Sam50

Well-Known Member
Messages
228
Type of diabetes
Don't have diabetes
Treatment type
Diet only
You are probably not going to like my response so sorry in advance.

Uncontrolled diabetes does cause nerve damage so I can see why he is concerned about that as a cause. GPs hear a lot about good intentions but without data they take it with a grain of salt and he doesn't have the data. Sounds like your husband has made great progress but his last hba1c levels are still too high and he needs to get them down.
No offence taken :) both Hubby and I are aware of the consequences of uncontrolled diabetes and like many T2s he had probably been that way for a while before being made aware of the situation. Certainly as his BG started coming down, his eyesight improved.

I do appreciate that GPs can only work from the data in front of them. I had been under the impression that Hubby would have his HbA1C tested 3 monthly but this hasn't happened so I can see why the doctor expected to see more results.

Since last summer Hubby and I have learnt a huge amount about diabetes and how to treat the condition and I have read everything I could get my hands on concerning diabetic neuropathy. Almost without exception it talks about peripheral neuropathy in the fingers/toes which can progress to hands/feet and limbs if untreated. Hubby has been to the foot clinic and been checked out-all okay there and we know the importance of looking after feet.

I've yet to come across any reference to diabetic neuropathy manifesting after a fever and beginning with stabbing pains in the abdomen/side and spreading around the torso, ending with pain in the backside which feels like it's been sandpapered (sorry if thats' TMI !)

It's a mystery but one we are determined to resolve :)
 
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Alexandra100

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Messages
3,742
Type of diabetes
Prediabetes
Treatment type
Tablets (oral)
I like the idea of getting the DN to post the test results out :) I did mention to Hubby that he could ask to collect the print outs, especially as he is keen to know the results before we go on hols at the end of the month and not especially keen to see the DN.....
You can register at the surgery to get your results online. My GP practice uses System Online, but I gather there are others. I find this brilliant, as not only do I get my results very quickly and without intermediary, but also I can book appointments and order repeat prescriptions. It is also possible to check previous test results. Highly recommended!
 
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Sam50

Well-Known Member
Messages
228
Type of diabetes
Don't have diabetes
Treatment type
Diet only
You can register at the surgery to get your results online. My GP practice uses System Online, but I gather there are others. I find this brilliant, as not only do I get my results very quickly and without intermediary, but also I can book appointments and order repeat prescriptions. It is also possible to check previous test results. Highly recommended!
Unfortunately our surgery only allow limited online access- you can book appointments and request repeat prescriptions but not access your own test results. (they prefer face to face meetings to explain results)....
 

Alexandra100

Well-Known Member
Messages
3,742
Type of diabetes
Prediabetes
Treatment type
Tablets (oral)
the NHS lecture about how he really, really ought to be on Metformin and statins especially considering his age (he's 53)
I totally get why your husband would refuse statins, as they can raise bg and cause other problems too. I have done the same. However Metformin is considered a very safe drug with minimal side effects beyond possible digestive upset, which can usually be minimised by starting on a very low dose and increasing very gradually. Personally, I fought very hard to be allowed to take it. Raised bg is known to be extremely harmful, even if it may not be the culprit for many of your husband's problems. If taking a very well-tested and benign drug can help lower bg, even by a little, why on earth not?
 

Alexandra100

Well-Known Member
Messages
3,742
Type of diabetes
Prediabetes
Treatment type
Tablets (oral)
Unfortunately our surgery only allow limited online access- you can book appointments and request repeat prescriptions but not access your own test results. (they prefer face to face meetings to explain results)....
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