Type 2 Needs help

[stillo]

Good Morning

I have now had uncontrolled Type 2 Diabetes for nearly 2 Years my GP on Thursday of last week refused to send me to see an endocrinologist and i don't know what to do, i am currently taking Sitagliptin and Gliclazide although the Gliclazide is not at the maximum dosage it has done absolutely nothing at all, i cannot take metformin due to it causing me severe stomach issues.

Since taking this medication my blood sugar levels have not moved at all and remain the same as they originally were although not as high as most on these forums it is enough to worry me due to uncontrolled stage 3 hypertension and high cholesterol levels i also suffer from, i don't sleep very well and i have taken to testing my levels around 2.30 3.00 in the morning and i have never had them below 12.9 that is at least 2 above my level when going to bed around 11.00pm and 5 Hours after last eating or drinking anything at all, i have at one point had them around 16 to 21 and my GP still did not seem to concerned but at that time i was severely sleep deprived.

Can anyone please offer any advise? please don't say go back to Dr and complain i have tried that before and it does not work and by the way i have reduced the amount i eat by over 60% per day i now only eat at 7 pm every day and nothing more due to massive amount of weight gain i have suffered from, i am not complaining if there is nothing i can do then so be it but members of my family on my Mothers side have all died relatively young and i am now 50 years old and i don't want to go the same way.

Cheers
Stillo

 

[mo1905]

Sounds like your only course of action now is to register at a different surgery ? Sorry you're having such a bad time with your current doctor. It seems as though he is not handling your diabetes at all. Hope things work out.

 

[Pilgrim22]

You could present yourself at A &E every time your levels are in the high teens. GP's hate this, and might shame him/her into refering you. Or the hospital might refer you automatly.



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[vicky_l]

Hi Stillo

sounds horrible

going to ask you a very basic question (sorry I dont mean to patronize you just though check basics first)

what is your average daily intake of food like? as in what are you eating? maybe could help with tweaking there

agree with others too though change gp and or go A & E if viable

Vicky_l

 

[Daibell]

Hi. What was your last HBa1C test result? You might want to have a look at the NICE Diabetes Pathway guidelines on the web (Google it) as these give GPs the blood sugar range for each level of treatment. If Sitagliptin and Gliclazide aren't working and if your diet is low carb then I'm afraid the only next solution is insulin which NICE says should be implemented with an HBa1C above 7.5%. I've just started insulin with an HBa1C of 8.3 and with the three tablets I'm on not working any more. At first I had to persuade my GP to start insulin but finally she realised it was the only next best move and it has made a tremendous difference and not a problem. If you are overweight then I would suggest you must look at the content of the meals you do have and ensure they are low-carb and low-GI etc. I know it's not easy as my wife puts on weight drinking water! How old are you? I assume you tried Metformin SR, the Slow Release version?

 

[staycalm&hopeful]

Hi stillo :wave:
sorry to hear you are having it rough,but iagree also with the others .if your gp is not doing the best FOR YOU!something needs to change,after all he gets paid for it : i wish you all the best. DEBS

 

[hanadr]

You could try calling the Diabetes UK Careline. Their number is on their website. Sometimes they REALLY CAN help.
In the meantime, take charge of those blood sugars yourself. Get a meter, if you don't already have one and cut back hard on the carbs there's advice on this board on how to do it. "Advice to newly diagnosed"
You doctor hads a duty of care and on what you have said isn't carrying it out, however, I don't know the full history, so I can't guess any reasons By the way, if you do cut back on carbs, monitor your BG carefully, and watch out for gliclazide. It CAN cause hypos, so if you find your blood glucose too low, reduce your dose.
Hana

 

[daisy1]

Hi Stillo and welcome to the forum

This is the information which Hana just mentioned which we give to new members and I think you will find it helpful.


BASIC INFORMATION FOR NEWLY DIAGNOSED DIABETICS

Diabetes is the general term to describe people who have blood that is sweeter than normal. A number of different types of diabetes exist.

A diagnosis of diabetes tends to be a big shock for most of us. It’s far from the end of the world though and on this forum you’ll find well over 30,000 people who are demonstrating this.

On the forum we have found that with the number of new people being diagnosed with diabetes each day, sometimes the NHS is not being able to give all the advice it would perhaps like to deliver - particularly with regards to people with type 2 diabetes.

The role of carbohydrate

Carbohydrates are a factor in diabetes because they ultimately break down into sugar (glucose) within our blood. We then need enough insulin to either convert the blood sugar into energy for our body, or to store the blood sugar as body fat.

If the amount of carbohydrate we take in is more than our body’s own (or injected) insulin can cope with, then our blood sugar will rise.

The bad news

Research indicates that raised blood sugar levels over a period of years can lead to organ damage, commonly referred to as diabetic complications.

The good news

People on the forum here have shown that there is plenty of opportunity to keep blood sugar levels from going too high. It’s a daily task but it’s within our reach and it’s well worth the effort.

Controlling your carbs

The info below is primarily aimed at people with type 2 diabetes, however, it may also be of benefit for other types of diabetes as well.
There are two approaches to controlling your carbs:

• Reduce your carbohydrate intake
• Choose ‘better’ carbohydrates

Reduce your carbohydrates

A large number of people on this forum have chosen to reduce the amount of carbohydrates they eat as they have found this to be an effective way of improving (lowering) their blood sugar levels.

The carbohydrates which tend to have the most pronounced effect on blood sugar levels tend to be starchy carbohydrates such as rice, pasta, bread, potatoes and similar root vegetables, flour based products (pastry, cakes, biscuits, battered food etc) and certain fruits.

Choosing better carbohydrates

Another option is to replace ‘white carbohydrates’ (such as white bread, white rice, white flour etc) with whole grain varieties. The idea behind having whole grain varieties is that the carbohydrates get broken down slower than the white varieties –and these are said to have a lower glycaemic index.
http://www.diabetes.co.uk/food/diabetes ... rains.html

The low glycaemic index diet is often favoured by healthcare professionals but some people with diabetes find that low GI does not help their blood sugar enough and may wish to cut out these foods altogether.

Read more on carbohydrates and diabetes

Eating what works for you

Different people respond differently to different types of food. What works for one person may not work so well for another. The best way to see which foods are working for you is to test your blood sugar with a glucose meter.

To be able to see what effect a particular type of food or meal has on your blood sugar is to do a test before the meal and then test after the meal. A test 2 hours after the meal gives a good idea of how your body has reacted to the meal.

The blood sugar ranges recommended by NICE are as follows:

Blood glucose ranges for type 2 diabetes

• Before meals: 4 to 7 mmol/l
• 2 hours after meals: under 8.5 mmol/l

Blood glucose ranges for type 1 diabetes (adults)

• Before meals: 4 to 7 mmol/l
• 2 hours after meals: under 9 mmol/l

Blood glucose ranges for type 1 diabetes (children)

• Before meals: 4 to 8 mmol/l
• 2 hours after meals: under 10 mmol/l

However, those that are able to, may wish to keep blood sugar levels below the NICE after meal targets.

Access to blood glucose test strips
The NICE guidelines suggest that people newly diagnosed with type 2 diabetes should be offered:

• structured education to every person and/or their carer at and around the time of diagnosis, with annual reinforcement and review
• self-monitoring of plasma glucose to a person newly diagnosed with type 2 diabetes only as an integral part of his or her self-management education

Therefore both structured education and self-monitoring of blood glucose should be offered to people with type 2 diabetes. Read more on getting access to blood glucose testing supplies.

You may also be interested to read questions to ask at a diabetic clinic

Note: This post has been edited from Sue/Ken's post to include up to date information.

 

[stillo]

Hello All

Thank you for taking the time to reply to my request for help unfortunately i have done everything that has been suggested by everyone i have stopped eating breakfast and lunch and i now only eat dinner at about 7 pm so i eat once every 24 hours carbs are severely reduced to practically zero, i know i will be told to eat more and eat some carbs i have done this and it makes no difference whatsoever, please do not suggest exercise,due to a visual problem i cannot drive so i cycle and walk everywhere.

My latest HAb1c was 9.1 im due to have another test in June, once again thank you all for your reply's

Cheers
Stillo

 

[Sharon68]

Hi Stillo

I really am no expert but I would say your body is going into shock by only eating once a day and hence your BGs are all over the place and are trying to compensate for the lack of food. I do appreciate you want to low carb but you can still do this and have three meals a day (there is some fantastic advice in the diet section) Weight is a 'huge' problem for me too but it is going slowly.

I am so sorry to hear how unsupportive your Doctor is, as others have said, it sounds like its time for a change. Its a bit of a hassle but you really need to have a Doc and/or diabetes nurse you can turn to for help.

Take care Stillo, stay strong :thumbup:

 

[Daibell]

Hi. With an HBa1c of 9.5% your GP MUST do something if it doesn't radically reduce at the next test. Also, I believe at that level your GP should be doing 3-monthly HBa1C tests. You may need to remind the GP of the NICE guidelines and insist they are used to guide treatment if your HBa1C remains high

 

[stillo]

Hi Sharon 68

I agree i cannot continue eating so little but unfortunately if i eat anymore i will gain weight overnight and that is not going to happen, the Gliclazide i am told will make me gain weight so eating nothing will counteract that i hope, i will not eat anymore regardless of how bad it is, i have at one point eaten 3 low carb meals per day and i have noticed no blood sugar changes or weight loss at all, unfortunately for me i think i will have to put up with high levels of everything and hope for the best

Cheers
Stillo

 

[barbara65]

Could you not eat your dinner a lot earlier say about 5pm as eating that late will not help with weight loss and eat a bit of breakfast you will burn that off in the day

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[Lenny3]

I understand your weight worries, however only eating once a day is bad for you. Your body will go into starvation mode and hang on to any fat you have to fuel your body. Also as a diabetic if you do not eat your body will produce extra glucose to again fuel your body.

You would be better of having 3 low carb meals a day, when your body realised there is regular fuel coming in your BG levels should get better and hopefully you will lose weight too.

Im no doctor however I started a low carb diet last summer and eat 3 meals a day, several snacks a day and don't do enough exercise however I lost 3 stone.

Whatever you decide to do, eating only once a day (IMHO) is not good for anyone.

 

[blackcat79]

Hi
I feel ur pain. I too struggle with eating 3 meals a day even with at 10g carbs my BS goes up. Im on 3 different meds. I finally got my GP to referre me to DN clinic n have had tests done to see what type i am got review on Friday. Although i have a BMI of 32 i dont look over weight n have lost 1st since xmas yet BS still high. Was told to up my carbs to 130-200g a day but it really sends BS up! Had 45g for lunch in a wrap made with meat n salad homemade n BS 2 hrs after was 20.4!!! Highest ive bn in awhile as my highest lately had bn 18.4. The only time i get below 10 is when at work n fony eat for 4/5 hrs n even then rarely go below 7 :-( . I no i need to loss more weight n go to the gym but they have made me feel bad about the way i look n feel fat when im not really. I hate this as im sure u do to! Big hugs to u n take care
Sue
Xx

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[toomanyairmiles]

Stillo, this is awful.

As everyone else has said, you must change your doctor, whomever this GP is has utterly failed you. Please do not feel like you have failed them

I could not tolerate Gliclazide or Metformin but did some research and forced my GP to prescribe Diamicron SR and Glucophage MR, which are slow release versions of the same drugs. These resolved my gastric symptoms and have been very successful for in regulating blood sugar since.

Brand drugs also have a lower allergenic profile than generic versions of the same, because the parts of the pill that are not the drug itself vary between manufacturer. I don't get on well with the knock-off versions of Glucophage so stick to the brand (pharmacists are a brilliant source of information and it's much more useful talking to them about drug side-effects than GP's who mostly only know what the prescription guidelines and treatment protocols say).

There are also medications like Victoza and Bayetta which are designed for acute patients with weight issues. I'm going to give Victoza another try and also take a course of Orlastat which is a weight loss drug as I'm struggling to lose more weight that I already have.

Ultimately you need better advice and you can't carry on the way you are, the way you are eating is probably doing as much damage as the high HBA1C.

Option 1:
GP's are not the only people who can refer you to an Endocrinologist on the NHS. The community based specialist diabetic nursing teams have the power to do this too, and you can self refer to those teams as I had to. http://www.leedscommunityhealthcare.nhs ... s_service/ inconviniently they don't have contact information on their website.

Option 2:
Most large hospitals have specialist diabetes units with multi-disciplinary team. These units were created for acute patients like yourself and you can self refer to them. Your profile says you're Leeds based and Leeds general has such a unit, call them and ask to speak to a specialist diabetes nurse and explain your situation. They should have immediate access to an Endocrinologist and the ability to help you directly without your doctor getting in the way. http://www.leedsth.nhs.uk/services/diab ... crinology/

You can call the centre's managers Claire Lee and Carol Parmar on 0113 206 5068 they should help you find a nurse.

Option 3:
If you can afford it find a private Endocrinologist who also works in the NHS (in London this costs £150 - £225 per visit, less elsewhere, and you should only need one). GP's will do anything consultants tell them to and NHS consultants who work privately can put you on their NHS lists or direct other NHS resources to help you. Simply call the consultant's secretary and make an appointment.

If you want to see a specific doctor at a specific hospital then take that information with you and ask the private consultant to write a letter for you.

A little Googling shows Dr Stephen Gilbey working at the Spire Hospital and also St James University Hospital. http://www.spirehealthcare.com/Leeds/Ou ... en-Gilbey/

I've found private to be very helpful, but I'm lucky in that I have BUPA cover through the business I own. I now pay for bi-annual check-ups myself.

If you go this route make sure that you ask for blood tests (usually £40 - 60 a go) to be done before your first visit or you will need a follow up consultation to review the results. Make it clear to the consultant that you are self funding and need to be careful with costs and explain the entire situation and previous treatment in an email before the appointment as this will save a lot of time in the initial consultation.

Option 4
Private GP's are relatively cheap compared to consultants, around £50 per visit. They can also write to NHS teams and doctors requesting you be seen - this would be slower time-wise and carry less weight than a consultant's letter but will work and it's also more affordable.

----------------

I really hope this helps you out. If none of it works then hit the nuclear option and email the Chief Exec and Chairman of the Leeds NHS board don't bother with PAL's they're useless (and complaints to PAL's are not formal complaints). Their email pattern is [email protected] so the relavent addresses according to this page http://www.leeds.nhs.uk/About-us/Our-Bo ... -Board.htm should be [email protected] and [email protected].

If that doesn't work (believe me it will, fire's get lit when the CEO gets complaint emails) you can escalte to the Parlimentary and Health Service Ombudsman http://www.ombudsman.org.uk/

 

[stillo]

Toomanyairmiles

Thank you for all that information i will follow up on it, i am now suffering from freezing cold feet and i cannot get them warm no matter what i do they are that cold they are actually painful, i am not working tomorrow so i will be going through your advice and making a decision as to what to do next, thank you everybody it really is appreciated

Stillo

 

[DaveNN]

Stillo,Hi...
It sounds to a mere novice that your single meal a day regime is not helping at all, coupled to the relatively late evening meal.
I never really believed that you have to eat to lose weight ( afterall, there wasn't many fatties who built the bridge ON the River Kwai) but it does seem to be true.
Oh...I'm not suggesting that you are overweight or a bridge builder either... We are all on your side!
My own weight loss stalled, as my calories input plummeted.
I'm now losing about a lb a week...which is next to nothing...but it should mean that I don't rebound...and I'm eating 3 good meals a day.

I would suggest a small breakfast, lunch and dinner ( no later than 5.30pm) with a BREAK FAST some 12 to 14 hours after your evening meal.

Your doctor appears to be sadly lacking...and I wish you luck on this score.




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