# New to the forum



## HelenHanfe (Aug 28, 2013)

Hello all.  I've been Type 2 for just over 2 years. The first year was a lot to take in, with all the information given to me, by different people - doctors, nurses, DESMOND, optician, books, etc.   

Have started to struggle in last six months, with all sorts of ailments and every time I see someone else, I get different reactions / advice and am feeling a little overwhealmed by it all.  Hoping I can get some information / advice here, from people in the same boat.  Have a glut of appointments coming up for annual review and was hoping to test the waters here first, to see what advice offered, so I can take up with doctors / nurses, when I see them.  

Any input on immiment posts would be very welcome !


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## pav (Aug 28, 2013)

Hi Helen welcome to the forum.

Do you have a meter and test strips? This can be a problem with us type 2's in getting the strips on prescription depending on your post code.

The meter can help identify which foods effect you in what way.

What sort of aliments are you suffering from as some can be diabetes related while others are just normal to every one though can hit us more frequently.

Are you on any meds or just diet controlled? 

My annual round up of appointments are due to start shortly, Hospital eye test, Annual Diabetic review including blood tests, foot screening / nerve damage review, Already seen normal optician twice and had 2 lens changes, think I have had 4 HbA1c tests this year so far, and several med changes.


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## Northerner (Aug 28, 2013)

Hi Helen, welcome to the forum  Pav has asked all the questions I was going to ask, so I won't repeat them!  The more we know of your situation, the better we will be able to make suggestions.


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## Mark T (Aug 28, 2013)

Welcome to the forum HelenHanfe


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## HelenHanfe (Aug 30, 2013)

Thanks for the response/s !

Basically, once diagnosed, had multiple appointments with nurses / doctors / opticians / DESMOND, in first year. So am coming up on second annual review, as it were.  Currently on Metformin - having originally been told by one doctor to take all at once, told by another to take twice a day, which agrees with me (my stomach!) more. 

The last six months I seem to have various problems, with my legs, repeated thrush, believe now frozen shoulder and general joint pain.  Plus, possible high blood pressure, but have waited nearly 3 months to be able to have a 24hr monitor fitted (next week), to determine that, as the surgery only has the one machine.....!

I went to my regular optician for an annual check up and he asked about my levels....?  I said what levels ?  He then tore me off a strip because I wasn't taking readings.  I said no one, in all the appointments I had had, said I needed to take readings.  I belived that this was just for Type 1. He really was insistent about it, so I went and bought a machine.   When I saw the doctor next, she said as I was on Metformin, I didn't need to take readings - she refused, point blank, to put the strips on my repeat presciption and told me to return the machine. 

I had opened it, so couldn't return, but as she refused point blank to discuss it, so whilst I could take a reading, I don't know when I should, or what would be a good reading ? 

So far, I've lost 4 stone in weight - yet I feel more unwell than I did before !  As I say, each time I see someone, I get conflicting information. The repeated thrush would indicate to me, that I'm not controlling things very well, but when I raised that, my doctor said I would suffer more because of the sugar, etc., but as I'm on Metformin, nothing to panic about.   Possibly no need to panic, but it is very unpleasant and anything I can do to reduce the frequency of that or relieve this and other symptoms, would help me !

At my last appointment with a doctor (regular one not available), she said she didn't have time to discuss the condition in general - I was asking about the frozen shoulder, as I was in consdierable pain - but she said she didn't have time. 

So, I am feeling a little overwhelmed.   I have lost a fair amount of weight (though still a lot to go) and am on medication, but I feel up against it....which has led me here...   Without sounding dramatic and all 'woe is me', it's dragging me down.  

If I were to start taking readings, how often do you do it - remembering, my doctor refusing to put on prescription, so I'd had to pay for the strips - and when ?  And what would be a good reading ?  Or a bad one ?  Does the Metformin have any say in the readings....or is that purely down to me to work out, food wise, what is good / bad and try and control the readings that way ?  What do I do if I get a bad reading ? 

Sorry I've rambled on...but I'm trying to take control of this, rather than 'it' control me...and in the absence of a doctor who is willing / has the time to discuss it, thought I could find some helpful advice here.

So, I have my BP monitor thing coming up (not sure if related to diabetes?), fasting blood test early next week, then to the diabetic nurse week after to review results & have the foot thing / general review, etc.  Paula Carr appointment soon - and back to the dietician end of September.   So all coming thick & fast.  

Thank you so much for any input / advice


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## Northerner (Aug 30, 2013)

Helen, I am appalled at the level of care you have been receiving  This is nonsense about you not needing to test, it is probably the most helpful and informative thing you can do in order to understand your diabetes and get your levels under control. Has the doctor taken a test when you have complained about thrush and feeling bad?

I would suggest reading the following, which are all widely recommended by our members others all across the diabetes community:

Jennifer's Advice and Maggie Davey's letter

Test,Review, Adjust by Alan S  - for a good guide to efficient testing

Type 2 Diabetes: The First Year by Gretchen Becker - a highly respected book for all people trying to understand what diabetes means and how to deal with it.

The reluctance to prescribe strips, whatever the reasons they may give, are almost always purely financial. My advice is to follow the testing advice above and keep a record of your readings. Don't be put off by the readings you see, as they are likely to be above range, but you are welcome to report them here so that we can tell you what they mean and what actions you may wish to take. If your strips are expensive, you might want to get an SD Codefree Meter which has test strips that are around ?7 for 50, much cheaper than most.

Please ask any questions you may have and hopefully we can help you get things under control which will make you feel a whole lot better! 

p.s. well done on your excellent weight loss!


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## HelenHanfe (Aug 30, 2013)

Hi Northener, thanks for the prompt and detailed reply.

No, the doctor has never taken a test / reading, when I've been to see her. When I mentioned the repeated thrush, she simply put the relevant pill to 'cure' it, on repeat prescription and suggested some yoghurt, which might help.  I have seen her twice and mentioned the optician and his insistence that I should test - but same answer...'you're on Metformin, you don't need to test'.  I have only had the blood / urine tests done when diagnosed and the first annual review last year...so my third blood test coming up next week.  So I have two HBA1C readings with a third coming up but I'm not optimistc. 

Thanks for the suggested reading material - I'll go through that and come back, if I have any questions.  Already, feel brighter, in that people have responded and have made suggestions, which might help.   

Regarding the strips, can I insist, in any way, to get them on prescription ? Appreciate the financial aspect...but do you think there is any way I could convince the doctor?  If I tested for a while myself and whatever the figures, got them down, do you think if I went back and said how helpful (hopefully!) it has been, could she put them on repeat ?  I just feel so in the dark here.

And thank you - I'm quite pleased, although it never seems enough ! The dietician keeps on 'more, more, more!' but it's not easy...but I am determined to keep going....


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## Northerner (Aug 30, 2013)

HelenHanfe said:


> Regarding the strips, can I insist, in any way, to get them on prescription ? Appreciate the financial aspect...but do you think there is any way I could convince the doctor?  If I tested for a while myself and whatever the figures, got them down, do you think if I went back and said how helpful (hopefully!) it has been, could she put them on repeat ?  I just feel so in the dark here....



This is a strategy which has worked for some of our members in the past. It really is a postcode lottery regarding the strips, and some GPs are more enlightened than others. Some believe some (largely discredited) research that suggests people who test when they are not on medication that could cause low blood sugars will become anxious and possibly depressed by the numbers they see. This attitude, however, totally fails to take account of the fact that some people (yourself amongst them, I believe) are more anxious about being left in the dark and feeling they have no control. Motivated people should ALWAYS be provided with the means and education to self-monitor. It is very much a false economy because the potential consequences of poorly-controlled diabetes are far more expensive that the short-term costs of starting people off on the right footing.

Each case should be decided on an individual basis, as a partnership between doctor and patient, there should be no blanket ban on prescribing strips. Unfortunately, official guidelines are weak in supporting what should be a standard route, stressing that testing is only required for people on insulin or other glucose-lowering medications.

But it is certainly worth a try to follow a good testing program and present your findings. You may need to be firm and persistent, but many of our members have succeeded in getting at least some strips prescribed, if only in the short term. You need to explore your own tolerances to aspects of your diet, so that you can replace or reduce things that you tolerate poorly, and retain things you tolerate well. This gives you the greatest flexibility in your diet and therefore enhances your quality of life. Having a 3 monthly test and being told you are not doing well enough is pointless if you don't know what you might be doing wrong! 

You may be interested in looking into the GL Diet as a means of selecting and combining food that will help with your blood sugar control - The GL Diet for Dummies is a good introduction


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## pav (Aug 30, 2013)

Hi Helen, unfortunately being on metformin alone is a common doctors get out clause for not giving test strips out on prescription, and is very much a post code lottery.

The SD code free system as far as I know is one of the cheapest test strip options, if you want to buy your own test strips.

Its not so much of a concern that you are going low with metformin (can happen), I would be more concerned how high you are going, and from some of the things going on with you I would take a guess and your readings will be high.

For me the best times to test are on waking / getting up as that gives me the starting point for the day. Then 2 hours after breakfast followed by tests before a meal then 2 hours after a meal.

This way you can see which meals are causing the most problems, though could be all meals. If you have any strips left try it before and after tea and post your readings.

If you are also eating white bread, I would suggest switching to wholemeal or some prefer one of the versions of Bergen bread (not to my taste). White bread and other food made from white flour causes problems for most diabetics.

The next one might or not be possible, change you GP, if this is an option ask around to see what others think of their GP, preferably ask other diabetics what their treatment is like.

The upper NICE guide lines say your sugar levels should be below 8.5 2 hours after eating, others on here have a lower upper level. The before meal level I think should be between 4.0 and 7.2, NICE guide lines.


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## HelenHanfe (Aug 30, 2013)

Thanks Northener / Pav, this is most informative.

I am anxious about not testing - not just because of my opticians comments / shock at my not testing, but because with my various ailments, I don't feel I / my body is managing it well, despite the Metformin.  I thought if I knew the numbers, presuming they will be high, I could work to get them down - currently, I have no idea what's going on.

Thanks for more suggested reading about the GL diet. 

I do eat wholemeal bread and am following recommended amounts / types of food, per all the blurb I've been given - but I do struggle.  I'm vegetarian - no meat, fish or poultry, at all - so I do find the options limited. Also, what works for me via Weightwatchers, doesn't make the dietician happy, so I do struggle trying to stick to what is a very bland / repetitive diet, with little room for change...but I thought best to lose the weight first, as this will be better for the diabetes, etc., so I'm persevering, but it is hard to stay motivated.  

Thank you so much for the advice - I'm going to go and get some strips tomorrow and start testing.  Assuming I do this every day, until week after next when I see the diabetic nurse for my review, is it worth my taking all the readings, to show her ?   It'll be 10 days worth, with my fasting in the middle, for the blood test. What do you think ?  

As regards changing a GP, I'm on my third, in the last 2 years, due to changes at the surgery.  Not sure moving to a 4th would be good or bad at this stage.... ! 

I really appreciate the time you've taken - thank you so much !


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## Northerner (Aug 30, 2013)

HelenHanfe said:


> I do eat wholemeal bread and am following recommended amounts / types of food, per all the blurb I've been given - but I do struggle.  I'm vegetarian - no meat, fish or poultry, at all - so I do find the options limited. Also, what works for me via Weightwatchers, doesn't make the dietician happy, so I do struggle trying to stick to what is a very bland / repetitive diet, with little room for change...but I thought best to lose the weight first, as this will be better for the diabetes, etc., so I'm persevering, but it is hard to stay motivated.
> 
> Thank you so much for the advice - I'm going to go and get some strips tomorrow and start testing.  Assuming I do this every day, until week after next when I see the diabetic nurse for my review, is it worth my taking all the readings, to show her ?   It'll be 10 days worth, with my fasting in the middle, for the blood test. What do you think ?



A lot of the standard dietary advice is rather outdated I'm afraid, so perhpas this is what is making your dietician object. Diabetes is all to do with carbohydrate consumption, since this is what will raise your blood sugar levels the most. How quickly it raises them is down to something called GI/GL (Glycaemic Index/Glycaemic Load), where different foods release their energy at different rates.

This is where testing is very important though - you need to know how you personally react to eating, for example, a slice of wholemeal bread. It may be considered 'healthy', but if it raises your levels too much and too quickly, then it is something you need to avoid. It all sounds very complicated at first, but it is surprising how quickly you can build up experience of what suits you best  Bland and repetitive is fine for now, since it will remove a lot of the variables and simplify things for you whilst you get used to things.

It would certainly be a good idea to write down all your results and show them to the nurse - even better if you can record what you ate including the amount of carbohydrate in the meal alongside the before and after readings. This will show you understand what is involved, and quite possibly be a revelation to your nurse if she is not used to people being so proactive with their personal care! Don't let her dismiss the numbers, or listen to any complaints she may have that you shouldn't be testing - it's like telling someone to drive a car with the windows blacked out!


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## HelenHanfe (Sep 10, 2013)

Just to report back....went to the diabetic nurse this morning, armed with 10 days of readings.  My HB1AC reading was up, so they knew there was a problem anyway.   I explained to her what the optician initially said and that I had tried and failed to get the doctor to discuss / prescribe the strips but in view of readings I was getting, obviously all not well.  I have to have another blood test in 3 months, to review, for possible thyroid problem - but I tried to get the nurse on board.  I explained I'd been on here and could use the readings to determine what is good / bad for me and could modify my diet accordingly. She recorded more weight loss, which is good - but need to shift it faster, I know. 

A ten minute appointment went to forty five minutes - was VERY grateful for her time / support!  She said in view of the results, would need to see the doctor, to possibly look at different / additional medication. 

Appointment with the doctor today not possible - but she rang me and we chatted.   Told her how I felt, that I'd taken advice from this website/forum and wanted to take control, that I really believed I could make a difference to managing my diabetes, if I could test, now I was more informed.

Based on my appointment with the nurse, my chat with her and then the actual doctor, a result in that she is happy to prescribe strips / lancets in the short term !    

Has arranged for me to collect today - then I have to go back in December for another (now fasting) blood test, then review, direct with the doctor. Depending on results / readings / weight, she'll look at then and decide on whether I can continue on current levels of Metform / require additional meds. 

So I've got three months to really apply myself and see what I can do, armed with the strips / all the information I've been given - links you've given have been SO informative !   Let's see how it goes....

But feel so much better in having been able to get someone, in the surgery, to listen to me ! 

THANK YOU so much for your help....


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## AlisonM (Sep 10, 2013)

This is good news Helen, I'm sure that with a proper testing regime you'll be able to prove the value of it to your medical team and be allowed to keep on testing.


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## LeeLee (Sep 10, 2013)

I'm so pleased for you Helen.  You've succeeded where so many have failed.  Now you can find out what's best for you.


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## Northerner (Sep 10, 2013)

Great news Helen, good to hear that you are being listened to!


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## jalapino (Sep 10, 2013)

Wonderful news....you have done that so many have failed to do...get strips!

BRAVO!!


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