New user - Desperate for help

[fink1976]

Hi, this is my first time posting and thanks so much in advance for anyone who can take the time to help me out.
I'm a 33 year old man and have been type 1 for 6 years now, my HBA1c's have always been in range, I am not overweight, I have a reasonably healthy diet and exercise almost daily.
However for the past year and a half I have been absolutely devastated by peripheral neuropathy, so much so that I am in near constant pain. I always have pain in my legs that ranges from a light tingling to being practically unbearable, If I sit down for even a short period of time (say,20 minutes) the backs of my thighs become very very sore and give me a burning sensation, I have almost constant twitching both in my eyelids and around my body and have frequent severe headaches that are becoming an almost daily occurence. I don't know whether it's all connected but it feels like it!
I simply can't remember what it's like to feel healthy, it seems like every day I am confronted with one or all of the above symptoms, on top of hypo's and all the other things a diabetic has to deal with.

I am getting treatment for this, at the moment I am taking both Lyrica & Tramadol at the maximum daily doseage, also as supplements I am taking daily doses of Vitamin B,Alpha Lipoic acid & Evening primrose oil.

All my blood tests have come back as normal, when my nerves in my legs were tested there was found to be no lasting damage, so my GP is trying this maximum doseage that I've described above, if it doesn't have any impact (i've been on smaller doses for about a year now) then I will be put on a new medication, and if that doesn't work I'm to be referred to a Neurologist.

I try to do as much research as I can and I try very very hard to fight it but no matter what I do it seems to make no difference, it's getting to the point where I'm at the end of my tether with it because I know it's incurable and I just think it's going to get to the point where I won't even be able to work in a few years it's so bad.

Sorry for the massive sob story for a first post! Does anyone have any advice?

 

[sugarless sue]

Do you know what you Hba1c is at the moment?

 

[hanadr]

If you are going by the target numbers and dietary rules usually set by the "medics" you could still be in the danger zone.You need to have non-diabetic numbers to be safe. that is BGs under 7 at all times and HbA1c under 6%( non-diabetics are at about 4.5%)
The Doctors are satisfied with results that are almost guaranteed to lead to complications. They excuse it by saying, a) the patients are non-compliant, b) the condition is progressive. Both these can be nonsense. You have a right to aim for non-diabetic numbers. You can achieve them by either increasing the insulin and the exercise, or by reducing your carb intake right down. If you reduce carbs, you will end up needing to reduce your insulin.
Let us know your numbers, your regime, your diet.
We will try to find you a way to improve things. We don't promise it will be easy and it might go against all you have beeen taught so far.
Take heart! By getting into the non-diabetic range, people have cured neuropathy and regained their health

 

[jallsop]

I'm afraid I can't offer any advice but I just wanted to say I understand your pain. I have almost identical problems although I am on a different medication: I take Gabapentin, 200mg, 3 times per day but it doesn't seem to be doing much good. I have gradually increased from just 100mg, once per day. As I said though, I don't get an awful lot of relief. I also take Diclofenac, 50mg, twice per day.

I, at least, am now 49 years old and the rest of my body is probably ready for the knackers' yard anyway! At 33, it must be quite devastating for you. I can only hope that they find a medication to help you.

Good luck.

Jackie

 

[fergus]

Hi fink1976.

It sounds as if you're having a really tough time. You'd be forgiven for thinking that the future for you is bleak indeed. You are a young man, making every effort to avoid the complications typically associated with diabetes, but they are creeping up on you nontheless. Even five years further down this line and, well, I'm sure you have given it a lot of thought.

Please don't despair. There is much you can still do to stop, and quite possibly reverse many of the sypmtoms of neuropathy you describe. I'd urge you to read Dr Rchard Bernstein's description of his complications as a man in his 40's, in the late 1960's. He had vascular disease, cardiomyopathy, cataracts, night blindness, frozen shoulders, advanced kidney disease, neuropathy in his feet. The works.

Now, at the threshold of 2009, he's perhaps the world's pre-eminent diabetes specialist, in his late 70's with none of these complications any more. The answer for him and for very many others like me, has been to achieve non-diabetic blood sugars. Not 'ok for a diabetic' blood sugars, but non-diabetic. That means an HbA1c somewhere between 4.2 and 5.4% and blood glucose levels no higher than 7.8mmol/l at any time.

How do your numbers compare with those? Please let us know because there is so much you can do to halt and reverse the decline.

All the best,

fergus

 

[fink1976]

Thanks so much everyone for replying so quickly.

I agree that the goal is "normal" BG and I always strive to reach that, I can give you a rough guideline to illustrate how I'm doing.

Here are my averages for November-

Breakfast 5.8
Lunch 6.0
Dinner 6.7
Night 8.7

My HBA1C's (six monthly checkups) have been as follows-

6.0 (most recent)
6.3
6.4
6.3
6.7 (08/01/2007)


Insulin used is Novarapid & Levemir, Novarapid is usually 6 for the average meal, and I take one shot of 16 Levemir each night at around midnight.

Diet is generally good, my Breakfast and Lunch I try to keep very consistent (a bran bagel for breakfast, a wrap and an apple, some raw carrots and some vegetable crisps for lunch) Dinner is where I get the most variation, although I do try to keep the carbs down as much as possible.
I'm not big on snacks, and only really have them when I feel my BG is a bit low, then it's usually a yoghurt or something.

Exercise is usually 30-40 minutes on an exercise bike every day.

I must stress though that this kind of regime has only really been in place the last few months in an attempt to get a hold of the problems I've been having, before that I was still reasonably good, but by no means as strict and as regimented as I am now.

My BG definitely does creep up during the day and the one I have the most trouble with is night, where it is difficult to get a good reading and most of the time it is 8 or greater.

I will look into the writings of Dr Rchard Bernstein, it sounds like a great source of information, and I definitely agree that stricter control may answer many of the problems I'm having.

Once again, thank you so much for your responses, it's nice to know there's help out there!

 

[sugarless sue]

What time do you eat at night?

 

[fink1976]

It does vary, it can be any time between 7 and 9 usually

 

[sugarless sue]

I think this is one for Fergus to explain.

 

[fergus]

Hi fink1976,

I hope you don't mind me being forthright. Those are all diabetic blood glucose readings, which sounds like a tautology, I know, but you get my meaning I'm sure.
Is there a lot of carbohydrate in a typical day's diet? Breakfast and lunch sounds predominantly carb-based, would you think about changing these things to foods higher in protein and fat, and much lower in carbs?

fergus

 

[fink1976]

I know what you mean fergus, I see now that while I'm doing ok in diabetic terms, I need to do a lot better and get those numbers down.
There is what I would think to be a normal enough carb intake say 50 at breakfast, around 60-70 at lunch and the same for dinner.
I know that I should get that reduced, but what also concerns me is the increased risk of hypos that having generally lower bg brings. To be honest I am troubled enough with them and have hypos quite frequently.
You mentioned that I should be looking at alternatives for breakfast and lunch, is there anything you would recommend that would be especially helpful?

 

[fergus]

Hi fink1976,

So you're eating 170-190g carbs per day? In the writings of a number of specialists (Bernstein, Allen, Lutz, Clark, Eades) that is considerably more than you need. It's probably enough to ensure that non-diabetic numbers are very diffcult, if not impossible to achieve.
Many members here are eating between 20-60g carbs per day, always with improved bs control, improved lipid profiles, improved HbA1c, reduced hunger and improved weight.
I do understand your concern about hypo risks, but you need to balance the potentially lower bs numbers against the reduction in insulin use. The less insulin you use, the more stable your blood sugars will be. So it's perfectly possible to have a bs which is both lower and more stable.
For breakfast and lunch, would you consider eggs, sliced meats, green veg / salads, fish with fats such as butter, olive oil, mayo etc.? Trust me, you won't regret it!

All the best,

fergus

 

[fink1976]

Boy, looks like I'm over shooting by a mile on the carbs then!

I think I've gone by the theory that if I take more Insulin to cover the carbs, then it's OK, it never occurred to me that I should take a major cut in carbs,
I think my main worry was weight, and whether if I went on a lower carb diet that I would be risking other health problems also (lack of fibre etc)
I mean, at the moment I weigh 75.20 (I'm 5ft10) and there's not a lot of me, however it's clear that something needs to change in my diet. I'm always ready to try a change if it will help.

However, without wishing to sound all doom-mongering about it, I can't put into words how frustrated I am by this disease, I just can't believe that complications have come so quickly, I mean in 10-15 years maybe, but after 4? and to come at me with such severity, and after what I thought was good control.
I guess I still wanted to believe that with the right control I could lead a relatively normal life, and with exceptions, eat regular food. I guess that simply isn't the case. A change in diet is the way to go then..
I'm more than happy to accept recipe suggestions

 

[IanD]

Fink, listen to Fergus - he speaks wisely from experience. I did.

As a 69 year-old T2, in what I thought was good health for my age, I was following the NHS/DUK diet, & Dr was happy with my control. (HbA1c around 6.5.) Neuropathy (leg muscle pain set in early this year which threatened to end my active life. Dr gave quinine, obviously hoping the pains were cramp rather than neuropathy (after all, they expect diabetic complications to develop over the years, & all they can do is prescribe.)

Reading this forum I cut my carbs to about a third, & I am playing tennis again. It took about 3 months to completely clear the problems during which weight & cholesterol were also reduced to approved levels. (I couldn't take statins because of muscle pain.) Tiredness was also greatly reduced.

I checked my previous NHS/DUK diet & found I was eating up to 350-400 g carbs per day - & I though I was eating a healthy diet :!: Now its around 100 g.

 

[phoenix]

Hi,
Well done for adjusting your diet and cutting out the worse elements .You have already cut your Hb A1c by doing so, but the damage done earlier may take some time to alleviate. Sadly some people do get complications at lower levels than others.
You don't say anything about what you've done with your insulin regime. I think that for many people it is possible , using modern insulins, to eat a diet containing a reasonable number of good quality carbohydrates,(much as you are now doing) and to achieve HbA1cs within normal ranges. I do, so I'm going to give different suggestions to Fergus. As the titles of the books say you need to learn to 'Think like a Pancreas' and 'Use Insulin' rather than just dose with it.
(There are 2 excellent books that are invaluable: Garry Scheiner Think like a Pancreas and John Walsh, Using Insulin.)

Your basal insulin needs to be correct, your carb to insulin ratio needs to be correct and you need to have some idea of the effects of individual meals on your BS. For example most people find that because meals high in fat (and sometimes protein) or lower in glycemic index take longer to 'digest' and sometimes have to split their bolus insulin over 2 injections to cover them effectively. Some people find some carbs have far greater effects on their own metabolism than others. You also need fairly good carb counting skills.

From your figures I assume that you're going to bed with a reading of 8.7 and waking up at 5.8mmol.
This may be because you are not using a high enough insulin/carb ratio for your evening meal and are going to bed with a high BS. If so your basal is then dropping your BS. Basal insulin is meant to keep your BG stable, not to reduce it .

The readings that you don't give are the 2 hour post prandials. How high are you at 2 hours?, It may in fact be that you are going relatively high after each meal and that you are relying on your basal to reduce the BS to the premeal figure. In that case the basal may be too high and all the boluses too low . Testing should help you find out.

Different people have different profiles through the day, I take less insulin to carb for breakfast and more for the evening meal but others have an opposite profile.
A possible first action is to test your basal dose, you can do this by missing a meal and testing, your BG should not rise or fall significantly. This article, from an American forum, tells you how to go about it http://www.diabetesdaily.com/forum/articles/16675-basal-testing-multiple-daily-injections Some people find it is better to split levemir, half in the morning and half at night.

Once your basal is correct you should not have to fear unexpected hypos (though you will have to account for extra exercise) You can then start to adjust your bolus rates. If for some reason you find that you can't achieve this, perhaps because of a very varied lifestyle or a very uncoperative liver, then it may be a good idea to investigate using an insulin pump which would allow you to adjust more minutely.

 

[fergus]

Hi fink1976,

I know it's an approach often suggested by some HP's, but in my view the idea that one can simply up the dose of insulin to cover whatever you want to eat is seriously flawed.
For one thing, the larger the dose, the greater the uncertainty over the outcome - both high and low bs can result, despite your best efforts.
Also, insulin is an extremely powerful hormone and has an effect on many aspects of the metabolism. It's by far the most important fat building hormone. It directly influences cholestorol levels (raising VLDL and triglycerides, and lowering HDL) and has more influence on hypertenson than salt intake. As a consequence, raised insulin levels can play a direct role in kidney disease.
If you take a look at the Success Stories thread you'll see quite a few inspirational stories of how members have gained a level of control that they thought was impossible.
Oh, and the grub's smashin' too!

All the best,

fergus

 

[caitycakes1]

Hi fink,

I have only been diabetic (type 1) for five months. I have been low carb for about two months and can't believe the difference. I don't have any complications but the thing I love the most is that since I have been low carb I haven't had a single hypo. I also never have a reading above 6.0 even after eating. Obviously if you are going to try it you have to be careful to adjust your insulin accordingly but I would say it's definitely worth a try. Fergus has a wealth of information and experience on the low carb method. He's being doing it for years. The less insulin you take, the more predictable your blood sugars are. Hopefully you will be able to reverse your complications in time.

Regards Caitycakes x

 

[phoenix]

I know it's an approach often suggested by some HP's, but in my view the idea that one can simply up the dose of insulin to cover whatever you want to eat is seriously flawed

If you are referring to my previous post, I was not saying that at all. I was describing ways of using insulin to mimic (albeit not perfectly) the action of the deficient beta cells. By doing so I, and others can achieve normal BG levels and eat a balanced diet. There should be no need, and personally I do not find it advisable , to reduce carbs to extremely low levels, particularly the 30gms a day Bernstein advocates.
Sufficient insulin to cover a normal diet (not 300 carbs a day, unless one is extremely physicaly active ) should not be a large amount. Certainly no more than the pancreas would have produced in a non diabetic, of similar weight, eating a healthy diet. Neither should it lead to weight gain, it is excess insulin to cover excess carbs (and protein) that does that. I take about .375 unit per kg of bodyweight as a total daily dose which is on the low side.
Obviously using ( to cover or misusing) insulin to cover regular high fat, high carb meals may result in its own problems, not least a tendency to become more insulin resistant.

Sorry, Fink, this is a controversial area. What I can say, is this method works well for me with HbA1cs in the low 5s.

 

[jopar]

I think the most important thing about control, is knowing what effects control, which will be slightly different for eveyone...

Getting your basal insulin right is a must, otherwise any boulus injection you do could well be out....

So understanding how to work this out with fasting tests is a very good ideal... As you would need to know if it would be better to split you levimer to into 2 injections to get better coverage, as 2 factors to consider is one injection being effective for 24 hours, 2 jabs will give better coverage.. Also do I really need a uneven spilt to flatten out my basal line better?

As to your carb intake a day, this depends on you, there are some who seem happy a larry with extreme low carbing, and the social aspects when eating away from home seems not to bother them, as this diet in many ways is restrictive and more different to achieve away from home.

Is less insulin also ways better, not sure about this one... When injecting a bolus for food promblems can be;

miss calculation of amount

asorbtion of insulin can be quicker than the asorbtion of carbs, so leaving you with out one point having too much insulin and not enough carbs to work on, so hypo and treatment the delayed asorbtion of carbs kick in and give a high and not enough insulin to counter react

The asorbtion rate could be slightly different in different amounts injected, this can be effected as well with different injection sites...

These are just some of the problems...

These can effect your control whether you extreme low carb or not


You really need to learn what and how carbs are reacting to your situation, as good control can be achieved sometimes with better managment of insulin doseage and handling of carbs instead of cutting them out of your diet...

Me for instance, I like pasta but I have to be careful when eating it, as I know its asorbtion takes about 3 hours to really have a impact on my BG, and if I inject the correct amount of insulin to cover in one go, I know that this will give a hypo with in the hour as it isn't matching my asorbtion of carbs... So I split my injection into 2, a small amount to catch the slight raise, then I would wait an hour and inject the rest to catch the later raise... To keep a even keel of my levels...

As to how much can be complications can be effectively reversed, will partly be based on how much damaged has been done, but a lot of complication can be reversed if caught earily enough, while others would either be reduced to levels that caused mimium impact and stop the condition progressing futher...

I am surprised by the claims of Berstien and what he says he has totally reversed with in his medical conditions, as some such as cateract isn't considered to be a complication of diabetes, as it is very common in non-diabetes due to cateracts being started by eye injuries that are so minor that the individual might not realise that injured there eye!!! Amoungst other things As to totally reversing advanced kidney disease I do ponder this as I have sustained some kidney damage when I had major trouble with control around 5 years ago, not at the degree that it would be considred as advanced and by regaining my control I have managed to stop this getting worse, but as to improvement this has been slight????

I have tried to to find information on these medical claims that Bernstien suggests in his book, but so far failed to turn up any independant verications of his medical records this doesn't mean because I haven't found any yet that there isn't any though!

 

[fergus]

Pheonix, I wasn't referring to your post at all. My reference was to my own experience with health professionals and the underlying premise with programmes such as DAFNE which suggest that diets high in carbohydrate are fine for diabetics, provided they inject enough insulin.

I'm not going to get started on another discussion about what constitutes a 'healthy balanced diet' because there is no evidence that current assumptions on the subject are making people any healthier. However, it does rather illustrate the somewhat polarised views on the subject when some have a view that there are reasons not to restrict carb intake below a certain level, and others can't see why they should consume any more than a low level. I'm not being personal here, it's a common theme.

In my experience, eating what some might call a 'normal' carb intake caused me to use many times my current insulin needs. The advantages of such low doses, aside from the many metabolic issues, is someimes referred to as 'the law of small numbers', meaning that the lower the dose, the less the risk of getting it wrong.

But please let's not hijack fink1976's thread for another rammy. He's a man for whom his current regime is causing him many problems and, as caitycakes1 demonstrates so well, there are options which may well work much better for him.

fergus