I felt 10 times better before the drugs!!

[Joshman]

Hi, my name's Josh and I'm a diabetic, a type 2 insulin resistant kind of diabetic. I was diagnosed with diabetes on 9 February 2010. I'm usually not very good with dates, but that particular date, I don't think I'll ever forget.

Heart disease runs in the family so for years now I've always had annual check-ups and everything's always been fine. This year, however, a few days after my blood test, I get a phone call from my doctor asking me to come in for another blood test. When I asked why, she replied "ummm well, it looks like you've got diabetes". Everything just seemed to stop at that point and life's not been the same since.

About a week later, I'm sat in my doctor's surgery and she tells me not to worry, everything will be fine, just take 3 of these new tablets every day and they'll sort me out. I asked if there was anything else I needed to know about being a diabetic. She advised me to cut out sugary foods and not to wear sandals when I'm on holiday in case I cut my feet. Apparently that was all I needed to know about being a diabetic.

The next day I started taking the medication she'd prescribed, Metformin. By day two, I felt like I was going to die. I had blinding headaches, my brain had switched off, I had zero energy, could barely get out of bed, stomach cramps and the worst case of diarrhoea I have ever experienced. I stopped taking the tablets and went to see a different doctor. However, his advice was to stick to 3 Metformin's a day for 2 weeks and if things don't settle down by then, to come back.

I stuck it out for another 4 days but it was just as bad, I couldn't see how this was meant to be helping me. I rang up the surgery, got through to another doctor who told me she didn't know much about Metformin but she'd ask the Diabetes Nurse to call me later. When I eventually spoke to the nurse, she was horrified to learn I'd been advised to start off on 3 tablets a day. Apparently, I should have been advised to start off on 1 tablet a day, gradually building up to 3 tablets over an 8-10 week period, always taking it with food.

So I started again on 1 tablet a day and the symptoms eased off. After a week I decided to move on to 2 tablets and although my stomach was fine, I did feel like I had low energy levels but not as bad as before. By this stage I was able to see the Diabetes Nurse and we had a long chat about the condition, she gave me some information on diet and also prescribed Simvastatin for my cholesterol, Asprin for my heart and Losartan Potassium for my blood pressure. Even though all of these had been fine, it seems diabetics are more likely to experience problems with their heart, blood pressure etc.

A couple of weeks ago I decided to move on to 3 Metformins a day. Fortunately no diarrhoea this time. Unfortunately, I'm still having headaches, very low levels of energy, dizzy spells and now, not only am I constipated, I've also developed acne, huge red spots on my face!

I thought maybe the headaches could be down eyestrain so I went to the opticians but my eyes are fine. I'm due to see the nurse again in 2 weeks time but I just can't take anymore of this. Dragging myself out of bed each morning to get to work on time has become such an ordeal. Once I am at work, my brain just can't concentrate on anything. Evening's and weekends are spent resting to build up whatever reserves of energy I can muster to get myself back to work. The ironic thing is that before I was aware I was diabetic, before I had any medication, I felt great. The medication that's supposed to be helping me, is making me feel like ****.

Is this what it's like to be a diabetic? Am I destined to spend the rest of my presumably shortened life as a spotty constipated zombie?

 

[Ardbeg]

Hi Joshman and welcome to the forum.

Sorry to read that you've had such a shi**y time (sorry, couldn't resist that one ).

My experience is slightly different to yours in as much as my GP and DN both agreed to let me try and control my T2 with diet only initially and so far so good (he says touching wood). I therefore have no experience (yet) of any meds, but there are lots of forum regulars who have and no doubt they will contribute to this thread very soon.

Just to end, unlike you feeling 10 times worse, I now feel 100% better than I did last year. I went through last year feeling awful - no energy, pains in hands and feet, grumpy old man (I am anyway, but now I can blame it on T2 ), etc, etc. Now I've radically changed my eating habits and what I drink I feel great.

 

[sugarless sue]

Here is the advice we give to new type2 diabetics. Have a read and see if anything there is of use to you.

This forum doesn't always follow the recommended dietary advice, you have to work out what works for you as we are all different .

It's not just 'sugars' you need to avoid, diabetes is an inability to process glucose properly. Carbohydrate converts, in the body, to glucose. So it makes sense to reduce the amount of carbohydrate that you eat which includes sugars.

The main carbs to avoid or reduce are the complex or starchy carbohydrates such a bread, potatoes, pasta and rice also any flour based products. The starchy carbs all convert 100% to glucose in the body and raise the blood sugar levels significantly.

The way to find out how different foods affect you is to do regular daily testing and keep a food diary for a couple of weeks. If you test just before eating then two hours after eating you will see the effect of certain foods on your blood glucose levels.

Buy yourself a carb counter book (you can get these on-line) and you will be able to work out how much carbs you are eating, when you test, the reading two hours after should be roughly the same as the before eating reading, if it is then that meal was fine, if it isn’t then you need to check what you have eaten and think about reducing the portion size of carbs.

When you are buying products check the total carbohydrate content, this includes the sugar content. Do not just go by the amount of sugar on the packaging as this is misleading to a diabetic.

As for a tester, try asking the nurse/doctor and explain that you want to be proactive in managing your own diabetes and therefore need to test so that you can see just how foods affect your blood sugar levels. Hopefully this will work ! Sometimes they are not keen to give Type 2’s the strips on prescription, (in the UK) but you can but try !!

As a Type 2 the latest 2010 NICE guidelines for Bg levels are as follows:
Fasting (waking).......between 4 - 7 mmol/l.
2 hrs after meals......no more than 8.5 mmol/l.
If you are able to keep the post meal numbers lower, so much the better.

It also helps if you can do 30 minutes moderate exercise a day. It doesn't have to be strenuous.

Did the doctor discuss you trying to control your diabetes by diet only for 3 months ? This is general advice for most new diabetics unless their blood sugar levels are very high to begin with. For a doctor to say that they do not know much about Metformin, the most commonly used diabetic medication is quite worrying! :shock: I think I would ask your DSN which of the practice's doctors knows most about diabetes and see that one.

Headaches are not one of the common side effects of Metformin so you really need to discuss this with a doctor who knows about diabetes and the medication.

If your blood sugars are very high or low (the only way to find this out is by testing with a blood glucose meter) then this could be the cause of the headaches and some of the other symptoms you describe.

 

[mazbee]

Are you drinking plenty of fluids?
I had similar symptoms because I did not drink enough fluid and became dehydrated.
I make sure I drink plenty of water as well as decaffeinated tea, and feel much better now.

 

[Joshman]

Thanks for the replies guys. The option of controlling by diet alone was never discussed. The last 2 blood tests carried out by the surgery came back with a reading of 7.4 but I don't really know how high that is on the overall scale. To be honest, I can't remember what is was they measured. It was do do with blood glucose but not the usual blood glucose level that you can test at home on the blood test strips which gives a mmol/l reading.

Thanks for that info Sue, the thing about cutting out complex carbs was very interesting and makes a lot of sense. I specifically asked the nurse about bread, rice, pasta and potatoes when I last saw her and she said they were all ok to eat as part of a healthy diet. I'm still eating all of the above on a regular basis. Is that what's making me feel so ill? I felt fine eating all those before I started on the Metformin, why would they make me feel ill now?

The thought of cutting out all of those is actually making me depressed, lol!! I've found cutting out the obvious sugary foods/snacks relatively easy, but how do you live without bread??

Another question if you don't mind, what kind of things do you eat for breakfast? I've had toast, weetabix or porridge for years now. Weetabix, I'm cutting out as it contains sugar, but funnily enough the nurse said that was ok too. If toast is out too because it high carb that just leaves porridge, which I'm assuming is ok but I don't have that as often as it takes longer to cook and I don't have time in the mornings when I need to get to work. So what else can I eat?

I don't understand why the NHS isn't giving out the same advice. I certainly have less faith in my doctors than I used to have.

Does this mean that unless I make, what for me would be, radical changes to my diet, i.e. no bread, potatoes, rice, pasta, I will continue to feel ill, exhausted, depressed, no matter how long I'm on Metformin?

To answer your question Mazbee, yes I do drink plenty of water (at least 2 litres) and that's pretty much all I have drunk for years, apart from a cup of normal tea which I have in the mornings and decaff tea now and then.

 

[sugarless sue]

The reading of 7.4% is your Hba1c. This is an average of your blood glucose over 90 days. The NICE guidelines recommend below 6.5 % so that is probably why you were immediately put on Metformin, to try and reduce this down.

The thought of cutting out all of those is actually making me depressed, lol!! I've found cutting out the obvious sugary foods/snacks relatively easy, but how do you live without bread??

The only way to find out how the starchy carbs affect you is to test before eating then two hours later. Do you have a blood glucose tester ? You do not have to cut them all out just reduce the portion sizes but, above all, test to see how they are affecting you. If you find they are sending your blood sugar levels into orbit then, yes, you may have to give them up for a while. Many find that, as they lose weight, they can eat things that they couldn't tolerate when they first started.

I don't understand why the NHS isn't giving out the same advice. I certainly have less faith in my doctors than I used to have.

NHS advice is what they are told to say, experienced diabetics find that not all the advice given suits them. We are all different and tolerate things differently. That is why testing is so important.

 

[lyndsaychocolate]

hi - i was on metformin for a while. i had so many bad side effects my consultant took me off. The metformin stopped me wanting to eat anything at all and the things i did like i didnt like and vice versa. Gave my family a nightmare where food was concerned. I had no energy either. i am lucky my nurse in the hospital and consultant are brillient. i dont think much of the surgery though. if you can get into the hospital and be seen its better. Also porridge can spike your sugar so be careful even if you dont put sugar on it. You need to weigh everything and remember everything you put in your mouth turns to glucose. Being type 2 resistant means that you probably make insulin but the insulin cannot be used as the cells do not absorb it and the metformin helps to unlock the cells so that insulin can be used. It does help you lose weight as well and good for your heart apparently but the side effects are infamous. Your doctor is failing you she should explain things to you more.

my consultant said that if my life was being miserable with the metformin i should stop taking it. There are alternatives and ask your doctor there is a long acting metformin as well and it is supposed to be better than the regular metformin only more costly but they can perscribe it to you. Ask to see a specialist at your local hospital about diabetes.

Also if you are taking statins make sure you take something called Q10 as this can make your muscles ache and give you side effects as well. The statins depelete the Q10 out of your body and this will make you have no energy as Q10 brings energy to your cells in your body. Your doctor should have told you about this as well. Also make sure you only have the dispersable asprin as the tablets can settle in your intestine and erode through the wall. Dispersable should be ok as it does not sink to the bottom of your intestine.

i am type 2 but my doctor thinks i may be type 1 am on insulin and felt much better than being on metformin. i am awaiting a test to see which i am but it takes something like 6 months but my doctor is convinced i am type 1.

Good luck!

Lyndsay

 

[IanD]

Hi Josh, It all seems very sudden - 'they' are moving too fast for your body. Any & every sudden change will have its effect. Diabetes does not come on suddenly, so it is NOT a panic situation. Realistically you & they need to see how you are without medication at first.

The medics would only consider your condition a matter of urgency if you suffered serious symptoms & needed to be stabilised in hospital. That is not the case with a reading of 7.4, (presumably HbA1c, which is a 2-3 month average blood glucose measured on the cell structure.) It fact 7.4 indicates an early stage. 10 years ago I presented with a numb sensation in one thigh. The Dr suspected diabetes & got a blood test - HBA=11, & retested & the result was 8. (meanwhile I cut out everything sugary)

He advised diet & exercise, not immediate medication. In 3 months my HBA had dropped below 7 & I continued on diet & exercise for several years. I was immediately referred to the local hospital for diabetes education, involving diet, medication, exercise, care of feet, & pharmacist encouraged us to build a relationship with our local chemist.

With further care, & a change to a reduced carb diet, my HBA has dropped below 6 & I feel generally very healthy. At 71 I play a good game of tennis at club standard, & hold my own against the youngsters at table tennis.

You may find this thread helpful, where I report on the diabetes X-PERT course.

 

[lilybet]

Hi Josh,
I am sorry to hear how bad you have been feeling. I had a similar experience with Metrormin. I persevered, but in the end the side effects were having a detrimental impact on my life. However, my G.P. was very helpful, and after another attempt with a drug which was as bad, I am now on a tablet which to date has been fine.
I think you felt better before the drugs, because of your awful experience, but I can say that once the medication is correct, then you really do feel better!
As far as diet is concerned, I found that there were so many conflicting views about what should be avoided, that I decided to go back to basics and cut out all of the things that I know aren't good for me, cakes, biscuits, sweets, in fact all of the stuff I really liked as a guilty pleasure!
I think testing before meals and then after meals is the way to go initially. This allows you to see what makes your levels go up. However, don't get obsessive about it.
There is a lot of good advice available from the members of this community, but in the initial stages of diagnosis, it can be a little overwhelming.
However, I am a few months into my diagnosis and I really do feel a great deal better. I struggled to concentrate, felt tired all the time, and for the first three months, keeping up with uni work, as well as managing a family was tough, however,it hasn't stopped me getting on with my life, looking forward to graduating in July with a post-grad in law...... diabetes made it more challenging, but I like to think that whilst being diabetic is important, it is not the most important thing in my life.
Yes, it does take a little time to get your head around it, and it would be nice not to have it, but hang in there, there really is life after type 2!

 

[Twosharppencils]

Hi there Joshman,

I am a fairly newly diagnosed a type 2 diabetic atage 48 (in November 2009) and was terrified with the news and drug treatment that followed. You certainly feel quite alone and don't know where to turn. I got alot of initial help from this forum, but it also frightened me to death! You can read too much if you are a worrier like me, so I prefer to consult my diabetic nurse or GP if I have any concerns.

One of the first things I found out was you now get all prescriptions free (so if you have a prepayment certificate from the NHS, then cash it in for a refund)
also, don't buy a diabetes testing meter/kit. You will more than likely be given one through your nurse or clinic. Ask about it.

It's so easy to panic about foods. I know I did. 3 meals a day you need to survive, what the hell can I eat? Virtually everythng has sugar in it. I had a very sweet tooth and the diagnosis frightened me into eating nothing sweet. I got a deep ringing in my ears as though everything was overamplified and my eyesight was worryingly blurred. (Debbie my nurse told me it was a symptom of diabetes and it would get better. Thankfully she was right) You can eat chocolate is the bottom line, but only to treat yourself. If you were denied chocolate forever, the more you want it. You just have to be very sensible. Your nurse will be able to advise better than me.
It was arranged for me to go to 2 x 2hr courses to learn about the disease and all its effects. It was extremly helpful. I'm in the East Midlands.

When I was diagnosed, I was contacted by the surgery the next day saying that I had a reading of a shocking 20! She had known worse so told me not to panic but start the medication straight away. Take 3 Metformin a day. (I think that decision depends on how severe your blood sugar level is at the time of the blood test.)

I didn't take mine for 4 days until I had an appointment with my GP to learn more about the tablet. Didn't like what I read about it on the Internet. He insisted that I take it, so I have done since November.

Yes I recognise the symptoms you describe, apart from the headaches. CHRONIC stomach cramps that doubled me up in pain like I've never experienced before. Feeling like you are desperate for the loo, but when you get there you feel constipated.
Believe me, the cramps do get better. I felt like I was going to die if the pain didn't ease, but thankfully it has. One bonus advantage is that alot of people lose weight. I have lost nearly 2st since November and that very fact has made me feel a hell of alot better in myself. I don't know if you are overweight but it's the Metformin that helps with shedding the lbs.

As for your cholesterol drugs, I was put on simvastatin a few years ago and after 2 weeks I told my GP I couldn't take them anymore. I have underlying osteoarthritis and fibromyalgia which make me ache like crazy anyway. The Simvastatin made it unbearable so I asked to change. Now I'm on Rosuvastatin and they don't seem to cause any side effects. (apart from mild short term memory loss, which is quite concerning! Monitor that yourself)

There is alot to take in when you're first diagnosed, so you are not on your own. Remember that. The basic rules seem to be;
1. Eat a healthy, sensible, well balanced diet.
2. Get your 5 a day fruit and veg.
3. Make sure you do some exercise to burn any carbohydrates in your system, otherwise they can turn to sugar and raise you blood glucose. (I think that is correct. Someone correct me if I'm wrong - I'm still learning too!)

I hope my recent experiences have helped in some small way to reassure you that all is not lost. You can go on to function normally, eat most things, and embrace a new way of life. (ha! The latter I'm still struggling with, but people keep telling me I'll feel better mentally as time goes on)

Read all the advice you need on these forums, write questions down when you think of them to ask your nurse or GP and never think you're a nuisance. I'm sure people on here will back me up in saying you can never ask enough questions.

Take care of yourself and try and keep positive.

Shari

 

[FelineFan]

Hi there Joshman,

Can total relate. Have been on Met for 5 weeks now. Thankfully I have a great GP who started me on 1 500mg day for 1 week, 2 a day in week 2 and 3 a day in week 3 - which is the norm.
Like you I also experinced the uncommon side effect of headaches - as well as the more common tummy disturbances, runny stools (sorry TMI!), extreme tiredness, nausea, lack of appetite.

Thankfully however these side-effects are now much improved and I only tend to get an upset tum, if I eat junk! Clever drug that Met! So hang on in there, things will improve, eventually! Also experiemnt with when is best for you to take them. The after breakfast, lunch & dinner scenario isn't always best!

Am surprised with such a relatively low HbA1C, that you were put on tablets straight away. You shoud have been given the option to do diet/exercise alone first - I did this for 6 years, and although had some success, it was very yo-yo - am a comfort eater! So in March this year, I finally releneted and went to Tablets. Still battling my comfort eating demons, but am improvng and am seeing better BG results

Good luck!

 

[john12188]

i have the same problem as you josh. never got any energy and i to suffer from diarrhea. i did go to my doctor to ask if i needed to be on 4 metformin a day and told him my symptons. hie reply was " think your self lucky" . i am also on insulin and blood pressure tablets(lisinopril) . they say exercise ,wish i had the energy to exercise. i have lost all trust in the doctors and nurses and i learn more from other people on this site than i do from my doctor. at least my blood sugar stays in constant . from 5.8 to 7 so i feel lucky in that at least that seems in control . im also on rosuvastin which plays hell with my muscles giving me aches and pain ,ever now and again i have to come of them for a while. im now 73 i suspose i will never feel any better at my age .

 

[Joshman]

I just want to say a big thank you to everyone who's replied to my original post. I was feeling a little down at the time, when I posted that, and I've genuinely found it touching that people have taken the time to pass on advice and share their own experiences with me.

When I was first diagnosed with diabetes, I wanted to find out as much as I could about it but many of the sites I found myself on were of the doom and gloom, you're going to die, kind of sites and I just stopped looking any further. However, last Sunday, I decided to look up Metformin and that's when I stumbled upon Diabetes.co.uk. In just a few days, you've made a huge difference to the way I view this condition.

I now realise I have to be more pro-active in managing the condition. I can't just rely on the tablets, or even, it would seem, the advice of the NHS. I'd assumed that it was just sugar I had to cut out and then just follow what I thought was a sensible diet. I wasn't aware of the impact carbohydrates had on blood glucose until you guys told me. My nurse told me that not only was it ok to eat starchy foods, I should fill up on them. It seems crazy that the NHS are giving out such poor dietary advice to diabetics. Don't they have any diabetics working in the NHS??

Since Monday, as an experiment, I completely cut out Bread, Potatoes, Pasta and Rice and it has had an affect. I feel more alert and today other people noticed that my mood was more upbeat than it has been the last few weeks. I still feel tired but no where near the state of complete and utter exhaustion that I've been in since I started on the Metformin.

I also managed to borrow a blood monitor from a guy at work. I tested myself yesterday morning before breakfast and it was 5.2. I tested it again 30 mins after having a bowl of porridge and it had shot up to 9.1. I'm guessing that means I should cut back on porridge too. I've stuck to having 3 meals a day and when I've tested myself 2 hours after a meal, the reading's between 6 - 7. However, by around 5pm, it's between 4 - 5 and I do feel light-headed.

Being realistic, I can't cut out those foods permanently but like many of you have advised, I'll slowly re-introduce them into my diet one at a time and see how each one affects me.

Overall, in just 3 days there has been an improvement in the way I'm feeling, even the headaches aren't as bad as they were. Unfortunately, the only thing that hasn't improved is the constipation!! Laxatives only seem to have a partial effect, I might have to try something stronger!!

Anyway, thanks again to all of you. Your help and advice is very much appreciated.

Josh

 

[sugarless sue]

One of the bug-bears of low carbing can be constipation. Make sure you drink plenty water during the day, at least 2 litres.

You could up the amount of saturated fats a bit as well that helps and try and eat plenty fibrous vegetables.

Discuss this with GP or Pharmacist as certain laxatives can affect your BG levels.

 

[IanD]

Great news, Josh, appreciation like yours shows that it is worthwhile keeping on the forum. You're not the first to be encouraged, & report improvement in attitude & control.

I have 'porridge' every day, but made from ground almonds, oat bran, wheat germ & milled seeds, mixed with Tesco's soya milk. (Milk is 5% sugar, soya very little.) You could try replacing 1/2 your oats with ground almonds. The ingredients I use digest more slowly than oats, & keep you feeling full longer, & do not spike your blood glucose.

Your test results indicate that you are at an early stage of diabetes, so that control mainly by diet is possible. Most diabetics would be happy with those results.

I eat lots of root veg, normally as a stew or casserole, with an stock cube, a generous squirt of tomato puree or 1/2 can of tomatoes, herbs, etc. I don't have a constipation problem - more the other way - but not a problem. There is a slow release metformin - glucophage - which may suit you better.

 

[Dobbs]

hi Josh,
sounds like you're doing great.
This forum is literally a life-saver - it's helped me enormously.
May I also recommend another site that was very inspiring for me, Jenny Ruhl's - phlaunt.com/diabetes/
between these two you'll get answers to pretty much everything you're worried about and learn to deal with the condition.
Good luck.

 

[Synonym]

Hi Josh

Glad that things are going better for you now. It takes time for everything to settle down after having had the high levels but you will get there! Keep doing what you are doing! 8)

 

[foxglove]

Hallo Josh.

I found that taking statins had a very bad effect on me too.
I was on Lisinopril and then put on another one but both gave me terrible indegestion. Then I was put on another one which was a very low dosage - but better than nothing , the doctor said, only to find that I came out in awful itchy red spots particularly on my arms. They became so bad I wouldn't take my cardy off even when it was really hot. Eventually saw a documentary on TV about statins and the problems some people have so decided to stop them altogether. My arms are nearly better now and I also realise how this medication was making my arthritis much worse!

I, too, have just found out how much better I feel after cutting out almost 95% of bread, etc. all due to the help I've had from this forum!

Keep up the good work.

 

[Herman lausan]

Its anybodys guess why you feel so bad. I agree with previous poster. Try a slow release metformin. Your symptoms are not the usual with metformin. But everyone is different.

Do you know what the side effects of a statin can be? Weaken heart muscles.