Self diagnosed need advice

[melonuk]

I stupidly posted this in the introductions last week and after realising, I posted up an introduction and decided to put my original post here

My name is Helen and unfortunately, I don't have a formal diagnosis though I was recently tested (hba1c and fasting, results were right at the top end of normal, i'd been low carb for a few weeks at this point). I've actually been trying to find out what's wrong with me for the last 3-4 years and I came to the conclusion of blood sugar issues purely by accident when the last specialist I saw (cost hubby a small fortune) told me nothing was wrong, everything was in my head and I most likely would be looking at seeing a psychiatrist for the rest of my life (I think he was implying I was bipolar, all blood tests came back normal and he did A LOT).

I've always eaten a well balanced diet and am very fit so diabetes never even occurred to me (please excuse my ignorance, I do of course know differently now)

Anyway, to control my moods I decided to eat a clean, organic diet and cut out sugar as much as I could. Mood swings went away completely.

I don't want to go on too long (it's a very, very long story), so I will just summarise now.

Obviously, I realised there was something going on with sugar and ended up reading about diabetes, I came across the symptoms and had a bit of a shock to say the least....

Numbness/pain/tingling in hands/feet........had this for about 3 years or so
Thrush.......despite many hardcore treatments, never went away. Had this for the last 3 years also
Mood swings.....Always been prone to them, but escalated severely beginning of this year.
Frequent urination.....had this for years so thought it was normal, not unusual for me to go 15 times between breakfast and lunch
extreme thirst........started beginning of this year
Fatigue.....Started in my 20's but just in the afternoons and some evenings. For the last 2 years felt drained after every meal
eye pain.....started the beginning of the year
Slow healing........didn't realise just how slow it was till I started getting my post meal spikes and fasting glucose down. It's sped up no end
Itchy skin......started beginning of this year
Ravenously hunger/sugar cravings......had this the last 5 years
Fungal infection on my toenails for the last 4 years that wouldn't go

Now I don't know if this is related and it still baffles me. Around 6 years ago I went from 136 pounds to 105 in the space of of 6 months without even trying, in fact, I was eating everything in sight.
Just as mysteriously, I gained a whole stone back in the space of just 1 week about 3 years ago. I then lost around 10 pounds quite rapidly about 4 months ago or so (during the severe mood swings, though I was eating well). I was actually very pleased about this as I hadn't been able to lose anything since the rapid gain no matter what I did.
I'm also still slightly yellow (not my eyes though, and it isn't my liver as tests were normal)

Once I realised what was going on (after what seems like pretty conclusive evidence to me) I read about low carb diets and decided to give it a go. Literally within days, All of the above problems had subsided significantly, which again, reinforced my theory and I started to monitor my levels with the blood sugar monitor I bought some years ago (never really used it back then, tried it once, saw my fasting was in the normal range and never picked it up again after that). I didn't test my levels properly until i'd been low carb for a weeks or so and started testing post prandial levels. They weren't astronomical by a long shot, but often in the upper range for someone on a regular diet (though one reading was 9.4). So I can't help but wonder what my post meal spikes were like when I was eating a regular diet.

Sorry this is long, but it's pretty obvious (I think hehe) that I have blood sugar probs, call it pre-diabetes or diabetes (symptoms seem too severe for it to be pre-diabetic in my opinion, but i'm no expert).

I went back to my GP and for the first time in years, I wasn't treated like a hypochondriac idiot, He saw the connection and I did yet another fasting and hba1c which came back at the high end of normal (yet again) and unfortunately, he wouldn't do a glucose tolerance test. Also, I have been experimenting with certain foods and if the carbs are a bit too high, the first thing I notice is mild numbness and tingling in my fingers (it wakes me up at night), the eye pain comes back (only mildly) as does the thrush.

I am of course, still in the early stages of diet control so sometimes my numbers can be a bit erratic, particularly when I experiment with new foods (I always test at 1 and 2 hours post prandial).

I have read of a few cases where people have have been diagnosed as diabetic, though they have had 'normal' fasting and hba1c.
I guess the advice i'm looking for here, is should I try and get a diagnosis? will it benefit me even though I have things pretty well controlled? I suggested monitoring my glucose levels after regular carb meals and giving the doctor my results and his response was 'you know your body, you know what is helping you feel better, there isn't really any point' I'm thinking that maybe he is right, I am feeling the best I have done in many years so is it better for me to leave things as they are?

I Test my fasting every morning and the other day it was 6.2, I've stuck religiously to low-carb, but am assuming it was a few too many nibbles the night before (low carb stuff). It averages about 5.3 since low carb but am generally seeing 4.8-9 more frequently now.

My Aunt was diabetic and my dad was pre-diabetic and told to get his sugar down a few years ago and he is slim (my aunt wasn't). Am I looking at something genetic?

Also, i'm wondering if there is anyone out there with a similar story?

Thanks for taking the time to read my very long post, any advice appreciated

Helen

 

[charon]

Could be a lot of things but diabetes is a possibility.
Could also be a food allergy and you have now changed your diet. Could also be another illness caused high bg.

As long as you feel better and are happy with the diet then carry on.

The only way to tell if you are diabetic is to test how long it takes for sugar to clear out of the system. As you are low carbing the hba1c will appear in the normal range - I don't think doctors take that into account.

Be careful, it's easy to find symptoms and fit them to a disease.


Sent from the Diabetes Forum App

 

[Squire Fulwood]

It seems to me that you have tried to get a diagnosis already and it has not succeeded. In one or two instances it sounds like your concerns have not been listened to.

The question now is what is the disadvantage of not having a formal diagnosis. Fortunately, if we leave your other symptoms aside for the moment your blood sugar levels look like you have them under control and if you continue to read the posts on this forum you may get even better at it.

A formal diagnosis will give you free pills and a lot of appointments. Even more appointments if you are at retirement age. Some of the pills can come with side effects which are worse than the diabetes. At your blood sugar levels you are unlikely to be prescribed anything very powerful.

There is no reason why you shouldn't try to get a formal diagnosis but even if you succeed I suspect you will disagree with the dietitian's advice as some of us do and go back to eating and drinking in a manner which you have found suits you.

The bottom line is that many of us type 2's and pre-diabetics with a formal diagnosis are essentially treating ourselves anyway.

 

[izzzi]

Hi Helen,

I think you know best.
You have changed your diet and formed some kind of control. Could be that your controls are revealing results that confuse your GP's etc; to believe your not Diabetic.
There should be a expert consultant available to analyze exactly what is going on with your health and simply put your mind at ease instead of leaving you in the dark.

Yes you need to be diagnosed properly to ensure that the controls you are taking are working for you and not the reverse.

Good luck

Roy.

 

[SpaceChick]

I have had High Blood pressure since my mid 20's and so have a year blood test to check my kidney function. During that blood they also test my fasting cholesterol and fasting blood sugars.

My fasting blood sugars were always completely fine. Then 4 years ago I got swine flu, and had some heart issues as a result. My annual blood test after that showed an elevated blood glucose but not hugely so, had a few high end normal readings, then my reading this summer showed an elevation above normal again. This 2 elevated readings over 4 years is what made them send me for a Glucose Tolerance test.

Had the test, and my glucose tolerance was incredibly elevated (in fact I fainted at the hospital as my blood sugar was so high) and I was given my diagnosis of Diabetes, probable 1.5.

My doctor and I sat down and discussed my diet, and she reckons I have accidentally been my own worse enemy!! As I have never eaten a lot of sugar, don't have processed foods (I make everything from scratch including my granary bread) and have eaten a low GI diet she thinks I did enough to keep myself just under the radar!! They think my diabetes was as a result of the swine flu, hence my probable 1.5 diagnosis (my health board have withdrawn funding for the Gad and C peptide tests, so I won't know for certain!). I also cycle 3 or 4 times a week which also probably helped keep my BS in chek.

So, my story is not massively dissimilar to yours. Your fasting BS can be at the high end of normal if you have a good diet and exercise. However, I did have lots on random issues that now make sense.... I take AGES to heal if I cut myself, I'm going to the loo several times more than anyone else I know, and I have finger tingling in the morning when I wake up.

I'd push for a glucose tolerance test if I was you.

 

[Squire Fulwood]

This thread has prompted a memory from the early days.

I got diagnosed with .....whatever. At that time I did not understand the numbers or what was happening for the most part. I can remember the doctor saying "13 is quite high you know". To this day I don't know what they measured. It was not an OGTT since I have never had one of those.

When sent to DB's clinic I had a blood sample taken and was given two sheets of dietary advice and told to eat healthily. The two healthy diet sheets conflicted somewhat and neither of them were for diabetes so I didn't pay much attention.

The period before the next set of tests involved wine, chocolate, take aways and so on. It felt healthy enough for me. After the next blood test I was given a meter and put on Glimipiride. After using my meter (a lot) and taking the pills for a while I was taken off medication since my readings were low and the nurse patted herself on the back.

The moral of this story is that if you have diet control you can get the nurse to give you pills and take them away almost at will. I don't advocate sodding the nurse about but she does seem to be treating my dinner and not me. Also, I don't want to put ideas into the head of the OP because it would make the symptoms come back.

 

[FurryCub]

Why would you want a diagnosis of diabetes?
The bg/hba1c levels and all the Drs have indicated you're not diabetic. Go with that. They would be fobbing you off if they gave you pills with your levels.

A healthy diet is just that, it's going to make you feel healthier/better, enjoy the benefits of it. A healthy diet and a bit of exercise helps many different illnesses, but it also is what your body needs anyway to work correctly.

With diabetes T2 you end up being stigmatised, higher travel insurance, declaring it to different people, taking pills every day. Depending on pills you may get hypos. It's not fun and I certainly don't want it.

It sounds like even if you were diabetic the best thing would be to carry on as you are because you feel better.

Just relax and forget about diabetes.

 

[melonuk]

Thanx for the replies all a bit for me to think about there.

For the moment, i'm thinking I will keep monitoring my levels. I'll only go back to the doc if the complications return and my numbers start to go up.

I was thinking of pushing for a glucose tolerance but the thought of one scares me a bit to be honest, especially with how I was after I overdid the champagne the other week! (on an empty stomach as well but it seemed like a good idea at the time )

Incidentally, I had very high cortisol several years ago due to stress (which I made worse by too much intense exercise) and gluten intolerance (I at least managed to get a diagnosis on the gluten) so I haven't had gluten for a long time (digestion improved a lot) and have no other food intolerances.

Either way, i'm currently feeling great and will monitor and go with the flow

Thanx again and was nice to meet folks

 

[carraway]

Interesting posts.

You could do your own Glucose Tolerance test using Lucozade? I think I have the links somewhere, it is so many ml of lucozade per kilo of body weight.

Listen to your body and do what you think is right for you

cara

 

[Daibell]

Hi. Your sugars don't look too bad. I wouldn't push for the GTT as the HBa1C is more useful in many ways and your meter will tell you if you have excessive sugar spikes. I would carry on with the low-carb diet (careful with organic food as some of it is not healthy i.e. loaded with sugar!) and check with the meter 2 hours after a meal every so often. Morning tests can be affected by overnight liver dumps of glucose so checking 2 hours after a main meal and perhaps just before as well will tell you the effect of specific foods. If your sugars are within the 'normal' range then you have nothing to worry about and it will mean that any remaining health symptoms are not diabetes related. If you start to have sugar spikes frequently above, say, 8.5 then see the GP again for another HBa1C or GTT.

 

[melonuk]

Interesting posts.

You could do your own Glucose Tolerance test using Lucozade? I think I have the links somewhere, it is so many ml of lucozade per kilo of body weight.

Listen to your body and do what you think is right for you

cara

Thanks Cara, I'll do a search for that and think about giving it a go .....maybe .......