Visiting a professor

11th March 2012

It has been a miserable weekend - I must have caught a cold on the train or tube coming back home from a business trip to Leeds. I have man-size Kleenex tissues to keep me going. I haven’t had any energy to go out, apart from a quick trip to Sainsbury’s to get some food and medicine for myself.

Whilst I was feeling miserable, my housemate, who by the way had only a couple of months earlier separated from the love of his life fiancée, brought back home another girl called Claudia. Apparently, they knew each other previously, and spent the whole weekend together in the flat. I was in my room coughing to death and I heard how Claudia kept screaming with pleasure, or that’s what I was assuming it was unless she was diabetic too :). Well sex is another issue for diabetic people or rather the lack of it, but I possibly will talk about it later :). I am surprised how quickly my housemate got over her fiancée; I generally find it quite difficult to get over emotional things but not sure if it has anything to do with diabetes.

Staying on the subject of diabetes and housemates, my doctor had referred me to an endocrinologist, due to my sugar readings being 63mmol with the target being 58 mmol or something like that. My housemate works for a private surgery and he offered to book me an appointment with a good professor at his surgery - I am always having trouble with fully understanding and controlling my diabetes and I thought what would be better than a Professor. At the time, I did not even know that there were specific professors for diabetics, also called endocrinologists and it looks like my housemate did not know it either! He booked me to see an endocrinologist but it turned out he specialised in thyroid! By the way, he charged £300 to confirm that I did not have thyroid problems and he did my initial analysis and referred me back to his diabetic endocrinologist professor colleague to nearby private hospital.  Not to mention, I had to also book a 1 day holiday not to give diabetics a bad name. Paid £35 car park charges in central London and also £10 for congestion and took a friend with me to support me :). Well let’s hope I will get some money back from my insurance. Because, I cannot deal with the stress telling him, you moron booked me a wrong doctor and argue with him, who is right and who is wrong. Sometimes, you feel it’s just easier to pay some money and move on.

Thyroid professor said in his letter to me; … “although trained in diabetes, I have not practised it full time many years and I do not consider myself to be a sound source of diabetes care over and above that of a competent General Physician. She is 34 years old, just over a decade ago type 1 diabetes mellitus was diagnosed. Her recollection of events is rather hazy, but she does remember weight loss and being told that her capillary blood glucose was 40mmol. It seems that she may have been discharged from an endocrine clinic in Reading in a rather punitive manner after a single missed appointment, and what emerged during quite a lengthy consultation was a dynamic in which hypoglycaemia is somehow her fault. I am referring to will be helping her to wrestle control back, such that she fits the condition around her life, as opposed to her life being a slave to the unpredictability’s of glycaemic control.

By her own admission, her life is a little chaotic in that routine and order do not come naturally to her. Her diet seems to be reasonably sound, although there are some possible areas for improvement. But even the against the above background, I thought she was doing pretty well with her condition. Her weight is stable, she has not had regular episodes of decompensated acidosis, menses are regular, she has no immediate plans for fertility and it was not clear to me whether she was robustly plugged in to regular retinal surveillance. She continues twice-daily basal insulin (levemir) and Novrapid around the time of each meal, but it was not clear to me whether she understood the principles of anticipatory insulin, as opposed to reactive/rescue insulin.

I do not think it clinically appropriate at this stage to be looking for coeliac disease, thyroid disease or glucocorticoid- related diagnoses, which can sometimes lead to erratic glycaemic control. Rather, I though the situation should be handled as though the diagnosis of type 1 diabetes was much more recent and she was in the learning/empowerment phase. To this end I have given her a simple programme, which will not be too intrusive, of monitoring some pre and post prandial finger glucose measurements. I have encouraged her to buy a book written by Dr Rachel Besser on how to live with type 1 diabetes, which is actually aimed rather more at the paediatric population but the message is equally applicable to adults learning about diabetes. With these two things under her belt, I think she should try to get an appointment with Professor M. sometime towards the end of March to take things. With the right help, I think she is going to do extremely well.”

Except few misinterpretations, I think he is spot on. I do nothing at all about diabetes after 13 years of plodding along with good old NHS support for diabetics. Well, private diabetic care efficiency is yet to be seen of course. This first attempt was a bit of a disaster.  

Old Times

My mum and dad’s recollection of my illness are quite hazy. Although, they are both teachers and have daily interactions with various children they said they knew something was not quite right but could not link my behaviour/lack of energy directly to diabetes. You assume they would be spot on something like that but no. I also have a brother at home to compare to, so I potentially had had diabetes undiagnosed for over ten years. How I lived was perhaps was a miracle but how no one could see that I was ill was another miracle!

 I am not sure whether it is ignorance, whether parents/ people are too busy with their own worries and cannot see what’s wrong in front of them or whether they just don’t want to accept that their children might get labelled with a disease, who knows. If you ask my opinion, I felt that it was ignorance and no one really cared about me. That kind of feeling made me feel even worse and sicker I think. I could see my brother, going to a private university and my mum & dad fully supporting him yet there I was, a miserable girl stuck in her small room crying and wishing to die with no hope. My dad says he did not see anything wrong with my behaviour and felt many teenagers lock themselves into their rooms.

The most important thing is education and awareness of course, as I did not have anyone with diabetes in my family no one seemed to even having considered I might be diabetic. Of course, now that I have been diagnosed, for example if my brother’s child had similar symptoms I am sure they would be more alert. They know what kind of symptoms might occur and would not dare to just ignore them.

When I have chat with them about symptoms and whether they notice anything at all, they say well ‘you were not a very energetic or a switched on child, you were walking a bit shaky but we thought it was because of your flat feet :). Well, you would ask for a chocolate and couple of hours later ask for a new one and I would get angry saying, I can’t keep up buying chocolates for you are not a kid anymore you know!

My dad reckons I was much more switched on as a child up to the age of 12. He says after that my eyes did not look quite right :). He remembers I almost had a pointy/weird eye and my eyes were wandering and not quite there most of the time. My mum also recalls taking me to an optician and they could not get a correct reading. She said one week we went and they gave a reading and the other week we went they gave a different reading so I had to keep changing glasses quite often.  On reflection, my mum says she cannot believe the eye doctors did not refer me to a diabetes check. In the end they said that I might be making this up or was maybe too young to understand the importance of this test and then gave me eye drops and glasses. My mum accused me of making up my eye readings to get glasses for years! She was convinced that I was jealous about one girl’s glasses and wanted to get some too. I can’t remember the full story to be honest, all I remember are the black ugly cheap frames which mum used to buy for me, and which I did not wear. Me and my mum did not get on very well as you can imagine. She is a harder battle than diabetes :)

My mum also recalls one of our neighbour’s children being diagnosed and we were only a few years apart and she thinks that I possibly had diabetes around the same time but somehow did not get the correct diagnosis.  I also remember going to their flat, and her mum was making him to show us him checking blood sugar levels and somehow he was shy and embarrassed about it. His mum was also complaining about his dietary requirements and how hard it was to get it right. His grandma had diabetes and he got diagnosed after he went into a coma. His dad also left to go to abroad around the same time like my dad. Poor boy, I feel sorry for him, hope he is doing well these days. I think that because he was diagnosed at the early age and got full support from her mum controlling his diet, he might have had adapted better than I have. Let’s hope so for his sake. I believe he was around 11 years old when he was first diagnosed.

My parents also recall a time when I collapsed when I was around 7-8 years old. I was attending a school assembly and collapsed and did not feel good and was taken into ambulance. They gave me some water and food and I felt all right afterwards. To be honest my memory is not very clear on this event but I remember eating some food and feeling much better. My mum remembers telling me that I had not eaten any breakfast that day. So, anyhow, I did not get any further checks to investigate this issue.

Also, in another event, my blood or urine test came up as diabetic with high sugar readings. I was then around 13 years old.  I remember this because, as soon as I heard, I thought God please do not make me a diabetic person, the only thing I enjoy and love in this life is chocolate and sweets :).  I also remember having read that boys are more likely to get diabetes so I thought it could not really happen to me. If someone had to get it, it would more likely to be my brother. But of course, we were all wrong! Rather than any further investigations, the health worker claimed that they had a new starter and he had messed up people’s test results. He said I was too young to have anything and looked OK. Thanks to him of course, my life deteriorated over the years. If he had been a bit more vigilant in his work, or if my family had been a bit more knowledgeable about diabetes, they would have had carried out a couple of further tests to make sure everything was really OK, rather than making assumptions. Of course, as the time goes by, the diabetic research, understanding and awareness are increasing but I still feel there are lots of untreated and undiagnosed cases carrying on with their miserable lives and wondering what is wrong with them.  In addition, since the health advisor confirmed that I did not have diabetes, I did not really think twice about diabetes again. I always assumed there must have been something else that was wrong with me. As helpful as health workers can be, do not take their word for it - get a second or third opinion and further tests done, and listen to your own body and be persistent in following it up.