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Hilary's Story

An Anecdotal Odyssey of Ill health….

I am 49 years of age, born 17/09/1953. I am head of art in a secondary school. I have two sons born in 1983 and 1984. In October 1990 I went to University to do a 4-year honours degree in fine art, fulfilling a long held ambition to teach my favourite subject. In my first year of university I fulfilled even my own wildest dreams by passing my foundation year with a first. I had always been very petite, with a tiny frame, tiny face tiny hands and feet and was very, very slim (although I ate well). I had always been a bit of a live wire. Prior to having my two sons I was 5ft 1”, shoe size 3 and weighed about 7 St 3 lb (dress size 8, bust 34c, waist 22” hips 33”.) I had been this size since I was 18. Post partum my body returned to a size 10, I was a little heavier than previously about 8 stones or just under. My shoe size was 3, a little larger bra cup size 34d and a bit larger waist 24” and hips now 34”. I naturally maintained this size from 1984 up to October 1992.

During the second year of the degree in the winter of 1991/2 I began an ill health ‘odyssey’ of countless trips to the doctors and specialists that has led me to the present day.


The journey starts in 1991.


In 1992 things started to get worse…


In May of 1993 I went abroad for two weeks on an art field trip. During these two weeks we all suffered from a very severe gastrointestinal bug of some sort, which was very debilitating (sickness and diarrhoea). During those two weeks I survived on very little food and took Imodium and electrolytes for the duration of my stay there. Many of our party returned home after the first week due to ill health.

From around the time I returned (May 1993) my weight started to steadily increase and a myriad of debilitating symptoms started to manifest themselves. The good health and vitality I had always taken for granted it seems now, in retrospect, to have abandoned me The headaches I had been suffering for the previous year turned into full-blown migraines, some of these were so bad I had to take to my bed. The severity of these migraines increased over time in frequency and intensity. I lived on Solpadine and at one point I had taken 72 Solpadine during one protracted attack


During 1994, my final year at university, the various symptoms came back with a vengeance. In all this was a very stressful year.


My symptoms had not improved. In September I found a teaching job. Around this time it became more than apparent that my 20-year marriage was over. I was enduring an increasing lack of support generally (to some extent due to my constant ill health and going to work, coming home and falling into bed exhausted). General ill health, and frequent migraines only served to exacerbate the stress within an already failing marriage. In July I was referred to an endocrinologist. In December of this year my husband left the matrimonial home and divorce proceedings followed. By this time my life had become my illness. I had an illness and no quality of life what so ever.


A number of years had now passed, and I was still suffering from the same symptoms as before. My divorce was over. I had a new job in a secondary school, a well paying permanent job that I enjoyed. My home life was good. My social life was still virtually non-existent, as I had not the energy to function outside of school. I would come home each night and go to bed. I was still suffering severe migraines and had been prescribed all manner of migraine tablets, which had little effect. My weight was still increasing. My legs still hurt. I could not climb the stairs without holding on with my hands. I felt weak all the time and the smallest effort tired me out quickly. I was hot all the time I still felt like I was bursting out of my skin. My right breast was still leaking. I still had the milk spots on my nose and cheeks each morning.

I went for the results of these tests and was told they were negative. The specialist must have seen the look on my face. I was devastated. He told me I didn’t want these test to come back positive and that this was a good result. It didn’t feel like that. I wanted a positive result whatever the consequences just so that something would be done to solve my still worsening ill health. At this point I first heard the word Acromegaly. He took my face in his hands and told me I didn’t look like an acromegalic, he had seen people with this before, I didn’t have the heavy forehead associated with this illness. I knew nothing of acrogmegaly. He said I could have hormone tests done in another department in the hospital (these were never done) Then he asked me what was bothering me most. Like a silly woman I answered my weight (at this time I was now a size 34 H+ cup and was being told by the bra dept in a local department store that they could no longer accommodate me)…what I should have said was my altered body image, meaning when I looked in the mirror I no longer saw myself. The specialist referred me to the Dietician in the diabetes clinic. This referral did not produce any positive result and there was no follow up. I was wrenched and felt twice as wretched. This time it couldn’t be blamed on depression as my circumstances had changed and the old stressors were removed. I felt my situation was now blamed on extra weight.


What was I supposed to do, I still had the symptoms I was still 5 ft 3 and had a size 5 shoe??????? I weighed at one point nearly 13 stones. I took on board what the dietician had told me. I tried to shift the weight by watching what I ate …I cut out the chips and crisps (well I had some occasionally, I am human) I started to swim, 20 lengths 3 times a week and bought a walking machine and did two 20 minute sessions on this 2 times a week. I started to loose some weight. By the end of this year I had shifted a stone.

But the exercise never got better, my strength never improved. It was a constant battle against fatigue. I still could not walk up the stairs without holding on and the other symptoms were still there, the worst of which was the painful headaches and sweating all the time. My legs were weak and my knees were giving way. I would go to sleep and wake up soaking wet, and shivering. I was still tired 24/7 and was sleeping when I should have been living.

I seemed to fall foul of anything going colds flu etc. and was always off work, or at work trying to survive till the bell went so I could get back home to my sick bed. During this time I was prescribed different migraine tablets that had no effect. I was still taking huge amounts of Neurophen plus. At the end of this year I bumped into a chair at work and banged my shin (I was always covered in bruises, I forgot to mention this) but no bruise came up.


During the first part of 2002 I was struggling into work with an injured knee (due to the earlier accident). I was receiving physiotherapy for this to no avail, about 10 visits in all. It was decided eventually that I needed a referral for this and needed a scan to determine exactly what the injury was. During this time I fell over three times and sustained some quite bad bruises and a torn tendon in my foot. I continued to limp through the next 14 months. I was bitten by an insect and had a lesion on my leg that was deepening and widening and would not at first heal. I was given two courses of anti biotic for this and it eventually healed although I had a severe allergic reaction to the bite and suffered sickness and diarrhoea and was off work again with this. I also had an outbreak of impetigo, which was also hard to clear up. I seemed susceptible to everything. In April 2002 I was off work with flu like symptoms and swollen glands. My son too was suffering and it was diagnosed as glandular fever. During this year I lost a stone in weight through ill health and generally eating very little. The remaining weight I am carrying has been impossible to shift. All the symptoms were still there only now it was difficult to know when they re-occurred if it was the old ‘monster’ or the new one.


I returned to work in January still feeling unwell, but reluctant to take any more time off, as my record must by now be appalling. Each day I struggled into work, by mid afternoon I was really feeling ill and some days doubted my ability to drive home safely. I would get home and fall into bed, not just tired but really feeling ill. I worked up to the first half term.

During the last two years I have suffered from a number of illnesses e.g. glandular fever (the first diagnosed, the second put down to a virus and the third lethargy) and the 2 operations and subsequent recovery. I feel I have never fully recovered from any of these things. I believe this is due to an underlying as yet undiagnosed condition that I suffering from.


Even without these diagnosed medical set backs the symptoms of my underlying illness are always present. These ‘sets backs’ have only served to exacerbate certain symptoms e.g. I was limping around for 14 months resulting in aching joints and general weakness (whole body), and recurrent sore throats (swollen glands), and Flu like feelings associated with glandular fever all worsened the general fatigue.

The Fatigue

The one thing I haven’t really been able to explain here sufficiently is the feeling of permanently ‘running on empty’. This started in 1993 on my return from my trip abroad and while I have days when this is not as prevalent, it is always present. Usually if I am stressed or tired (even ill) this becomes so overpowering that I actually am actually ill with it, and these feelings can also start with no apparent cause. It is not just a feeling of normal tiredness, more one of total exhaustion. I feel head achy, shaky inside and out, feel that I have not the inner strength to hold my body up. I have the ‘dragging’ weak feeling in my lower back, feeling sick, disorientated, light-headed, confused, unable to read properly, lose coherence both written and oral, become sound sensitive, and light sensitive At this point I would usually have ended up with a migraine.

However, since the removal of the facial tumour I have not suffered from a full-blown migraine attack although I have had one severe headache and other mild headaches and the feeling that it might turn into a migraine attack. Only sleep can offer relief. Of late I am waking during this sleep and when I finally wake fully I do not feel refreshed but feel strange and hot, and wonder if irregular heartbeats have indeed woken me up during my sleep? The other symptoms of this ‘fatigue’ remain ever present. There is no warning, no pattern to the onset, but I have often suspected it may happen after I have eaten. Sometimes a sugar fix can defer the symptoms, but this is not always the case. The fatigue is both insidious and debilitating.

The insidious nature of this undiagnosed illness has resulted in doctors treating individual symptoms and suggesting that it might be labelled as PMS, CFS/ME, or that I am suffering from SAD, that I am menopausal or that I am suffering from depression. I have taken all the medication recommended (with the exception of the tablets to reduce body heat as I had a parotid tumour and should not have been prescribed them) No doctor it seems will take regard of all of my symptoms, and whilst they acknowledge the growth, they discount it and will not consider the possibility that all my symptoms could have come from one underlying illness. I have been told that this is not Acromegaly, but it has been suggested by a doctor that it may be Cushing’s disease or syndrome. However none of the symptoms of Cushing’s appear to cause the growth that I have experienced.


After researching these conditions, I can in some ways understand that I might not immediately look like a sufferer of acromegaly, as my original size was noted by the maternity hospital as abnormal as I was so small. I explained at the start of this story how I was very, very tiny, undersized in fact. 5ft 1 size three shoe, 34 bust, 22 waist, 33 hip size 8/10 dress size, no bottom at all (I was built like a boy) with a tiny face and features. Thin legs and arms, slender hands. The growth and weight I have suffered serve, in effect, to make me more a ‘normal’ size.

Ten years on from the initial symptoms, I am 5ft 2.5 inches my shoes size has now increased to 5.5/6 and again I cannot get my ring off my finger which leads me to think that I may still be growing. My small frame is carrying excessive weight mainly on my trunk (I still look like I am 9 months pregnant) I cannot find comfortable clothes to wear if I buy large sizes the armholes gape and the straps and the sleeves are too long. (bras are impossible) If I buy trousers to fit round my huge belly the hips and legs don’t fit (I am not carrying any extra weight on my upper chest, legs and arms or bottom) I shave my legs more frequently and yet I have less hair on my legs than before. My hair has dried and now has a natural curl, where previously it was oily and straight and would not even hold a perm. I do have times where the natural oiliness returns. I have hard skin pads on my heels. I have hard skin pads on my hands (on my knuckle where my little fingers join the hand, these can crack and bleed) I have darkened knuckles on my hands, but these can only show in shaded light. I have unusual raised spots on the back of my hands. I cannot grow my nails they are like paper and break off easily and offer little protection they are so weak. My hands look fat and podgy. I have had a number of skin tags removed at the hospital, one on my eyelid is still there, there is now another on my back. I have a heightened facial colouring and broken veins, my facial skin is excessively oily and the ‘milk spot rash’ is ever present on my nose and cheeks. My eyebrows do not grow at the ends and they appear to have thinned. My eyes weep from the wrong corners. I have fine down on my upper lip. My facial features are heavier nose and lips and yet they appear small lost in a huge round moonlike face. There are two patches above my eyebrows that appear like darkened skin these are hard to explain, but are there none the less. My face is just huge, the actual shape of my face has changed the bone structure looks heavier and the features are coarsened. I now have a gap between my front teeth, I bite the inside of my mouth and my tongue and my teeth don’t fit together anymore. I have started dribbling when lying down.

The worst of it is though, I still look in the mirror and I don’t know who is looking back at me, and I cry! I feel as if I am going mad.


Since writing this Bio I have Changed doctors and have been referred to a different Endocrinologist (he is super) at St Bartholomews hospital in London.

I was admitted to hospital for a week of tests

The endocrinologist told me that he thought I was Insulin Resistsant and recommended that I should go on a diet ‘not as strict as the Atkins diet’ but similar in order to reduce sugar and carbohydrates. Since then I have received the confirmation of very severe Insulin resistance

Fasting Glucose 5.0 mmo/L
Fasting Insulin 28.5 mU/L [or x 7 = 199.5pmol/L]

%pancreaticB-cell function = 233.1 %
%hepatic and peripheral insulin sensitivity =27%

He said that such high levels of Insulin could account for the growth of soft tissue. He has said that I do not have Acromegaly because the IGF-1 test did show anything.

I am booked for heart echo cardigram and an MRI and also a food Cushing’s tests and Cyclic Cushing’s has not been ruled out. I will post an update once these have been done.

I would love to hear from anyone who can comment on my story as I feel that I am not alone. I will reply to anyone who can get in touch……and thanks to Mary O for a great site.

Update: October 4, 2003:

Hello again to everyone,

I have just returned from Bart's after a second week of tests.

The Cushing's tests were done again and all were 'unremarkable'. (Hate that word) They also ran a food Cushing's test and that was also, 'unremarkable'. I thought they would be....I have always believed it to be Acromegaly.

The answers I so wanted are not clear cut...I have PSEUDO ACROMEGALY AND SEVERE INSULIN RESISTANCE

It seems that I have Very Severe Insulin Resistance, the numbers are so high it even puzzled the Endo as I am not as obese as he would expect to see with such high numbers.

Although he did concede that having been so very tiny to start with 5ft 1inch size 3 shoe and 7 and a half stones, that I had almost doubled my weight at a peak of nearly 13 stones. Now 5ft 2 and a half and a size 5 and a half shoe) that indeed for me this was a sizable gain.

It seems that exposure to such very high amounts of insulin can cause the body to grow, as insulin can behave in a similar way to Insulin Growth Factor 1 (IGF-1) (Pseudo Acromegaly )

However, I have been in a sort of remission since the tumour was removed from my face (September 2003) and while he has never heard of this type of tumour causing this problem, he is open to the idea that it (or the gland ) may have caused the Acromegaly type symptoms, as the remission began after the removal of the tumour. My face is now noticeably thinner, my waistline is more defined, and my ringsize is now 5 sizes smaller. It seems I might never really know for sure, unless the histology and tumour are still available, to prove otherwise.

While the growth can be explained by both of the aforementioned, the severe fatigue and flu like symptoms, and feeling ill all the time were not attributable to the above. Although this and the weight gain had been confused with Cushing's symptoms.

On the last day's stay, having been suffering with a bladder infection since June, the registrar offered (unknowingly) an answer to this. It seems that given I had suffered with Pyelitis(1983), I should have been followed up with an ultra sound scan of my kidneys, and urine cultures. It seems I probably have an underlying long term kidney problem. I am now waiting for an emergency ultra sound scan. I am on Nitrofurantoin for the bladder/kidney infection which must be followed up with numerous cultures to make sure it is resolved this time. until this is done I will not know for sure. Therefore l would like to mention Doctor Ken Mosid (the registrar), who gave me the final clue to years of ill health. He recognised that underlying kidney problems may have been due to my having had Pyelitis years ago. This should have been followed up with ultra sound scans and general monitoring of kidney function.

I have been started on Metformin to help lower the insulin Restistance and to help reduce the weight.

I have not had the results back yet for the MRI of the pituitary gland and the petro sinus cavern, or the Echocardiogram.

I am still feeling very unwell, from the kidney/bladder infection, but I am now hopeful that this can be resolved in due course.

I have nothing but praise for the Endocrinologists/nurses and staff in the specialist centre at Saint Bartholemews Hospital in London, who believed me when I was so very ill and desperate and quite frankly at the end of my tether. I was never doubted, talked down to, or treated unsympathetically. I have nothing but praise for the work they are doing there in what is clearly one of the foremost centres of excellence for these endocrine conditions.

I would like to especially mention here Doctor Shern Chew, who's support in my regard has bordered on 'saintly'. Please let us have more Endocrinologists like him. He must be our British equivalent of your Dr. Friedman. Not only an eminent leader in his field, but moreover an open minded and compassionate human being.

I hope now this is the final stage of my 'ill health odyssey' and while I have have not got Cushing's I would like to thank you all for your support and advice along the way.

I hope that I will still be a welcomed member on these boards, and hope that my own experience and knowledge that I have gained along the way can act as a useful resource to others. I would still like to offer any help and support that I can to anyone trying to get diagnosed, especially in the UK where I am happy to act as a telephone buddy to anyone needing support and someone to believe in them. (There are a few of us here now, in touch with each other.)


I pray that you all can find the answers that you need to put your minds at rest, the diagnosis you all deserve, and the treatment you need.

I will always be here for you as you were for me.

Thanks to you all again (love you lots)


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