Letter from Dr Didi..November 2015

Angel attended clinic with the company of her oncology nurse specialist and her clinical psychologist.

Dr Didi was taken aback by Angel being in her wheelchair, but could not stress enough how extremely well the progress she has made with the weight battle.Bev said weight was not an issue for Angel to lose,she did her research online joined a group and introduced herself, gave a brief description of Angels medical issues with her rare syndrome and all the replies came back LOW CARB DIET, so no more than 90 carbs a day and result 2 stone 6lbs was lost.

Number off issues were discussed,symptoms of tiredness,achy muscles and musculoskeletal symptoms in sort can be explained by low growth hormone,thyroxine and cortisol (stress hormone), we have worked together assiduously and made hormone replacements that have made her hormone levels appropriate for her age.It is highly likely that a number of symptoms Angel has are due to the hypothalamic syndrome.


Hypothalamus is an area in the central core part of the brain just above the pituitary gland, which has a very important bearing on a number of bodily functions, centres in this area control

1  Appetite

2 Handling of energy

3 Short term memory

4 General behaviour

5 Anger and tearful behaviour

6 General energy levels

7 Control of body temperature

8 Sweating

9 Circulation to the skin

Angel has bouts of tiredness,aching pains in her muscles, episodic stomach ache, problems with memory and unusual oubursts,it is highly likely these symptoms are due to he syndrome as we have good evidence her original brain tumour was prominently encroaching on the hypothalamus.

Gait,stiffness and difficulty walking upstairs

Angel is walking in an unusual way,struggles walking upstairs.She has no proximal muscle weakness and no joint swelling,has a stiff gait with very little flexion at the knee and very little spring in her walk, so will be a rheumatology assemement.

Yet again more visits and another new clinic to add to everything else




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