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Denise's Story

Hi All, Well, I hope this helps someone. No health issues or excessive weight until I reached 38 years old except for 10kg weight gain after 2nd child.

I have 2 children and had no major issues with either pregnancy. I was 85kgs at 9 months pregnant with 2nd child (1986), and was induced due to high blood pressure. I reduced to 70kgs by 1992. Played tennis 2-3 times a week, worked, studied, took care of small children and led a fairly active life.

In November 1994, I had an appendectomy. No complications.

The following year, 1995, I kept having periodic flu like symptoms throughout 1995 putting me in bed 4-5 days each month. No head cold of anything just aches and pains throughout my body. Weight was 70kgs.

From January 1996, I started to get sick all the time. I’m barely able to get out of bed, with extreme fatigue, and weight gain from 70kgs to 96kgs in a 6 months period. Muscle aches & pains, bones creaked, flushed red face with skin – coarse and dry/rashes, periods were move heavy and become more frequent, Sleep apnea (so bad, husband moved to another room, visits occasionally hahaha), difficulty concentrating, forgetful/foggy, hair – thinning coarse and dry, loss of pubic and underarm hair.

I had appointments with doctors on a regular basis. Kept saying I was sick. I was told there was nothing wrong with me, to change my diet and lose weight.

Still symptomatic 2 years later. Still making appointments with doctors and being told to change diet and lose weight. Weight increases from 96kgs to 102kgs from June 1996 to June 1998.

In June 1998 I went for antibiotics for ‘ulcerated cervix’. I am still symptomatic. Blood pressure is 185/110. I was diagnosed hypothyroidism (Hashimoto’s autoimmune thyroid disease) and prescribed Thyroxin (T4 medication).

Visit 1st endocrinologist September 1998 and continue seeing until 2000. Endocrinologist said there was nothing wrong with my thyroid and that I was properly medicated.

I am still symptomatic and seeing same GP from July 1998 through to Feb 2002 interspersed with visits to other GP’s. I was sent for tests to determine abdominal pain I suffer from periodically. Pain puts me in bed for 3-4 days a month usually around ovulation. The rest of the month isn’t much better due to fatigue, aches and pains.

Colonoscopy, ultrasounds, CT scans done from March 2000 through to February 2002.

Hospital visit Christmas morning 2000. Hands & feet swelled. So painful I could barely walk, and a red itchy rash over entire body. Current weight is 102kgs. No treatment or diagnosis given.

During 2001 I am still symptomatic and now have back pain. Visit regular GP as well as other GPs. Thyroid meds increased. Suffer again from headaches and pain in back of head as well as continuing symptoms.

In August 2001 5mm CT abdominal scan shows 2cm tumour on left adrenal gland. GP says it’s an incidentalnoma. Visit GP again in November 2001 distressed, not well. I’m sick of being sick.

On 24th December 2001, GP’s office rings for me to see doctor. GP prescribes blood pressure medication (first time offered) and refers me to adrenal specialist. Start having chest pains.

Appointment with 2nd endocrinologist, January 23, 2002. He is testing for Cushing's. Not happy with this doctor and don’t return.

February 2002, 3mm CT abdominal scan shows 2.5cm tumour on left adrenal gland and right adrenal gland described as hypoplastic.

Symptoms. Chest pains, weight 103kgs, high blood pressure 150/100, abdominal pain/bloating, muscle aches & pains, bones ache, backache (spine and lower back), extreme fatigue, flushed red face, irregular periods/early/late/heavy, sleep apnoea, difficulty concentrating, forgetful/foggy, hair – coarse and dry, skin – coarse and dry/rashes, eyes – sensitive/sore/blurred, ears – loss of hearing/earache, depression.

Provide 1st endo with all results completed (got copies from pathologist) and 1st endo orders more tests. Complete tests and I ask 1st endo about natural thyroid extract (NTE). 1st endo said I did not need NTE for thyroid condition as there was nothing wrong with my thyroid. It was properly medicated with T4 meds. There was also nothing wrong with my adrenals. If I still had symptoms it had nothing to do with my endocrine system and he told me to go back to my GP and get a referral to a gastroentologist for the continual anaemia and a rheumatologist for the fibromyalgia. He said to go and have an ultrasound on my heart to see how much damage had been done???? And of course, lose weight. He said I had diabetes and prescribed medication. I had told him I was prescribed a medication for high blood pressure but this had caused chest pains. 1st endo did not prescribe another med for high blood pressure.

I am still symptomatic. Chest pain, ringing in the ear, mouth ulcers, mood swings, inability to cope with stress, backache, don’t heal very well, nausea, head pain (back of head), neck pain (left side), headaches, swelling hands and feet, high blood pressure, anaemic, weight 103kgs. Not to leave out the fatigue, muscle aches and pains, rib and joint pain.

Make an appointment with another local GP and request referral to gastroentologist and rheumatologist. GP does not give me referral but sends me for an endoscopy. Endoscopy shows minimal reflux. I suffered for a short period with choking sensation. No answer to constant anaemia or anything else for that matter.

In June 2002 I see new GP (specialist GP, hard to get into and see), who prescribes NTE. He says I do not have diabetes (borderline) and to stop medication. He places me on BP meds. I’m feeling much better with NTE. Eliminates depression, extreme fatigue (except when stressed), hair returning to normal but still have scaly scalp, skin improving though I still get rashes, mood improved, fibromyalgia mostly gone.

In September 2002 I get sick again. BP meds have not lowering blood pressure.

After starting NTE, I was well for 6 weeks. Then I got sick again for 6 weeks. Relatively well at moment other than bone pain. My remaining symptoms are: I have painful knees and have started to get pain in top of feet and front of ankle. Palms of hands and soles of feet feel swollen, cluster headaches and other numerous pains randomly in bones ie., elbows, wrists. If I have the slightest stress (good, bad, whatever), I become totally symptomatic with all previous symptoms returning including extreme fatigue and fibromyalgia. I have reduced my work hours to part time.

23 September 2002, I have appointment with 4th endocrinologist.

October 2002, I suppressed for the dex suppression test though at I have learnt it is not a good test to determine cyclic Cushing’s as it has given a lot of false/negative results and later, people have been diagnosed with Cushing's. False negatives can be due to low cortisol binding globulin (CBG) and slow metabolism. My CT scan showed 2 tablets in my intestine and stomach. I had read obese people tend to have high cortisol and high CBG and ‘cushing’s’ people have normal cortisol and low CBG. This would only make sense for adrenal tumour where healthy gland shrunk.

4th November, appointment with 4th endo. Endocrinologist gave referral to surgeon for removal of left adrenal gland. Surgery scheduled for 27th November 2002.

Extract from Victorian government (Australia) health website

Tumour of the adrenal gland.

This form of Cushing’s syndrome is also known as Cushing’s disease. A tumour on one of the adrenal glands triggers the production of high cortisol levels. The tumours are usually non-cancerous. The pituitary responds by dropping its level of ACTH hormone, which in turn causes the healthy adrenal gland to shrink.

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