Home

Lee B, Ectopic (pituitary and lung tumor) Bio

Leave a comment

Another Golden Oldie, Lee had both pituitary and lung tumors.  This bio was originally posted 06/07/2008.

~~~

Whee1 where to start!. During 2002 noticed that I had extreme daily hair loss, weight gain even while on diet, depression and general feeling of not being well and decreased sleep and change in sleep pattern. Went to a psychologist who said I was “sane” and diagnosed me with depression related to organic disease.. but what? the fatigue increased – looked like a walking zombie and could barely make it through the day. I worked in a very high powered job. Started experiencing rapid heartbeat – and landed up twice in the ER. Before going to the cardiologist I had a chest xray and saw a shadow on my lung. As an ex-smoker I was concerned and ordered a CT with contrast. I am an RN with a background in Oncology. to cut a long story short, landed up at the oncologist who agreed with me regarding the need for a biopsy. I had to fire my GP who told me to wait another 6 months and do a repeat. I diagnosed myself with a carcinoid tumor, had the upper part of my right lung removed.

I kept on complaining of increased symptoms – moon face, fatigue, headaches, joint pain etc. Got diagnosed with sleep apnea. My oncologist pooh poohed everything but further staining of my lung tumor indicated that it was secreting ACTH – Cushings!

Had a brain MRI – my sella is totally empty and I have a 7mm tumor – not sure what even after 3 MRI’s. Had a full endocrine workup – the endocrinologist siad everything was fine! HA! Turned out I have Hashimoto’s with thyroid cancer – just had that removed. My thyroid was so swollen including the lymph nodes which made me suspicious for metastases- that they could not visulize the Recurrent Nerve – so now I have permanent vocal cord damage and cannot work.

Before this I decided to go to see Dr Friedman. What a blessing. I have adrenal insufficiency, he thinks intermittent Cushings from another carcinoid tumor, who knows where and extreme growth hormone deficiency. I need to have the pituitary tumor removed but am awaiting recovery after my thyroid operation.

I feel terrible – cannot really function, cry all the time, have severe headaches, joint aches, nausea etc. I hope and pray that the pituitary operation will fix up my problems.

Sonja D (Kiwi), Ectopic Bio

1 Comment

Diagnosed in 2003 with a Carcinoid Lung Tumour which was surgically removed in May 2003.

After a number of years of “not feeling myself” and consulting with the family doctor, it wasn’t until I showed him hair growth on my face and asked him if we had completed all and every test possible related to hormones.

Two tests to do; one was cortisol and the other testesterone.  Results were in the next day, showing cortisol levels four times the normal range.  Bingo!  it was like I had won the lottery.

A flurry of additional tests were conducted, a visit to an Internal Medicine Specialist and finally a referral to the Endocrinologists at the University Hospital.  On meeting the endocrinologist her first words were: “It’s very nice to meet you.  I’m very excited you were able to come in today’.  Is she nuts, I thought.  Since when is a doctor “excited” to meet a patient?  This was the beginning of a most wonderful patient/doctor relationship and it continues today along with the full team of endocrins at this hospital.

It was confirmed I had Ectopic Cushing’s Syndrome in February 2011.  My health deteriorated rapidly with no sign of any tumour which was likely the cause of the extremely elevated ACTH and Cortisol levels.   A Bilateral Adrenalectomy was performed in May 2011 and in November 2011 the elusive lung tumour was sighted in the same location as the one removed in 2003.  It has not grown in the last six months so it is being left “undisturbed” at this stage.

Newer Entries

%d bloggers like this: