The story of Carole
My doctor noticed my fingers were quite large & stubby whilst i was having a skin check-up.
A blood test showed very high growth hormone & igf1 (insulin like growth factor) & referred me to a neurosurgeon & endocrinologist who yare now a major part of my life.
They confirmed so much for me and all the pieces of the puzzle now fit. For years I had ALL the symptoms: Thyroid issues, sleep apnoea, some dietary issues, foot issues, weight gain, hormonal problems, weird menstrual cycle, enlarged tongue, teeth & jaw issues.
In hindsight if several medical people I saw over the years were aware of Acromegaly & its symptoms, I would have been diagnosed years ago and could have saved lots of money….. Sleep physician, Dentist who said I have large tongue, Podiatrist -wide & growing feet, GP-thyroid issues & ongoing high blood pressure, joint pain & menstrual issues.
An MRI confirmed i had a 10mm (classified as med-lge) pituatry adenoma (always benign) which had to be removed.
Surgery done through the nose & my bodily changes were immediately evident. I lost 10kg of fluid & my facial features & hands were the most evident to me immediately.
15months later, I still have fragments of the tumour in my pituatry gland and I need to have annual MRI’s to monitor any growth. Radiation is an option later if tumour doesnt grow much. If it does grow, another attempt to remove it is possible.
Treatment – I receive monthly injections of Lanreotide gel which blocks the release of related offending hormones & I am on HRT as well.
Going forward, several mild symptoms remain with hormone related emotional well-being my biggest issue. But with medication & an ongoing dietary & fitness routine, I am living with my Rare Disease quite well & count myself as lucky.
GP’s & related Medico’s need to be made aware of symptoms so they can diagnose ACROMEGALY in patients sooner.
Lets spread the word.
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