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LJP73

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Profile Information

  • First name
    Linda
  • Last name
    Sanday
  • Country
    United Kingdom

About me

  • About me
    I am keen to know more about patient safety within the health service
  • Organisation
    ITT
  • Role
    Admin
  1. Content Article Comment
    Thank you Katie for your hypothyroidism journey. My journey - I'm taking T3 monotherapy, 40 mcg supplied by the NHS and the rest I buy off the internet. Its been a lifetime's hypothyroidism journey for me starting from age 7. I spent 26 years on levothyroxine, and just got worse, hair falling out, (still have a patch I cover up), teeth in poor condition, my finger nails I used to bandage them individually as they split, such rough skin on legs, arms, my stomach flopped, body swelled, (still does), and for a time, told "don't come to the surgery so often", "go home and weep for the woman you were", when I just wanted to feel human. I developed other diseases along the way, lupus, associated sojgrens, antiphopholipid syndrome, diverticulitis, pituitary apoplexy, Menieres, IBS, osteoarthritis, ME, benign essential tremor, asthma, and others. A surgery nurse started to take me under her wing, sent me for all sorts of tests, which started my journey back to a form of wellness, via a haematologist, rheumatologist, endocrinologist, neurologist, dermatologist, support groups, and finally doing my own research which led me to believe that levothyroxine was harmful to me, and liothyronine might be the answer, which it has been. It took 40 years to find that my pituitary TSH didn't work, that I have polymorphisms in DIO2 and DIO1, I don't process Vit D, nor Thiamine in my brain. I have 'bottlenecks' in several thyroid pathways. We are individuals, need individual treatment, which currently does not exist within NHS. I'm not sure it exists in the private endocrinology sector either. The current testing protocol is woefully insufficient, the Endocrinologists and GPs ignorant of the harm caused by treating us as a 'human female herd'. MHRA uses out of date information in SmPC for levothyroxine and Liothyronine. In 1977 Surks & Oppenheimer in The Journal of Clinical Investigation demonstrated that T3 exhibits a tenfold higher affinity for the nuclear receptor than T4, confirming T4 is a prohormone. While current hypothyroidism treatment (levothyroxine) wallows in pre-1977 clinical practice, ethics 'has walked' and sanity (in the form of all suitable products need to be allowed on prescription) to be reinstated. Other organisations have tried to help, but are tied up by MHRA and deciding that ' a medicine's biological action would not be reflected in the SmPC', which it should.
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