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I sourced some NDT medication myself, after asking GPs and an endocrinologist to try it, and them saying no, and I am going to start it tomorrow, since it arrived today.
Now, let me start by saying that I would always suggest working with a doctor where possible to change thyroid medication, as self-sourcing can be risky and dangerous. I know this. Finding a doctor who will prescribe it for you and work with you is the best outcome. My GP supports my choice to take it and works with me, but he says he can not prescribe it.
About starting the NDT – I have mixed feelings. I am nervous but excited. I have read so much positive stuff about natural desiccated thyroid online, in Stop The Thyroid Madness etc. but some people around me have made me worry. Of course, there’s that feeling of not knowing exactly what you’re taking, when it’s not been administered by a doctor, but at the same time, I have read thousands and thousands of patient experiences online and in books, about taking NDT and having it change their lives.
I am going to follow STTM guidelines. Tomorrow, I will take 1 grain (a tablet) of NDT, split in half. Half in the morning, an hour before I properly rise, and the other half in the afternoon, around lunch time. I’ll keep clear of any food for about an hour either side of each dose, and we’ll see how I get on.
I’ve read from STTM that I can increase from 1 grain to 1.5 in 10-14 days time, and then increase to 2 in another 10-14 days, depending on my symptoms, so I’m going to go by that. All of this info is in the Stop The Thyroid Madness book.
Before starting Levothyroxine, my symptoms were:
Tiredness, fatigue, muscle aches and pains, brain fog, confusion, long recovery period, brittle hair and nails, sensitivity to cold (cold hands and feet), poor appetite, inability to lose weight, slow in movement, thoughts and speech, hoarse voice, thinned eyebrows, constipation, acid reflux, hormonal migraines, anxiety, dry and tight skin and heavy periods.
Since starting Levothyroxine, none of the above have gone or gotten better, but I also gained these symptoms (that I can remember, I’m sure there’s more!):
Joint Stiffness and pain, hot flushes, depression, numbness in limbs, weight gain (two stone in under six months), very emotional all the time, wind, constantly itchy and sore scalp and worsening fatigue.
I’ll keep you updated. Wish me luck!
You can click on the hyperlinks in the above post to learn more and see references to information given.
EDITED TO ADD: As of 2019, I now have my NDT prescribed from a private doctor. Read more here.
Are you on NDT medication? Let me know in the comments section below.
Rachel Hill is the highly ranked and multi-award winning thyroid patient advocate, writer, speaker and author behind The Invisible Hypothyroidism. Her thyroid advocacy work includes authoring books, writing articles, her email newsletters, blogging and speaking on podcasts, as well as being a founding board member for the American College of Thyroidology and The WEGO Health Patient Leader Advisory Board. Rachel has worked with The National Academy of Hypothyroidism, The BBC, The Mighty, Yahoo, MSN, ThyroidChange and many more. She is well-recognised as a useful contributor to the thyroid community and has received multiple awards and recognitions for her work and dedication. She has authored two books: ‘Be Your Own Thyroid Advocate‘ and ‘You, Me and Hypothyroidism‘. Rachel is British, but advocates for thyroid patients on a global scale.