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After writing an article titled 10 Things I Would Tell a Friend Newly Diagnosed with Hypothyroidism, I asked the thyroid community what things they wish they could go back and tell themselves at the time of diagnosis of their hypothyroidism.
What I received were many brilliant responses. The main theme being that learning about your thyroid condition and being your own health advocate were crucial in their recovery or management of the disease.
- “To research sooner and learn as much as possible because Doctors do not understand thyroid issues at all. When I was first diagnosed ten years ago, I was given a pill and sent on my way. Was never explained how serious it is and how badly it can affect you.” – Crystal
- “That it is an actual illness! I went off my meds for two years. Didn’t think it was that crucial.” – Anny
- “To monitor all symptoms and celebrate the changes instead of focusing on weight loss. Focusing on weight loss and doing things like boot camp led to a massive flare that took me nearly a year to recover from.” – Carla
- “To not waste years and money on Endocrinologists or doctors who are narrow minded. I wish I would have known to see a functional doctor from the beginning.” – Roberta
- “To do more research myself rather than just accept what the doctor said.” – Kate
- “Do your research and find a good doctor. Your symptoms are real, they are not a figment of your imagination. Rest every time you need to. You are not the problem, uneducated doctors are.” – Amber
- “Don’t believe it’s in your head. Don’t feel guilty if you need rest.” – Cassandra
- “When I got my diagnosis I half heartily took my tablet. I wish someone had taken me aside and told me to research it, learn as much as I could and to not give up and never believe a GP when they put all my symptoms down to being overweight.” – Sophie
- “Doctors kept saying it takes time for the meds to work, to feel better, before we can up your dose, etc. I wish someone had explained why and the reasons behind why it’s a slow process. Would have been far less frustrating. Also the link between good gut health and Hashimoto’s (which my doctor never even discussed!) which for me improved, absorption, conversion and overall wellbeing.”- Gill
- “To stand up for myself when I know there’s something wrong and not accept a doctor’s statement that “it’s all in your head”, “you’re hypochondriac”, and to “stop blaming your hormones for your fat; get off your ass and move and eat less instead.” – Cara
- “Advocate sooner. Talk to the insurance while you still have it. They don’t have to believe or understand what’s going on with you. Believe in yourself. You aren’t alone.” – Star
- “I would recommend to start paying attention to nutrition and take a good multivitamin, B-complex, and vitamin D3. And stop drinking fluoridated water! I wish I knew these things and could go back in time and tell myself!” – Heather
- “The thing I wish I would have been told was that I would likely be on medication for the rest of my life. The doctor just called me with a diagnosis and a prescription. Absolutely no education on what my condition even meant.”- Amy
- “That you can feel better and to not lose hope. It’s hard not to feel impatient when you feel so, so unwell, but you have to remain hopeful that the meds will kick in at some point and you’ll start to figure it all out some day.” – Rebecca
- “Your hair will grow back. The panic attacks will stop. You are not crazy. Just stop the stress in your life right now. Stress is your enemy.” – Aline
- “Spring for the pricey insurance, even though you think you can’t afford it. You’ll bankrupt yourself before you feel well otherwise.” – Jess
- “Just taking a tablet every day for the rest of your life will not make you well again no matter what your GP tells you. You need to do more. Do your research, fight your corner and hope to one day get back a small part of who you used to be before this disease took hold of your body and mind.” – Claire
- “Research nutritional needs for hypothyroidism.” – Paula
- “If the Levothyroxine doesn’t work, there are other medication options.” – Rosie
- “Flare ups are totally normal.” – Ben
Add your own in the comments section below.
Read other blogs in the ‘Thyroid Patients Explain’ format here.
If you are on thyroid medication and still having these kinds of issues with fatigue and other symptoms, you are likely not adequately treated, or have other problems you need to address. A properly treated thyroid condition should have no or very few symptoms. Of course, other illness, conditions and deficiencies can cause problems too, so explore them all if possible.
Of course, getting ourselves adequately medicated and finding doctors who will listen to us, is a whole other topic!
You can click on the hyperlinks in the above post to learn more and see references to information given.
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 writing articles, authoring books, producing her Thyroid Family email newsletters and speaking on podcasts, as well as being a founding board member for the American College of Thyroidology. She is well-recognised as a crucial contributor to the thyroid community and has a large social media presence. Her books include “Be Your Own Thyroid Advocate” and “You, Me and Hypothyroidism”.