Things I wish someone had told me when I was diagnosed with hypothyroidism

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1. Stress can cause the thyroid hormone to not be absorbed properly - this applies to both NDT and synthetic thyroxine. Instead of being converted to T3 the T4 is concerted to 'Reverse T3'. This is why in the patient information leaflet it says don't take if you have an adrenal gland problem (look up Cushing's disease and Adidisons disease).

Look up the symptoms of Addison's and Cushing's disease and go back to your doctor if you have the symptoms. Look up Reverse T3 so you can validate this for yourself.

2. Start on a low dose and build the dose up. It takes time for your body's cells to adapt so they can absorb the T4 (again this applies to both NDT and synthetic thyroxine).

This also applies when increasing or decreasing a dose. I used to increase/decrease by a quarter of a 25mcg thyroxine tablet at a time every 2-3 days until I got up to the specified dose.

It's OK to chop the tablets up.

3. If your thyroid has been destroyed by RAI you MUST be on replacement hormone or you will die.

4. Take thyroxine on an empty stomach an hour before food. Food impairs the absorption of thyroid hormones.

5. Don't to take medications containing iron or calcium until 4 hours after taking thyroxine or NDT.

6. Thyroxine has a half life of 7+ days, so stopping the dose for a few days until your overstimulation symptoms subside (7 days maximum) won't kill you, it would then give you a base that you could start increasing it from.

7. Blood tests take 12 weeks to reflect one's tissue thyroid hormones levels. Tests before this are inaccurate and may lead to the wrong action being taken.

8. Taking your Basal Pulse and Basal temperature are a good way to test tissue thyroid hormone levels. Doing both is best.

(Note I'm not a doctor, just someone who had had hypothyroidism for 28 years)

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  • Posted

    9. Some people don't convert T4 to T3 properly. So if you consistently need to be dosed so your TSH is <0.01 then this is worth investigating. This applies to me. I found out by accident when I stopped thyroxine for 10 days before going on NDT. Then had a blood test which showed my T4 in the middle of its range and my T3 below its range. As there was enough T4 available to convert, my T4 and T3 results should both have been in range. It is these people who benefit from being on NDT, or being also prescribed T3 (liothyronine), or being prescribed liothyronine. For some reason I didn't benefit from being liothyronine but I did from NDT.

    10. Not all synthetic thyroxines are the sane. They have different fillers in. If you itch from one, try another brand.

    11. If you find a brand that suits you, stay on that brand.

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  • Posted

    Awesome pos, Barbara! 

    I’d like to add my newest discovery thanks to the Levo worsening my condition to an acute case of autoimmune pancreatitis. 

    Do not be seduced into thinking the thyroid works alone in a vacuum. It works in symphony with the entire endocrine system, the gut, gallbladder, liver and kidneys. 

    I’ve been treating holistically for pancreatitis (there is no medical treatment) and suspect that longstanding subclinical pancreatitis may be responsible for a myriad of gut problems resulting in malnutrition and worsening my thyroid disease.  What caused what? I don’t know. I do know the levothyroxin accelerated all the disease problems, inducing old age diseases far in advance.

    With thyroid disease, patients must take a holistic and lifestyle approach to truly heal. To this end, many thyroid patients wind up troubleshooting every aspect of their life to eliminate sources of disease. It’s a long process, but with diligence and patience can lead to recovery.

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