Note: This article condenses all of the many separate entries I once wrote recording my experience of switching to NDT medication in the first six months. I have to state that self-sourcing any medication can be dangerous and is not recommended. I was desperate but I took risks. I also had a supportive GP who helped to manage my dose and ran the appropriate tests. Please see my full disclaimer here.
Day 1: 15th December 2015
I have been on Levothyroxine for almost 6 months, and after developing more and more symptoms and feeling no better on it, I am making the switch to NDT (natural desiccated thyroid). A different type of medication.
I sourced some NDT medication myself (from Thailand), after asking GPs and an endocrinologist to prescribe it, and them saying no, and I am going to start it 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. (only endocrinologists can on the NHS)
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 and in books and studies, 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.
And I am at a point of feeling SO desperate now. I am suicidal. I am struggling to work, I cannot climb stairs unaided (my partner has to help me) and I have no quality of life. This feels like I have no choice.
I am going to follow STTM guidelines for dosing the NDT, while also working with the GP.
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!
1 Week in: 22nd December 2015
So, I’ve been on NDT for one week now. I haven’t really noticed any difference, apart from being super tired on the first day which was a bit scary, but since then, I’ve felt the same as just being on Levothyroxine.
I was so tired on Day 1 that I got home from work at 5:30pm and slept on the sofa until I was woken up for dinner at about 7pm, and then I went back to sleep until 7am the following morning.
I’m splitting my dose over the day, so taking half in the morning and half in the afternoon. At the moment, half a tablet and half a tablet at those times. I am still working with my GP to adjust and monitor.
Part of me was hoping for there to be a difference within a few days of taking it, and I can feel myself getting more and more agitated and impatient about it, but I’ll get there.
2.5 Weeks in: 1st January 2016
I’ve now been on NDT for two and a half weeks, and feeling a little better.
It’s important to state that my GP hasn’t ran a blood test yet. He wants to soon, though.
I have noticed that my stamina and fatigue is somewhat better, and the aches, pains and joints stiffness have also improved. My itchy scalp, which I’ve had for a good few months, has thankfully stopped also.
8.5 Weeks in: 12th February 2016
Well well well.. I now feel almost completely better and 2 grains of NDT (120mg) seems to be about right for me, based on the combination of symptoms and test results.
My latest test results look good with TSH optimal , Free T4 optimal and Free T3 slightly above range, which obviously needs to be fixed, but it’s a good start. My GP is exploring whether we lower the dosage slightly.
I did have over 20 symptoms whilst on Levothyroxine, but now on NDT, I just have one left – fatigue. As explained in previous posts, I do have adrenal dysfunction, though (often comes hand in hand with thyroid problems). It has improved, though. I can now walk home from work again, a 35-minute walk each way, and I no longer need to nap during the day. I do OK on 7 hours sleep. Sure, I could do with more, but I’m now functioning and my thyroid is having hardly any impact on my life and ability to do things. It’s amazing.
I have also noticed that I haven’t been ill for a while, and I hope it’s a sign that my immune system is starting to pick back up. For about four years now, I’ve been a really sickly person, pretty much always with some form of bug, cold or virus.
My GP is monitoring me closely and working with me in this, and is very happy with my current progress.
3.5 Months in: 30th March 2016
I’m now three and a half months in to NDT medication and am very happy with the progress made. Today, I picked up my latest blood results, taken yesterday, and I’m so happy with my results.
My TSH, Free T3 and Free T4 are all within range and in good places.. they’re optimal! And I feel well. I’m hardly ever consciously thinking about my thyroid, and it’s no longer affecting my day-to-day life. My GP is also very happy with these results.
I’m hoping my last symptom, fatigue, will finally go away with continued adrenal support and/or going gluten-free, due to having Hashimoto’s too.
I am so glad my Free T3 has come down though, as in January, it was way above range and indicative of adrenal issues apparently.
For the first time in my thyroid journey, I can say: I have an optimally treated thyroid condition.
Progress! I’ll be re-testing my cortisol levels to hopefully confirm that the cortisol has come down. If you’re looking to test your levels too, a you can find a test here. A lot of doctors don’t test for adrenal issues.
6 Months in: 22nd June 2016
My thyroid test results still read well, and I am still on 2 grains of NDT a day. I feel pretty good. NDT has given me my life back, that’s for sure. I am continuing to make lifestyle changes to support my adrenal health, such as improving my diet, sleep, changing exercise to more restorative and reducing my stress levels. For now, I feel I am fully adjusted and settled on NDT and my next areas of focus are on my adrenal health, sleep, exercise etc.
