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I have been on Levothyroxine for almost 6 months, and after developing more and more symptoms and feeling no better, I am making the switch to NDT.
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!
See the next post in this series here.
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.
Angela, UKNovember 15, 2021 at 1:38 pm
Hi Rachel, can you please tell me how you sourced the NDT yourself? I really want to try it but a more unsure of any credible sources and worried about buying fake medications from overseas. Any help would be greatly appreciated. Thank you.
Rachel HillNovember 16, 2021 at 12:40 pm
Hi Angela, this is unfortunately the true risk of self-sourcing.
I’m sorry to hear about you struggling to find someone who will prescribe you NDT. GP’s don’t tend to prescribe this as it requires a referral to an endocrinologist at the very least usually. Other types of medical practitioners such as functional medicine doctors can be more useful and I get my NDT prescribed by a private GP.
When it comes to self-sourcing, I cannot share sources due to liability, but they are shared a lot in online forums and support groups for thyroid patients.
You may be able to find a more open practitioner for prescribing NDT by following the resources listed here: https://www.theinvisiblehypothyroidism.com/how-to-find-a-good-medical-professional-for-your-thyroid-condition/
TomasOctober 2, 2019 at 5:35 am
Love your posts about the progress, it was really helpful reading through them all before I started with the switch myself. I am currently in Thailand so I got my hands on Thyroid-S which I started taking last night. I was prescribed Levo (75mg) so I’m starting with 1 pill of NDT.
Ever since I started taking Levo, I’ve felt some things getting better, but other things has gotten worse. I don’t think my body is completely against Levo, it’s just that it doesn’t fix unexplained mysteries about why I feel the way I do. My brainfog is the most negative thing for me, and no matter what I’ve tried it won’t go away. My TSH/T3/T4 is on point, and has been for 2 years. I was prescribed SSRI’s which helped me somewhat, but I was still believing what I said the very first time, I really don’t think Levo is working for me!!
I went on an elimination diet, made a full blood sample to check micro-nutritions & vitamins. According to those samples I’m the most healthy person on earth, but my head is still completely out of it. NDT is the last thing on my list, and since I wasn’t able to get it in Sweden I decided to get it here in Thailand.
The switch is scary, but at this point I’m willing to do anything to heal myself, it’s been over a year of experimenting with everything I can, and my life is almost falling apart because of this… I really hope my progression ends up like yours!
Thanks once again, it feels nice not going through this completely blind!
Claire JonesNovember 9, 2018 at 7:03 am
Hi Rachel. Thank you so much for your posts 😁. Can I ask how much levothyroxine you were taking before NDT? I was on 100mcg and am currently on 1.5 grains of Thai Thiroyd. Still feeling tired and rather bloated, but the grey hair has stopped at least!
Rachel HillNovember 9, 2018 at 8:39 am
50mcg of Levo before and 150 of Thyroid S (2.5 grains)
LianneJuly 29, 2018 at 9:23 am
Hi Rachel, could you possibly give an update as to how your doing on NDT? Iv been researching it for many months now and hoping to make the switch from Levo. Thanks x
Rachel HillJuly 29, 2018 at 11:25 am
Hi Lianne, I covered the full first year here – https://www.theinvisiblehypothyroidism.com/2016/06/07/all-of-my-ndt-journey-milestones/
VivienneApril 5, 2018 at 9:59 pm
Hello How are you getting on with Thyroid? I am just about to start Thyroid TR.
Rachel HillApril 8, 2018 at 12:06 pm
I’m doing very well on NDT 🙂 Hope it reaps the same benefits to you, too.
Ho ChiDecember 14, 2017 at 10:49 am
Im not that much of a internet reader to be honest but your blogs really nice, keep it up! Ill go ahead and bookmark your site to come back in the future. All the best.