I’m new here and thought I’d introduce myself. I was first diagnosed with hypothyroidism 6 years ago and took T4 medication. It made me feel better at first but then after a few months started to feel low again so saw a different doctor who said I was misdiagnosed (my first experience of doctors who know very little about treating hypo!) I just assumed I was tired and stressed, glad not to finally have to take medication.
Fast forward a year and I was suffering really badly with brain fog, crippled by it all day everyday, along with the usual low symptoms like fatigue, anxiety and weight gain. I started on a health journey to see what was causing the foggy head.
Five years on, I’ve seen so many medical professionals, from chiropractors to specialists (“my favourite” bad experience was one who told me I was breathing too much), to functional medical practitioners and many GPs. Whilst I had many diagnoses over the years (it’s adrenal fatigue, it’s low Vitamin B, it’s this or that) nothing has ever fixed my brain fog and fatigue.
Last year I was seeing a functional medical practitioner who finally caught the hypothyroidism (and all my faith in doctors went out the window- if only that first doctor hadn’t told me I didn’t have it). She prescribed me T3 12.5mg and T4 25mg and I was delighted. Finally my brain fog would go away, I thought. But it didn’t. And six months later it still hasn’t. She kept increasing my dose of T4, up to 100mg, but the more she put me on the worst I felt. My face became puffy and I was more tired.
I bought the STTM book a few months ago and it was a breath of fresh air. I knew I had to fight for my cause. I asked to be prescribed NDT, but was given a resounding “no”. So, I found GP near me who I learnt about on a blog that is willing to prescribe it. After waiting for the prescription, and having to order it in from my pharmacy I was delighted when it arrived 2 days ago. I’m on day 3 now- taking one grain in the morning and one in the evening.
What have people found when you start taking NDT? Did it help your brain fog when synthetics didn’t? How long did it take to notice a difference? How do you manage taking NDT around food?
Sorry, this post ended up being much longer than planned, but aside from my very supportive husband, this has been a very lonely road for many years and I’m so grateful to be able to connect with other people like me.
Autoimmune thyroid disease diagnosed by high thyroid antibodies
Extremely important to regularly retest vitamin D, folate, ferritin and B12
What vitamin supplements are you currently taking
With levothyroxine, T3 or NDT we always need GOOD vitamin levels
It takes several weeks to adjust to any dose changes, wether it’s T3, levothyroxine or NDT
Bloods should be retested 6-8 weeks after each dose change
There are many brands different NDT.
What are you currently taking?
Have you had coeliac blood test done
Are you on strictly gluten free diet?
Gluten often a cause of brain fog
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
If/when also on NDT make sure to take last third or quarter of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Commiserations on the hypothyroidism but congratulations of the NDT prescription - is this through the NHS service or a private endocrinologist, or functional practioner ?
I am taking Natural Desiccated Thyroid but am having to self souce as I was refused both NDT and T3 - Liothyronine through the NHS - I have Graves Disease and post RAI ablation in 2005 and now manage lingering Graves, thyroid eye disease and hypothyroidism.
I stopped my T4 - Levothyroxine 125 mcg one day and started NDT 1/2 grain the following day - I take my medication at around 3.00 am so to dovetail in with the circadian rhythme of the body and obviously well away from any other medication for maximum absorption.
I took bench mark T3 an T4 blood results before I started so I had something to refer back to and I monitored daily, my temperature and blood pressure.
Slowly over weekly dose increases of 1/4 grain I increased up to 1 + 1/2 grains where I have remained for the past couple of years.
I now just monitor yearly my thyroid and just as importantly my ferritin, folate, B12 and vitamin D as if these core strength vitamins and minerals are not maintained at optimal levels your ability to convert the T4 content of the NDT can be compromised.
If you reach 2 grains hold this dose for 8 weeks and then take a blood test to see where your T3 and T4 now sit :
Your T3 should have risen and your T4 may, or may not have dropped down in the range - but if you feel better, and less symptomatic, it does not matter.
The TSH is the least important of the 3 blood tests and on NDT it will go low/suppressed if it isn't there already.
If you are happy with your progress - keep slowly building up on 1/4 grain increases to the relief of symptoms:
There will come a week when your increased 1/4 grain produces a slight " overmedication " feeling simply drop back down to the previous dose you were on, and that is your dose on NDT at this point in time.
Tortoise / hare - go low and slow - monitor symptoms - and ensure your core strength vitamins and minerals are optimal before you start,
P.S. Just seen that you have posted some blood test results -
I find NDT softer on my body - on synthetic T3 / T4 I felt a bit turbo charged -
Can I ask why you swopped over from the synthetic combo ?
I got the NDT through a private doctor in Dublin. It sounds like you have a hard time getting yours.
Thanks for your help with dosing. What symptoms do you feel with "overmedication"?
I'm starting on 2 grains NP Thyroid, but I was already on T3/T4 before. I just found I never had relief from the brain fog on synthetic combo. I'm not sure this is going to help, but hopeful it will make a difference.
If you go into the Thyroid uk website who are the charity who support this amazing forum -
* just scroll up and you will see there are now over 116 thousand of us on there : -
you will find a list of hypothyroid and hyperthyroid symptoms - so it's something to be aware of, though there are a few symptoms that can " cross over both " conditions.
NDT was successfully used for over a hundred years, prior to the blood tests, guidelines and computer dogma we now seem to be drip fed.
You dose to the relief of symptoms - overmedication could show itself as your becoming a little edgy, nervous, irritated, or easily upset, loose bowel, or just generally a little " not you " and maybe " wound up " a bit too much ?
We are all different and coming at this from our own standpoint, so just read up the the Thyroid uk website, become a member ! and educate yourself so you'll feel confident in the advice you may or may not receive by your doctor.
We are generally advised to start NDT low and slow but seeing as you are already on a combo this may not apply:
2 grains NDT will contain - depending on brand - around 18 mcg T3 + 76 mcgT4 and said to be about the power of 200 synthetic T4 but there are so many dependables, just go low and slow.
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thyroid is finally normal!
Finally got Levo and T3 from consultant
*New here* My T3 never budges; significant symptoms persist
