I took levothyroxine for 20 years. Due to terrible fatigue I saw a private thyroid doctor who has prescribed NDT. I've done a direct switch from 125 mcg daily and am building up to 3 grains daily; I'm currently on 1.5 grains. I used to suffer from palpitations/ectopic beats and am worried about getting them again as I have read this can be a side effect of raising T3 (mine is very low at 3.7). I am optimistic about this change but don't want to take any risks as I am hypertensive (treated with meds).
What has been the experience of others here making this switch?
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Piranesi55
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Presumably you have some test results from on levothyroxine before changing to NDT
What vitamin supplements are you currently taking
When were vitamin levels last tested
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine or after changing to NDT or adding T3
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis) usually diagnosed by high thyroid antibodies
Have you had thyroid antibodies tested?
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis. Both are autoimmune and generally called Hashimoto’s.
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended on here that all thyroid blood tests early morning, ideally before 9am last dose levothyroxine 24 hours before test
On T3 or NDT - day before test split daily dose into 3 smaller doses, spread through the day at approx 8 hour intervals, taking last 1/3rd of daily dose 8-12 hours before test
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
Hi there and thank you for your comprehensive reply. I have found a practitioner via Thyroid UK and am following the advice given. I'm taking Selenium, Vit C, Vit E and B6 tablet along with Ashwaghanda, which has vastly improved my sleep quality. We tried this regime alone but I didn't respond to it so am now starting NDT and titrating up to 1.5 twice daily; then will have bloods done after 6 weeks. My last bloods were:
The doctor's view is that I am not converting T4 to T3 adequately, hence feeling symptomatic.
I'm now taking 1.5 daily and I think I'm noticing a difference but this could be wishful thinking. Usually I struggle to get through the day without sleeping for 2-3 hours in the afternoon and generally feel a bit like the walking dead.
I do have other diagnoses i.e. high blood pressure, reflux disease/gastric erosion and Sarcoidosis. The reason I decided to investigate my thyroid was that I've felt so ill and assumed it was the Sarcoidosis but thought I would rule out other factors before trying to get a referral to one of the few Sarcoidosis units in the UK. There's a family history of kidney disease as well, my father died after 10 years on dialysis and my son had a kidney transplant in 2018. The GP's are quite good about keeping an eye on my kidney function especially as I take the maximum dose of my BP meds. (Ace Inhibitors).
I'm aware that ppi's affect magnesium levels so I take magnesium on rather an ad hoc basis. I forgot to say I also take Vit D daily as recommended by the thyroid doc. I have a full blood test panel from a few months ago but can't find it just now. My thyroid doctor has seen it and was satisfied with most of it apart from Vit D levels. Of course it only showed TSH and not T3/T4. If I do find it, I'll post it on here. I'm very grateful for your replies to me. Many thanks.
I know my last kidney function test was 75%. I have been given the same brand of thyroxine most of the time. When I first started taking Levothyroxine, a very long time ago, I noticed there was a brand that seemed to work better which I think was Teva. My health has deteriorated very noticeably over the past 3-4 years but there have been a lot of other factors - family stresses etc. It's often hard to tell what is really going on but dry skin and hair, feeling cold, weight gain (considerable), severe fatigue and low mood have been constant. Also I have no eyebrows!
Hello thereI switched from Levo to NDT (slowly like you) and I’ve never felt better. NDT has been a life changer for me, with my hypo symptoms gone and no side effects.
Do you have bench mark results of T3 and T4 before switching to NDT ?
Are you monitoring your blood pressure, pulse and temperature twice daily as I found this a reassuring way of tracking my progress and symptoms when I switched from T4 monotherapy to NDT ?
Stating you will need 3 grains is a bit previous - you need what you need - some people are fine on much less than that whilst others need a few grains more.
Are you splitting your dose twice daily or taking just one dose a day ?
I slowly increased my dose in 1/4 grain increments and rule of thumb, when, if, you get to 2 grains stay on that dose for 6-8 weeks and then run a blood test to see where your T3 sits - if it hasn't moved much from when on T4 - and you still have all the debilitating systems - NDT may not be the best treatment option for you.
No thyroid hormone replacement works well until your ferritin, folate, B12 an vitamin D are up and maintained at optimal levels.
I would suggest, you take your NDT as far away as possible from any other medications just in case there is any contraindications.
I take my NDT at around 3 am when I naturally wake up for the toilet and fall back to sleep until around 6/7 and in this way, I have an empty stomach and leave plenty of time before I have breakfast allowing the NDT to be fully digested and absorbed in my body.
Having low iron and/or low ferritin (iron stores) can cause palpitations. If it is severe enough it can cause tachycardia (very fast heart rate) and/or chest pain.
HiI have been using NDT for at least 7 years and would never go back into levothyroxine
Like you I suffer from intolerances to numerous medicines and food additives.
NDT is marvellous. It is quick acting and helpful in just days of use but don’t expect miracles! It will probably take up to six weeks to really notice significant changes although you may start feel slightly better after a few days
I currently take 75mg a day but I only weigh around 58kg. When I weighed 62kg I used to take 90 and 105 alternating days
One of the good things of NDT is that your T3 will quickly be improved which should make a significant change to how you feel
I don’t know whether I can leave my personal details in this message but you can always contact me through Thyroid UK
My name is Patricia Smith and I live in Clifton Bedfordshire . Always happy to help
Thank you Patricia, that's very encouraging. I do think I feel a bit better after 5 days but maybe it's just because I'm feeling hopeful! I have done some gardening for 2 days in a row which is amazing for me. I will follow you on here as I really like getting some feedback on how people are managing their thyroid problems. x
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