feeling worse after starting NDT: I’ve just... - Thyroid UK

Thyroid UK

141,182 members166,424 posts

feeling worse after starting NDT

LucyYoga profile image
12 Replies

I’ve just started ERFA thyroid 7 days ago. 30 mg. It’s my first foray into medication. I have known conversion issues hence one of the reasons why me wanting to start straight off with T4/T3 combination therapy.

Although my core. It’s temperature has increased and the tinging and pins and needles in feet are already feeling a bit better, emotionally I feel dreadful. Suddenly REALLY depressed and exhausted to the point where I can’t get out of bed at all.

I’ve already been really Ill ( housebound and orettt much bedbound for past 12 weeks), but this has made me feel even worse. Especially the sudden feelings of utter hopelessness. I spoke to my private thyroid specialist yesterday and she said this is not an expected reaction and to come off it for a few days then start again at a quarter of the dose. I know my system is extremely sensitive but this is ridiculous.

Anyone else had similar experience?

thanks

Written by
LucyYoga profile image
LucyYoga
To view profiles and participate in discussions please or .
Read more about...
12 Replies

you may have a cortisol issue. Either way it isn’t unusual to have these types of reactions, I get it everytime I raise my ndt dose but then it slowly peters out over time. It’s probably the stimulation and a lowered dose is a good idea.

LucyYoga profile image
LucyYoga in reply to

Thankyou!!!! I guess it’s a matter of giving it time and patience. Was hoping it was going to be a magic bullet but realise from what I read on this forum that it often takes a lot of experimentation and patience. Thankyou

in reply toLucyYoga

I hear you! There are those stories around about “by day 9 I felt like my old self” but they’re rarer than those who struggle. Depending maybe on how long you’ve been hypo and the state of your adrenals and other vitamin levels (how is your iron in particular?) slowly, steadily and maybe an iron panel + saliva cortisol panel if you don’t see improvement over time 😊

LucyYoga profile image
LucyYoga in reply to

Interesting you say that about my iron… all my other main vits/ minerals (selenium, zinc, folate, B12, D etc) are optimal and although my serum iron seems ok (18.7),my ferritin is probably a bit low (46). Weird since I eat red meat at least once and sometimes twice per day and I suppplement everyday with dessicated liver capsules. Have just added in an iron supplement and will test again in a month to see if levels have gone up.

I will def do a saliva cortisol- Thankyou.

I’ve been subclinical ( if you go by standard reference ranges!! ) for a year and clinal for 2 months.

LucyYoga profile image
LucyYoga in reply to

also… of cortisol is an issue what are next steps. ?

in reply toLucyYoga

Yes that ferritin is low, 100 is the minimum I believe for reliably good iron levels to optimise thyroid hormone metabolism. Have you heard of ray peat? I only ask as I see you are carnivore-Ish, and for those who find carnivore stops working then often go to ray peat (I know this because that’s what happened to me) and he argues that low iron in the face of eating large amounts of red meat is actually high tissue iron (something you don’t want as iron is very toxic) and low serum iron.

For cortisol a saliva test from regenerus labs that includes DHEA is best 😊 I can DM you a practitioner code so you can order it yourself. If you’ve been on a restrictive diet for a long time cortisol can become dysregulated, and hypothyroidism can result so it may be worth testing x

LucyYoga profile image
LucyYoga in reply to

amazing Thankyou so much yes… please DM me. Yes I’m carnivore ish… basically meat, fish, bone broth and low lectin fruit and berries.when I was diagnosed with sub clinical last year I started working with functional nutritional therapist. Long story as I felt a lot better over summer- almost back to normal and without meds then it all kicked off again a few months ago. Mycotoxin panel has revealed I have significant mycotoxin issue and I have protocol ready to start but I need to just get my t3 and 4 up with meds before I can consider starting it.. right now I’m just too weak.

I did Paul Saladino based carnivore -just meats, animal fats, fruit and raw honey for a month when I started to get really Ill again in October -it made me feel worse so I’ve gone back to eating some more veggies and just taking the low lectin/ AIP/ meat based approach I originally started on at beginning of this year that got me better.

Yes I follow some of ray peats advice and have the carrot salad every day. I just have to be careful with sugar as it doesn’t help the current mycotoxin issue.

Interestingly my DHEA was low when its was checked by functional nutritionist in January.

Yes please DM me as i want to do sone of these tests on my own as my nutritionist is extremely expensive and charges a lot just to interpret results and email them to me.

Thankyou so much for your help and kindness ☺️

in reply toLucyYoga

oh yes our journeys are very similar. I now avoid ketosis like the plague, it is deathly for hypothyroidism and adrenal fatigue in my experience. I also consulted Paul Saladino when he was pure carnivore… told me to eat meat and drink water and then charged me $900! 🤦‍♀️😩 was a total disaster. A year later I got a fecal impaction my thyroid function went so low. He never responded to any messages I sent him asking for more guidance.

I’ll send you the code 😊 DHEA can also decline with age in case that’s relevant. X

Brightness14 profile image
Brightness14

Are you taking you 30mcg NDT in two lots. 1/2 first thing and then 1/2 after lunch. This may help. I have always taken my NDT in two lots. When I started it was 1/4 grain twice a day.

LucyYoga profile image
LucyYoga in reply toBrightness14

no I’m not… I will try that. Many thanks

Lalatoot profile image
Lalatoot

Lucy the usual starting dose is 15mg for the first week or two Then increase by 15mg every 2 weeks until you reach your dose or a daily total of 60mg.

The dose you are currently on is also termed half a grain. Recommended is to change in quarter grain increments.

Some folks take their daily dose in one. Others split it into 2, 3 or 4 doses. You find out what suits by trial and error.

LucyYoga profile image
LucyYoga in reply toLalatoot

Thankyou 🙏🏽 Really helpful x

Not what you're looking for?

You may also like...

Feeling worse

Hi all Hope everyone's had a good start to 2024. I was started on levothyroxine 25mcg on 19th...
Cabbages123 profile image

NDT feeling worse please help

only a week on WP half a grain I feel incredibly ill my legs are throbbing and aching swollen, feel...

Feeling worse after partial thyroidectomy

I finally had the right side of my thyroid removed 10 days ago after an indeterminate FNB on a...

Feeling worse since starting 100mcg levothyroxine

Hi, I'm new to trying to manage my thyroid levels and it does not appear to be going well for me. I...
SleepyB profile image

cold feet after starting ndt

hi ive been taking ndt im up to 2 grains and have been on that for a bout 7 days now.lately i've...

Moderation team

See all
Jaydee1507 profile image
Jaydee1507Administrator
PurpleNails profile image
PurpleNailsAdministrator
SlowDragon profile image
SlowDragonAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.