So sorry for yet more Qs... But I'd really love to hear from anyone who is successfully on NDT.
I have found recently that when I increase my NDT, my body responds well:
good bowel movements
less anxiety
less depression
more motivation
weight loss
higher body temp (36+)
and then, a few days/a week later, I am back to:
poor bowel movements
weight gain,
more anxiety
shivering
trembling
nausea after eating
feeling flu-like
thundering heart rate (for me raised heart rate is a hypo symptom)
lower body temps (35.8 and under)
I think 3 options are possible:-
1. I am not tolerating NDT, I should lower NDT dose
2. I have acclimatised to NDT and need to raise the dose
3. The T4 in the NDT is turning to rT3 and may continue to do so as I keep raising
4. Other??
I know these are not mutually exclusive, 1&3 and 3&2 could be possible in combination.
Relevant labs on 1 grain Armour:
rt3 22 (range 8-33)
T3 4.3 (3.2-6.3)
T4 10 (12-22)
TSH 8
I have retested for all thyroid labs again but still awaiting results 2 weeks later.
Today is my 31st birthday, I have been ill since I was 13. I know I have a lot to be thankful for, but I feel completely hopeless. I just cannot see a way out of this. I appreciate everyone's kind comments, please be extra nice to me if you feel so inclined - I feel very very low today.
edit: reply to kind advice given
Firstly - thanks for being so kind to me during my 31st pity (birthday) party. I appreciate it very much, it makes a difference when advice is given in a kind way 😊 and such good advice too.
Results just in from 26/08/2021 on 1.25grains of Armour, blood draw 18 hrs after last NDT dose:
Tsh 8.41
T4 11.8 (12-22)
T3 4.1 (3.1-6.8)
Rt3 - didn’t get it done. Sounds like it’s a useless metric anyway.
Vit d, b9, b12 and ferritin are pending.
The reason I hadn’t assumed it was due to needing more hormone medication is because I thought I was meant to increase by 1/2 grain every 3 weeks. But I’ve been having horrendous episodes of anxiety and hypo symptoms listed above just 7 days after an increase.
I recognise I am sorely undertreated. I will try to increase doses in response to symptoms returning, instead of lowering it. Wish me luck!
1. I am not tolerating NDT, I should lower NDT dose
Sounds like you tolerate it very well. You're just not taking enough. How much are you taking now? With a TSH of 8, you certainly shouldn't lower your dose.
2. I have acclimatised to NDT and need to raise the dose
One does not 'accliatise' to hormones. Your TSH is saying you need to raise the dose.
If fact, this is a well-known pattern. You increase your dose and you feel great, symptoms subside. But, a while later, they come back again. All this means is that you need an increase in dose, and whilst your body is grateful for what you're giving it, it really needs more.
3. The T4 in the NDT is turning to rT3 and may continue to do so as I keep raising
Your T4 is below range! That in itself should tell you you're under-medicated.
Whatever your level of FT4, about 30% should convert to T3, 30% to rT3, and the rest excreted. However, if your FT4 gets to a certain point that is too high for your body - and that point is different for everyone - it will start to convert to more rT3 than T3. It's a safety measure, to stop you having too much T3 in your system. But, with an FT4 under-range, that is not likely to happen.
rT3 is a complete red herring. Excess rT3 can be caused by many, many things, but only one of them has anything to do with thyroid. And high rT3 is not a problem. It is inert, so doesn't cause symptoms, and only stays around for a couple of hours before being converted to T2. It's not even worth testing for, because it doesn't give you any useful information. It will tell you if your rT3 is high, but won't tell you why. So, best forgotten.
T3 4.3 (3.2-6.3) 35.48%
T4 10 (12-22) -20.00%
Your FT3 is only 35.48% through the range! So, not surprising you're having symptoms. It should be more like 60-75% through. You are still very hypo, according to these labs.
But, you haven't given us enough information to understand why this is so:
* What is your present dose?
* What was your dose when these labs were done?
* How do you take your NDT? On an empty stomach, leaving at least an hour before eating, etc. just like levo?
* How long was the gap between your last dose of NDT and the blood draw?
If we know a bit more about you, we might be able to help.
You are seriously undermedicated so not surprising you feel "very, very low"
Hopefully the news that things can improve will cheer you up a bit.
Your current reaction to NDT is just your body crying out... "Hey, I need more thyroid hormone."
But, we still need more info about you...
Post your upcoming results then we can see what is going on.....and point to a way forward
I felt totally rubbish at your age ...and both parents had recently died, just started a new job, had bought a smaller more convenient house....and been in a car crash. All in my bio.
But, I've made it to age 77 despite all that....and still function!!
So...
Chin up, have a very happy birthday...and listen to your body!.
We're all here for you.
DippyDame and greygoose I have edited my post to reply to you both.
I think you've been given some bad advice by someone. NDT is better increased by 1/4 grain at a time, but you can increase every two weeks.
Anxiety is a hypo symptom. And, those latest labs are saying you're still very hypo.
But, you still haven't told us how much you're taking, so we have no idea how well you are absorbing. Come to that, you haven't answered my other questions, either.
I realise all these questions sound like prying, but they're not at all. These details are vital to know what is going on. Sometimes, by asking them, we find out things like the person is taking her hormone at the same time as her iron tablets - which will seriously affect absorption. Or, that they left their NDT off for a week before testing - which would mean the results were useless. Or, they took their NDT two hours before the blood draw - which would mean false-high Frees.
So, two more questions for you:
* How much NDT were you taking when these second results came back?
* How long had you been on that dose?
And, I really am sorry for all the questions, but every detail counts.
I take 0.75 NDT: first thing AM on empty stomach, at least 30 mins before eating
I take 0.5 NDT:around 12pm, away from food for 30 minutes
I have previously been taking another 0.5 NDT at 4pm
I stopped taking the additional half at 4pm 2 days ago because of anxiety. The first 3 days that I took NDT 1.75 (as above schedule) I had great mood, bowel movements etc. Then I stayed up all night studying and was awake for 36 hours. It sent everything off.
I take 0.75 NDT: first thing AM on empty stomach, at least 30 mins before eating
That is 3/4 grain? So, a total of 1.75 grains when on your maximum dose. That's not a very high dose. And, starting an increase then stopping it is not going to help, either.
So, the questions remain:
* How much NDT were you taking when this second test was done?
* And, how long had you been on that dose?
Because it seems to me your timing is off. For a start you're increasing by too much at a time - 1/2 grain instead of 1/4 grain. And you'd probably have better absorption if you waited 1 whole hour before eating or drinking anything other than water.
Well, yes - so far I have made it to 1.75grains as a maximum dose and remained there for 9 days, before dropping back to 0.75 grains out of panic that it was making me anxious. Then I wrote this post. Today I took 1.75grains again as I was concerned that I am taking too little. So I'm a bit all over the shop. 1. I was taking 1.25grains when this latest blood test was taken2. I had been on 1.25grains for 3 weeks when this latest blood test was takenOK, I can wait 1 hour after I take it, that's totally doable.Something I have noticed that might be important - the peak of the anxiety is always 2 hours after I take the NDT.
OK, so you really weren't on that dose long enough to have meaningful results. You need to stay on a steady, unchanging dose for at least six weeks before testing, because it takes that long for all the changes in levels to settle.
So, now you need to decide how much you're going to stay on: 1 3/4 grains or 1 1/2 grains? And, whatever you decide on, you need to stay on it for at least six weeks before retesting if you want to have any true idea of your levels.
Next question:
How long did you leave between your last dose of NDT and the blood draw?
ok, I can do that but can I ask - am I not meant to raise by 1/4 grain every 2 weeks as you say above? Or do I stay on each dose for 6 weeks, test, then raise?
I left 18 hours between last ndt dose and blood draw.
In the beginning you increase by 1/4 grain every two weeks up to a certain point - normally when you reach one whole grain - then stay on that dose for six weeks and retest. As you didn't do that, it's best to do it now. Stay on whatever dose you've decided on for at least six weeks and retest to see where you are now.
You cannot continue increasing every two weeks indefinitely because you would entirely miss your sweet-spot. Sometimes you have to hold a dose to let things settle and your body to adjust to the levels.
When we see the results after six weeks on a steady dose, then we can help you decide how to continue. We have to take one step at a time and try not to second guess the future.
OK. At this point I just want to say how grateful I am for your time on this - you’re so kind.
So I will remain now on 1.75grains for 6 weeks and then I will test again, I see what you mean re. Sweet spot.
Finally - I am worried that I am having this reaction of anxiety because I have an adrenal problem. I tested my adrenals a year ago when I began this self-medicating thyroid journey and they were normal, normal, low, high. I tried taking ACE but that made me feel dreadful. Do you think I need to worry about adrenals?
No, not at this point. As your FT3 level rises, it will take the pressure off your adrenals and your cortisol should return to the correct levels. Maybe get your adrenals retested, if you're really worried. But, if it were me, I'd wait a while and see what the next thyroid test tells us.
I was going to make a post saying the exact same thing. I am in exactly the same situation and my heart goes out to you ❤️ I started Armour 6 weeks ago, As of Monday I am up to 2 grains but still feel like death warmed up. My worst symptoms being fatigue, anxiety and my head feeling like it’s sinking under water and can’t think straight. It’s a miracle if I get through a few hours without crying. I can’t give much advice as I am going through the same but wanted to say that I am here if you want a chat or we can help each other navigate through this together.
I have been in the same boat not knowing whether to drop a dose due to not having enough or taking too much! I have no idea what dose the average person takes but have read on some forums people taking up to 4 grains etc so this gives me hope that maybe I am not at the right dose yet!
I am glad I am not in this alone, it’s very lonely and nobody around you understands what you are going through properly other than the kind people on this forum ☺️
I can send you my mobile number via private message if you ever want a chat x
you’re so kind 😊 it would be great to chat. I’ve been getting a lot of useful information in this forum, some people here are so incredibly generous with their time and knowledge.
Do you find you feel much better initially after raising the dose and then ugh, terrible again?
I know what you mean about the tearfulness, just awful. I feel desperate and all over the place. Have you tested your bloods? It seems you’ve raised the dose quite quickly. Have you come from a background of t4?
SarahElisaDavies, you're increasing much too fast. After six weeks you should only be on 3/4 grain. Not surprising you feel bad, you don't give your body time to adjust.
thanks greygoose, I wasn’t sure the dosage for armour so trusted my thyroid doctor (she also takes Armour). I was sure from researching you could gradually increase to 1.5/2grains and they hold it there for 6 weeks 😞 it feels like no doctor can be trusted these days it’s so frustrating
It certainly is. But, the best way to increase NDT is by 1/4 grain every two weeks. Hold at 1 grain for six weeks and retest. So, now that you're at 2 grains, I suggest you hold it there for six weeks - at least, 8 might be better - and get tested. Increasing too fast means you could easily miss your sweet-spot.
Yes this forum has been a godsend for me! And yes when I raised the dose Monday I felt like my brain was beginning to function correctly and I felt more like myself, then today I have felt worse than ever like I am operating in mud 😂
Is this your first time on NDT? Are you newly diagnosed or previously on Levo?
No I was previously self medicating with NDT and doing really well but decided after a few years I wanted a reputable source. I found a consultant and had to come off my NDT for 8 weeks for testing and diagnosis. I started off slowly and increased by half a grain every couple of weeks and was supposed to hold it there for 6 further weeks. However, I felt terrible and thought maybe I was over medicated so booked a review with the consultant. She said I’m clearly under medicated massively and to raise it again to 2 grains and hold it there for testing. This last increase hasn’t caused any anxiety like the last few which is good so unsure why I feel so crummy today. I think a lot of my problem is getting down by thinking it’s not going to work like last time as I still feel rotten but just need patience ☺️
I see. At least you have the knowledge that ndt has worked for you in the past 😊 how come you decided to change? It sounds like you were onto a winner before!
I followed some truly dreadful advice given by Paul Robinson about going t3 only, after I’d been t4 only for 9 years and did awfully on t3/t4 combined. I ended up on a psych ward, Paul’s advice was so dangerous. So after that I have just been on nothing for a few months pending making a decision about how to proceed. Ndt is the only option left for me, it’s not straight forward but I’m finding it rarely is whatever treatment option you go with.
That’s great news you have less anxiety today! How are your labs? I think greygoose is right - you’re raising fast but your doctor has advised this is ok? Xx
agreed. Just wanted to confirm that a doctor has confirmed this although you couldn’t convince more if you tried that 99% of doctors are hopeless at best, negligent at medium and damaging at worst.
oh gosh I’m so sorry you ended up on a psych ward, I can only imagine 😞 it’s devastating what an impact the thyroid can have. It’s funny you say that because I’ve just started reading one of his books! I really hope NDT is the magic that you need and you get it sorted.
I thought the same thing about raising too fast after self medicating and going slow in the past. As I had no experience with Armour dosage I had no choice but to trust her. She also has hashimoto and is on Armour herself as well as being a doctor so I definitely felt like she would know best 😩 (very difficult to know with doctors)
my labs aren’t actually due until next month once I have completed 6 weeks on the same dose so fingers crossed they are okay but now I’m worrying she has told me too much too soon! X
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