Hope, T3, NDT, Hashimoto’s and determination... - Thyroid UK

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Hope, T3, NDT, Hashimoto’s and determination...

Blue_Bee profile image

Here are the facts (please see earlier posts for my most recent bloods):

Started on 2grains NDT (compounded chemist) 2 weeks ago. Seeing my endo in 7 weeks for bloods and dose adjustment. Was on 80mcg T3 after previous unsuccessful trials of T4 only and T4/T3 mixes. Had hyper/hypo all my life as far back as I can remember (59 now), just hypo for last 10 years, diagnosed Hashimoto’s 19 months ago. Am Coeliac too, diagnosed 15 years ago and totally gluten free diet since. .....Now, since joining and reading here I suspect malabsorption is my main issue. I’m on a cocktail of the best quality recommended vitamins and supplements I can afford, including sublingual B12. I no longer drink alcohol since 3 years, I’ve recently cut out sugar, I make my first batch of SCD yogurt this weekend... sigh... I have a low stress full-time job which I find exhausting some weeks, but it gets me out and about and takes my mind off all THIS. ...I’m meant to be transitioning from 80mcg T3 to zero T3 by end next week so my endo can have a clear 6 weeks of 2grains NDT-only before bloods. I’m down to 40mcg T3 and the 2grains NDT. ...I felt a-maz-ing the first 10 days, in that I felt the longest run of consistent improvement in energy and mental well-being, since being diagnosed. Instead of feeling 4-5 out of 10, I felt 5-even occasionally 6 out of 10! Now... at day 15 I’m back to 4-5 out of 10 and I feel miserable, like I’m dying from my agony-feet, up through my rigid calves. Uggghhgrrrrwaaa!!! I’m filled with dread at the thought of whittling further off my T3 (which lifted the fog and depression at my 14-month post diagnosis mark) and feeling like this and worse for 6 weeks. Over Christmas :-(( So.... my questions are:

1) What does this all mean?

2) How on earth do you lovely people keep going through these tough, painful times?

3) Am I on the right track? Is there hope?

Struggling today, Blue_Bee xxx

12 Replies

Hi BB

Sounds like you are low on NDT, just take another 1/2 grain and see if you feel better. Your Endo has you on a starter dose. This normally only lasts for 2 weeks prior to raising. But Endo’s are total muggles. I take 3-4 grains per day. Separate each grain by 4-5 hours, don't worry too much about when you eat, I just leave about 30-60 min prior to meals. But drink coffee etc over the top of my NDT dose. You need more NDT in Winter to keep warm, less in summer, more if you do something sporty. NDT is like insulin for a diabetic, must be tuned continuously. Find a side effect like tingling feet or temp and use that as your guide to dose. (you've had too much when you get tingly feet). VitB 12 is critical, get booster shots every 3 months (it deals with brain fog).

Don’t take NDT the morning of your blood tests, the T3 will turn your TSH down/off and Endo will have a panic attack.

I wouldn’t mix synthetic T3 and NDT, even mixing brands of NDT is dicky. Your T3 receptors get efficient at utilising a flavour of T3 and hate you for a while when you change.

James

Blue_Bee profile image
Blue_Bee in reply to jamesal0

Thanks James, it’s good to know you’re finding your way with NDT, that it’s working for you. Lots if good suggestions there... I’m a bit limited on the NDT cutting and timing doses etc as in Australia you can only get it on script via a compounding chemist and my current batch are 2grain capsules — nothing to cut really, messy. Not really practical. Interesting comment about not mixing T3 and NDT... I’ve not read that before. There is so much to read and understand and then there just seems to be a certain amount of self-experimenting so I hear you when you share what’s working for you. Thank you, it’s encouraging to hear you’re Hashimoto’s AND we’ll on NDT. BBX

I would only make any changes by a quarter but have you any bloods you can post as I'm sure that will help in getting more replies?

Blue_Bee profile image
Blue_Bee in reply to silverfox7

Hmm once again, the quarter gram changes are not practical right now as I only have access to 2gram capsules and a strictly limited number of those too. Silverfox7 my bloods are listed in an earlier blog I shal try to copy and re-post them here shortly...

Blue_Bee profile image
Blue_Bee in reply to Blue_Bee

Here’s a link to the relevant post where I list my older and most recent (1month ago) bloods

healthunlocked.com/thyroidu...

Blue_Bee profile image
Blue_Bee in reply to Blue_Bee

...copying the relevant bits here... “It’s been 12 months of T4 dancing to TSH, disaster! TSH 5.57 (0.40-4.00), free T4 7.9 (9.0-19.0) and free T3 not measured (of course not!) — and that was after 12 months of “treatment” with my first endo. Then new endo and 3 months T4/T3 various ratios, then the last 3 months just T3 building up to 80mcg daily for the last 5 weeks. Latest results 2 weeks ago TSH <0.005, free T4 <5.2 and free T3 4.7 (2.6-6.0) — highest it’s ever been. “

silverfox7 profile image
silverfox7 in reply to Blue_Bee

I take your point but having a. Impounded NDT I wouldn't know where to start! I read that you start taking half a grain and work up to 2 grains and after increases or decreases should be done in quarter tablets as changes can happen quickly and you don't want to miss your sweet spot. I would ask the Endo what to do next. Others have commented on readings do I hope you soon get things sorted.

Why are you putting yourself through this? I don't understand what you're trying to achieve, here. If you were well on 80 mcg T3 only, why are you trying to change to NDT? It doesn't make any sense. Are you on the right track? Sounds to me like you're going backwards at a rate of knots! Why?

Blue_Bee profile image
Blue_Bee in reply to greygoose

I wasn’t well on 80mcg GG, very slightly improved on the T4/T3 combos, but by no means well. Ha! I wish! And I certainly wouldn’t be continuing to try alternative med combos if I felt well. I can barely even spell the word, I feel that crook. Like an Invalid is how I feel. The above link to an earlier post gives a summary of my recent 19 months of meds trials since being diagnosed. As I said above, the first 10 days of NDT /T3 combo was a noticeable improvement, but now seems to be fading fast.

Isn’t trying different things — always with the goal of reducing these horrible symptoms — isn’t that what this site is about? Sharing ideas, sharing what has / hadn’t worked and then trying select things out for yourself? How am I going backwards? Not sure what you mean GG...?

greygoose profile image
greygoose in reply to Blue_Bee

By going backwards, I mean that you are feeling worse and worse as you lower your T3 - or at least, that's what I understood you to be saying. And, if you're feeling worse and worse, I don't understand why you continue to reduce. That doesn't sound like being on the right track to me.

But, I've obviously completely misunderstood your post, because I thought you said you had felt well on 80 mcg T3. My apologies.

Blue_Bee profile image
Blue_Bee in reply to greygoose

Apology accepted Greygoose, no worries. No, I refuse to simply reduce or change meds simply to satisfy my Endo’s “plan”. I find I just can’t bear one more bad day because “I have to do what the doctor said, even if I feel worse”. No! I will not!!

At the same time, I think I have a good, open Endo who is up on the latest, but my lord! Aren’t there just huge gaps in knowledge and the necessary research when it comes to Hashimoto’s?!! How can he know when the research has not even been done.

I was only 4 to 5 out of 10 on 80mcg T3 — or another way to say this is feeling 40 to 50% of my old self.

Being 100% on NDT only is my Endo’s idea. And actually his view accords with what James said above “I wouldn’t mix synthetic T3 and NDT, even mixing brands of NDT is dicky. ”

So maybe I shot myself in the foot by insisting I titrate off the T3 over a few weeks? I’ve reduced down from 80mcg T3 to 40mcg T3 over the first 2 weeks of starting 2grains NDT. Titrating off T3 was MY idea because even though I was only 40-50% myself on 80mcg T3, that was still way better than 30-40% myself on T4/T3 mix, and.... I did NOT want to go backwards. I agree dear Greygoose, forwards is the only way. I just want to get to feeling 70-95% myself.

I am wondering if maybe my T3 titration coincided with the end of the first 2 weeks “starter dose” of 2grains of NDT and I need to be slightly increasing the NDT now (as James said), not just sitting on 2grains for 7 more weeks when I have bloods and review by endo?

I am exhausted and befuddled by this whole process, that is why I called out for help here. In desperation today I took 4 grains of NDT (they are 2grain compounded capsules, not splittable tablets) and NO T3, and woken with that solid background headache, not good. I never give up, but I gotta say I find this miserable lab-rat process... miserable. I just want to feel well.

... I am open to understanding what you mean, though...

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