Does NDT cause insomnia?: Hi all you lovely... - Thyroid UK

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Does NDT cause insomnia?

DizzyD profile image
6 Replies

Hi all you lovely people out there, here I am with yet another question: Does NDT cause insomnia?

Really would appreciate some help and feedback in my quest for knowledge, to help me understand what's happened to me in light of insomnia.

I have been on a trial of NDT for 3 weeks now (slow increments), reached 1 grain, split dose: 1\2 grain 5am 1\2 grain 2pm. Mild palpitations which passes.

Prior to NDT was on 75mcg of levo.

Generally I am very optimistic using NDT despite feeling very depressed, very low energy, poor cognitive function, etc but now I falling into a pit of despair due to insomnia....straw that broke camels back!!

After years of suffering with extreme insomnia on levo my sleep pattern improved when it (levo) was reduced to 75mcg January 2020, (Other symptoms mentioned above did not improve).

Also saliva cortisol results done August 2020 were for evening, 5pm top of the range nightime, 10pm just above middle of range but still I was sleeping right through the night (not restorative sleep though). How can that be??????

Sadly, now insomnia is back, I on NDT and feel dreadfull....can't go on like this. Can anyone suggest a remedy for insomnia issue?

I do not want to give up NDT trial....just need some sleep, whatever the quality, to escape the awareness of feeling so awful.

Any feedback, a lifeline, would really be appreciated.

Thank you...Have a wonderful day

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DizzyD
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6 Replies
jrbarnes profile image
jrbarnes

The medications don't cause insomnia but low T3 levels will cause sleep problems. You can't fall asleep or you fall asleep and then wake up and cannot fall back asleep? Do you have your lab test results? TSH, T4, T3? I was on 88mcg of Levo for ten years and I couldn't find one of the doses that would work for me on NDT. Anything under 120mg (2 grain) was not enough but 120mg was slightly too much. There were three recalls this year on two NDT brands NP Thyroid and Nature-throid so I got fed up and switched back to Levo and T3.

What brand NDT? It helped me sleep better.

1 grain may not be enough if you were on 75mcg of Levo. However, when you take Levo it is a storage hormone and it may take up to two months for it to completely deplete out of your system. So, in the beginning when you first start NDT your T4 and T3 levels will be higher but after a month or two you may notice your levels going down. I was overmedicated at first but then after a few months I started to suffer T4 depletion and felt terrible. As far as what you feel good on it's up to each individual but keep in mind the T4 and T3 in NDT is static so a lot of people need to add T3 to it. Sometimes increasing the T4 and T3 together can be too much. On NDT I needed T4 levels that were close to what I was getting in Levo.

DizzyD profile image
DizzyD in reply tojrbarnes

Hey you spot on jr regarding sleep pattern. If low T3 is contributing to poor sleep pattern perhaps I could shift my afternoon dose 1\2 grain to bedtime dose. Do you think this might help improve my sleep?

I don't have any thyroid blood results yet (while on NDT) as it too early. These arranged to be done 16 November.

However I do have thyroid blood results while on levo which private endocrinologist used to base trial of NDT dosage on:

TSH 2.69. 0.27 - 4.2

FT3 3.44. 3.1 - 6.8

FT4 16.400 12 - 22

Brand of NDT prescribed is EFRA

Yes you right 're storage hormone dropping even though I have only been on 1grain NDT for three weeks. So when it drops even lower (up until 16 November when I get first blood test on NDT) obviously I am in for a tough ride. Could cope with rough ride if my sleep improved.

Perhaps I could increase NDT by another 1\2 grain to hopefully compensate for the on going decline of levo storage hormone. What do you think?

Along with having no thyroid, I was undermedicated on the 75mcg of levo yet endo total target for me is 1 1\2 grain NDT. (He intends to up NDT after blood test while I on 1 grain).

What is the equivalent of 75mcg of levo to NDT?

Ohh I loosing the plot now jr so brain dead.

So grateful for your reply. Hope you can get the gist of What I have wrote because I can't.

Look forward to your reply...!

Thank you

jrbarnes profile image
jrbarnes in reply toDizzyD

Honestly, I found it incredibly difficult to make NDT work for me. I was on 1 1/2 grain for a number of weeks and had facial swelling and fatigue. On levo my FT4 had to be on the very very top end to squeeze out any FT3 and be functional. I only have half a thyroid and the rest of it doesn't work well on its own. A lot of people with little thyroid tissue end up on higher doses of Levo. My FT4 was also close to yours and it significantly dropped my T3 levels.

I'm not much help when it comes to NDT but you don't want to stay on too low a dose for too long because you'll end up with T4 depletion and develop facial swelling and stuff like carpal tunnel...at least I did. Your Dr says 1 1/5 grains but honestly I think you'll need more since you don't have a thyroid and 75 mcg was underdosing you. On 1 1/5 grains you're shorting yourself close to 20 mcg of T4 and 13.5 mcg of T3 is not much to compensate. It's going to keep your T4 low. The next step is 105mg of NDT which would be about 66mcg of T4 and 15.75 mcg of T3 and of course 2 grains is 76 mcg of T4 and 18 mcg of T3. Depending on the brand it could be a little off. The issue with NDT is what if you do well with 66mcg of T4 but you need 18-25 mcg of T3 or what if you do better with 75mcg of T4 but only need 15mcg of T3. Each person has their own needs and this is where NDT didn't fit my needs. This is why I sought out a Dr that would prescribe a synthetic combo of T4 and T3.

I'm over in the US so our options are a little different but some people get a hold of ERFA here. SOunds like no matter where we are the problems are the same with thyroid care! My sleep problem is that low T3 makes me wake up when it's still dark outside. The only way I can get back to sleep is to take a little T3. It's possible if you were to take 1/4 grain it could help you get back to sleep. You're probably going hypo through the night. Low T3 also affects my cortisol. It's just terrible. I cannot cope with little sleep!

DizzyD profile image
DizzyD in reply tojrbarnes

Hey good day to you JRB. First of all thank you for your informative/supportive replys which I will save for future reference as I am a novice when it comes to NDT. If I fail with NDT, like yourself I could use synthetic T4 and T3, if I can get it prescribed as it is very expensive here in UK. Anyone that's just a future possibility should I fail with NDT whatever the reason.

Last night I awoke again after falling asleep for half an hour. So, living in the solution, I took a page out of your book, (or should I say sentence) and dosed with small amount of NDT, with no expectations, or doubts, just an open mind. IT WORKED SLEPT SOUNDLY THROUGH REST OF THE NIGHT. I could hug you and dance with joy. Certainly a cause for celebration!!!

It was as you stated: lowT3. Clever you!

My gratitude to you is priceless. Thank you is not enough.

Today was the best day I have had in long time....my optimism is back......can now see a future. God only knows what state I would be in had you not replied to my post?

In my book insomnia is worst thing ever....it's like torture...no escape from severe hypo symptoms..

Have a prosperous, rewarding day. God Bless you

jrbarnes profile image
jrbarnes in reply toDizzyD

That's excellent news! Glad I could pass on some useful information because no sleep is horrendous. Yes, T3 price here depends on the quantity. The price for 5mcg two times daily for one month has a cash price of $96 USD, however with our health insurance plans they discount it down to $30 USD. T3 prescription is the only thing keeping me able to walk and get out of bed so I cannot imagine how people in the UK are dealing with the price and difficulty of getting T3. Good luck to you!

Shredder profile image
Shredder

It is a difficult one. I was on two grains of Armour by Forest and my sleep improved dramatically teo years. I am now on 2 grains of Thiroid from Thailand which I had left as Armour stopped working when they were bought ouy but that gives me no deep restorative sleep, I am assuming due to huge amount of fillers. I struggle to get through the day but felt awful on Levo which alleviated none of my thyrpid symptoms despite high doses.

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