Started efra ndt, confused : I was on synthroid... - Thyroid UK

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Started efra ndt, confused

Nora3 profile image
29 Replies

I was on synthroid 7 years ago for almost 3 years, the lowest dose ...I think .25 mg. Towards the end I was feeling sick so i came of synthroid cause I couldn't get it to work for me and no one would listen to help me.

I remained hypo thyrod...I suffered differently, my cholesterol went up, homeocystien went up, I developed major insomnia, my period stopped, developed histamine issues and food sensitivities. These are the top side effects I experienced. No weight gain, no puffy eyes etc.

I just started efra ndt a low dose cause I'm super sensitive and I feel adrenals are weak and hormones tanked. How should I dose to feel good. I am only taking a low dose and my eyes got very puffy and I gained weight all the next day after dosing. Why? I even got constipated something I never was. Now I have pellets instead of the perfect poop. Help ? Should I even be on meds ?

Or does one get these side effects starting out? Please help. Thank you.

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Nora3
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greygoose profile image
greygoose

Well, I think you should be on 'meds' because your symptoms sound more like hypo than hyper.

I would imagine that the reason - or one of the reasons - Synthroid never worked for you was that you were on too low a dose. 25 mcg isn't even a starter dose. And it should have been increased after six weeks. 25 mcg is just enough to stop whatever hormone production your thyroid is managing naturally, but not enough to replace it. So, it makes you more hypo.

Have you had labs done since being on NDT? If so, post them on here, with the ranges, and let's have a look. How much are you taking, exactly? Have you had your nutrients tested - vit D, vit B12, folate and ferritin? They all need to be optimal for NDT to work. :)

Nora3 profile image
Nora3 in reply to greygoose

Thank you so much for your timely reply. When I was on synthroid I was on the lowest dose, but my doctor did give me permission to raise, which I did and became hyper. I got the sweats, rapid heart beat, anxiety, edginess, even suicidal thoughts etc. Looking back I wondered if it was more adrenal issues then thyroid.

Anyway I did low dose synthroid for two years or so but it wasn't helping me and it was making my gut health worse along with other side effects etc. So I weaned off it. I did try a low dose of ndt at this time and even tried t3 but both were so strong and caused major brain fog, irregular heart rate etc. I tried a few years to make either work and then gave up. I didnt mention this above because I have been on and off meds for so many years. And I am so confused as to why my body doesn't do well with meds ...if I am hypo. Or is there another underlying issue.

I just got mercury fillings out and I think this has caused the recent hike in my tsh, oddly my free t3 and free t4 went up. Not to ideal numbers but an improvement. But why did my tsh go up and yet my free t3 and free t4 improved. My endo said maybe the tsh is working hard to raise the free t3 and free t4 wnd this is why it is higher ....he is an idiot and I am not sure I can believe him.

I see a functional med doc who has prescribed the ndt. She wanted me on bio identical progesterone cream as well, but this back fires on me if I am on it longer then 2 weeks. I am so damn sensitive to everything!

So without meds my my land ar as follows

May 31. Sept 21

Free t3 3.4 (4-6) free t3 4.2

Free t4 11.5(10-25) free t4 12.7

Tsh 2.6(2-4) tsh 4.4

My tsh has been 2.2, 2.5 etc and has never been this high before.

My free t3 wnd free t4 jabe always been bottom range.

I started ndt 5 mg only...I have it compounded because erfa starts at 30 mg. And this is too high of a dose for me. Last time I tried this 5 years ago it caused me to crash. So my functional med doc gave me 5 mg to start and to play with dosing till I reach desired level. I tested reverse t3 and this isnt an issue for me.

Vit b12 is 600

Dont know vit D but due to VDR taq dosing vit d isnt easy.

Folate I've never tested so not sure

Ferritin 96 and iron 16 ...these have been good.

Anyway eyes are puffy since starting 5 mg of ndt on Friday. Gained weight around waist. Any thoughts? Thank you kindly.

greygoose profile image
greygoose in reply to Nora3

The problem with low doses like that is that they can be enough to stop the natural production of the thyroid, but not enough to replace it. So, they can make you more hypo. They are certainly not going to do anything positive for you.

I think that, as you can't increase your dose, your adrenals really need looking at. Can you get a 24 hour saliva cortisol test done? And get DHEA tested?

Your nutrients don't look too bad, but it would be an idea to get folate done, too. And vit D. I don't understand what you're saying about dosing vit D.

Nora3 profile image
Nora3 in reply to greygoose

Yes that is my main concern as well, staying on a low dose is probably hurting my own thyroid production. Ugh it's like I can't win and I get so confused on what to do. I did a saliva test years ago and it came back low cortisol. I know I Jane adrenal issues due to not sleeping well for a few years due to being hypo and tanked hormones. I practice everything else correctly-meaning mediation, low stress, eat well, I a, the perfect patient ....I am a yoga instructor and work my own hours (very laid back life style) trust me my life is ideal. How I can't heal is beyond me.

I feel the reason is cause I can't sleep and why can't I sleep ....that's the questions.

It is related to my histamine reactions to food....although I consume low histamine but it effects neurotransmitters.....and then this histamine issue became worse once off thyroid meds. It's all connected. So it is this viscious circle I can't get of.

Vdrtaq....I did my 23 and me testing and this is a snp for vit d....meaning when I dose vit d it causes me issues....my genes react to it...causes me anxiety and worsens my insomnia. My storage vit d with this genetic snp usually shows high.

I can try and retest.

So the low dose of 5 mg may be making me more hypo ugh , I have taken my morning temp and it is 98.0. Which is good for me. During the day it is also 98.3 etc.

I'm not sure what to do. Do I try and raise or do I risk feeling worse. Do I need meds ....I'm so confused.

greygoose profile image
greygoose in reply to Nora3

I think you should redo the saliva test. Things could have changed a lot since you last did it. :)

Nora3 profile image
Nora3 in reply to greygoose

Oh I am sure my adrenals jabe shifted and I'm sure they're similar and cortisol still low...but what will it reveal ...if I have adrenal issues then what ? How do I approach ndt.

I know I have adrenal issues...I mean five years of insomnia and burning the candle on both ends ugh. I mean I still go to bed for 9 ish and get out of bed 6 ish ...I do still get rest and down time but not restorative sleep.

If it shows I habe adrenal issues what would I do ...support them...I am doing this. Would it change the way I approach ndt ?

I mean if my thyroid function has been low...it pulls down adrenals...if adrenals are low it pulls down thyroid...its like I'm stuck ...and dont know how to fix them. Do I stay on a low dose ndt...will it make me feel worse ?

My plan is to do a dutch plus test which will show health of adrenals. I am saving for it and should have it bought by the end of the month.

greygoose profile image
greygoose in reply to Nora3

How are you supporting your adrenals? And, how low was your cortisol? If it's very low, you might need to get HydroCortisone prescribed. If it's not so low, you may be able to approach it in other ways. It all depends on the numbers. Which is why I say you would probably be better off getting retested to know exactly where you are now.

Nora3 profile image
Nora3 in reply to greygoose

Yes the dutch test will reveal more once I get it done. My cortisol was low, I was using ashwagandha as a herb and others. I have to be careful because over using the herbs over stimulates me. I cant even handle b vit. I am very sensitive. B vit can keep me awake all night.

I was never this sensitive but it got worse over the years as my insomnia grew worse and hormones tanked.

I will try and get this test done so I have more info to work with. My doc gave me dhea to help support my low dhea levels. But I had to switch to 7 keto dhea because the dhea was converting to bad estrogens and I was getting reactive. According to blood work I have low prog. Low estrogen, low testosterone, etc...but I read blood work not so accurate and the dutch test is better as its slaiva.

greygoose profile image
greygoose in reply to Nora3

Ashwagandha is an adaptogen. And, although adaptogens are supposed to even hormones out, a lot of people find that they actually lower cortisol.

Shame you cannot tolerate B vits, because adrenals need lots of B vits. They also need a lot of vit C. Are you taking vit C? And magnesium? Taking magnesium at night can help with sleep. And salt? Are you getting enough salt? Adrenals need plenty. They also need a high protein breakfast as soon as you rise. Have you tried taking a glandular, like Adrenavive?

Nora3 profile image
Nora3 in reply to greygoose

I am finding it hard to source a corn free vit c. I tried liposomal vit c from livon labs and reacted due to it being corn based...I have tried many whole food vit c but this creates histamine reactions. If you know a non gmo non corn based vit c I would love to know and would try it. I've tried many vit c without success.

I have tried Thorne adrenal cortex and got agitated and angry and very on the edge, wanting to explode at everything and anyone around me.

Interesting about the adaptogens...I didnt know that. Thank you for the info and again taking the time to try and help me.

B vit...I dont give up...I do still try and take them...I test the waters here and there and take one...but I get so hyped...

I have taken vit c Myers cocktail ...this keeps me awake for a day...but I do still do it every few months just to give my body a boost.

My efforts are there and I do try it's just anything that makes my sleep worse I have to back down from to recover so I can teach my yoga classes.

One thing over noticed even with this low dose of 5 mg of ndt my air hunger is gone !!?? Was my air hunger from thyroid pr adrenals?

greygoose profile image
greygoose in reply to Nora3

Thyroid, I think.

I take Simply Supplements Super Strength Vit C with rosehip and citrus bioflavonoids. It doesn't contain any corn, but I don't know if it's non gmo. I would imagine it is, though. I don't think you get gmo rose hips or citrus fruit.

How about the salt? You didn't mention that.

Is it all the B vits that affect you? Or maybe just B6?

Nora3 profile image
Nora3 in reply to greygoose

Sorry yes I do take a ton of redmond real sea salt...I over salt my food...I crave it actually and lick my plate with the remainder salt lol sorry for the visual ...my diet is full of healthy fats ...ot may lack protein as mean sits like a bomb in my gut and legumes are high histmaine.

So at one time I was low carb keto wnd this made me worse.

I notice and feel everything stuck in my throat ...like fold coming back up. I have low stomach acid ...I know this but cant handle hcl betaine as betaine is a methy donor so it speeds me up.

I know isnt this the story of my life...everything I try causes me to speed up.

I've tried b 6 alone and b 5 alone and same results from both. BUT I can try again. It's been about 6 months since I've tried to do it again. I get discouraged. It's hard.

I will check out your supplement suggestion for vit c. As mentioned it is the histmaine thst road blocks me when it comes to foods and vit.

Magnesium is hit or miss. I use magnesium oil and it works for a bit and then caused me issues with sleep. I took magnesium byglcinate wnd mag threonate and malate but they all make me feel wired.

I can only think that this happens because I am so rock bottom and weak and any time I try to methylated (just give my body anything to help it) it revs me. I am over stimulated.

greygoose profile image
greygoose in reply to Nora3

Yes, a complicated case. And I imagine doctors haven't got a clue! I don't think I have, either. But, if I think of something that you might not have tried, yet. I'll get back to you. That's all I can say. Sorry I can't be of any more help.

Nora3 profile image
Nora3 in reply to greygoose

You are bang on ...doctors are clueless and I have paid so much money to see naturalpathic doctors as well. The only person that has been helpful and understanding is my functional med doc I pay for privately ....but she is still not able to figure me out ....she has been a positive because she has given me NDt and t 3 etc any prescription I want to explore and try and heal. She said to me that I am unquie and complicated and we just need to keep trying.

I appreciate your support and I will keep you posted....I may come back to you after I have blood work after being on NDt for a few months. I hope this is ok ? Thank you again.

greygoose profile image
greygoose in reply to Nora3

That's fine. :) Hope you find something in your labs.

Nora3 profile image
Nora3 in reply to greygoose

Oh sorry I have one more question .....is it possible, cause I always read that you NEED to be on so many grains to feel well etc. Is it possible that one only needs 30 mg of ERFA ....etc. Is a low dose ok for some ...does one have to reach these high doses ? I know my functional med doc is only 1 grain and she feels great she said.

greygoose profile image
greygoose in reply to Nora3

It is possible, yes. It depends how you feel. Symptoms first, then labs to back them up. :)

Nora3 profile image
Nora3 in reply to greygoose

Ok sorry one more question ....I have been on 5 mg for one week tomorrow....I want to raise slowly ....what is normal raising protocol? I was thinking I would raise again tomorrow 5 mg ? I know my dose is super super low ....and most don't start this low. Do I go based on symptoms ....right now my HR is good, no drastic changes ....my sleep is still same (which is not good) but at least it's not effecting my sleep, my body temp has come up ....but I do notice it does drop a bit through the day ....maybe a sign to raise.

I still have the puffy eyes etc...but not sure if this is due to adrenals fatigue ....or thyroid trying to work ....etc...so hard for me to know.

Anyway lol see how long winded I get....my basic question is do you think ok to raise another 5 mg to test the waters ? Even if adrenals are weak....a well functioning through is important to help heal adrenals as well ....right ?

greygoose profile image
greygoose in reply to Nora3

I would leave for another week, if I were you. NDT is usually increased by 1/4 grain every two weeks until you get to one grain, then hold for six weeks and retest. So, even though you're only on a very small dose, given your problems with raising, I would wait another week. :)

Nora3 profile image
Nora3 in reply to greygoose

Perfect i will wait another week, I want to Express my thankful gratitude to you for helping me sort through my thoughts🙏❤I also think I found a bit C I can use and will buy. Keep you posted :)

greygoose profile image
greygoose in reply to Nora3

You're very welcome. :) Good luck.

Nora3 profile image
Nora3 in reply to greygoose

Good day I just wanted to update, I took an extra 5 mg today of ndt. I only started 5 mg 2 weeks ago and have to raise slowly due to being so sensitive. So I took 5 mg at 6 am and another 5 mg at 10 am.

My resting HR has always been low because I'm a very active/athlete type person. So normal for me has always been 53/54.

Being hypo ans when on no meds it has dropped as low as 48/49.

5 mg resting HR is 52/54

10 mg resting HR is 59/62

Should I be worried with the increase in HR with the added 5 mg today?

Also I was disappointed to see my temperature DROP...it has been 98.0 and higher on 5 mg only and when I added the extra 5 mg to make a total of 10 mg of ndt my temp dropped. One hour after ndt it dropped to 96.7, 2 hours later 96.9, 3 hours later 97,2 and that's the temp It is at.

Ugh my head goes crazy and i wonder am I stressing my body out ?

I am still having the side effects of puffy under eyes, fluid retention, brain fog etc starting meds...never has this before meds.

Any thoughts...welcome. thank you

greygoose profile image
greygoose in reply to Nora3

I'm afraid I know nothing about heart-rates. Or temperatures. But, I do think you've got to give this time to settle down. You only started the extra 5 mg today, and there are no instant results with hormones.

It's not unknown to develop more hypo symptoms when you start taking thyroid hormone replacement. Your body has a lot of adjusting to do.

But, if you want more opinions, start a new thread so that more people see it. Not many people are going to read this one, now. :)

Hypopotamus profile image
Hypopotamus

Sadly, NDT is like many other medications in that you have to find the right one for you.

If you say that you gained weight in just a day, and that your eyes are puffy, it sounds as though your body is retaining water, which would account for the constipation/stools. Stools need that water to bulk up, and 'stimulate' the process of elimination.

You do need some tests to help you get on the correct dose of NDT, and see if you need any other supplements.

Nora3 profile image
Nora3 in reply to Hypopotamus

Thank you for your reply. It is such a confusing process. Wonder why I am retaining fluid....do you have any thoughts ? I can definitely feel fluid retention around my waist, thighs, under my eyes, face etc....and this was from five mg of NDt. How can 5 mg do this. Will it go away ?

Although the five mg has lifted my body temp in a positive way, why the fluid retention ugh....if my adrenals are weak...which I know they are due to not sleeping due to being hypo and having histamine issues ....how do I know if I can raise ....will I feel worse ?

What I also thought is it possible the five mg got my body to start methylationn / functioning ? ...and the puffy water retention and not pooping / constipation is possibly my body trying to function and detox etc and is struggling ?

Ugh I don't know if I should stop ...stay on low dose....try and raise .....I am scared and don't know what to do.

Help...

Hypopotamus profile image
Hypopotamus in reply to Nora3

You really do need some blood tests to see if you are hypo or not. Like you say, it could all be a healing reaction, and you just need to keep going to see what happens. But you should find out for sure if you actually need thyroid meds.

I used to have sleep problems, but now rise at five in the morning, and get to bed by nine at night. I do as much as I can in a day to make sure that I am tired enough to go to sleep fairly quickly.

Nora3 profile image
Nora3 in reply to Hypopotamus

I posted my blood work above.

My tsh has always been around 2,w to 2.7...recently jumped to 4.4...this may be because I just had mercury fillings out.

My free t3 wnd free t4 jabe been on low end of the scale.

My free t3 actually has been below normal for years and this recent test actually came in range for the first time in 3 years.

My free t 4 has always been on low end of scale...

May 31 Sept 21

Free t3 3.4 (range 4-6) free t3 4.2

Free t4 11.5(range10-25 free t4 12.7

Tsh 2.6. (Range2-4) tsh 4.4

My tsh has been 2.2, 2.5 etc and has never been this high before. But as mentioned had mercury fillings taken out.

I practice solid sleep habits. No electronics hours before bed, exercise, get day light ...etc. I am a very healthy active female with very little stress. I teach yoga and am my own boss. I have a great family etc.

My sleep got messed up when I first tried ndt 5 years ago and raised it too high ....this is my fear. I was always on a low dose of synthroid, and couldnt raise it....due to getting hyper so stayed on the lowest dose of .25 I believe. It did work initially for a bit but then stopped. When I tried to switch to ndt I was on 30 mg.....i was told to raise to 60 and then 90...i felt like shit and it crashed adrenals. I was very healthy when this all happened. I tried to make it work but eventually weaned off... I tried t3 as well...without success.

Anyway I remained with major insomnia and couldnt never recover my sleep. I tanked sex hormones due to adrenal crash etc. My body is mildly hypo and I cant get out of it. I've tried over the years to naturally heal ....and remain with major insomnia and I feel it comes back to thyroid. My period stopped, fatty liver, high cholesterol, food sensitivities all developed over the last few years.

So here I am again trying to make thyroid meds work to get me out of this hell. I mean I am not over weight some would say I'm under weight for my 5 foot 10 frame. Weight isnt an issue for me.

But I do have other hypo symptoms it's all so confusing for me ugh

Do I stay on meds or not ugh

Hypopotamus profile image
Hypopotamus in reply to Nora3

Sorry, I confused you with somebody else that I had been replying to. I would say persist with that low dose of NDT (I am guessing it is 30mcg), and see what happens. You certainly don't seem to be doing anything wrong re your life style.

Taking Thyroxine or NDT if it isn't needed it will result in somebody not being able to sleep well, but I can't understand why that situation would persist after when the medication is stopped.

Nora3 profile image
Nora3 in reply to Hypopotamus

No worries it's ok, I appreciate you taking the time to respond...and actually I am only taking 5 mg of a compounded ndt ...I have erfa 30 mg and i am working towards this. But right now taking 5 mg ...and will slowly raise ...i will be one week on 5 mg and will raise tomorrow another 5. I couldnt start at a higher dose as it causes me anxiety and rage and heart palps.

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