Hi everyone. I've been on a real journey since January with Hashimoto's. I started on levothyroxine and it made me feel a lot worse.
I started seeing a private thyroid doctor who looked at my bloods and saw my T3 had dropped on levo, and with my symptoms she decided levo was not right for me and put me on NDT (Armour)
I've been on Armour now for 9 weeks. I'm up to 2 grains. Some of my symptoms are better (mental health GREATLY improved, periods normal for first time in 5 years, physical body fatigue better, improved appetite, no more bradycardia, little bit of weight loss, less palpitations)
However the symptom I have found the most debilitating through this whole journey - sleepiness/"head" tiredness as I call it/foggy head - has not got better. Initially when taking NDT it improved, and initially with each dose increase too, but it always comes back. It can be absolutely debilitating at times and leave me spending the whole day in bed.
I did a 4 point saliva cortisol test and found my waking cortisol is atrocious. The only time this symptom improves is late at night, oddly. I am most awake after midnight.
I am wondering if the sleepiness is to do with cortisol.
Has anyone been in a similar situation to me and needed T3 only? My doctor did say initially when she saw my cortisol levels that I might need T3 only. She said she would recommend it after 3-6 months on NDT if I'm still unwell.
I haven't had bloods done on NDT yet, I'm due to have them soon. I understand though that 2 grains is a fairly decent dose and I'd be surprised if I needed much higher? As I'm not a large person.
As for vitamins, I had them tested in January. All was ok except vitamin D which I've been supplementing high dose. I'm also taking iron, b12, b complex, selenium etc even though my levels for those were all ok as I want them to be optimal. Haven't retested but may do soon.
Just wondered for those who made the jump to T3 only, when did you realise you needed to?
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rosael56
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How much Levo were you taking before switching to NDT?
For someone only diagnosed only 4 months ago you've tried a few things already and seem not to have given treatment a chance to work.
Hypothyroidism takes a long time for us to get unwell and it also takes a long time to get better. Dose changes should be slow and gradual with time inbetween to let your body acustom to the hormone. Otherwise we can get unwell.
If your iron or ferritin has been low then that alone can take many months to improve. Are you also taking vit C or drinking orange juice with it to help it absorb?
Which B complex are you taking?
Its not time yet to start thinking about any different treatment. Give NDT a chance.
I only ever took 50mcg of Levo. It made me feel so drastically worse very quickly that my doctor said I should switch. I was mostly bed bound at that point and unable to walk up or down the stairs. I gave it 8 weeks but I felt like I was being poisoned, even though my levels had improved (apart from T3 which had gone down)
I guess I'm being impatient, but it's hard because the tiredness is so bad. I can't work, I'm now claiming benefits. I'm getting married in 12 weeks and I'm honestly worried about making it through the day, as currently I can't get out of bed before noon and still need a nap every afternoon too. Some days I have a severe drowsy/foggy feeling in my head all day long and can barely think.
So I guess I'm just desperate to get this tiredness improved ☹️
My ferritin was 52 in January, but I am taking ferrous fumerate to increase it, and yes I do take vitamin C and drink orange juice daily.
The B complex I'm taking is just one I got off Amazon. Are there brands that are recommended?
I guess the reason I'm concerned as well is because my cortisol is low and from what I've read, T3 only is often the treatment people need to rectify that.
You're right I probably need to be more patient. My fiance always says I'm such an impatient person! 🤣
I understand the impatience, I really do, but this is a condition where the tortoise wins the race.
If you keep flipping from one treatment to the next and rushing dose changes then you could make yourself worse and also miss your sweet spot. In 12 weeks time you should feel a little better than you do today but you may well not be 100%. You will have to accept that and plan accordingly.
Even if you were on the right dose now it could still take months for your body to recover and tiredness to reduce. You need to give your body (and mind) a lot of time to heal, theres nothing more to do but more time.
50mcg Levo is just a starting dose. Levo replaces your own thyroid hormone production, it doesn't top it up. Its completely understandable that your FT3 would drop on 50mcg Levo. Had you raised the dose and got your vitamins to optimal it would have gone back up.
We dont recommend an iron supplement for ferritin unless you have done an iron panel and your iron is also low. 52 is actually not terrible for ferritin.
Ferritin should be around 90 - 100 for best use of thyroid hormone. Suggest increasing iron rich foods in diet and eating them often. Chicken livers, pate, red meat etc
Thank you for your advice, I appreciate it. I do hope things improve in the next few weeks.
I think it was my cortisol levels that made my doctor think I needed NDT, as she said T3 is what raises cortisol, and levo wouldn't do that on its own, if anything levo 'uses' more cortisol.
I find my symptoms are very up & down which is highly frustrating too. I'll have a few days ok, then a few days absolutely terrible. Can't plan anything or live life normally when you have no idea if tomorrow you'll have to spend the day in bed. I will likely have to take a nap on my wedding day 😐
I did a 4 point saliva cortisol test and found my waking cortisol is atrocious. The only time this symptom improves is late at night, oddly. I am most awake after midnight.
Adrenal Fatigue. Lots of hypos get it if left un/under-treated for too long, because when thyroid hormone is low, the adrenals make extra cortisol to make up for it. But, they cannot do that forever.
Cortisol should be highest early morning, to get you out of bed and started on your day. Levels then drop through the day until it's at its lowest at bedtime, to allow you to sleep.
When the adrenals are fatigued, they fail to make their morning quota in time, but continue trying until they succeed, and by that time it's time to sleep but you can't because of all that cortisol.
Problem is, most doctors do not believe Adrenal Fatigue exists (except those that actually have it!) so won't do anything to help. For them, you either have Addison's or there's nothing wrong with you. They won't accept anything in between.
So, you need to get tested for Addison's, if your levels are low enough, or give your adrenals a lot of TLC and rest until they recover - and adrenals can recover from Adrenal Fatigue.
Adrenals need lots of B vits and vit C. They need plenty of salt and early-morning protein. And freedom from stress. And they need good levels of FT3. So, give them all of those, and make them your priority, and they will bounce back again. Taking some sort of adrenal support might also help. And try the Adrenal Cocktail: 1/2 tsp salt in a glass of orange juice with a 1/2 tsp of Cream of Tartar (potassium).
When did I know I needed T3? Very early on. I've written all about it on my profile.
Thank you this is very helpful. Luckily my doctor does acknowledge adrenal fatigue! She isn't worried about Addison's as a) my levels aren't low the rest of the day and b) I don't have the major symptoms of Addison's. So I figure it's adrenal fatigue. Also don't thyroid hormones make Addison's disease loads worse? I figure I wouldn't be able to tolerate 2 grains of Armour if I had it.
I have tried adrenal cortex for a few weeks but haven't noticed any improvement from that. Maybe it takes awhile to work? I've been doing all the other things! The vit B, vit C, adrenal cocktail, less stress.... Unfortunately it doesn't feel like it's doing much yet.
I will read your story, thank you! I do wonder if I will end up on T3 only eventually.
I'm currently reading Paul Robinson's book "Recovering with T3" and he had both hypothyroid and hypocortisolism, but not Addison's. He recommends 1000-2000mg of vitamin C spread out in 4 divided doses throughout the day for adrenal support. So 250-500mg each dose.
I got the Kindle version of that and the CT3M book. I have Kindle unlimited and both are free for me. An interesting read. He never felt well on Levo and lost his job and very nearly his family by the sounds of it. He said around 20% of Hypo patients cant take T4, it just doesnt suit them.
Hi 👋 Sorry you're struggling & I hope the advice on here from the 'knowledgeable ones' helps you a lot. I was just wondering, are you in the UK? It's just that getting NDT on the NHS, let alone T3 is virtually impossible - and your Dr sounds very supportive (rare in the NHS!) + you mentioned they accept Adrenal Fatigue is real, neither of which remotely possible with UK GPs in my sadly now vast experience! Anyway, good luck with everything ✨️
I wonder if this is a NHS endocrinologist too and treatment within the NHS?
rosael56 as someone who was diagnosed during pregnancy, and is still wishing to have a child with age not on my side, I totally understand the keenness to be well. As the site often proposes, I have gone the slow way with levothyroxine when it clearly does not suit me and I wished I had tried something else sooner. There should be a much better way to decide if levothyroxine isn’t for you than taking a year to increase dose and still feel s&&t! I wonder if on this forum we are too UK NHS centric? For example, in USA if levothyroxine wasn’t suiting you, you’d just be started on NDT instead.
Once size does not fit all. Trust yourself as no one has all the answers.
P.S. I hope you have a wonderful wedding and I am sure despite all this you’ll take away find memories 🫶🏽
Hi HealthStarDust I believe we've chatted quite a bit by private message before!
My doctor is private, NHS has been no use to me.
I agree. I trust my doctor. She could immediately see levo wasn't right for me, she didn't hesitate in saying I should try NDT, and put on my notes at that point, before I'd even tried NDT, that I may need T3 only. I assume she sees so many patients like me that she could tell from my results and symptoms.
I wouldn't have been able to keep going on Levo. It was horrendous, I was becoming suicidal too. My mental health is loads better on NDT.
Thank you for your kind words! I'm sure it'll be a wonderful day, and all my family and friends have been so kind and understanding and said if I need to go have a lie down during the wedding then it's completely fine. I think I'll just have to accept it really. I need my naps like a toddler does 🤣
Bless you & I wish you all the luck in the world with your baby plans 🙌🙏I developed Hypo symptoms after my Son was born, and have never been the same since. I truly hope you can have your wish answered 🤞
💯 agree and just wonder what, if anything (?) is being done by 'Thyroid UK' (?) and others in this field to drag the NHS out of the dark ages & into reality. Unlikely in my lifetime it seems.
How odd! I was thinking on similar lines the other day. Other patient movements over time have successfully advocated for major changes. We don’t seem to have an equivalent movement.
Hello, I am in the UK yes but my doctor is private! I got very little help on the NHS. For months I was told I didn't have a thyroid problem and I just had mental illness. I finally got diagnosed and given meds very reluctantly (at this point I had below range T4!)
When I told my NHS doctor I felt worse on levo he suggested I exercise more.... After I'd just told him I was too unwell to get out of bed 🙄 then he told me I must be depressed.
A few months later after seeing my private doctor I showed my NHS GP my cortisol results. He didn't have a clue what they meant. He admitted as such.
Private is the only way I've been able to get any real help. NDT is really expensive on private prescription but it is what it is.
Your GP sounds an absolute disgrace (but I received similar comments when I first raised symptoms between 2005 & 2011 when they finally agreed to take bloods & I was diagnosed with Hypothyroidism). Things are no better with any GPs I've had since. HOWEVER, your private Dr sounds absolutely amazing & you are clearly in safe hands there 👏 Good luck with everything & take care 👍 p.s Enjoy your Wedding Day 💕
'When I told my NHS doctor I felt worse on levo he suggested I exercise more.... After I'd just told him I was too unwell to get out of bed 🙄 then he told me I must be depressed.'
How obscene.
There are not enough rolling eyes to cover such nonsense. 🤩
Is it autoimmune low thyroid you have? If so have you tried gluten free? A lot, like me do not show up on blood tests but it wipes me out.
I am not sure I agree with the keep doing gluten for 6 weeks, then do a blood test scheme that is often put forward. I would cut it out completely for a few months and see if I felt better
Feel for you. I am pretty recent(18 months) and remember how desperate I was to feel better but as the wise kind ones say above, it takes time for your body to heal.
I took a little t3 with 150 mg of T4 after sat 6 months when repeated bloods showed low T3. I was on 125 mg T4 after by about 2 months. I have never had adrenal tests.
I would say feeling a lit better just on T4 but T3 has improved further.
I've been strictly gluten free since January! Unfortunately I haven't noticed any improvement from it but I will keep going as I've heard it can take up to 6 months to make a difference!?
Thank you, I think patience is something I need to work on haha
Hello,I started on levothyroxine, but felt progressively worse regardless of dose increases. I am now on T3 only, although I am not fully better. I think I need a higher dose, but NHS endocrinologist won't increase it due to TSH!!!!
Currently I am trying to optimise vitamins and minerals. But, NHS won't test everything. Cannot afford private.
Some recent blood results were abnormal, yet GP says no action. What is the point????
NHS test TSH and dose levothyroxine based on result. Totally inadequate, but the medics don't dose on symptoms, purely TSH. Years ago, when NDT was used, it had to be dosed by symptoms. But NDT contains T4 and T3.
It is obviously cheaper for NHS to use chemically created levothyroxine which is T4 only. One size fits all, when it doesn't.
Hormones affect the whole body. Anything off kilter can have drastic consequences. I know.
I am trying to fight on.
I agree with others on this forum who say that you have not given the medication time to work. However, when I was on levothyroxine only, my cortisol was very high, although not addison's disease. Now on T3, cortisol has gone down.
You are not alone.
Many on this forum have great knowledge and experience. I am just beginning.
Good luck on your journey, especially your upcoming wedding. I completely understand your urgency to feel well, but, sadly, it may not be a quick fix.
Thank you for your reply! I agree with everything you've said about the NHS. I am fortunate to be able to go private, as I got very little help from NHS.
The general consensus to my post seems to be that I need to be more patient and give the NDT more time. I will work on my patience 🤣
You asked about those of us onT3 only and how or when we knew. I had been on levothyroxine 100mg and was just never feeling much better. After starting at 50, then 75, then 100 where lab numbers edged near in-range for official thyroid land but nowhere near optimal, Doc wanted to raise it to 125 and got angry when I said something else needs to happen: continuing to do the same thing and expecting different results is the definition of stupidity. Different doc added t3 with almost immediate improvement. Still after a while felt icky and foggy so she reduced levo and raised T3 gradually. Bingo! With the other hormones also in balance (estradiol, progesterone, testosterone added and tweaked), I have been feeling great on T3 only. Also D3 and B12. Also low sodium and little gluten. It was the brain fog and constipation that clued me to try T3. Good luck!
Does t3 make your heart race or anything? I’ve been on synthroid and Levo for 32 years and I have felt so bad for way too long. I have slept or been in the bed for decades. Had to quit college, been fired from jobs and can hardly function with life. The doctors where I live are not well educated with the thyroid. I would like to spend some of my life with a little bit of energy and feeling good before I die. Thanks so much. Sick and tired of being sick and tired.
For me, the proper amount of T3 did not make my heart race but too much T3 did. It was an easy way to tell if there was too much T3 or if I needed to spread out the doses.
I want to just stop the meds but don’t want to have a thyroid storm and almost die like my aunt did. I’m glad you found help for yours and I pray for your health to continue to get better. I have hope for my own. Take care
Thank you this is helpful! This is how I feel. NDT is an improvement on Levo but I still feel icky. Will see how it goes but T3 only does sound really promising.
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