How quickly have you recovered with T3 only? - Thyroid UK

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How quickly have you recovered with T3 only?

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I am wondering if T3 only might be best option for me. Short time on NDT but I am very hypo on it ( erfa) I know that quite a few people treat their hypo with T 3 only medication and I wonder :

How long did it take you to feel well?

What is your daily dose of T3?

How many years/ months/ weeks have you been taking Synthetic T3?

Did you decide to take T3 only after other medications such as : NDT and Levothyroxine failed?

Did you test your Reverse T3 level before starting T3 medication?

Thank you for your answers.

I am trying to look into other treatment options, I am so tired of being sick and stuck at home..

E xx

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21 Replies
nobodysdriving profile image
nobodysdriving

it took me 4 months to feel 'back to normal' on T3 only, I am now on 160mcg daily.

HOWEVER, I am a very 'easy case' and I know of MANY people who are taking a lot longer than this to feel well as they have all sorts of problems in their way like adrenals etc, my adrenals were very good.

in reply tonobodysdriving

Thank you Nobodysdriving xx you are lucky! My adrenals can't be ok, I didn't test them but I can feel the problem. Other conditions that I have do not make it easier too. However it is good to know that T3 works for many, so T3 can be an option for me in the future too

Best wishes

E xx

Cee123 profile image
Cee123

Hi,

i have been on t3 only for 6 months now and most of my symptoms have gone, something that hasnt happened for around 6yrs plus??!! I am on 112.5mcg a day. I still have very dry skin, hairloss, acne, pins and needles, unable to lose weight and i yawn all day still but i think i have anemia possible vit b12 deficiency.

I had period troubles for years and got really worried last year as i was very ill with them but, 2 months after starting t3 only they became 'normal' and have bbeen ever since...i am totally baffled by this and amazed as they come on roughly the same day each month and last just a few days etc 6 months ago i was in agony and they were really heavy and lasting for around 9 days and then coming back after 2 weeks.

Im in love with my husband again : ) I was close to wanting to splitt up, my moods were all over the place and it felt like pmt nearlly every other day, it really got me down, since i started t3 this has gone!!

I am able to stay awake longer and i feel i can concentrate a little better but, i still feel tierd all day and i am very forgetful.

My blood pressure has come down, my temp has risen and i no longer feel so cold i could dry which i sometimes did!!

Im unsure if i need an increase again or if the dose is right for me and i just need to sort out my possible anemia.

I was on 250mcg of levothyroxine before and it did nothing much to me, it stopped me falling asleep for a few hours during the day but i was still very ill on that dose.

I paid to have my rt3 done which came back that i basically wasnt converting t4 into t3 so it was an easy decision for me to stop levo and go on to t3, with the very helpful advice from nobodydriving : )

The nhs arnt supporting me so i have to source my own medication but i am under the watchful eye of a private doctor.

It took me a year to decide that t3 was what i wanted to try, i was nervous but i am so glad i am on it now.

Goodluck with what you decide xx

nobodysdriving profile image
nobodysdriving in reply toCee123

WOW, what a testament!!

I am so happy for you! :D

yes, you need to 'sort out' your potential B12 deficiency, remember that B12 is like thyroid under many respects, it has MANY symptoms in common and you can still be b12 deficient even with normal to high b12 range in your blood!!

your pins and needles and fatigue and mental struggles etc could be wholly or partly down to this.

good luck you are getting very close :)

in reply toCee123

That's amazing! I am happy for you. 6 months is really fast recovery. I have chronic pelvic pain, I wish NDT to help with this but I don't think that it will. I am glad that your period is regular now . Gyn. problems are a real nightmare xxx

Ps : to go on T3 only is a difficult decision and it is really cool that you were brave enough to make this decision !

Tbob profile image
Tbob in reply toCee123

Hi i know this thread is very old but id love to know how you felt when you first started t3 only? Was it a gradual getting better or did u feel worse before better? I recently started on t3 only and im having more and more hypo systems the more i increase :( im now on 56mcg i was wondering if i have to get over this bad bit increasing untill im at a dose that i feel well on as opposed to feeling unwell at this low dose. Any help or feed back is greatly appreciated

RedApple profile image
RedAppleAdministrator in reply toTbob

Tbob, The member that originally started this thread has since left (that's why their name is 'Hidden').

I'm closing this thread to replies, so please start a new post of your own about this. Thanks.

Tbob profile image
Tbob in reply toCee123

Hi i know this thread is very old but id love to know how you felt when you first started t3 only? Was it a gradual getting better or did u feel worse before better? I recently started on t3 only and im having more and more hypo systems the more i increase :( im now on 56mcg i was wondering if i have to get over this bad bit increasing untill im at a dose that i feel well on as opposed to feeling unwell at this low dose. Any help or feed back is greatly appreciated

shaws profile image
shawsAdministrator

For many, it is is not a smooth road to find a thyroid gland hormone which suits you. It is trial and error. It took me about 40 months. It would make many people happy to have a 'quick fix'. If your body has been depleted for a long time you cannot rush medication and end up with hyperactive symptoms.

in reply toshaws

Thank you Shaws xx It would be easier to recover if I didn't suffer from other conditions. Chronic pain exhausts my body.

Warm wishes

E xx

I think also as shaws says there is very rarely a quick fix to any long standing health problem, whatever its nature and as you say you have medical training, you must realise this.its very hard but it is a case of patience each treatment tried must be given adequate time and a hopeful outlook that given that time,things will improve. It is so very hard but is the usual cold hard truth.i wish you well in this.

in reply to

Hi Cupi. Thank you for your reply. No it's not easy fix. I wish it was. Xxx

babycatcher7572 profile image
babycatcher7572

Hi Edysia

I had untreated hypoT for approx 3 years, started the usual levo regime until at 100mcg i was already getting high blood levels of t4 and at the bottom of the range ft3 levels.( I also had adrenal exhaustion, low vit d and B12 and ferritin levels.....just to complicate things a little more!) So all those things are now being supplemented.

Under Dr P i am now taking a reduced amount of t4 and 38 mcg t3 which i have now spread out into 3 doses. I have never tried NDT.

I was reflecting about how i felt the other day in comparison to a year ago and i feel much better since xmas when i started the t3. I do still have lagging symptoms and my mood swings can be hideous but generally much brighter...i could do with some more energy though! I feel my adrenals are still shot to pieces and i could do with a tad more t3 but i have to go really slowly with upping doses as my system doesnt like it much. Ive been having heart 'issues' this last week but that has been better since going from 2 to 3 doses

It is certainly a confusing minefield!!! Its working out whats causing what symptom and how i am aiming to resolve it and how long it takes to do so....its never a quick fix unfortunately.

Have you considered your adrenal status? even if you cant afford a saliva test some extra vitamins will benefit you. If you have adrenal issues it can interfere with how well you make use of your thyroid hormone (also get checked your iron/ferritin levels too for the same reason).

Im really pleased and relieved to see your posts hun...keep them coming! Stay strong...we are all here to help x x x x xx

in reply tobabycatcher7572

Thank you so much for sharing babycatcher xx I cannot afford any tests at the moment but I am taking lots of vitamins including Bcomplex. That might improve situation a little bit. My other condition does not help my adrenals either. I am not sure how all of this is going to work out.

Warm wishes

Exx

My recovery didn't start too brilliantly as T3 was doing nothing for me and had to stop taking Nutri Adrenal supplements due to side effects. My adrenal glands were shot to pieces according to Dr P so I then gave Isocort a go. That made the difference for me, the T3 started working slowly and am now taking around 87mcg although am not sure whether it's the optimum dose.

I saw your latest blog Edysia and do worry that your diet is inadequate and lacking in nutrition. I've no experience of food intolerances but can't help feeling that you perhaps need to take a different approach.

Your friend Tony sounds brilliant at supporting you, could you write everything down and show it to your GP with Tony there. Basically refuse to leave until GP has done something constructive.

Do keep us updated, we all care and want to help.

in reply to

Cinnamon _ girl thank you so much for your replyxx

My GP is really bad. They won't do basic blood tests not to mention fancy things such as nutrition advice. I am in the middle of complaint but I have not much hope for improvements.

I don't really know what is going to happen with me??? I have terrible problems with lower abdomen pain for a very long time and I am being just fobbed off endlessly. Hospital sends me to GP, and GP says that hospital should sort me out. Finally I got an answer that often pelvic pain is a mystery and I have to live with pain. If I had money I would seek private health care but I don't have money so...God knows ..

Warm wishes

E xx

sarahstevenson profile image
sarahstevenson

Hi Edysia to answer your questions :-

How long did it take you to feel well? I first started T3 only in May 2010 and then felt much better by October. However I began to have severe gallbladder symptoms etc etc so with hindsight - stupidly stopped the T3 and went back to safe nutri adrenal and thyroid whilst I sorted diet for gallbladder (refused surgery).

Restarted again December 2012 and felt a bit better then NHS journey of proof to get to T3 only - by July 2012 at 20mcg (levo stopped) and then 30mcg by September 2012.

What is your daily dose of T3?

Am now on 30mcg NHS prescribed but am tweaking up as I go so just had a few days on 40mcg . temps still variable between 35.9 and 36.9 so improving:)

How many years/ months/ weeks have you been taking Synthetic T3?

T3 only since July 2012

Did you decide to take T3 only after other medications such as : NDT and Levothyroxine failed?

Levo had failed for me first prescribed in Oct 2007 at start dose of 100mcg - I became increasingly hyper and hypo swinging to the extreme and no one listening. Gradually reduced and found I was much better until Dr BDP gave me the courage to reduce to 0 and Vit C hurrah> Endo said i must have ME CFS and GP wanted me on Anti D's which I refused > my mother had travelled that path and I didn't want to do the same flourinated compounds effecting iodine >

I trialled Nutri Thyroid with Dr BDP and that seemed to help to an extent much better than Levo but I always seemed to reach a plateau where I couldn't increase high enough to stop the hyper hypo swinging.

NDT is my missing link with no trial. NHS said it doesn't exist as an option - we know better - and I may try it later.

Did you test your Reverse T3 level before starting T3 medication?

I have never had a reverse T3 test although new endo admitted this could explain my problems with levo.

MISSING LINKS seem to have been

Ferritin not spotted until April 2012 at only 5 could this be why I couldn't convert.

Vit D LOW up to 88 in Aug 2012 summer with supplements.

B12 - currently exploring as well as Vit B complex

Adrenal issues are a significant factor for me ( one kidney due to surgery) Nutri Adrenal and Nutri Adrenal extra seem to address this problem and dare I say it - salty snacks !!!

Symptoms :- Low energy but much improved - aches and pains currrent physio and acupuncture really helpful - dry skin nails hair etc etc . Weight not am issue but I have a very LOW fat diet due to gall bladder .

But now eat buttered toast or eggy bread with my Vit D to help it absorb good excuse eh?

NHS still say I have ME/CFS !

Hope you get some results ;-)

in reply tosarahstevenson

Thank you Sarah xx you are really helpful. Your story gives me more insight into T3 treatment xx

sarahstevenson profile image
sarahstevenson in reply to

pm me if you want to know any more :-) x

in reply tosarahstevenson

Thank you Sarah. I will do xx

bossbird profile image
bossbird

hello just started t3 after trying every other product out there but my endo was reluctant to give me 80mcg per day but it seems thats not such a large dose

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