First dose of levothyroxine : What to expect now... - Thyroid UK

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First dose of levothyroxine

Steni profile image
31 Replies

What to expect now that I have taken my first ever tablet of the levothyroxine !!

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Steni profile image
Steni
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31 Replies
Pastille profile image
Pastille

Hi Steni , depends what dose you are on and how long you have been hypo or had hashis. Hopefully you will start to feel symptoms fading, more energy, mood lifting, metabolism speeding up, less bloating. You could possibly feel a bit worse before you feel better, especially if on a very low dose. You may have some hair loss as your body adjusts to the hormones, you may not, but don't worry this will settle down and eventually stop. It's hard to say as everyone is different, just see if your symptoms improve. Don't forget to take levo on an empty stomach and no food or drink only water for at least an hour after. Take it 4 hours away from any supplements especially Iron and 6 hours away from Calcium supplements. Are you having another blood test in 6 weeks? That is the usual procedure. Then you can see where you're up to. At the next test try to get T3 tested and the usual Ferritin, Folate. B12 and Vit D so you can get these optimal for better absorption. Hope you start to feel better soon. You may need more levothyroxine before you feel any real improvement. Post your results including ranges after your next blood tests

Steni profile image
Steni in reply to Pastille

Thank you so much that really helps.

Joburton profile image
Joburton

Not much initially I'm afraid. Patience is the key, I only started noticing some changes after a couple of weeks. Ensure you have a blood test after 6-8 weeks to ascertain if a dose increase is required.

Amazon07 profile image
Amazon07

You won't feel a thing after your first dose! It takes up to 6 weeks of taking it regularly before it's fully utilised as it is an inactive hormon. For me it took about 5 weeks to feel a bit different.

Redditch profile image
Redditch

Nothing at all

It takes at least 4 days to do anything and it will probably take you months to sort out the right dose to feel fabulous again. BUT you've started the journey.

Safe travels

Steni profile image
Steni in reply to Redditch

Oh dear you sound very weary and disillusioned 😞I hope things work faster than that.

Zoz1 profile image
Zoz1 in reply to Steni

Hi Steni, afraid I can't answer your question but I took my first dose yesterday so in the same boat! My Endo said I could/should start to feel something in a few days and then it would be a few weeks to show any changes in blood work. As above, it depends on dose and your current blood levels. I've not been hypo long (bloods were 100% normal just over a year ago) and my levels are 'borderline' so I'm hoping it's not going to be as difficult to regulate as someone who has had extreme levels for years. I've started on 50 so expecting to go up a bit. Stay positive and 'expect' it to work because there's every chance it will ☺️ Xx

Steni profile image
Steni in reply to Zoz1

I agree that by expecting it to work it may well do. I've been dissapointed by more experienced users comments suggesting that it wi take months to notice any change. Off this site others have said they felt better almost at once? I have been wondering if by its nature a site like this attracts people with the most difficult cases and so their stories are the way they are. I'm keeping open minded but really hoping I respond well to treatment 😕

Zoz1 profile image
Zoz1 in reply to Steni

Absolutely, the people on here are great and I would certainly never criticise as they've helped me immensely but ultimately people who respond well immediately and don't suffer complications tend not to seek help from such forums. There are many on here who have had really bad experiences with levo which is awful but there are also thousands not on here that get on really well with it. All you (we) can do is hope we're in the lucky group that get on well with it. If we're not, at least we have the guys in here to help us out. My endo reckoned 80-85% respond well to levo, that does leave an unfortunate 15-20% that don't but they're reasonable odds 😊

faith63 profile image
faith63 in reply to Steni

if you feel well, immediately, it is all in your head, but that's okay too.

Redditch profile image
Redditch in reply to Steni

Hey I'm four years in. Working a fifty hour week and travelling 50 miles each way to see my 90 year old mother twice a week. I'm actually very well. Knackered, but so would anyone be. It took me about 18 months to go through the 25 of levo to 2 grains of Armour and I am well. I am extremely fortunate that I know I'm brighter than most doctors and certainly have more interest in my well-being than them, so I read all the books and have largely sorted myself out. Lots of people get very good NHS help. I didn't.

I really feel for the newbies, it's a cruel condition, and it takes a long time to work out what you need. We're all different and it changes every few years, I would not have survived without this forum. Some are super cautious and warn of the risks of taking vitamins, some will say buy your own drugs on the internet, but they all want to help.

faith63 profile image
faith63 in reply to Redditch

days?!! it takes about 3 weeks..until, bam, who knows what. I went horribly hyper..trembling, heart racing, on 75mcgs.

mspolly profile image
mspolly

Every body on this site tells' it the way it is some people respond really well to t4,

and thats' great some people respond quicker than others' some respond on a t4/ t3,

combined, others' like myself are taking t3 only others' ndt this site is a god send, lots' of people on this site know more about thyroid issues' then there gps' most of us have, been treated really badly by our gps' and let down by the so called medical, profession

I have learnt a great deal thanks to the people on this site after years' of suffering, i hope t4 works' for you its' when it doesn't that the problems' start, which i and people on this site can testify to you just have to be aware that this is not the kind of illness, where you take a tablet and thats' it you can go for months' years on the same dose,

then bang you start to feel unwell again and your medication needs'' to be looked at

again or increased thats' the problem with thyroid issues' and thats' whats' wrong with the medical profession and there [one tablet for all mentality] no it is not all doom and gloom just be aware its' your illness your life good luck.

Steni profile image
Steni in reply to mspolly

You're right and I'm so glad I know where to find help from people with astonishing levels of understanding. I did realise though that before even meeting my endocrinologist I was gearing up for a fight and hadn't got a clue what I was going to fight about! I'd just picked up the idea that they were all wrong and didn't care or want to listen.

So I'm taking each day as it comes and just hope I will get help sooner rather than later but who knows, what will be will be.👍

greygoose profile image
greygoose

Unfortunately, very few endos are open to Learning from experience. They are like the three monkeys : see no hypo patients, hear no hypo patients, talk no sense!

SlowDragon profile image
SlowDragonAdministrator

You might find this link helpful, about why we have to be patient when starting out and adjusting dose

thyrophoenix.com/adjusting_...

Steni profile image
Steni

Why do you say this? Who are 'they'?

Pastille profile image
Pastille in reply to Steni

Just hear it from a lot of people in UK and on this site that gp's and endos are unsympathetic. A lot of them stick rigidly to the lab ranges and will not prescribe according to symptoms :( You may not have that experience at all. It's why a lot of people end up self medicating to get well. Either that or because their gp's won't prescribe T3 when T4 isn't working for them. Some are lucky and get good/sympathetic treatment. But they are few and far between. Unfortunately they are not very well trained in thyroid disease generally. Some gp's appreciate people taking their health into their own hands and doing the research. Some won't listen to anything other than 'above' or 'below' range. I am lucky in that mine has listened to me so far, but I don't know if I am on my optimal dose yet

Zoz1 profile image
Zoz1 in reply to Pastille

I did have this experience on the NHS which is why I went private and the endo I saw was fantastic, he actually said that he treats symptoms not numbers! My TSH is around 4 which the NHS won't treat whereas the endo said I absolutely should be medicated and that he would want it at 0.5-1 - finally!!! Frustrating I had to pay for it but I felt more comfortable with this than self-medicating. I even asked about T3 and he said he is very open to T3 therapy if a patient doesn't get on with T4 but did say something interesting which I've not seen on here before..... Apparently women who plan to get pregnant in the next few years (me) shouldn't take T3 as it can't cross the placenta. The baby needs T4 and is left short if the mother is taking T3 - definitely glad I heard that and wonder if that is the case with NDT? Anyone know? (I'm not considering either as options until I've given levo a fair trial)

faith63 profile image
faith63

if the dose is too low, then you get more hypothyroid. I wish i knew back then, what i know now..that Hashimotos was temporary and can be gotten rid of . Now i am dependant on thyroid meds, that do not work like your own body did, at all.

Steni profile image
Steni in reply to faith63

I kind of feel the same way. I haven't taken more than 2 weeks worth at 25mg before stopping and becoming gluten free I feel fine apart from my torn up skin on my feet.

faith63 profile image
faith63 in reply to Steni

really..you have hashi's and went off thyroid meds?

My symptoms were very severe..i gained 11 lbs in 1 week, a total of 30 in 3 months..without barely being able to eat. I had pain, severe acne and lost ,y eyebrows, lashes and i had huge eye bags and my upper lids swelled and sagged..i was very ill. I had severe constipation lasting a year too, oh and a pregnant looking belly, full of fluid. Now i don't know if my hypothalamus pituitary or thyroid work, as damage was seen on an mri.

faith63 profile image
faith63

That's great, if you convert. How open is he to that. Levo made me very ill.

Steni profile image
Steni in reply to faith63

In what way did it make you I'll. I've I lay had 2 doses and I really don't feel ok?

faith63 profile image
faith63 in reply to Steni

on week 3, i had hyperthyroid symptoms..racing heart,breathless, trembling at 75 mcgs. My dose was lowered and my heart went slow and i gained more weight and was so weak, i could not walk the steps anymore. I switched to ndt and got hot and sweaty, high blood pressure and sores on my skin.

faith63 profile image
faith63 in reply to Steni

2 doses would not do much of anything. What dose is it?

Steni profile image
Steni in reply to faith63

25mg??

faith63 profile image
faith63 in reply to Steni

very low dose. If you stay on this, you will become more hypo or stay the same as now. If it makes you sick, i personally would stop. How long do you stay on this dose? i wish i had not started meds at all.

Steni profile image
Steni in reply to faith63

In what way ill? I have straight away felt bizarrely tired and dizzy

faith63 profile image
faith63 in reply to Steni

on week 3, i had hyperthyroid symptoms..racing heart,breathless, trembling at 75 mcgs. My dose was lowered and my heart went slow and i gained more weight and was so weak, i could not walk the steps anymore. I switched to ndt and got hot and sweaty, high blood pressure and sores on my skin.

i would find out why you are hypo and fix that, not take meds, if i could start over again. Do you have hashimoto's? It is the most common reason, which is autoimmune. The problem is the immune system has gotten bad and is attacking the thyroid like it is a germ.. in this case, you need to work on the immune system.

Steni profile image
Steni

My symptoms were/are nowhere near as bad as yours sound. I have gained weight ( about a stone) I have serious constipation, and torn and bleeding feet ( no one seems to know why) Vit d deficient but b12 deficient and I can get very very tired. I have started back on 25mg each night of levothyroxine.

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