Positive feedback about Levothyroxine - Thyroid UK

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Positive feedback about Levothyroxine

Mantha301 profile image
77 Replies

I have been diagnosed with under-active thyroid and my GP has suggested I take Levothyroxine. I have been taking a natural thyroid support supplement for the last 6 weeks, recommended by my Apothecary, but my symptoms have worsened considerably.

I have read so much negativity about Levothyroxine on this site but please, if anyone can tell me about their success with the drug, I'd be relieved to hear, as I am now frightened to go on it.

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Mantha301
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77 Replies
Ruthi profile image
Ruthi

There is absolutely no need to be frightened. Levo works very well for the majority of people. And it has the great advantage that it is understood by the medical profession. What you have to remember is that the people who hang around this board do so because they either struggle to get a diagnosis, or the are in the unlucky minority who Levo doesn't help.

Take your Levo every morning on waking with just water, and wait an hour before eating or drinking. And when you have blood tests book the test as early as possible, and don't take your medicine until after the test. You will be fine, and hopefully we will never see you here again!

jimh111 profile image
jimh111 in reply to Ruthi

Or, only see you occasionally to say the levothyroxine is working so that others in your situation can see your post.

Mantha301 profile image
Mantha301 in reply to Ruthi

Thank you Ruthi. My sister takes Levo and she struggles with weight gain every time the doctor adjusts her dose - I've put on so much weight myself since my thyroid has been playing up that I cannot put on any more. I'm assuming that as my sister has problems that I will too?

shaws profile image
shawsAdministrator

Literally thousands (millions worldwide) take levothyroxine and as they're doing o.k. they certainly wont be searching the internet.

So don't be wary of at least giving it a trial. As long as your GP increases your dose about every six weeks till you have relief of all of your symptoms and doesn't keep you 'somewhere' within the range which many do just because they know and understand much about how the hormones function in our bodies.

There are millions of prescripts each year in the UK for levo.

The TSH which suits most of us is around 1 or lower. Also Vitamins and minerals should be optimum too, i.e. B12, Vit D, iron, ferritin and folate.

Blood tests for thyroid hormones should be at the earliest possible and fast (you can drink water). Also allow approx 24 hours between last dose of levo and the test and take it afterwards. This allows TSH to be at its highest (it drops throughout the day). Always get a print out of the results and you can post if you have a query.

Mantha301 profile image
Mantha301 in reply to shaws

Thank you Shaws. I've had my vit levels tested and they're within 'normal ranges' Is there an optimum level they should be at?

shaws profile image
shawsAdministrator in reply to Mantha301

Vitamin levels should be towards the upper part of the results.

shond2015 profile image
shond2015

Hi there

Levothyroxine is fine. Listen to your doctor and listen to your own body. The writer who points out the advantages that Levo is a drug understood is correct. If it doesn't help you, your body will soon tell you.

I was diagnosed last September with Myxoedema and have been using Levothyroxine since then. First dosage was 75g then 2 months ago, it was doubled to 150g. within a couple of weeks I began to feel terrific and thought the dosage has optimizedfor me. Unfortunately, 3 weeks ago I became unwell again (bloated sensations - difficult to sit upright without discomfort; weight gain - half a stone - etc - extreme fatigue (like I've swallowed two sleeping pills and trying to fight the effect!). I am now on 175g (since Tuesday) and am hoping the extra dosage will sort things out again. Levothyroxine has been a good help so far. Shon

Astridnova profile image
Astridnova in reply to shond2015

It could be that you were at your optimum dose at 150g. Taking more does not always help. Consider going back to the dose you were on when you felt good.

shond2015 profile image
shond2015 in reply to Astridnova

Hi there and thanks for reply. I may not have made myself very well understood - Reverting back to 150g daily, would not help me at all. I've had to increase my dosage to 175g due to a slow return ofunwellness whilst on 150g.

I have only been on the higher dosage for 4 days so I am hoping this will sort things out. My GP has advised me that my thyroid will one day 'pack up altogether' and then the dosage will be much better stabilized.

greygoose profile image
greygoose in reply to shond2015

Shond, your doctor should not have doubled your dose like that, it was to much of an increase in one go, and has shocked your body, and that's why you don't feel well. Increases should only be 25 mcg every six weeks, no more. We're not talking about aspirin here - levo is not a drug, it's a hormone - and with hormones, you have to take things slowly. I would suggest you went down to 100, let alone 150. 175 is too much for you at this stage. It will not 'sort things out' done in that way.

shond2015 profile image
shond2015 in reply to greygoose

Hello again

I was on 75 mcg (I typed 'g' as a shortcut) and, following severe feelings of unwellness, had a blood test done. My levels had nose dived to the point that the GP suggested that I go to 150mcg. Doubling my dosage was thanks to my GP who recognised that my thyroid needed help. On this dosage I simply got better and better over the weeks- I had great sense of well being at one point. (I also lost a stone and a half in weight) - Alas... a couple of weeks ago - I began slowing down. A further blood test revealed a little further dive and GP suggested, but did not stipulate, that I increased dosge. I took up his offer. He has told me that eventually my thyroid will give up altogether. In short, the doubling of my dosage was the power pack that my body needed and the only reason I feel awful again now is because thyroid working even less now. If I take too much Levothyroxine for my body I could move into the hyperthrodidits - which is certainly not happening. I think and indeed hope, the 175 mcg will help stabilise my hormone situation, until the next 'dip'.

I haven't ever asked for my blood test results as I don't understand the T3 and T4 things - I have honestly tried but I get very confused with numbers and high/lows etc. I have followed the threads when blood results are discussed - which I find fascinating and very very helpful - but I get lost with all the numbers. Even if I asked for my results and then posted them on here, someone I am sure, would helpfully explain it to me but not in the simple way that I need! I have wanted to fully understand it all but as soon as more than 3 or 4 numbers enter the equation, my brain closes down. Thanks for replying, greygoose.

greygoose profile image
greygoose in reply to shond2015

Shond, yes, you said all that, and I understand. But the fact still remains that increasing by more than 25 mcg at a time is counter-productive because it stresses your body - as you have now found out, I believe!

And doing it like that without even seeing or understanding your results, sound a bit like jumping off a cliff, blindfold, to me.

If you get copies of your results, and post them on here, I will try and explain them in a way you can understand. And if you don't understand, I will explain it again in another way. And, I won't give up until you have understood! Promise!!! :)

Mantha301 profile image
Mantha301 in reply to Astridnova

How do you know if you need to up the dose - are you guided by symptoms or blood tests?

LindaC profile image
LindaC in reply to shond2015

Hi shond2015 - I am most intrigued that you were diagnosed with myxoedema - not seeking to be too intrusive, can you please list your signs/symptoms and was a standard thyroid blood test used to diagnose? You must have been in some state to get that diagnosis :-( Levo didn't work for me but others [Armour, then T3 alone] have, then it unravels.

Reason I ask is that I have had several classic signs/symptoms [sometimes still do] yet my initial test results [highest TSH I ever had was 3.8 and that had me on my knees] prior to taken any thyroid hormones were said to be 'normal'.

Thanks and I do hope the extra dosage helps... dreadful when you get to feel great and then it unravels again. :-)

shond2015 profile image
shond2015 in reply to LindaC

LindaC

My signs and symptoms were initially as follows:

Fairly swift weight gain (was always size 10 and 9 stone) e.g. I bought a wedding outfit, size 10, in April (for step daughter's wedding in June 2015). Tried dress on again in May - couldn't get into it. Got a refund and a new dress, size 12. By time wedding date arrived, June 6th - couldn't fit into the size 12 and had to wear another dress - much looser fitting. I wasn't eating lots, so became aware I had some sort of a problem. I thought I'd put it down initially to the M & S Egg Custard Tarts I simply love !! but quite honestly, don't get into town often enough to lay the blame on weight gain there!

The other symptoms (listed below) were ignored by me as I put it down to just getting older.

Complete lack of energy - on a scale of 1 - 10 (10 being fantastic energy) I went to minus10

Extreme bloatedness: (and was tested for cervical cancer at my request). It felt like I'd eaten so much my stomach was so full - then when I couldn't eat any more, I allowed someone to put a hosepipe down my throat and fill me up with 10 gallons of water). I couldn't sit/stand etc

Perspiring heavily when exerting any energy (even getting up to go to the loo)

Tiredness and complete lethargy (difficult to get up out of bed)

Nails becoming very brittle

Skin becoming very dry

Body hair stopped growing - (again, I put this down to age thing! I haven't had to shave under my arms since last April - 2015). Hair on legs doesn't grow.

Very tearful and emotional -

Thats about it -

I am a very active, hard working person normally. Rearing beef cattle on a farm. (Although I once held a very glamorous job, where looks and physique were once regarded as very important),. My hands show the hard work I carry out - my 5 sisters all have beautiful hands and mine are now like a rough peasant's!

My doctor immediately took blood tests and then diagnosed myxoedema - which I think is exactly the same as hypothyroiditis. I still have his diagnosis on the wall in the kitchen as when I saw the word myxoedema - wanted to know what it really meant. When I looked it up, it meant hypothyroid.

LindaC profile image
LindaC in reply to shond2015

Thank you so much shond2015 - yes the weight gain is quite a shock! Aside from perspiring [mine was cold], I've had all of those plus+, except satisfying their blood tests. Guess your bloodwork must have been enough. Two docs diagnosed me on clinical signs/symptoms and I've been using hormones since 2010 but still never quite fixed.

Myxoedema generally has a look [bloated, kind of square faced - better than being two-faced, eh? ;-) ] which was documented over a century ago. I had that also, having previously had an oval face [I've pics of my square face, as if it was 100 years ago] - face almost back to normal now and weight finally went down a reasonable amount. Strange old stuff these hormones :-) How you get it sorted out soon. xx

shond2015 profile image
shond2015 in reply to LindaC

yes, I forgot the intense coldness - I have been lying on the sofa with the fire lit - 3 blankets over me and body like ice - that was in May this year during that hot spell!

LindaC profile image
LindaC in reply to shond2015

Noo, not you too! Also sorry, undiagnosed for so long and lack of coordination has left me unable to precis.

I've been cold for years now [way back when I first experienced unrelenting fatigue - late 1970's, end Sept 1979 to be exact... remember like it was yesterday!]; in fact way back then I used to jokingly say to people, "I need to hibernate in winter". But since Jan 2015 I began to become 'punch drunk' with the cold, stumbling, uncoordinated++. Insisted again to see an endo - end June 2015 - they just won't listen. I warmed up [bad summer last year] and was fine again as if nothing wrong and I last until January.

This year I took Phosphatidylserine from Dec 2015 to try to circumvent the 'punch drunk' uncoordination and it worked a treat; still freezing cold and the odd not so good day but much improved. Went off in May to see family abroad, nice and warm - totally fine - came back here to dreadful cold weather [we're up North!] and was hit all over again just like Jan 2015, even though taking the maintenance dose of phosphatid... I've had only a handful of good days since end May... soon as it warms up, I'm fine. It's not that the house is cold, it seems 'seasonal' [like SAD x100]. Even when room is 26 C, I can be freezing [legs with cores of ice through them]... no medic wants to know.

I'm thinking of getting something to wrap around my legs, like a hypothermia blanket (I'm often 34.4 C) and make trousers with heat pads ;-) eek, it's not funny but if I didn't laugh I'd cry. Take care and be well xx

PS. I'm not that 'older' and don't have memory problems.

Mantha301 profile image
Mantha301 in reply to shond2015

Thank you Shon. You have highlighted what I'm concerned about - the weight gain and having to keep upping the dose. I understand that my own thyroid will decrease making thyroxine as a result of me taking Levo and so I will constantly need to up the dose until I'm just having synthetic hormone and not making any of my own any more - is this what you've heard?

Astridnova profile image
Astridnova

Oh, sorry for misunderstanding. Sounds like you need NDT or T4. Is your doctor willing to do the full range of tests?

Treepie profile image
Treepie in reply to Astridnova

You have a typo,i assume you meant T3.

in reply to Astridnova

Astridnova I hope its OK to clarify that T4 is of course Levothyroxine which I'm sure you already know. Its just that the way you mentioned it above makes it sound as though T4 is an alternative / different medication which Mantha301 (the original person who commented) may not be aware of.

Shond2015 - I think you will probably find that your Levothyroxine dosage is in 'mcg' which is 'micrograms' rather than 'mg' which is 'milligrams'. I'm sorry if that sounds picky of me to point it out but there is a huge difference between the two :-)

Astridnova profile image
Astridnova in reply to

Yes, T3. Sorry everyone, for the confusion and misinformation. Just carry on without me. :-/

in reply to Astridnova

ha ha :-) I think its pretty cool that we worked out what you meant without a doctor present :-)

NatChap profile image
NatChap in reply to Astridnova

Do you mean T3?

Ah treepie, I think you're right, your comment went up at exactly the same time as mine. :-)

TiredMummy profile image
TiredMummy

Levothyroxine is the ONLY thyroid medication I can take & it keeps me stable the most. I am having slight nausea & loose bowel every morning (I take my Levo at night) but I think that might be because I need to switch to a lactose free version as I am intolerant- so it's my own fault!

I've tried EVERY other combination, every type of NDT going, T3 only, T4 & T3 & they made me feel terrible! A lot of people get on fine with Levo & I agree with the previous commenter that they won't be on these forums! NDT does suit some people it's true but be VERY careful reading into any apparent reactions to Levo........some people have other undiagnosed issues which is nothing to do with Levo & the worst thing they can do is stop taking it. I can say this because it happened to me. You might well be absolutely fine on Levo x

Elven profile image
Elven in reply to TiredMummy

Well said! I've been on levo for five weeks now and I feel so much better. Everything about me is slowly coming back to life. I'm on 100mcg but my GP suggests an eventual dose of 200mcg. I hope to increase by a further 25mcg per day very soon. I was miserable before. Very overweight, in constant physical pain, depressed, sleepless at night yet always napping, thoroughly exhausted all day long and unable to fully awaken, aching back, legs, arms, feet etc. Swollen painful gums, awful digestive problems, constipation. Weary to the bone and despairing of ever finding a way to return to health. Then I was diagnosed hypothyroid. Since being prescribed levothyroxine I've lost a lot of weight. I improve more with each passing day.

Don't be afraid of levo. Embrace it! To me it's a miracle hormone x

Jazzw profile image
Jazzw in reply to Elven

Hello Elven :) I quite agree.

Elven profile image
Elven in reply to Jazzw

Hello to you, too, dear friend! LOL. xx

Mantha301 profile image
Mantha301 in reply to Elven

Wow! I'm so pleased for you and this is just what I needed to hear!

Elven profile image
Elven in reply to Mantha301

YAY! I'll be staying here no matter what happens. If I continue to do well on levo I'll gratefully post as much. Should I hit problems I'll post about those and ask advice. There's a real need for people doing well to post about it because otherwise this wonderful forum can seem not only scary but also off-putting, and those who set it up would be sad indeed should either or both predominate xx

lucylocks profile image
lucylocks in reply to TiredMummy

Hi TiredMummy,

Hope you don't mind me asking but did you changed back to levo. from NDT. as I have been taking NDT for several months now and do not found it any better than levo.

I changed over from levo. to NDT. because my G.P. kept reducing my dose because of my low TSH so I decided to self treat with NDT.

My G.P. has since spoken to an endo. who has assured her I can now increase my dose of levo. and she will work with me to get my dose right, but I do not know how to convert back to levo. and as yet I have not told my G.P. I am on NDT.

At present I am taking 1 1/2 grains of WP Thyroid and when I increase I have to then decrease again because of side effects, I then stay on the reduced dose for a few weeks, then try an increase again.

Before G.P. reduced dose of levo. I was taking 125mcg.

Any advice would be gratefully received

Mantha301 profile image
Mantha301 in reply to TiredMummy

Thank you TiredMummy. I am in the UK and don't have access to NDT which is why Levo is my only option. I had tried to get my thyroid levels up using 'natural' thyroid support remedies but my symptoms have continued, and in some cases, worsened. My sister has Hashimoto's nd is struggling with her Levo and weight gain and I've been tested for it but haven't had the results yet - although blood tests have revealed a high TSH with 'within range' FT4. My antibody results are back but. because I'm visiting the USA atm, the doctor's receptionist has refused to email them to me or give me them over the phone - so frustrating!

bobby1974 profile image
bobby1974

I am on Levothyroxine, after being diagnosed with a TSH of 127. I felt awful 4 months ago when i started, but I now feel like a different person. My TSH has dropped to 25 and I am on 125mcg. I have had no ill effects whatsoever. My only gripe is having to hold off in the morning before I have a cup of coffee!

Mantha301 profile image
Mantha301 in reply to bobby1974

That's great news Bobby and I can relate to the issue with having to delay the morning cup of coffee.

Some people have said it's best to take it at night - have you thought of that?

Steve_T33 profile image
Steve_T33

I am on Levo, I was diagnosed in March when I felt at my lowest in my life, my result (excuse me for not being technical) was 100 which apparently is the highest it could be read, the other reading was 0, so as my Dr told me I was heading for a coma, I had to take Levothyroxine in 25mg steps for weeks, at first I felt worse but now I can feel the benefit and my result has dropped to 29, ok no where near what it should be and I have another increase to make (150 at the moment, Dr thinks it will end up at 225) but I am making slow progress, don't be scared about it you have no need to be, you will be amazed at the difference it will make.

Mantha301 profile image
Mantha301 in reply to Steve_T33

Thank you for sharing that Steve. I'm pleased to hear that Levo is making a difference for you and look forward to hearing how you improve even further as time goes on.

Ellie-Louise profile image
Ellie-Louise

Now two people have said (and assumed) that it's only those with problems who come to this forum, I've just been made to feel as if I shouldn't be here!

I'm perfectly fine on Levo, and come here because I like to read the posts and also there's a lot to learn from others about this condition.

bantam12 profile image
bantam12 in reply to Ellie-Louise

No Ellie-Louise there are others on here doing well on Levo, I'm one of them 😊.

I agree there is a feeling we shouldn't be here but just because we are well and not having problems doesn't mean we can't be interested and offer positive encouragement to others. Please don't feel unwelcome, the forum needs people who are well and getting on with life so new members can see it's not all bad.

helvella profile image
helvellaAdministratorThyroid UK in reply to bantam12

Everyone who has any thyroid issue is welcome here.

Currently, I too seem to be doing OK on levothyroxine only. That is no pre-judgement of the future - who knows what that might hold?

It is vitally necessary for those who get well on levothyroxine only to get involved and say so. Aside from anything else, this can serve to highlight that there are two populations - those who do OK and those who do not. This is the sort of information that can, when presented appropriately, help to persuade medics. A blanket "everyone needs some sort of T3 intake" attitude really doesn't help if the medic is aware of people who are doing well on levothyroxine alone.

We all need to recognise and understand that we are all individuals with a surprisingly varied pattern of responses.

Ellie-Louise profile image
Ellie-Louise in reply to bantam12

Thank you Bantam.

Jazzw profile image
Jazzw in reply to Ellie-Louise

Oh no, don't feel that way! {hug} Some people get very, erm, passionate, about finding a solution that isn't levo, which is understandable particularly if they've suffered for years at the hands of a doctor who didn't realise that TSH monitoring is rather flawed.

I love hearing about people doing well on levo, so please keep posting. I do get concerned that new people coming here quickly start believing that levo won't work before they've even tried it, so it's great that you're here and proving that it does.

Ellie-Louise profile image
Ellie-Louise in reply to Jazzw

Thank you Jazz, I'm thinking I might have overreacted (are there 2 rr's?) this morning.

I'm worrying about something else...unrelated to my health btw...and it's been building all day ending up with a cry. I don't normally feel depressed but this is getting me down so much.

I'll pull out of it soon hopefully, probably need a stiff drink, well stiffer than cider anyhow.

bantam12 profile image
bantam12

Unfortunately helvella some forum members do not appreciate positive comments, I have been on the receiving end of the backlash so I limit my comments these days 😋

in reply to bantam12

awww that saddens me bantam12.. i love to hear people doing well... i hope to be one of you one day!... i am poorly on levo, but i have friends that do well on it.. i want further testing.. that i dont or shouldnt have to pay for... i pay my taxes.. i am a decent person and want equality... i like to read of peoples success, and i get great strength from reading how people have took control of their own lives ,and done a far better job than some of the medical proffesionals...xx

Mantha301 profile image
Mantha301 in reply to bantam12

Hi bantam12, I am really grateful for positive comments, so please keep them coming. It's so important to have success stories as it gives the rest of us hope. I can understand that when others are having a challenging time, that to hear of someone else doing really well may be upsetting, but to have hope is essential if we are going to strive to improve.

I implore people to post their happy stories and ask those who are feeling negative and hostile to be comforted by them. We are all here to help each other.

5858 profile image
5858

I an on synthroid It took a while to feel well with adjustments to meds. In my case over a year. I seem fine except not sure my muscles are 100 percent maybe a vitamin problem. I look at this site everyday to see how everyone is doing. I also get some good tips on here. And also hope occasionally I can give someone else support........... as in the beginning of all this I was a real mess. I went undiagnosed for a long time and I do believe that caused many other problems. All the best to you give it a try! xo Susita

in reply to 5858

hi 5858 i was the same... was poorly for a long time, and just didnt bother goin docs... its so much harder playing catch up now isnt it? i am banging on every door and slowly slowly gettin somewhere... take care ...xx

5858 profile image
5858 in reply to

You got that right. I just avoided the doctors I guess .......I am hoping to take better care of myself. My kids are leaving the nest. I am 60 maybe about time LOL! All the best to you thanks for a reply xoxo Susita

in reply to 5858

when i get all i need from my doc i shall be disappearing too.. its just finding our feet isnt it? take care .xx

Elven profile image
Elven in reply to

I won't be disappearing because I am so grateful for my diagnosis and so-far amazing treatment that I hope to encourage other new and not-so-new members. If very few stay to tell of their success, the perceived 'uselessness' of levothyroxine will prevail and a lot of invaluable support and comfort will be lost xx

in reply to Elven

Elven disappearing from my doc not here!!! also, some of us that talk about the useless levo makes others feel they are not imagining it or going madx

Elven profile image
Elven in reply to

HA HA. Glad to hear it LOL. Yes, the positive stories are very important. Of course it's awful for those who don't do well on levo and who have to eventually go private as all viable alternatives are unavailable on prescription here. They go on and on suffering and we all know how dreadful that can be xx

in reply to Elven

Elven its just nice to hear all sides i guess,,, i get great comfort from hearing success stories, keeps me going.. one day i hope to say i succeeded in feeling well...we all deserve it , with out our health, life is hard. xx

Elven profile image
Elven in reply to

When I first joined this forum five weeks ago I was shaken by many of the heart-rending posts. And by the near-universal denounciation of levo. As a total newbie to all matters thyroid I was, frankly, rather alarmed. Having suffered aches, pains and weight problems for decades (and extreme weight gain earlier this year) my poor old thyroid had finally packed-up once and for all - I immediately began to fear that I'd never get well, far less improve, on levothyroxine. My blood test results prompted my new GP to advise immediate treatment with 100mcg levo. I understand that this is fairly high for a starter dose but I was in a bad way. After one week I knew something good was happening. And it's gone on from there. I know it's very early days, I know that I'm only on a half-dose (according to my GP), I know that there may be countless ups and downs before I settle on the right dosage, and that this could change many times over the years. But I now have hope, and I feel the life literally seeping back into me. I'm 62 now and neither look nor feel my age but my goodness I felt 102 a lot of the time prior to my diagnosis! x

Mantha301 profile image
Mantha301 in reply to

I'm glad you've gone to the docs now and I hope you keep on progressing well.

Elven profile image
Elven

I get lots of invaluable tips here, too. I've always supplemented D3, B12, iron etc due to being a lifelong vegetarian but thanks to advice posted here I've now seriously upped my dosage of B12.

None of us knows what the longer-term future holds so we need to read as much as we can about every aspect of thyroid disease and all possible remedies!

mountaingoat83 profile image
mountaingoat83

Hi Mantha, I have just gone back to levo only after trying both t3 only and a combination, neither of which were right for me. Something that I didn't realise about thyroid drugs is how sensitive your body can be to them - so 50mcg was too low for me but 75mcg was too high, I felt rubbish on both so thought levo wasn't right for me. However I'm now trying 75 X 5 days a week and 50 X 2 days, and hoping that will be right for me. Unfortunately with this disease we have to be patient patients, it might take a while to find what works for you but hopefully it will be levo. Try not to worry too much about it all, wishing you the best x

Mantha301 profile image
Mantha301 in reply to mountaingoat83

Thank you Mountaingoat, it's good not to feel so alone - I really appreciate your support.

sweetsusie profile image
sweetsusie

Mantha301: I've just recently been diagnosed with hypothyroid and am taking 50mcg of levo. each morning. I go for a retest in August to see if I need more, which I'm kind of assuming I will...anyway, I'm doing well on the levo., but I'm switching to Armour after my doctor gets my test results back from the lab. I really don't need to change, because the levo. is working for me, but I've heard really good things about Armour. So...no worries with your taking of levo., I believe.

bantam12 profile image
bantam12 in reply to sweetsusie

Sweetsusie if Levo is working then why change it, armour doesn't suit everybody so it would be a shame to mess yourself up just because you have read about armour being the best. Some find it difficult and a long job to get back on Levo after trying the alternatives and not doing well. If you have only just started on Levo give it a chance before jumping ship, the other reason to stick with it is because it's free and there are no supply issues, not always so with the alternatives.

sweetsusie profile image
sweetsusie in reply to bantam12

I've been on levo. since May 14th...starting dose 25mcg..now upped to 50mcg on June 28th. I'm not sure I feel any better...maybe it's too soon, but I would think after 10 weeks on levo. I'd be feeling a bit better? I'm very new at this, though. I'll think about staying on the levo., due to your suggestion, but I just don't feel it's doing the "trick."

sweetsusie profile image
sweetsusie in reply to bantam12

Oh..also..I said before I was doing "well" on the levo., which I really should've said I feel hardly anything on it.

Jazzw profile image
Jazzw in reply to sweetsusie

It is too soon to feel better. You're still only on a starter dose really. I wouldn't switch to Armour (and definitely not Armour - it's so expensive compared to other NDTs) until you've tried 100-150mcg of levo (in due course). And some need more than that. I know it's hard when you've felt poorly for a while - but keep the faith for now.

sweetsusie profile image
sweetsusie in reply to Jazzw

Jazzw & Bantam12: Well..now you're changing my mind about trying the Armour. Guess I'll back off and stay on the levo. I guess I didn't want to believe that it would take months to feel better...I was in total denial, so thanks for the "bonk" on the head!

bantam12 profile image
bantam12 in reply to sweetsusie

It can take many many months to find and stabilise on the right dose, 12-18 months isn't unusual, so you are very early on in treatment and still on a low dose, taking it slowly with gradual increases is the way to go, no quick fixes in this game.

sweetsusie profile image
sweetsusie in reply to bantam12

Jazzw & Bantam12: Well..now you're changing my mind about trying the Armour. Guess I'll back off and stay on the levo. I guess I didn't want to believe that it would take months to feel better...I was in total denial, so thanks for the "bonk" on the head!

LAHs profile image
LAHs in reply to bantam12

I feel I should mention that I am very very well on Armour, BUT for the first 5 years after my total thyroidectomy I did excellently on Levo. What happened was that the brand of Levo I was on (Forrest Pharma) was discontinued so I had to go onto another brand. In addition to that my wonderful GP retired and I was passed over to a very stupid Endo. The S.E. wanted to revise my dose of Levo (it was 150 mcgs) because my TSH was low. For the next two and a half years I had three variables to deal with, a decent brand of Levo, the correct dose and stupid, illogical mis-information coming from the Endo, and feeling sicker and sicker with every month. After I felt like I was about to slip into a coma or die, I took matters into my own hands and demanded NDT and a sensible Endo. I got NDT fairly quickly but had to change Endos yet again, for the fourth time for a good one.

Mantha301 profile image
Mantha301 in reply to sweetsusie

Is Armour a brand of Levo?

Thank you for your support.

Rapunzel profile image
Rapunzel

Mantha301 I understand. I really hope that you're one of the lucky ones who don't need support here very long. So, if you take your levo on an empty stomach and your bloods are drawn early in the morning 24hrs after your last dose, preferably fasting, and your Vit D B12, iron, ferritin and folate are all near the top end of the range, you hopefully will start to feel better fairly soon.

I'm sad to hear that some precious harpies have made bantam12 feel unwelcome. FFSakes, life is hard enough with this complaint without that nastiness - whoever it was, get over yourself and hold out a hand to your fellow thyroid disease sufferers in friendship not to slap them !

Mantha301, lots of people, I think somewhere between 80% to 85% of hypos, flourish on levo. For those who remain ill, sometimes getting progressively worse after years of mismanagement, sometimes ending up suicidal, unable to work, with extreme fatigue or occasionally all three and more... maaan we get a bum deal. You can read our sad stories on here, but for now, feel bright, feel the corner has turned for you, eat well, exercise, get your vitamin and minerals tested, steady your mojo and hold fast. The stats are with you - and so are we, for as long as you need us xx

Mantha301 profile image
Mantha301 in reply to Rapunzel

Rapunzel, thank you so much for that reply. It means a lot to me to know that I have support. I have felt very alone. I will go back to my doctor and discuss Levo.

Costalita profile image
Costalita

Levo works for many people, the reason you won't read about any success stories online generally is because they are just busy getting on with their lives and have absolutely no idea that anyone else struggles with it!

So the only information you will see is the problems people have - so give it a good try and hopefully you will be one of the very many lucky ones that will be able to get on with your life!!

Costalita profile image
Costalita in reply to Costalita

Just read some of the comments - everyone should feel welcome here whatever their situation - I meant to say "many success stories" rather than "any" as this would imply that people who are doing well wouldn't be on the forums!

Don't want to be offending anyone in my first week here!!!! ;)

lucylocks profile image
lucylocks

I was taking levo. and was starting to feel better but my G.P. reduced my dose because she panicked about my low TSH. When the dose was reduced I felt awful so decided to self treat with NDT as I had read such good reports about it. I must say I have not found I feel any improvement with NDT. over levo.

My G.P. has now spoken to an endo. and says I can increase my dose again, and she says she will work with me to get my dose right. (the only thing is that I have not told her I am now taking NDT)

So I think when a lot of people say levo. does not work I believe it is because they are not on the correct dose, and of course other things in the body need to be right for it to work properly, such as the right level of ferritin. folate, Vitaimin B12 Vitamin D and Iron.

Good luck.

carnation profile image
carnation

Hi Mantha301

I have been on levo for 22 years! Have also had to supplement with vits D and B12. Otherwise I have been fine.

The last couple of years have been a bit rocky - be warned stress really messes up your system. Cannot blame the levo for that. Give it a go, it may work well for you.

Good luck.

Mantha301 profile image
Mantha301 in reply to carnation

Thank you carnation. I'm about to start a 3 year midwifery degree so I'm going to experience a lot of stress. I'm concerned is going to be to much for me to cope with if I can't sort my thyroid out before I start in February. I've been working towards this career for years and I'm now 50, so there won't be another chance.

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