Thyroid UK
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Please does anyone know someone who was diagnosed hypothyroid .took levothyroxine and is back to their normal self

Hi I ask because i know who someone who was very lucky in this way . I am very pleased for them of course. But I always thought because of this that those of us who did not have this luck and had to do a lot of trial and error / change to liothyronine or natural thyroid supplements etc to feel better .

(And still we don't feel like we did pre diagnosis ) are the minority . But now I am thinking maybe she is the minority of 1.

Basically if u know anyone who feels back to their norm on levothyroxine only as text book doctors believe we should . Please just answer yes I know someone .

I wish u well . All of you .And if you are one of these people I am genuinely happy for you . I promise u . Xx

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I and my 2 sisters are well on Levo and have been for many years, my younger sister for 40+ years !

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Thank you for your reply . It's lively to hear it has worked for you and has helped immensely with answering my question also .

I was wondering if people are all just suffering in silence etc .

So thank you .

Much appreciated

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Yes, I do know someone.

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Thank you x

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I hope the millions of people in the UK who take levo are well with no symptoms. I met someone when I was newly diagnosed and feeling awful and she told me 'oh you'll be fine on levothyroxine'. She looked very well indeed but I didn't recover for a long time and had to try several different options of thyroid hormones before settling on T3 only.

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I've got 2 friends who said that to me - but later I found out they both struggle a lot! One actually apologised for saying it once I got to know him better.

I think this makes it very hard to tell how people are doing - there's such pressure on people to say they're fine.

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Thank you for your reply Shaws . Do u find it hard that we are not believed by some people because they expect us to be well too on just Levo. I say it's because Levo didn't get my t3 into range. Is this the correct way to explain it . I am no good with words .

Thank you

Shaws.

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If the 'people' you quote are medical, then 'yes' they do not believe us as they've been brainwashed by Big Pharma that levo is perfect. It may be for some but they'll not be on the internet searching for answers as they are well and getting on with life. They think we are imagining our ill-health - after all our results are 'perfect' or 'fine' or normal. We don't feel perfect, fine and anything but normal and we do wonder if we'll ever get better especially if they don't allow us 'options' on a trial basis.

Some of us cannot tolerate levothyroxine.

Some people have bad effects when they take paracetamol or codeine tablets, so it stands to reason that we should be offered something other than levo if we're not getting any better.

Till my dying day I will not take levothyroxine - just because the experience was so horrendous. Not taking into considering that no one diagnosed me - I did myself after a First Aider mentioned 'thyroid gland' he could see mine swollen. TSH was 100 so I am afraid many of us are in the same boat.

Since then whenever anyone says they don't feel well I tell them to get their thyroid hormones checked. Three or four weeks before I was diagnosed one doctor tried to calm me down as I told him I wanted to pay for a full body check on some sort of machine as there was something seriously wrong with me and he said I will take all the blood tests you need and got blood drawn. He phoned to tell me that the results were in and was pleased that everything was 'normal' - the only serious problem was he didn't do any for thyroid hormones.

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I don’t think she’s a minority of one. I know three people who feel great with Levothyroxine.

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Thank you Fortunata . Your answer has helped me realise that it is not that all Levo only takers are suboptimal in health but are just suffering in silence . Etc

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I know 5 who are fine on Levo only and 2 ( including myself) ok on Levo lio combo.

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Thank you . This has helped me enormously. Thank you for taking the time

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Quite a number of researchers have said that many do better on a combination of T4/T3 so they should give everyone this. T3 being the only active thyroid hormone.

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I thought I was ok on Levothyroxine and that I had lots of other conditions which I have recently found out it all turned out to be my thyroid causing them .

So if anyone had asked me before I knew the truth I may well of said I was ok on Levo ...

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Thank you . A good point . Thank you .so sorry that you are not symptom free . I hope you are finding comfort from this site and hope for feeling better in the future .I mean through trying different strategies suggested on here . I am looking at graded exercise therapy next .started watching stuff on you tube and have changed my diet . Dairy and gluten free.

Good luck

Xx

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Many doctors when our TSH is in range make assumptions that any symptoms we have are due to something else and will prescribe. Instead of making sure our TSH, FT4 and FT3 are optimal. Unfortunatley they've been trained that TSH and T4 is sufficient for making their decision of whether or not we need an increase.

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I know of 2 people plus myself who are/have been “back to their normal” on Levo alone - 2 Graves, one Hypo.

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Thank you. This helps a lot thankyou

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I was fine on levo for 15years maybe more, but once I hit 50plus, things started going wrong, every few weeks fatigue and muscle aches, etc, till I added T3, still not 100% but much improved..

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Thank you . Sorry to hear u r not 100 % anymore . It is so hard . Don't give up . The people on this site provide so many new avenues to explore to improve our health . I am not giving up yet

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Hi Sunny101. I’ve had exactly this experience. Was in levo for 20 years then hit 50 and all went to pot. Felt awful. 3 Endo’s told me it was the menopause!! Told me to accept it. Now on 100 levo and 10 T3. Starting to feel a bit better but it’s up and down. Gluten free too

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The pharmacist at my local chemist is very chirpy, looks about 12 :) and is stick thin. I was surprised when she said she was also on levothyroxene!

I was fine for 20 years - unfortunately the last few years have been stressful and messed things up a bit.

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Thank yo u for your reply . Sorry to hear you are not as u were . Hope u find some answers to help from this site and the wonderful knowledge they possess

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Thank you poppppy I am working on it. They are brilliant aren't they.

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I know someone who thinks she is fine on levo, but she has almost no hair. It is such a subjective thing. She may think she's fine on levo, but I may have the same symptoms and feel that I am not fine...if that makes any sense.

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Thank you and yes it does make sense thank you . You have given me another angle on it .

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Yes - I know someone. Said she has never felt any different in 20yrs and only once was her medication altered based on blood test results.

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Thank you sounds similar to the person I know . Thank you .

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Know a few who would say they are better than they have ever been- on levo.

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I did for a long time till the menopause came along!

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Thank you . Yes the menopause doesn't help does it . I know how u feel .

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I know at least 4, plus another who needs T3 as well. 85-90% should tolerate T4 only, but of course some may be on the cusp of tolerance. One of the 4 has used T4 only for 50 years.

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Thank you for your reply . From people's accounts i gather that there must be 1000s of people out responding well to Levo. I guess that's why dox don't believe us

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I've met a few, but no good friends.

I've also met people who are basically fine, but were better on 25mcg more. It actually amazes me that people can do well on a dose that clearly isn't ideal, when I'm so unwell even with great looking blood tests.

I've come to believe that some (most?) people are a lot less sensitive /more efficient, and can manage on any old dose.

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I had a total thyroidectomy last year due to Hashimoto's so I immediately went to Hypo. I'm on Synthroid. At first my does was a little too high at 88 mcg per day. Now I'm on 75 mcg per day and doing great.

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I am so pleased for you that you have found an optimal dose . That you are feeling great . Thank you for your reply also . I appreciate it x

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I know 3 people who are fine on Levo.

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According to my GP and endocrinologist, I was well on levothyroxine, and all my other problems were nothing to do with my thyroid. That’s why I had a cardiologist, neurologist, orthopaedic surgeon, ophthalmologist, oncologist, physiotherapist, dietitian, radiologist, ENT surgeon, audiologist and goodness knows what else over several years. I’m pretty well now, self-medicating with T3 as well as prescribed levothyroxine, and only see a private nutritionist.

I have met many people who all maintain that they are perfectly well on levo alone. This includes friends and family, who think I was clearly just “unlucky” with my health. All of them have health issues, but will never accept that they’re thyroid-related – they’re all known hypo symptoms, gut issues, and obvious nutrient-deficiency problems.

So, no, I have never met anyone who is truly well on levothyroxine alone :( Sorry, that wasn't a short answer! 

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Thank you for your reply . So sorry you have been through so much . And that's another slant on it all so Thank you . As in ;People saying they are well on Levo. But they are actually unwell but from what they believe to be unrelated issues .

Thank you for your time and for sharing .

I wish you all the best for the future x .

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I know 4 other hypos and all did not do well on Levothyroxine and all feel better with T3 added , I don’t think Levo did much for me other than make the bloods look alright, but tbh I never suspected all my symptoms were my thyroid causing them as GPS blamed everything but my thyroid so I thought I was doing ok on it but had a whole load of other illness and pains etc..

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