Thyroxine success stories? Please post them here...

[mk366]

I've just started on thyroxine and am feeling pretty overwhelmed with all the information out there, plus it doesn't help that all of it seems to be anti-thyroxine. I'm hoping it's not all bad but I'm feeling quite lonely in all this and have nobody to talk to. I'm 23 and in my final year of university, and I'm feeling apprehensive about the future now knowing I'm hypothyroid and entering into a world of medication which seems so blurry. I think maybe only people speak up when it's negative but if u have any hope of this medication working for me please share as it will really help me at this time

[Hidden]

Unfortunately it so often happens that when someone gets well they no longer have need of sites like this and they disappear. I wish they would stay long enough to reassure you that for many people thyroxine DOES work, and you may be one of those people. Let's hope so. Only time will tell, once you have tried it. You seem a bit down at the moment, but that may well be because of the condition - it can make people feel very low and apprehensive, and the thyroxine takes a while to kick in - maybe a week, maybe two, three or four weeks. Everyone is different.

Keep a diary of how much you are taking and how your symptoms change, then please do let us know how you get on.

Jane x

[Hennerton]

Welcome to the site. I think the way to go forward is to fully expect that it will be fine. As Jane says, keep a record of your doses, as they may change and always ask for copies of blood test results, showing the reference range. Many of us have learnt the hard way that we must take control of our lives and not always believe the doctors if they tell us results are fine. Check for yourself. Post them here for advice. If you feel you are not quite right, do not accept it. See your doctor and ask for blood tests.

I have only just discovered my iron levels are low and have been for years but nobody told me. Iron is used to convert T4 to T3 in your body, so is very important. Eat well, look after yourself and let us know how you get on. Good luck. x

[bantam12]

Hi mk

I can tell you thyroxine DOES work for many many people, unfortunately the forums ( all forums) are full to bursting with negative stories which I have always maintained is upsetting for newly diagnosed folk as all they read is how bad thyroxine is, how bad the doctors are and the tests are a waste of time. Yes most people on here have had or are having a tough time but there are many more in the world who are 100% ok.

I have 6 close family members all on thyroxine and we are all living busy normal lives, jobs, kids, the whole works.

Please stay positive, relax and don't worry about the issues others may be having. It may take a few weeks or months before you start to feel better and you will no doubt need some dose tweaking along the way, don't be surprised or worried if you dip back down a little before you are due an increase as that is how it goes for everyone but you will get there, the right dose is there you just have to fine tune it.

Don't let being hypo stop you doing what you want to do.

All the best

[Alli1]

I was on Thyroxine for 15 yrs and it worked for me, within about a month of starting it I began to feel so much better and back to my old self I had been unwell for about two yrs and not diagnosed. Three yrs ago I got ill again and I needed to go onto NDT but looking back I think this was a combination of faulty batches of Thyroxine and mismanagement and a lack of knowledge on my part about what I needed to be looking out for by way of vitamin supplements etc. When I started on thyroxine I was given no information by my GP other than being told that I needed to take this medication for life. I would encourage you to take the very positive and informative ethos of this site, you do not need to focus on what is not a problem for you. There is a wealth of knowledge and experience on here and in my view it just serves to help us all become more responsible for our own health. Good luck with your thyroxine and have faith that this medication will indeed work for you as it does for so many people.

[Hidden]

Sorry mk if I made you feel a bit negative on your other question :-s thyroxine might be just the thing your body needs to get well and you won't need anything else

[mk366 in reply to Hidden]

Hello no you didn't you made me feel much better it's really nice to have this forum as it's the only thing keeping me strong. You were totally right about being patient with the medication. I just think that when you start on it psychologically you need to believe in it, and as ive been finding out about my condition mainly through the internet it is just not very good to hear all the negativity about it and I can barely find anyone saying it's worked for them and they feel good so along with my newfound patience that you helped me with I also wanted to instill some belief as well. I'm happy to be patient with thyroxine if I know it does work thanks again

[shaws Administrator]

Welcome

There must be thousands of people on thyroxine alone and as stated in some of the answers they do not search for information as they are feeling o.k. Besides it is the only replacement that is allowed by the British Thyroid Association and RCoP so why wouldn't it be satisfactory.

It is only if problems arise and we go to the GP or Endo that sometimes we hit a brick wall when we are told our blood levels are fine and that whatever is bothering us is not connected to the thyroid gland. Most times it is and we eventually learn this ourselves but it may be due to fillers/binders and not the thyroxine itself. Some people have awful symptoms but are not diagnosed due to their TSH being 'in range'. Before the blood tests came in in the 70's people were diagnosed according to their clinical symptoms alone and medicated.

We do need supplements too to give our body the best chance of converting/absorbing T4 (levothyroxine) into T3 which is the active hormone needed to flood our cells. T4 is inactive. This is a list of supplements and if you think you would benefit you can take whatever you feel is best.

thyroiduk.org.uk/tuk/treatm...

I do hope levothyroxine makes you well and that you can continue your studies in good health.

[Ruby1]

I'm fine

I was diagnosed about 10 years ago. I get checked every year and a couple of times my dose has increased. I have two friends also on thyroxine only and they seem to be fine - one who was also diagnosed when at university.

I like sport and I came on here mainly to see if anyone else noticed that heavy exertion knocked them for a few days. I do have the odd wipeout day, but mostly I'm pretty fit. I'm skiing this week and apart from the usual aches which anyone who skis knows about, I'm feeling very happy that thyroxine is working for me.

I hope thyroxine works for you too

[Marz]

....I think the good thing is that you have been diagnosed at a young age and before the mal-functioning can affect other bits in the body. So try to think of it as a positive. I look back over the years and realise that I probably had a problem in my late teens but was not diagnosed until I was 59. My life has been good but fraught with illness and surgeries with no mention of the thyroid along the way. Have always tried to keep active - battled the weight - worked in demanding careers - brought up a family- but always thought something was not quite right ....it took retirement and a move to Crete to get sorted ! Being treated is great for you and will enable you to flourish with your University course.

Not wishing to complicate things for you but do you have Hashimotos ? This is the auto-immune version of thyroid illness and is the most common. If so then it can be greatly helped by changing the diet...many of us are on that journey and can help if needed....

Wishing you wellness and a successful time at Uni......

[Hidden]

Hi

To reassure you; It took me a few months to feel well, and a few more to learn how to manage my condition (since my GP wasn't), but I'm doing fantastically well on levothyroxine! It does suit many...

Even though now I'm really well (better than I've been for years) I stay on this site - partly to learn more as interesting points come up, partly to keep updated as things do change and my thyroid is getting worse and partly to try and help others.

There's no reason not to be positive! Good luck

Liza

[mountaingoat83]

Hi there, I started on 25mcg Levo in March this year, now up to 75mcg (TSH 0.75 last month) and feeling fine The thing I didn't realise is that it can take months to find the right dosage, and my TSH fluctuated during that time which was a bit confusing! Keep a note of your results and how you are feeling, and if you still don't feel 100% even though you're somewhere in the 'normal' range, find a GP who will work with your symptoms rather than saying 'computer says no' based on a number (as my previous GP did). Keep your chin up, it may take a while before you feel like yourself again, but you will get there.

Feel free to ask me any questions about starting treatment etc if someone else's experience would help.

Emma x

[jmward86]

Hey

Ive had hypothyroid now 4 2yrs and im on levothyroxine. I feel great since they ave got the doseage rite. Hope everything goes ok with u

Jo x

[Tarry]

I've been taking it since March. I started to feel better within about a week although I did have some side effects at the beginning, the main one being terrible nausea. I soon started to feel back to normal only then realising how ill I had actually become. I had a fabulous summer feeling on top of the world. Just recently had a bit if a blip and after a blood test showing a rise in tsh my dosage was increased by gp. This was two weeks ago and I'm almost back to my old self again. So, yes it does work for most people I suspect. Stick with it and keep a diary of how you feel and your side effects/symptoms, however random they appear. I know several people who take levothyroxine and have never had any issues and are normal, slim and happy.

[Hidden]

It feels a bit daunting being told you're going to be on meds for the rest of your life for this condition. But it's more than likely that if you get your medication nicely balanced you'll barely know you have a condition. Most people are fine on the NHS's preferred treatment (unfortunately most of us on this site aren't them). On the up side - you're now entitled to free prescriptions. Until you're pensionable! Ask at Reception of your GP for the form. I don't know if you get free scrips anyway as a student? But your entitlement will continue until you get your pension (!), for all medicines not just your thyroid meds. Good luck.

[mk366]

Hi everyone,

Thank you so much to everyone who has replied, I've read some of these comments and it's made the world of difference to me, I wish I had someone I knew in person to talk to - I've felt quite lonely with all of this but this has really helped.

I went to a different doctor today and he was fab- he admitted he wasn't a thyroid specialist and assured me that cause my TSH is normal he will always request that the labs do my free T3 and T4 and I won't have to pay again (I had to pay for them the first time round). He looked at the blood tests that has been done and I haven't actually had a blood test done for ferritin b12 and folate. Are these very essential? He said I would have to wait til the new year now, bad timing, and that I may as well do them when I have blood drawn in 5 weeks for my 6 week check up on thyroxine. He said I could have them done earlier in the new year if I want though. Any advice? Should I just wait?

Thanks again eevrybody, I know for sure tat when I feel better I will be active on forums helping others- it will be an amazing thing to do!

[Hidden in reply to mk366]

Hi mk366, it sounds as though you have an understanding GP. B12, ferritin and folate are important for converting T4 to T3, so it is good your GP is checking them.

I was never diagnosed as being hypothyroid, but had a total thyroidectomy because of a goitre over 10 years ago. That leaves you completely hypo and on lifelong medication. I was put on 100mcg levothyroxine and nothing else was explained other than getting annual tesst. I survived very well on this until recently when I became overmedicated. But then I retired, lost over 1.5 stones and became a lot more physically active - so possibly don't need as much because of age and weight :-).

I also had a colleague who was diagnosed hypo when she was in her early twenties and was transformed when she started thyroxine.

So, as others have said, there are many success stories.

Wishing you well with your studies.

[Ansteynomad]

After a very long struggle, I finally started on thyroxine in June this year. I started on 75mcg, went up to 100mcg, down to 75/100 (disaster), back up to 100 and am now on 125mcg. I have lost 20 pounds without too much effort on my part, I have regained a capacity for alcohol (yay!), I sleep like a baby, my sense of smell is returning, I have no active psoriasis for the first time in 22 years and so it goes on. I think I am probably about at the optimal dose for me now.

Whether it will stay like this, I don't know, but I'm currently feeling better than I have in years.

[Jessiepup]

I have success with Thyroxine only, helped along with having a Gluten free diet and regular Iron.

The key is to look after our body

[Hidden]

hi there I'm on thyroxine and it seems to work for me still in early stages but it does get better going back to my doctor next week to check if dosage is correct but I have no problems with thyroxine

[Clutter]

I dont do well on T4 at all (surgically hypo) but my younger sister who is 2 years hypo after RAI following many years of Graves is thriving. Have just persuaded her to tweak her dose up a tad - I want her to have plenty of energy to wait on me hand & foot at Christmas

Do check the vitamins recommended & dont skimp on sleep. 10+ hours is a good target for hypos.

[Hansaplatz]

I was well on thyroxine, once I found the right dose - that took a fair bit of trial and error, and me being a tad pushy with my GPs but I got there in the end. Unfortunately that didn't last for me as I had complications last year, with fluctuating thyroid function and vitamin deficiences and adrenal issues. BUT for almost 2 years I was well on T4. during that good period I worked full time, did jogging, badminton, gardening and had an active social life so there's some proof you can feel well on it as I had zero hypothyroid symptoms during that time. It does happen and I gather a good portion of thyroid patients - mostly ones who have no need to come on here - get well on T4 alone.

[Hidden]

I think possibibly some do improve on thyroxine.

Also some do initially and some don't if they are left too long before diagnosis and treatment.

Possibly as the disorder for some causes additional conditions later on in their journey their overall health is ignored and cheaper for GP's now to dish out anti depressants.

I believe my case is/was misdiagnosed initially and I was left suffering to the extreme (Liver/Kidney/adrenal) until my TSH rose and then diagnosed as Hashi's (Although GP didn't tell me it was Hashi's infact told me ZERO). My brother died at 48yrs with MI sudden death and I believe his death was down to the same genetic disorder (Liver /kidney/microsomal)

Thank god for all the wonderful people and admins on Thyroid UK that are literally life saviours <3