Does anyone feel better?

[goggy68]

I've been told by GP my TSH is borderline and been prescribed 25mcg Eltroxin. I joined this forum and have found it very helpful in some respects but the amount of negativity and stories of feeling worse when starting medication have put me off from taking it. My question is - is there anyone who has been diagnosed, started the medication and actually feels better? I feel dreadful in lots of different ways and as I have a big house move just after Christmas I am scared to make myself feel worse. Thanks x

[helvella Administrator]

Me.

And, I suspect, most who have been diagnosed in a sensible timescale, and not had delays, super-high TSH, extremely low FT4, etc.

[Agitator23]

Hi. Started medication in June this year. On Levothyroxine (112.5 mcg at the moment) and I feel like a different person! So much better. Weight down, skin much less dry and no rashes, eyesight improved, no more reflux... I could go on.

I now have enough energy to go up and down the stairs as often as I like and don't need to mainline caffeine to stay awake in the afternoons. Game changer for me.

Still some things needing to improve but definitely the right decision for me to take this medication.

[Sparklingsunshine]

Levo is one of the most widely prescribed medications there are, over 2 million prescriptions a year. Although this is a busy forum we dont have 2 million members. We tend to have people who are complex, who havent responded to Levo or who are kept on too low a dose ( depressingly common).

People who are getting on well with Levo and are out happily living their lives dont tend to post on forums. So its easy to get a skewed idea that being hypo is the end of life as we know it from forums. For most people it isnt. Hopefully you will be fine.

[Sparklingsunshine in reply to Sparklingsunshine]

I think as well that many of us, having received help in our times of need stick around to try and offer support and encouragement to other members. I knew nothing about thyroid when I joined and like many had just been given a starter dose of Levo and told to just get on with it. I was diagnosed in 2020, smack bang in the middle of Covid, when non emergency care was severely lacking.

Thanks to the very knowledgeable moderators and other members I learnt the importance of vitamins and minerals, not taking other meds too near to taking Levo, to disregard the '" but you are in range" spiel from doctors and the need to be clued up about this condition as much as possible.

My thyroid is under good control these days but I enjoy reading posts from other members, sharing stories, continue learning and hopefully offer support to people who need it.

[Fruitandnutcase]

Yes! As Sparklingsunshine and the others say, people who are getting on well and there are millions of them out there don’t come on here. I come on because I had Graves’ disease many years ago and the help and support I got from TUK was so much that if I feel I can offer anything for anyone else then I will.

My sister in law had her thyroid removed about 50 years ago because of thyroid cancer. She was in her early twenties and had just had a baby. Since then she completed an OU degree while bringing up two toddlers under four, has taught secondary school maths full time in an inner city school, travelled all over the world, climbed mountains, gone mountain biking, camped in all sorts of unusual places and sailed in their yacht. When they retired they used to go all over the world and pop back when she needed to get more meds.

What you often read about on here is about people who don’t think they need, or just don’t like taking their thyroid meds or stop taking them because they feel better and then realise that they only feel better because they are taking their levothyroxine and have to start taking them again.

[Tina_Maria]

Yes, I feel well and I am fitter now than I have been in my 40's and early 50's. I have had Hashimoto's for over 20 years. I had a hiccup a few years back, when another GP decided my TSH was too low and that I should lower my levothyroxine, which did nothing to the TSH but caused me a great deal of problems. So I found this forum, acted on the advice and gone back to a much better place.

I am sure that there are success stories out there of people who have had no problems with their treatment, or those that have come on here and got better, which you would not hear about. And sadly, many people these days are diagnosed far too late, by which time the low thyroid hormones could have caused other severe problems, which then are more difficult to get right.

This forum is a good place where people can voice their concerns, get support and speak to others, who are in similar situations. And although they are in a bad place now, it can give them hope that in time, they might be able to overcome their problems and start feeling better.

[Hedgeree]

Hi goggy68,

I was prescribed levo post partial thyroidectomy in 2022. I've still got a way to go but I feel much improved particularly in my mental health. Initially I couldn't tolerate levo as I'd been undiagnosed hypothyroid for many many years. Once I found the right brand of levothyroxine that suited me I've titrated up very slowly since then.

I was very symptomatic for some years before being prescribed levo. I was scared at first but starting slowly has worked for me; obviously titrating slowly won't work for everyone but it does for me.

[Obsdian]

I have other health issues too and don't consider my thyroid issues optimized yet, but going onto thyroid replacement medication is still much better than if I hadn't done it. It's a process getting to optimal.

[tattybogle]

me . i had no problems whatsoever from the levo tablets . started on 50mcg, nothing got any worse . no side effects etc ..... no improvement at all for a couple of weeks ish , then had about one week of feeling quite a bit better , then back to not so good again, but not as bad as i felt before i started levo ...... then repeat blood and dose increased to 100mcg .... no change for about 10 days then about a month of feeling better this time , then less good again , but not so bad as before...... blood test , dose increased to 150mcg .... nothing much for about 10 days,, then felt about 75% better for a few months , then a bit less good again ... further dose tweaks etc etc .

my problems came later when i wanted to be functioning at 100% not just 75% and the attitude of doctors was that there was nothing wrong with me cos my hypothyroidism was now 'fixed' ... never really cracked that one unfortunately , but without levo i was only funtioning at about 30% ,,, so 75% was a definite improvement.

It was not a straight line improvement , it was up and down again , but each time the "better" lasted longer,, and the "worse" was less bad than the last time .

Regarding the negativity ... yes, really sorry about that, it's sort of inevitable cos the people who don't have any problems with it don't end up on forums ... and to be honest those of us who do hit problems quite enjoy the opportunity to have a proper rant to people who 'get it'... cos hardly anyone we meet in the real world world understands how much of the body and mind is affected by thyroid hormone imbalances .

But it does concern me that new patients coming on here become worried about things that won't necessarily be an issue for them.

[SlowDragon Ambassador]

Because of your age ….you have been started on only 25mcg ……but you will need further increases in dose over coming months

GP should have advised booking retest in 6-8 weeks after starting on Levo

No all brands of Levo suit all patients

Watch out for brand change at new prescription and at dose increase

ESSENTIAL that GP also tested vitamin D, folate, ferritin and B12

Plus thyroid antibodies to see if cause of your hypothyroidism is autoimmune thyroid disease also called Hashimoto’s

Have these tests been done?

What vitamin supplements are you currently taking

[Sleepman]

I felt better quickly on levo ... my feet warmed up.

I have since added T3 as I am a poor converter and have optimised. 2 years in. AI type.

With levo T4 only, there are some who struggle due to ingredients or if adrenal glands are not working. If you are under autoimmune attack then your T3 and T4 might swing around too - this can happen.

I think a lot of people on this forum are the 10 to 15% who struggle on just T4 and so it can be a bit scary. I scared me at first, it is now a blessing that people who are worse off share what they have learned so that it is a big comfort blanket.

How do you feel now ? what are your symptoms. Your other posts blood results showed you were likely in need of levothyroxine. Low thyroid levels is like a low battery everything can be effected in varying amounts with different people.