Can I please ask how people knew levothyroxine wasn't for them and how you felt and how long it took to realise thanks as always x

[juliaheppers]

[nobodysdriving]

for my son it was fairly quick, he started on 25mcg, upped to 50mcg 2 weeks later, upped to 75mcg 2 weeks later, upped to 100mcg 2 weeks later.

He felt NO improvement whatsoever on any of the increases and at 100mcg within one week started to feel WORSE in all of his symptoms.

He tried NDT and this although did not make him worse, made him no better.

He is now on T3 only and up to 40mcg felt NOTHING, then from 50mcg he felt a 'slight' improvement, he is now on 70mcg and we are still reviewing how he goes.

But some people get on well on levo for years then it stops working for them....

so we are all different

[juliaheppers in reply to nobodysdriving]

Thank u

Yes we are all different - which is something that my care team have overlooked

I feel like a pain in butt - which I said to my gp!

I'm glad your son is getting there xxxx

I need to find the strength to pin my endo down and make her listen

She even said because I'm a " big girl" there wasn't any worry about me being on 300 mcg of levo !!!!!!! - I don't care how much I'm on if it works!!!!!

Thank u for you time

Julia xxx

[Katkin1]

I was on 150mg of levothyroxine for 7 years. From the time I started taking it I didn't feel any better than before I took it, but my doctor said that was to be expected with my condition! It wasn't until I started reading articles on the internet and looked at the questions people asked on forums (only 6 months ago) that I realised that hundreds of us were in the same boat and there were other options. I decided to investigate some more and joined the forum and bought books.

I then started the lengthy process of trying to get my doctor to realise that there could be a better treatment for me. In the end, after weekly visits to the doctor telling her how unwell I felt and I couldn't go on like this, my doctor consulted an NHS endocrinologist, who said that I was fine as I was, as my blood tests said so. So I went to see a private endocrinologist who prescribed T3, through my doctor, and I feel a whole lot better now. I just feel aggrieved that I wasted 7 years of my life not knowing I could feel better than I did.

Some people do feel OK on levo, but if you don't then don't give up - there are other things to try.

[juliaheppers in reply to Katkin1]

Thank u

It is sooo hard to be heard by the people that should be looking after us

It makes me so sad that this lack of empathy has wasted people's lives and I so know where u are coming from with that

We just need to get the strength to carry on don't we even tho when we are so poorly

I hope my latest intervention finally rings an alarm in my endos ear

Thank you

Julia xx

[teyris in reply to Katkin1]

It might seem a silly question but do you now take T3 instead of levothyroine? I tried on numerous occasions to tell my Dr that I felt poorly but he almost dismissed me like I was imagining things and because I am within 'normal' range they wont send me to see an Endo even tho my TSH result is different every time

[juliaheppers in reply to teyris]

Hia thank for your message x

I have been on t3 for a week on top of levo 300 mcg!

I started to reduce levo coz it makes me feel ill

I had t3 for two weeks last jan but obviously wasn't given it again and my levo was just increased even tho I said I was feeling no better I was tod I was a big girl and 300 wasn't that much

I was given t3 last week probably to shut me up - so next time I go back hopefully before August I can suggest that levo is not working and to suggest to have t3 and t4 or just t3

Something's not right tho

Just want to get my life back

Regards

Julia xxxx

[bellk]

I have always suspected that my thyroid bumped along the bottom since I was in my early teens but it was finally tested when I was 40-ish and was officially under active. Started thyroxine and immediately much worse. I do wonder whether my thyroid simply stopped acting once it was given thyroxine. Anyway I got as far up, I think, 300 mg thyroxine and simply didn't feel right, not like was before. Brain foggy, had lost chunks of memory. I just said to the GP, I'm not right, I know I'm not. I was referred to an endocrinologist who is good, actually listens to symptoms and started me on a bit of T3 and let me adjust until I was on 70 µg, which I have been on for years. The best way I have of describing it is that once I was on it was like a light bulb was suddenly switched on in my brain. It took a good year before I could access a lot of past memories, though always there in my brain, I just couldn't get at them. It was funny seeing friends meeting the real me with a functioning brain. My short-term memory has never recovered, I can't absorb telephone numbers easily, for example.

The analogy I used to explain to a new GP why I really didn't want to go back to thyroxine was that on Liothyronine, I have a 90 W bulb in my brain, on thyroxine it is about 30 or 40 W. And she understood, I think. I also reminded her I have narcolepsy so really my brain needs all the help it can get!

[juliaheppers in reply to bellk]

I keep replying to u to say thank u and then the message disappears

I hope u haven't got numerous ones now but to say thank u and the light bulb analogy is the same for me

Julia xxxxxxxx

[Heloise]

I just posted this video about T4. youtube.com/watch?v=RXnE7tT...(Not working as expected?)

[juliaheppers in reply to Heloise]

Amazing thank u soooo much

This is definitely the tool I need when I next see my endo

I have noticed even when I take t3 in the morning without levothyroxine it makes me feel better and yesterday took my levo at lunch time and I then felt ill and dark inside

I hope she listens

Thank u again

Julia xxxxx

[shaws Administrator]

This is my experience. I have since moved on to NDT and T3.

thyroiduk.healthunlocked.co...

[juliaheppers in reply to shaws]

Thank u so much

Really helpful

Julia xxxx