Does anyone feel good on T4 only?

[KittyKitten]

Do you feel healthy without symptoms?

If so, what dose of T4 are you on?

How long have you been on T4?

Did you do anything else that helped you feel good/healthy? Or did the T4 fix everything?

Thanks!

[Lalatoot]

Kitty lots of people feel good on levo only. Unfortunately they are out their getting on with their lives and aren't on this forum.We are the naughty step of the thyroid world on here.

[KittyKitten in reply to Lalatoot]

Thanks for your reply! Yes, I know a couple people that take thyroid meds that likely aren't on the forums. But I don't have a good enough relationship with them to ask about their symptoms.

I am in another group though, and anytime someone says they are struggling with symptoms on thyroid meds, there are numerous comments by people saying that it can't be from the thyroid because the meds will basically cure all thyroid symptoms. So I was just posting here in hopes to hear those type of stories.

[Lalatoot in reply to KittyKitten]

I have quite a few friends happy on levo. One on a low dose; another after RAI who is not very good at always remembering to take her levo and who is very busy and active; another who is elderly and coeliac; and another who takes her meds with food.

[Rapunzel in reply to KittyKitten]

Hello Kitty, I do question why people would bother telling other people, tra la la, how well they are on levothyroxine and how, if they still have symptoms, it must be something else. 'It must be something else' seems however the typical response of medics who then go on to prescribe auxilliary meds to resolve 'unrelated' issues. Look here thyroiduk.org/if-you-are-un... which I believe is more a list of symptoms for those who have not yet established that they have a thyroid issue or the 'penny drop' moment when thyroidies accept that levothyroxine doesn't work for them...

Kitty on holiday

[tattybogle]

My auntie did .. she had a partial thyroidectomy for graves age about 20 and was then on about 200mcg Levo for many years . and was absolutely fine for most of her life on it.. had a bit more difficulty when she was in 70's.. but rarely went near a doctor for any blood tests... so her dose may not have been right when she was having more difficulties . (she was still running a small holding and looking after a few flocks of sheep all over the place , but was getting very tired and was limited to doing one thing and then needing a long rest.. and didn't have much spare energy for anything else/ social activities. But for a good 50 yrs she was very well indeed.

[KittyKitten in reply to tattybogle]

Thank you! May I ask how you knew she was very well?

I'm only asking because around other people I just pretend like nothing is wrong, I've even pushed myself to work 3 jobs and go to family events and would tell everyone I was "good" and in reality I was not.

If this was not the case, and she was very well then I am happy that the medication worked out for her for so long!

[tattybogle in reply to KittyKitten]

we discussed it quite often after i got diagnosed autoimmune hypo when i was in my 30's .. and i used to stay with her quite a lot when i was kid, so would probably have noticed if she was struggling ... she worked full time as teacher and chose to keep sheep and do all sorts as well ....... stuff she wouldn't have been doing if she was struggling for energy .

[KittyKitten in reply to tattybogle]

Thank you, that is good to hear then. Do you feel good on T4?

[tattybogle in reply to KittyKitten]

well . i feel better with it than i did without it.. but it never fixed me 100% .. i was never as well as my auntie was on it ... see my profile... Levo improved the problems i developed since becoming hypo by about 75% , then after that GP 's said "remaining symptoms that fluctuate can't possibly be thyroid related , that's treated now ", and so i got dumped in 'chronic fatigue?' bin . (funny, cos i didn't have any 'chronic fatigue' type problems before i went hypo)

To be honest the fact that my aunty was evidently fine on it made me believe the GP's were probably right for a couple of decades.

When i found out her dose was 250 / 200mcg ish . i thought "oh, i'm obviously 'less' poorly than you are .. and i'm still not functioning as well as you .. so i must just be a bit useless as a human "

But i now realise something .. when she was first given thyroid hormone in the early 1950's, she will have been on NDT for the first few years of her treatment .. then changed over to Levo at a time when they used to routinely give much larger doses ... 200/300mcg if people didn't feel well on lower dose.. (they didn't have the latest generation TSH tests back then , so they couldn't measure 'low' TSH very well, so there wasn't as much of the "your TSH say's your dose is too high" that we get nowadays ).. and as she felt well, she didn't go to the Docs much.. and she was very independently minded.... i doubt her GP's would have argued anyway , even it they didn't want her take such a large dose . GP's were not hobbled by guidelines until relatively recently ... thyroid guidelines for NHS only appeared in 2019.. before that and certainly in the 70's/80's /90' s ,Levo dose was much more left up to the Doctors discretion and intelligence than it is now.

I do always wonder if she would have felt so well and active if her dose had been decided by TSH , rather than by how well she felt.

Whether she would have been safer on something else that had a bit of T3 and less T4 is open to question... she did have a very nasty stroke before she died , which is one of the concerns GPs have of 'too much' thyroid hormone and very high T4 ... ie . does it increase risk of AF ? .. (AF carries high risk of stroke.)

I don't know if she had AF.... if she did .. she didn't know she did .

[SlowDragon Administrator in reply to tattybogle]

She would almost certainly be considered “over medicated “ these days on 200mcg

It was the invention (or more correctly) the over reliance on TSH above symptoms and Ft4, Ft3+that’s been the downfall for thousands of thyroid patients

[Peachy22]

Yeah I only take Levo and I am doing good, my symptoms are manageable. I take 200mcg 3 days a week and 150mcg four days a week.