Last night I did not take my medication

[Josephineinamachine]

So yesterday after weeks of feeling ‘medicated’ as well as unwell (or are they both the same thing??) I decided in a toddler-type quiet tantrum that I was NOT going to take this stuff anymore.

Now, of course, it’s another day 🙄

Feel fine this morning but after reading past posts realise this is probably an idiot thing to do 🤔

So tonight I’ll get back on the train and take the tablets which I’m sure are not agreeing with me.

Does anyone else ‘feel’ their medicine? It’s like it’s thrumming in my system…almost like a smell…not quite…a sensation of being drugged? Something grungy in me. 🤮

I’m raging against Hashis, T4, T3 and the whole horrible thing this is!! I keep thinking ‘there are much worse things’ but sometimes it’s really hard to hold onto that perspective.

😞

[Lalatoot]

I can identify with that. I threw my toys out of the cot and decided to cut my levo down to 25mcg per day and then stop it as it was the devil's tool. Well I got down to the 25 and felt great for 3 months. Then I became very hypo and very ill. Big mistake. Hang in there things improve slowly in the thyroid world.

[Josephineinamachine in reply to Lalatoot]

Lol, the Devil’s tool. Yup. That’s where I got to for sure. Only for the one night. Thank you. Back on the stuff again and just waiting - like so many of us - to feel okay again 😊

[Hidden]

Think I’m at the opposite end - spent too long undiagnosed and then under medicated to ever consider not wanting meds . Hashi’s is a frustrating condition to live with and the secretive and mysterious (even deceitful) ways of the NHS compound efforts to help yourself - and when other things go on, it’s impossible not to blame an underlying condition .

A million questions a week run through my head about past treatment and how it has affected me and how it could have been better. But they will never be answered .

So I ‘get’ the feeling of wanting it all to go away but therein lies the road to nowhere ……

You’re right - there are much worse things to deal with but logic doesn’t trump feelings.

Console yourself, if you can, with the fact that you have access to an Endo who seems willing to work with you and you have treatment options which many struggle to access. You therefore have a lot of control which is much better than having none . 🙂 Hope you feel better today

[Josephineinamachine in reply to Hidden]

Hi Hidden im glad you’re getting on okay. Yes try not to think about the past and concentrate on now. You’re absolutely right. I do have options and I’m sure the Endo will be fine. Can’t wait for my appointment now! Take care x

[Hidden in reply to Josephineinamachine]

I’m just hoping that if we can give the changes time to ‘soak’ , we will ultimately feel better, although adjustments are very likely . I hope my Endo will listen .Good luck with your appt and I’m keen to know what he says xx

[Josephineinamachine in reply to Hidden]

You sound very clear that you’re feeling better in so many ways. Your Endo can’t *not* hear that surely? Be confident and assertive and write down every single positive before the meeting? Then you can just work through your list 😊 xx

[Hidden in reply to Josephineinamachine]

Yes , I was thinking of doing that and sending it in advance 😊. Some of it is really hard to articulate - such as ‘feeling like me again ‘ - and that’s such as strong feeling . That’s the trouble with Hashis : it does seem to mess with your head and make you doubt your own judgement .

I’m sorry you’re not feeling the benefit . .. don’t give up yet - my early years when finally diagnosed were horrible and it took a full 2 years after getting properly medicated to achieve a reasonable state. I was stable then for a long time but tbh you begin to forget what ‘well’ feels like .

It will get better xx

[Josephineinamachine in reply to Hidden]

Thank you 😊 I have had some nice few days of feeling like me again… they haven’t lasted but I know there’s a dose of something that’ll work somehow. I’ve only been diagnosed for a year so I think, from this forum, this is not an unusual place to be!

Feeling like you - so somehow you have to articulate this - emotionally (contented, happier) cognitively (no brain fog, clarity, ability and confidence in making decisions) and physically (stronger, no more fatigue, stamina, pain free, better sleep). Then there’s obviously the usual - no stomach problems, good digestion, no cold feet, temperature is good. Capturing what matters to you and what Endos recognise as symptoms… good to send the list in beforehand! 😊 x

[Hidden in reply to Josephineinamachine]

Thank you x A year isn’t long in Hashis time - you will improve.

I was in my late 40s when I became ill - living in Midlands and driving to London on a Monday and back up on a Friday after a week in a hotel and working between central London and Basildon .

I’d been to my GP repeatedly for at least 18 months - and was just told “you do too much - have a holiday”. … one day I passed out in an hotel reception - the staff suspected I was drunk !! When home at weekends, I couldn’t string a sentence together - passing out for hours was normal .

In the end I went to my GP one Monday morning before travelling again and refused to move from where I sat till HE did a blood test himself. Two days later, I had just emerged from Barbican tube station snd my phone rang (I’ll never forget it🙂) - and my GP said - you’d better come in and see me.

That first test showed a TSH of 27 . Initially I was relieved to have a diagnosis and treatment - but sadly I then experienced useless prescribing, persistent symptoms - told it was the menopause, depression and all the usual . Was eventually sent by GP for a brain scan (!) and when questioned by the South African locum about why I’d been sent - he looked at me and said very emphatically “get a private endocrinologist referral as soon as you can” which I did the next day .

At last, I saw someone who knew something and he took over my prescribing until he retired several years ago . It took a good 12 months from when I first saw him to feel better.

Since his retirement I’ve been back on the NHS roundabout : I can’t now afford to pay privately - but with the great help from

this group I have hope in fighting my corner.

So sorry for the long post - but I want you to know - it really will get better even though it is hard to accept you are managing a life long condition - and need to think in months rather than days or weeks for things to improve 😊

[Josephineinamachine in reply to Hidden]

Oh no that sounds like a HORRIBLE time!! Now I understand why you say you keep thinking back about what could have been… bloody GP! I’m so sorry but so pleased you’re feeling better! Finally! Thank you for sharing that 😊 x

[Hidden in reply to Josephineinamachine]

It started 20 years ago - I like to think things are better now but from what to read I’m here, it appears not much has changed . Xx

[PixieElv]

HiyaI totally get you. I felt like that with T3, like it was ‘poisoning’ me, gave it up and am feeling much better on T4.

Makes no sense but hey! Also I don’t have Hashi’s so don’t have the swings.

Hang in there and try different combinations and or taking your meds at different times?

[Josephineinamachine in reply to PixieElv]

Thank you 😊 it’s not just me then! Really disappointed it doesn’t seem to be working! But I guess there’s still scope for change. Are you symptom free on T4 only?

[PixieElv in reply to Josephineinamachine]

I have no side effects on T4 only, but I still have afternoon energy crashes. But I’m much better then I was before Levo. I’m currently ‘playing around’ with taking my Levo in 2 doses throughout the day to see if that works. Jury is still out…

[Josephineinamachine in reply to PixieElv]

I’m thinking that might be my next move. Please update on how you get in? Good luck!

[PixieElv in reply to Josephineinamachine]

Good luck you too!

i am currently on 175mcg. 100mcg at 5:30am and 75mcg at 12noon. Both on an empty stomach.

Let me know how you get on.