How does hypothyroidism make you ‘feel’

[JonnyA]

I’ve not felt myself for some time now, and as it’s still early days for me in terms of medication that remains the case. I struggle to articulate how I feel physically inside, but I wanted to try and do that as best I can here to see if what I’m experiencing is typical for those of you suffering with this illness, or whether there may be something else causing me to feel the way I do.

The main and obvious thing is the fatigue, but it’s not a case of being sleepy for the most part, but more like an absence of fuel or energy on which to run. Despite the fact that I do try to train as much as possible (both weight training and aerobic exercise), movement feels just so much tougher than it should - like I’m walking through treacle. When I have worked out, rather than the rush of endorphins I used to feel, it just feels like the energy-less black hole at the pit of my stomach gets even bigger.

And I do feel that sometimes, like there’s a physical sensation deep in my torso if anywhere. It’s accompanied by a weird fuzziness which runs throughout my whole body, a sort of light tingling, not painful but distracting and mildly unpleasant.

Then there’s this constant feeling of rumbling, low-level anxiety. I’m tired but constantly edgy - I cannot relax at all. I have completely lost the ability to feel that kind of relaxed state you get at the end of a hard day’s work, when you might sit down in front of the TV or read a book. It’s just not there anymore, but neither is my concentration or attention span - I am unable to focus on anything be it entertainment or work task for very long without a massive concerted effort.

And that’s gist of it. It will start shortly after I wake up in the morning and get gradually worse throughout the day, until I go to bed only to be faced with a stubborn inability to sleep. Though tired, I cannot get my body to chill out or my mind to switch off.

No single feature of the experience is individually that unpleasant, but bundled up into a complete package I find it a thoroughly miserable place to be.

Tired. Sluggish. Mildly but constantly anxious and edgy. Unable to relax at all, I can’t remember the last time I just felt casually relaxed, despite being fortunate to live in a very comfortable home. Devoid of energy. Fuzzy. Tingly. Almost permanently slightly nauseous. Unable to think clearly, or to concentrate for the shortest of periods. Depressed about having felt like this for so long, and that I have visibly lost the vigour and drive which used to be such a big part of my character.

All of that, in totality is just hugely physically and emotionally draining in itself. Does all this sound vaguely familiar to you and your experience, or could I potentially have something else going on?

Your thoughts appreciated as always.

Thanks!

[NWA6]

Hi JonnyA. Here is a list of hypo symptoms from ThyroidUK

google.co.uk/amp/s/thyroidu...

Check off all that apply.

I was looking through previous posts and I was curious as to why you’re on T3? Did you not get on with Levo? Did you try a decent dose of Levo before starting T3? Your symptoms may also be too much T3? Maybe your replacement is not appropriate?

[JonnyA in reply to NWA6]

Well, I ticked off 30 which I’d say are pretty nailed on in my case. That still leaves others that weren’t so relevant, but I imagine that’s a decent chunk.

My endocrinologist recommended the T3 after I didn’t really respond to T4. I’m currently on 100mcg T4 and 20mcg T3 - I’m not as of yet feeling the benefit. I feel absolutely dreadful today in fact, but I’m working through it.

[NWA6 in reply to JonnyA]

Are you in the uK? I’ve never heard of an Endo prescribing T3 unless you’ve really given Levo a chance and been through the wars for several years. In your case I don’t know if that was preemptive or not (given your high in range results to begin with) I really do wonder if some of your symptoms are because of the T3. Do you think/know that you were given enough Levo to begin with?

[Lizzo30]

Hi JonnyA I was reading some of your previous posts and saw you had dramatic weight loss a few years ago and I would just like to point out that this can mess with your endocrine system getting back to normal will take time , I imagine your endocrinologist tested your hormone levels what was your testosterone status ?

[mstp]

Yes, all of those symptoms but, overall, I would liken it to feeling as if my body is a car being driven in the wrong gear.

[tattybogle]

Hi Jonny . "Walking through treacle" ..... tick .

"need massive concerted effort to concentrate on anything " ..... tick .

"feeling depressed about it going on so long whilst feeling /looking/ acting like you've totally lost your previous 'self " ...... tick .

"fatigue, but it’s not a case of being sleepy for the most part, but more like an absence of fuel or energy on which to run." .....tick .

" When I have worked out, rather than the rush of endorphins I used to feel, it just feels like the energy-less black hole at the pit of my stomach gets even bigger" ...... big tick .

yes ... in my experience those are exactly what it felt like.

Accompanied by :

* when i've reached home , i'm still just sitting in the driving seat 5 minutes later... cos legs are REALLY heavy things to move when your muscles have run out of juice.

* instances of finding myself staring blankly at carrots for 3 whole minutes (at least) in the supermarket.. with no idea what to make for tea .. in fact ,no thoughts at all.... just 'carrots '

*having to lock my knees back to hold my skeleton up at the checkout. cos all my muscles gave up playing while i was staring at the carrots.

* getting really pissed off with those silly barriers that aren't strong enough to lean on in the post office queue.

* instances of being unable to find the right word (or any word ) after exercise /exertion, while feeling and looking like one of those who collapse on the tarmac 2 inches after the finishing line at the end of a marathon.

* sudden instances of feeling mildly hypothermic / becoming a bit of a liability to others if i decided i bloody well WAS going to that dance on the hilltop.. and the hilarity /humiliation of having your friends hold you up on the way back down to the van again.

* sudden onset Coldness /extreme fatigue that was ONLY relieved by at least 45mins lying down under a big blanket .

*feeling REALLY pissed off that even though i still really want to paddle my canoe round that headland .. or go on the 7 mile 'cross bay walk' .. and often 'feel' well enough to do it ... it would be pretty irresponsible to try .

Oh yes .....

* ... questioning yourself that there must be 'something else wrong with you', because everybody 'medical' you meet gives you the distinct impression that being hypothyroid is really just a very mild, easily fixed problem, that causes no more symptoms than of 'feeling a bit tired, or colder than others' .... that's a very common thing too.

I agree with mstp .... it is very much like trying to drive a van and trailer up Kirkstone Pass in 3rd

[JonnyA in reply to tattybogle]

Thanks for that. Had to look up Kirkstone Pass as it rang a bell and I couldn’t place it. As soon as the map loaded I knew it straight away - one of my favourite pubs in England right at the top there.

I remember the road well too. Great analogy!

[tattybogle in reply to JonnyA]

have memories of being up there in filthy weather and drying my motorbike gloves by the fire .... then forgetting to keep an eye on them and shrinking the fingers ...oops.

[klr31]

I felt terrible for much of the time before I was optimally medicated.

Karen