Expected to feel worse!: Hi all! I’ve been... - Thyroid UK

Thyroid UK

117,101 members135,896 posts

Expected to feel worse!

cazmania7
cazmania7

Hi all!

I’ve been taking 0.5ml of liquid levothyroxcine instead of 5ml! My mistake and gradually increasing back up to have a proper trial of liquid levothyroxcine.

Took a test just out of curiosity and my TSH is nearly 60!

Expected to feel much worse than I do. It’s very strange isn’t it. I feel just as rough as normal to be honest.

I won’t ponder too much on it but just look forward to what the trial may bring!

23 Replies

Oh dear! I did have a giggle though! I definitely felt better with a TSH of 28 than I did when i was in about 75 mcg levo, mind, so I get where you’re coming from. That fT3 of yours makes me wince, though! My body aches just looking at it!

FancyPants54
FancyPants54 in reply to Lotika

Did you really suffer when you increased Levo to 75 too? I was horrendous, I was chatting to someone else on here the other day and she said the same. What is it about 75mcg Levo that does that to us?

Out of interest this other person is now on combo treatment, I've recently started combo treatment. What about you? And might it be connected to feeling dreadful on 75 Levo.

Lotika
Lotika in reply to FancyPants54

I started on 75 mcg when first diagnosed and went down to 50 for a few days and back up to 75... I just remember it being worse than before! I then got to 100 mcg and I’d have days of feeling OK on that. Yup, you guessed, I am one of those on an NHS T4/T3 trial - currently at 75 mcg T4 and 2 x 5 mcg T3.

I hadn’t thought to connect the fact that I’m not right now to the 75 either. I guess one of the issues might be that on 75 I invariably get prescribed two different brands of T4. Must ask the GP to stop that before the next prescription in case it makes any odds to anything. I don’t think so really, but who knows. I have been very up and down since moving from 50 mcg (+T3) to 75, but there are other factors at play, like some antibiotics I desperately wish I hadn’t taken! I seem not to be absorbing medication so well since :(

FancyPants54
FancyPants54 in reply to Lotika

That was quite a large start I suppose. You have the 25mcg tablet issue, there are only a couple of brands of those. You could try asking for all 50's and cut some in half.

It's good that you get to trial the T3, but 10mcg a day is low. I can't feel 10 at a time anymore. I'm on 25 and about to go to 30, probably tonight as I'm dead today. I reduced my Levo from 125 to 100 a week ago and I feel almost unable to move, but amazingly, the hideous burning, stinging and numb toes and balls of feet are much better!! I don't understand. I've never felt good on Levo. I think I need to drop it as low as I can and swap for T3. Shame I have to buy the stuff!

Lotika
Lotika in reply to FancyPants54

I actually use all the 25s for a few weeks and then all the 50s by halving one, so that I am completely one brand then the other... I can’t see that it makes a difference... I’d just prefer to stick with one, though as it seems more sensible. Will ask when I’m due a repeat. Yup, it might be that T3 only is in your future! It’s annoying that we’re all so different in how we respond to hormones, isn’t it?! Otherwise they’d know how to dose us!

cazmania7
cazmania7 in reply to Lotika

He he! Doesn’t seem to matter where my T3 is sadly but I’m hoping that once on the right dose of liquid levothyroxcine I’ll feel some benefit!

Felt rougher than normal today so this might be the start of the lack of levo come-down 😱

Lotika
Lotika in reply to cazmania7

Oh no! I’m still laughing for some reason - probably because I am feeling quite sorry for myself today and there’s no way my numbers are anywhere near as ugly as yours, so it puts it into perspective perhaps! Are you just switching straight to the 5ml you should have been taking? I don’t know how liquid levo works!

cazmania7
cazmania7 in reply to Lotika

Well I think I’ve effectively gone from 125mcg Levo a day to 12mcg so I guess I’ll need to increase gradually.

I think I’ll take 50mcg a day until I can have a chat with pharmacist next week!

Dreading work this weekend though now as imagining how rough I might feel 🙄😂

Liquid levothyroxcine is the same as pills I guess but think some take it if they don’t get along with the excipients in pills. I’m just trying it out of desperation really!

Lotika
Lotika in reply to cazmania7

Oh dear me - terrifying! I hope it doesn’t take you too long to move it back!

cazmania7
cazmania7 in reply to Lotika

I just went through my old files and in 2014 I had a TSH of 74 and was put on 100mcg levo straight away so if it was ok then I’m guessing it would be ok now.

I’ll take 100 tomorrow I think. Fun and games!

helvella
helvellaAdministrator in reply to cazmania7

I don't think you should immediately go to your target dose - but 50 micrograms, when you have already been treated on more than twice that dose, is probably not optimum.

I suggest that if you took 50 first thing in the morning, and your body starts to get used to it again, it could romp through most of that by the end of the day. You might find yourself changing your mind very quickly. Be thoughtful.

cazmania7
cazmania7 in reply to helvella

I’m surprised my GP didn’t call me to offer some guidance once I emailed them with my mistake...

I did freak out a minute ago when I read about thyroid coma but calmed myself down!!

Thanks for your advice helvella, I will see how I go tomorrow and maybe do 75. What a pickle!

helvella
helvellaAdministrator in reply to cazmania7

I agree that it is disappointing your GP didn't contact you.

This is very much in the "we are all individuals" territory.

Be prepared to adjust based on experience. But don't go mad!

cazmania7
cazmania7 in reply to helvella

I guess I’m basing it on how we are encouraged to take T3; 5mcg increments over two week periods but I think levothyroxcine might be somewhat different. As I say I just got my file out and they whacked me straight on to 100mcg levo back in 2014 so must be safe enough?! My TSH was 74 back then. It was after rai.

Boy do I regret that 😂😱

jsy_girl
jsy_girl in reply to cazmania7

OMGGGGGGGGG 125 to 12... how long were you on this low dose?

I agree with your assessment though, I never seem to feel any better regardless of levels. I assume it’s because I’ve never found that perfect sweet spot. Fairly sure I felt better this time last year when I was only on 50mcg levo with no thyroid gland. Makes zero sense. I do wonder if my adrenals were compensating though and maybe yours have done the same?

cazmania7
cazmania7 in reply to jsy_girl

Hey buddy. Seven weeks like this!

I’m working from home now which is less stressful for me. It’s entirely possible that had I been living my normal life I’d be on the floor!

My poor little adrenals. I know that I have super low cortisol so they’re just shot as it is anyway I think.

I do feel really minging today though I have to say 😂😱😶

jsy_girl
jsy_girl in reply to cazmania7

Oh wow!!!! Just as well you realised now. Did you figure it out only when you got the bloods?

I think sometimes I question what came first, how crap I felt or the bloods. I def didn’t feel so bad last year when my TSH was out of range until I knew it was out of range!!!

Awww your poor adrenals.

Well sounds like you need to go easy on yourself until you have a couple of weeks of T4 back in your veins! This is a lesson to us all in reading the instructions. Oh wait, we mostly never get good instructions for the thyroid which is why we are all on this forum... 🤣🤣

cazmania7
cazmania7 in reply to jsy_girl

I think I looked at the pippet tube thing and it occurred to me that there were two 5’s on it....0.5 and 5.

Then i thought hmmm. I’d been really sure to ask the dose etc too but just goes to show I’m not ever 100% with it. No idea how I drive sometimes lol.

Think I’ll be scared taking the correct dose now lol but it’s only a teaspoon full anyway!! I’ll triple check when I collect new bottle.

I would be lost without this forum. Lost of locked up!!

jsy_girl
jsy_girl in reply to cazmania7

100%. This forum has been an absolute life saver, support group, wealth of information and way of channeling my thoughts and feelings.

Oh god, we’ve all been there, that dawning realisation... “oh am I meant to?...have i...? Oh....let me look at that again... CRAP”

I did the same with magnesium dosing. Was taking twice as much as meant to. No idea how I worked it out. It’s the realising eventually that counts... maybe...

Eek, Caz. :)

Well, on the bright side—you definitely need thyroid hormones! No doctor could ever chalk that up to “depression” again. Actually, some might try....

Anyway. :) With a bit of a luck you’ll start to feel much better rather than worse, now that you’ve started to up the dosage.

cazmania7
cazmania7 in reply to Jazzw

Agreed!

Thanks buddy!

Wishing you well also 😀

cazmania7 Hiya, I take liquid levothyroxine (at least 6 Months now as I have bad effects from excipients in tablets.

I always use a double sided plastic spoon to dose (I can't get on with the pipette). 5mls on one side; 2.5mls on the other.

I was taking 1 x 5mls and 1 x 2.5mls for a few weeks;

Now I take 5mls in the early hours e.g., 4-5am, and 5mls late evening alternate days so:-

7.5mls one day, 10mls the following day in split doses

I'll find out if my concoction works when I have bloods done at the end of this Month.

Good luck.

👍🙂

cazmania7
cazmania7 in reply to Thyb

Oh good luck!

I tried the spoon but found it was spilling as I poured it!

You may also like...