what a difference a small increase has made - Thyroid UK

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what a difference a small increase has made

mandy72 profile image
21 Replies

for a few days ive been on 25mcg tiromel in the morning and 6.25mcg about 4pm just before my crash

yesterday was a day from hell i really had bad air hunger to the point i was tempted with A/E, pulse was allso high 80 low 90 and a throbbing head

today i decided to add 6.25mcg to my morning dose pulse is in the 70's and i can breath

im even crocheting

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mandy72 profile image
mandy72
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21 Replies
Clutter profile image
Clutter

Mandy, that's great, 37.5mcg T3 is equivalent to 112.5mcg T4 so you're beginning to get a reasonable amount of hormone in. Has the 4pm dose stopped the crash?

mandy72 profile image
mandy72 in reply to Clutter

wow thats some amount, ive never ever been on more than 75mcg of levo and i felt awful on that, that was when i switched to NDT

The 4pm dose helps a little but ill hold it for a few more days because of the morning increase and if i still feel awfull ill add another 6.25mcg at 4pm

Clutter profile image
Clutter in reply to mandy72

Mandy, did your GP want you on 2 or 3 grains NDT? 25mcg T3 is roughly bioequivalent to 1 grain.

mandy72 profile image
mandy72 in reply to Clutter

he wanted me to go on to 3 grains

but it was at the time i stopped tolerating it so i landed up decreasing to 1/4 to 1/2 grain daily then eventually stopping alltogether

Clutter profile image
Clutter in reply to mandy72

Mandy, sounds like you have a problem tolerating thyroxine. Hopefully the T3 will sort you out once you are optimally dosed. Keep dose increases low and slow. Fingers crossed you've cracked it now.

mandy72 profile image
mandy72 in reply to Clutter

i never ever did well on thyroxine

did well for 8 months on NDT

i did saliva test for adrenals when i stopped tolerating NDT and all 4 came back high so i assumed it was that but i guess it could be T4

i seem to have crashed slighly earlier today but didnt sleep well last night so im blaming that for tday but will slowley increase and see how things go

nightingale-56 profile image
nightingale-56

Pleased you are having a good response to Tiromel. I have been on it for 4 weeks now and am having a good reaction too. Hope you continue to improve.

mandy72 profile image
mandy72 in reply to nightingale-56

thankyou

hope you do well too

Good to hear you're doing well Mandy72. Sometimes it's scary increasing dosage as sometimes I mistakenly think higher heart rate means too much T3, only to find heart rate lowers with more T3, which is nice. I find a quick temperature check confirms I'm actually hypo and not overmedicating. The T3 I get is from NDT mind you.

in reply to

Above reads "...with more T3, which is nice". That should say

..., WHICH IS REALLY, REALLY, TOTALLY AND UTTERLY BRILLIANT!!!

mandy72 profile image
mandy72 in reply to

i was on NDT but had to stop

fingers crossed T3 only works as cant go on like this for much longer

i tend to get fast pulse and air hunger as my main symptom allthough drs allways put that down to weight

in reply to mandy72

I hate air hunger with a passion, it's probably the symptom I would get rid of first if I could choose..if only...mentioned it to Dr and they suggested weight loss tablets. I've been walking a lot more recently and been more active, and the air hunger has returned to bite me on the arse, even though not quite as bad touch wood.

fingers crossed T3 only works for you, it sounds as if you've had a positive experience so far so you should be on the right track back to normality. If you can remember what normal is, I don't feel too far away on certain days and then quite a way off on other days. Hang in there.

mandy72 profile image
mandy72 in reply to

air hunger is the worst its scarey at times and i sit breathing like ive run a marathon and ive only walked up the stairs for a wee lol

i do like how T3 seems to work allmost straight away so managing doses hopefully will be pretty straight forward

i think i remember normal

i wanted to walk round town, i wanted days out with the kids, i looked forward to things

now i want to sit and stay in and sometimes being olone is better

in reply to mandy72

Sounds like you've got it really bad but it's reassuring that the T3 seems to be working for you. I still stay in a lot but my outlook has changed for the better with the addition of T3, although I still have a way to go yet.

mandy72 profile image
mandy72 in reply to

ill get there one day

it dont help where i suffer with a skin condition called Hidradenitis too and when my levels are off i get bad flare ups and they dont seem to heal as well as they used too, ive had one now going on 6 weeks and it just aint going, no point seeing dr as they dont know anything about it so i kind of just take each day as it comes

you never know a few more weeks on T3 and i might just want to go out

in reply to mandy72

I've never heard of Hidradenitis, sounds pretty awful. Hopefully you want to go out soon. I've been out and overdone it so some hypo symptoms came back over weekend. Better today but not mint. Let us know how you get on.

mandy72 profile image
mandy72 in reply to

its boils/abcesses that come up under arms, under boobs, tops of legs and down below

another autoimmune thing, ive had it 26 years now, they flare up and then burst and leave nasty scars

ive upped my dose again

37.5mcg am

12.5 about 4ish

and 6.25 at 8ish depending on how im feeling, heart rate and breathing mainly, may need to increase my 4ish dose soon but ill see how things go

been out shopping the last 2 days and felt pretty good

hope you feel better soon its horrible when we overdo things, takes days to recover

humanbean profile image
humanbean in reply to mandy72

Have you ever heard of or looked into Behcet's Syndrome? Your reference to boils made me wonder about it. Do you get loads of mouth ulcers too?

There is a community for Behcet's on HealthUnlocked :

healthunlocked.com/behcetsuk

It may be a complete red herring, but just thought I'd pass this on.

mandy72 profile image
mandy72 in reply to humanbean

ive never heard of it if im completely honest, dont get mouth ulcers as a rule but have been getting abcesses under teeth a few times the last year or so

ill take a look thanks

humanbean profile image
humanbean in reply to mandy72

This may help :

behcets.org.uk/information-...

in reply to mandy72

Great news you've been out shopping.

It sounds nasty that with boils/abcesses etc. what do you take for that?

Re: T3 dosage. what did you take before you started T3 only? And what dosage / lab results? Also what starting dose did you use on T3? Just interested as I'm doing OK just not great and may consider T3 only after I've experimented with NDT for a bit longer. Been 3 & 1/2 months on it on top of levo. May have to drop synthetic completely (don't know) but haven't got time to feel ill anymore as daft as that sounds - it's like a catch 22 do I stick with OK or twist and feel great or worse!!

My blood results a few weeks ago looked pretty good but I'm still not good particularly after loads of work (non physical) and then more walking and cooking. Did loads over weekend and air hunger came back and aches/pains etc. Irregular heart rate didn't return so that was good.

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