Update Time!....: Hiya ! I thought id write... - Thyroid UK

Thyroid UK

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Update Time!....

babycatcher7572 profile image
10 Replies

Hiya !

I thought id write another update on my progress so far. I'm sorry i haven't been around the forum much....my life hasn't settled down yet.

I have been back at work since Feb and now back in my rightful place on the normal birth team. I am managing to work 3x 8 hr shifts a week. I find i'm getting through my shifts well and my confidence has returned.... which is a relief. My memory plays tricks on me still but i'm managing it ok, mostly with humour!

I'm now on 62.5 mcg of T3 in 3 doses through the day. 25 mcg am, 25 mcg lunch time, 12.5 mcg evening. I stopped taking the levo 4 weeks ago but i'm not sure whether or not i should have????

My last ft4 result was 6.0 (12-24). Dr P didn't really say what to do....put it up, down or stop....so i stopped, thinking it was probably just keeping my weight on.

For 3 weeks i've not noticed any differences but this last week or so i am becoming very tired. After work i have a 40 min drive home. After 10 mins i'm desperate to sleep...a most uncomfy journey!

I sleep when i get home (5-6 pm) But it is a strange sleep.....my body seems to shut down and my eyes are closed but remain very aware of noises around me...the telly, the kids talking. It lasts for 20 mins and i can almost tell myself to wake....very weird but i do feel slightly refreshed after? I am sleeping well at night now and getting up in the mornings is easier but not great.

Symptom wise....My temps are random....36.3 ish basally, rising to normal at work, then dropping to 36.6 in the evening. My skin and hair are much better and have a period just once a month now. I think joints are better but still not fixed. I had an echo on my heart which was clear and have worked out that my tachycardia appeared when i needed my next dose of t3!...., my breathlessness is also better, glucose test normal, coeliac test normal.

My GP is still useless, my occy health dept insisted that i 'have more medical input'......to manage the fatigue side but i have been trying to do that for about 2 years now without success. I asked for a referral to someone who specializes in fatigue......i rang today....nothing sent tut! Typical....

I went off on my equine art course for 4 days...alone...B n B...ALL BY MYSELF!....how lovely!

Tested my adrenals whilst driving through the Welsh Elan Valley in a Fiat 500... on the mountain road..eeekkk! It was getting dark and misty and the roads were narrow and high up....sheep everywhere....no mobile signal ........and they failed miserably!

Bottom lipped wobbled the majority of the way.....hyperventilating....trembling. I got some very strange looks from the locals who drove huge 4x4's....i wished i brought mine!! Obviously made it through unscathed and really enjoyed learning to use my pastels. This was May...i havent had chance to pick up a pencil yet as on my return one of our horses was sick. We are also moving house again in a fortnight but this shouldnt be too bad this time! ahem

And finally i'm much brighter mentally .....which allows me to plough on , feeling my way through all this..... alongside you all. I wish you well, as always

Thanks for reading x x x x

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babycatcher7572
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10 Replies
helvella profile image
helvellaAdministrator

Good to hear from you.

That does sound a considerably better place than you were a few months ago.

Rod

Chippysue profile image
Chippysue

wow, glad work is ok, equine art course! - want to hear all about that! very interesting, it sounds like you have improved more than you realise.

Hope you can still make it on Saturday :-)

babycatcher7572 profile image
babycatcher7572 in reply toChippysue

hi Suze...yes i can :)

lilliput profile image
lilliput

Love the pic!

Stourie profile image
Stourie

It is good to hear from you and you're right it has been a long time. I'm so glad that you are feeling a bit better and coping with work. It does sound as if you need more t3 but Dr P will keep you right. When I need more t3 I get palpitations. Hope you keep on feeling even better.

Jo xx

62.5mcg isn't a huge dose, although when I was on T3 only I didn't need very much more once my Reverse T3 had gone, (around 75) but knowing how difficult it is to be stable on T3 only, I would not want to be on it alone permanently unless I *really* needed to be, as your tachycardia sounds exactly like I was, (although some of the time I would "feel" as though it was beating hard and fast, but on measuring it it wasn't particularly fast!) and exactly why I was using 4x a day dosing to keep it under control (5x was even better, but you have to sleep sometimes!), even then, opening out the timing between to as close to a full 6 hours between each dose was essential for me. The half life of T3 is short, although nothing like as short as a few hours, so it can't just be that, just I was advised to do it by others who had tried it, and found it much better.

I take 20mg of Hydrocortisone in split doses as my adrenals were a bigger problem than thyroid in the first place, so had none of the crashy feeling while I was taking T3 only, though that really does seem to show through for many people with T3 only. I know Dr. P is more likely to suggest adrenal supplements - Are you using any?

I use NDT now, and much prefer the greater stability (feeling of security!) it gives me (because of theT4) although because of it's T3 content I still do 3x daily dosing, and keep it 8 hours apart where I can; it means none of the same ups and downs; if it was me, I really would be looking to put a proportion of T4 (Levo or NDT) back into the equation somewhere unless there is a good reason not to.

Margo profile image
Margo in reply to

How do you know you may have RT3 issues Picton, what are the symptoms, and how do you right it. Would it also affect somebody without a thyroid?

in reply toMargo

Well, I was on no treatment, and was a mass of hypo symptoms, yet T3 and T4 figures only sightly low, TSH 2.5 up to 3.5 usually with the odd one at 5! All over the place, but only "subclinical" at worst.

Testing showed high RT3, (rather hard to get and expensive then too, and it took ages!!) and on the second attempt on T3 only (I bottled out the first time when I thought I was very hyper, even though I wasn't!) it went as planned "cleared" and I needed a lower dose thereafter. Stayed on a couple of months then weaned off, hoping I would not need any replacement as I was only slightly high TSH and not too low T3.

This was fine for a while, but the symptoms returned, so I decided to use NDT and have been better and more stable since. (apart from a thyroiditis. Dr thought it was viral)

Margo profile image
Margo in reply to

Thanks Picton x

valerie profile image
valerie

Perhaps that little bit of Levo you were on gave you a little bit of extra T3 which your body is missing now if you've been off it a month.....Valerie

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