Honestly I was bowled off my feet with what this Endo said.
I’m pregnant, 9 weeks, and I got a call following my booking appointment.
I was expecting an Endo to call and start giving me trouble about me being on t3 only and tell me I’m killing my baby etc etc.
They called and want to support me!! She said they can test my t3 levels through pregnancy and they can even prescribe me t3 - though pregnancy and forever more!!!!
What?!?!?
She said things are changing - a couple of years ago most endos didn’t know much about t3, but there’s a lot more spoken about it at conference now - and our CCG will allow an Endo to prescribe it. Not sure that applies to all CCGs but it does here!
When I asked before and was denied t3 I was in London (after a guys hospital Endo confirmed I needed it). I’m now up north in Calderdale. Who knew the north was so progressive?!?
Tbh I’m a bit nervous about trusting her and going back to the nhs managing my thyroid after all the bad things that happened. But it would save me a lot of money so I’m thinking about it.
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Frances0008
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Well done and I'm sure you will find a great benefit on T3. I did and the very first addition of T3 to T4 changed my symptoms/health immediately. I eventually went onto T3 only and am fit and well.
On levo I had continual severe palpitations that the cardiologist couldn't fathom why and was considering putting an implant in my heart to 'see' what was going on.
Just at that time T3 was added and I had no need to see Cardiologist again.
I then sourced my own T3 which was much cheaper than the NHS paid. It then became difficult to do so.
T3 is the 'active thyroid hormone' needed in our millions of T3 receptor cells, the brain and heart contain the most as you are probably aware. I think the Endocrinology are beginning to wake up as they've now seen how effective T3 is for patients who aren't well on T4. Especially the change in patients whose T3 was removed
T4 is 'inactive' and has to convert to T3 which some cannot do so effectively.
Maybe the endocrinologists are changing their minds when they see an immense change for the better in their patient for whom they've trialled T3.
Look after yourself now that you are pregnant and wish you a happy pregnancy.
Thank you shaws. I do not have an adverse reaction to t4 as such, but I convert extremely poorly. If my t4 is at the top of range my t3 would be barely scraping bottom of range. The only time I ever felt ok on t4 was when I was more than double the range (a blip early on with my gp because she was very lapse at checking my levels), but of course at that level of t4 I wasn’t ovulating at all and I had extremely high oestrogen. My t3 was around mid range then tho. Essentially t4 is basically ineffective for me, and it just hangs around in my blood messing up my sex hormones so I can’t have a babies! High oestrogen also has other dangerous side effects too. I tried combo t4/t3 but I still had high oestrogen from that and had only weak ovulation (my progesterone showed ovulation but very weak). It wasn’t until I went t3 only and got my levels to 70% range that I got pregnant (progesterone levels more than doubled at ovulation). A long journey but I’m very glad I am finally pregnant and an early scan showed very healthy progress.
well, as they say up north " 'Ecky thump ! " That's encouraging to hear.Cue lots of people looking up Right Move for Calderdale.
....You could always get them to pay for the T3 but ignore what they say about dose and continue to top up yourself if they don't give enough. Seems worth a try. But i agree it's a bit daunting if you've been well enough on DIY without their interference.
Haha house prices here are very reasonable too! Does take away the stress of worrying my supplier will disappear off the face of the earth as has happened before! And as you say I can always carry on monitoring and adjusting myself if I need to - just allow them to pay for the bulk of it. Im so paranoid these days when it comes to making sure I have a supply I doubt I’ll ever be able to get over the habit of stockpiling the stuff tho! !
quite wise .. i now have 2 months NHS Levo 'in hand' (by hook or by crook!), even though there's no problem with knowing it will be repeated. I just like the freedom of knowing i can adjust dose slightly myself if i see fit, and then see what NHS bloods say afterwards.
So much of 'feeling disempowered by thyroid disease' is not to do with the effects of the disease itself , but to do with feeling like some GP you may not even know has the power to 'adjust your life'
It's my life , and i'd rather adjust it myself.. regardless of who's paying for my hormone.
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